Life-Sustaining Technologies and the Elderly

July 1987

NTIS order #PB87-222527
Recommended Citation:

U.S. Congress, Office of Technology Assessment, Life-Sustaining Technologies and the Elderly, OTA-BA-306 (Washington, DC: U.S. Government Printing Office, July 1987).

Library of Congress Catalog Card Number 87-619835

For sale by the Superintendent of Documents

U.S. Government Printing Office, Washington, DC 20402-9325

(order form can be found in the back of this report)
Foreword

In September 1984, OTA received requests from both the House and Senate Aging Committees

to study the implications for their constituents of medical technologies that can sustain life in

patients who are critically or terminally ill. Both Committee Chairmen, Senator John Heinz and

Congressman Edward Roybal, expressed concern about elderly persons whose rights as patients

and dignity as citizens are, or are feared to be, jeopardized —either by unwanted aggressive medical

treatment or, conversely, by financial barriers to treatment.

The Senate Special Committee on Aging cited “new questions about the quality of life” that

accompanies increased survival made possible by “current and emerging methods of life support .“

The Committee requested a “thorough review of the ethical dilemmas concerning life and death

decisions that are faced by health care practitioners, elderly patients themselves, and concerned

family members. ” OTA was asked to explore the special problems related to treatment decisions

for older patients who are cognitively impaired and, thus, unable to make their own decisions,

and to compare alternate methods for specifying in advance one’s wishes regarding treatment.

The Senate Committee also expressed interest in comparative reviews of the various institutional

and noninstitutional settings in which life-sustaining technologies are used.

The House Select Committee on Aging identified as the key issues those related to ‘(financial

access” to life-sustaining technologies and the “right to choose.” Of special interest were ways

to ensure that elderly persons retain autonomy in treatment decisions, and the roles of families,

providers, and government in supporting patient autonomy. Ethical issues related to the use of

technologies that are currently available or anticipated were to be reviewed to advance understanding about care of the critically and terminally ill elderly. OTA was asked to assess the costs

to patients, their families, and the public, and to lay the groundwork for policies about Medicare

and Medicaid reimbursement of these technologies. Also of interest to the House Committee were

the growing use of home care and issues related to quality of care, especially in the home.

In response, OTA has conducted a study of a wide range of topics, some of which have recently

been receiving a great deal of scrutiny inside and outside the government. In order to derive

information specific enough to guide possible congressional action and to be responsive to the

requesting Committees, this examination of the issues is specifically tied to particular life-sustaining

technologies and their use with patients who are elderly. At the same time, much of this information

is applicable to life-sustaining technology in general and to citizens of all ages.

OTA has tried to provide a strong sense of the human dimension in this report. In addition

to descriptions of what is theoretically possible and statistically documentable, much information

is presented about the experience of individual patients and their families. The case examples,

of which there are many, are true stories. While no case is “typical,” every one expresses the

potential benefits or the potential burdens of life-sustaining treatments. Each makes clear and

poignant the needs of patients, their families, and caregivers who are faced with decisions about-or

the consequences of decisions about—the use of life-sustaining technologies.

iii
Advisory Panel: Life-Sustaining Technologies and the Elderly

John W. Rowe, Chairperson

Chief, Gerontology Division, Department of Medicine

Beth Israel Hospital, Harvard Medical School

David Axelrod

Commissioner

New York State Department of Health

Abraham Brickner

Director

Health Services Research

and Program Development

The Cleveland Clinic Foundation

Daniel J. Callahan

Director

The Hastings Center

A. Edward Doudera

Harmon, Jones & Sanford

Camden, ME

Nancy N. Dubler

Director

Division of Legal and Ethical Issues

in Health Care

Montefiore Medical Center

Rose Goldstein

Director of Social Services

Jewish Home and Hospital for the Aged

Bronx, NY

Val J. Halamandaris

President

National Association

Washington, DC

William A. Knaus

for Home Care

Director of I.C.U. Research

The George Washington University

Medical Center

Steven Lazarus

President

ARCH Development Corp.

The University of Chicago

Joanne Lynn

Associate Professor of Health Care Services

Division of Geriatric Medicine

The George Washington University

Medical Center

Catherine P. Murphy

Associate Professor

School of Nursing

Boston College

John J. Paris

Professor

Department of Religious Studies

Holy Cross College

A-J Rock-Levinson

Executive Director

Concern for Dying

New York, NY

Anne A. Scitovsky

Chief

Health Economics Department

Research Institute

Palo Alto Medical Foundation

Victor W. Sidel

Distinguished University Professor

of Social Medicine

Montefiore Medical Center

Albert Einstein College of Medicine

R. Knight Steel

Professor of Medicine

Geriatrics Section

Boston University Medical Center

William A. Wendt

Executive Director

The St. Francis Center

Washington, DC

Terrie T. Wetle

Assistant Professor of Medicine

Division of Health Policy

Harvard Medical School

Mary Opal Wolanin

Professor Emerita

College of Nursing

University of Arizona

NOTE: OTA appreciates and is grateful for the valuable assistance and thoughtful critiques provided by the advisory panel

members. The panel does not, however, necessarily approve, disapprove, or endorse this report. OTA assumes full

responsibility for the report and the accuracy of its contents.

iv
OTA Project Staff—Life-Sustaining Technologies and the Elderly

Roger C. Herdman, Assistant Director, Health and Life Sciences Division

Gretchen S. Kolsrud, Biological Applications Program Manager

Claire W. Maklan, Project Co-Director

Katie Maslow, Project Co-Director

Robert A. Harootyan, Project Director1

Gladys B. White, Analyst

Hindy J. Shaman, Research Assistant

Blake M. Cornish, Research Assistant

Judy K. Kosovich, Legal Analyst

Anne M. Guthrie, Research Assistant

Everett C. Hills, Research Assistant

Support Staff

Sharon Kay Oatman, Administrative Assistant

Linda Ray ford, Secretary/Word Processor Specialist

Barbara Ketchum, Secretary

Kerry Kemp, Division Editor

Chris Elfring, Editor

Special Contributors

Nancy B. Cummings

Kathryn S. Aultman

Lisa J. Raines

1Until June 1986.
Contents

Chapter Page

l. Summary and Policy Options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

2. The Context of the Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

3. Legal Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91

4. Ethical Issues. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........141

5. Resuscitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .................167

6. Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....205

7. Dialysis for Chronic Renal Failure . . . . . . . . . . . . . . . . . . . . . ...................249

8. Nutritional Support and Hydration. . . . . . . . . . . . . . . . . . . . . . ..................275

9. Life-Sustaining Antibiotic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . .............333

10. Manpower and Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .......357

Appendix Page

A. Method of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .....................393

B. Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .............397

C. Future Developments in Life-Sustaining Technologies. . . . . . . . . . . . . . . . . . . . . ....400

D. International Directory of Bioethics Organizations . . . . . . . . ...................419

E. NIH Workshop Summary: Withholding and Withdrawing

Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .........428

F. The Effect of Normal Aging on the Measurement of Nutritional Status . .........434

G. Recommended Antibiotic Regimens for Elderly Patients With

Life-Threatening Infections . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......437

H. Glossary of Acronyms and Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .441

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....451
Chapter 1

Summary and Policy Options
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Selected Life-Sustaining Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Focus on the Elderly Population . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Who Are the Life-Threatened Elderly?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

The Specter of Rationing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

The ’’High Cost of Dying”. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Quantity v. Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Selected Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Current and Future Resource Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Quality of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Access to Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Decisionmaking Problems and Processes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Congressional Issues and Options. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Access to Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Decisionmaking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Quality of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

B o x

Box

I-A. Principles for Decisionmaking Regarding the Use of Life-Sustaining

Technologies for Elderly Persons, as Developed by Project

Advisory Panel . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Figure

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4

5

6

8

8

9

10

10

11

15

16

19

28

28

30

32

35

Figure No. Page

l-1. Heterogeneity of the Life-Threatened Elderly . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Tables

Table No. Page

l-1. Utilization of Life-Sustaining Technologies for Patients of All Ages, and for

Elderly Patients, in All Settings Combined . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

l-2. Charges for Life-Sustaining Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Chapter 1

Summary and Policy Options

INTRODUCTION

The dramatic advances in life-sustaining medical technologies during the past three decades

have been accompanied by rapid expansion in

their availability and use. As equipment and procedures have been refined and experience accumulated, the necessary personnel, facilities, and

reimbursement have expanded, and the clinical

criteria guiding use have been broadened. The

types of patients who become candidates for lifesustaining treatments have changed, and their

numbers have increased sharply. Many of these

patients are elderly. As the population ages, as

once “extraordinary” measures become commonplace, and as ever-more powerful technologies

emerge, it becomes increasingly important to

understand the problems as well as the potential

associated with the use of these technologies and

to devise policies that reflect this understanding.

Technologies that support or replace the functioning of a vital organ are capable of saving and

sustaining life and, sometimes, capable of restoring health and independence. However, an individual’s response to treatment can seldom be predicted with certainty; thus, it is never clear that

a “life-sustaining” technology will sustain the life

of a particular patient or, if it does, for how long.

The quality of the life that is sustained may be

even harder to predict. Patients and other interested parties may evaluate differently the benefits and burdens associated with treatment versus

nontreatment and with one treatment versus

another. An important factor that further complicates matters is that many patients with lifethreatening conditions are not able to understand

their treatment options or to express preferences

regarding them.

Public discussion about the use of life-sustaining

technologies, either for individual cases or health

care policy, is relatively new, but newsworthy. At

any one time, many thousands of elderly persons

are receiving life-sustaining interventions. The vast

majority of cases go unnoticed except by the patients, family members, and others directly involved in making and living with difficult treatment decisions. However, a few of these cases gain

notoriety and public attention as it becomes apparent either that treatment was unwanted or futile

or, conversely, that some new medical breakthrough or personal triumph over adversity has

occurred. Under public scrutiny, these cases make

clear the interdependence of private health care

decisions and the public policies that determine

whether treatment choices are legal, ethically

acceptable, economically feasible, and fair.

The legal, ethical, and economic questions raised

by decisions about the use of life-sustaining technologies have been studied by scholars and policymakers both inside and outside the government. The first major government publications

addressing access to and decisions regarding the

use of life-sustaining treatment were prepared in

the early 1980s by the President’s Commission for

the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Related research

has been performed or sponsored by the Office

of the Surgeon General, the General Accounting

Office (GAO), the Congressional Budget Office

(CBO), the National Institutes of Health (NIH), and

the Office of Technology Assessment (OTA). These

studies demonstrate the lack of consensus regarding appropriate use of life-sustaining technologies

and the lack of consensus even about appropriate procedures for making those decisions.

This assessment draws on the earlier studies,

but it is different from them in two important

respects. First, it is focused on particular technologies, The discussion goes beyond abstract considerations related to the care of the critically and

terminally ill to identify specific problems and potential solutions related to selected technologies

used to treat or manage life-threatening conditions. Second, this assessment is focused on a specified age group, i.e., persons over age 65, rather

than on all potential patients. The major purpose

is to provide an array of options for public policy

that will support wiser clinical decisions about the

3
4 ● Life-sustaining Technologies and the Elderly

use of these technologies. Toward this goal, the

assessment presents information about topics as

diverse as the cost of equipment, competing ethical principles, the experience of patients and their

families, and the training of health care professionals. The assessment synthesizes available and

new information, from a new perspective, and

from this it develops a set of issues and related

options for congressional review.

Selected Life-Sustaining

Technologies

Life-sustaining technologies are drugs, medical devices, or procedures that can keep individuals alive who would otherwise die within

a foreseeable, but usually uncertain, time period. While these technologies share some common ethical, legal, and health care delivery problems, each has unique characteristics that either

raise special questions or suggest possible solutions. Five specific technologies used to treat or

manage life-threatening conditions are the focus

of this assessment:

1. Cardiopulmonary resuscitation (CPR) refers to a range of technologies that restore

heartbeat and maintain blood flow and breathing following cardiac or respiratory arrest.

Resuscitation procedures range from basic

life support, which uses manual external

cardiac massage and mouth-to-mouth ventilation, to advanced life support, which may

include application of prescription drugs and

sophisticated devices such as an electrical

defibrillator, temporary cardiac pacemaker,

and mechanical ventilator. Resuscitation has

extremely wide potential application because

it can be applied to virtually any person whose

heart stops beating,

2. Mechanical ventilation is the use of a machine to induce alternating inflation and deflation of the lungs, to regulate the exchange

of gases in the blood. The most common type

of ventilator (or “respirator”) delivers inspiratory gases directly into the patient’s airway

through tubing that connects the patient to

the machine. The technology is used to sustain patients whose spontaneous breathing

is inadequate or has stopped altogether due

3.

4.

5

to acute or chronic diseases of the neuromuscular, necrologic, or pulmonary system, or

due to anesthesia or trauma. This assessment

is particularly concerned with mechanical

ventilation that becomes prolonged o r

chronic.

Renal dialysis is an artificial method of

maintaining the chemical balance of the blood

when the kidneys have failed. The blood is

cleansed of impurities, either by cycling the

blood through a machine and back into the

patient via catheters (hemodialysis), or by

cycling dialyzing fluid into and out of the abdomen using the patient’s peritoneal membrane as a filter (peritoneal dialysis). Dialysis is used for patients in acute renal failure

and those with chronic end-stage renal disease (ESRD).

Nutritional support and hydration refers

to artificial methods of providing nourishment

and fluids. The two modes of delivery are enteral (or tube feeding), in which nutritional

formulas are delivered via a tube into the

digestive tract, and parenteral that includes

all methods other than enteral but is primarily intravenous feeding in which nourishment

is delivered via catheter into the bloodstream.

Total parenteral nutrition (TPN) is an intravenous procedure that supplies sufficient

nutrients to maintain a person’s weight indefinitely. Tube feeding and TPN are used primarily for people who are unable to take sufficient amounts of food and fluids by mouth

or who are unable to digest and absorb them

adequately.

Antibiotics are a large set of drugs used to

cure or control numerous bacterial, viral, and

fungal infections, including minor ones. Different families of antibiotics have been developed for use in combatting different types

of infections. Antibiotics maybe administered

topically, orally, intravenously, or intramuscularly, in discrete doses or continuously. All

antibiotics are potentially life-sustaining, By

“life-sustaining antibiotic therapy” OTA means

not a particular drug or family of drugs but

the use of any antibiotic against a life-threatening infection.

With the exception of antibiotics, none of the

five technologies examined in this assessment can
Ch. 1—Summary and Policy Options • 5

cure the underlying condition that precipitated

its use. Thus, among patients who receive these

interventions and survive, health status and functional capacity vary widely. While some patients

regain adequate natural function of the affected

organ, others become permanently dependent on

the life-sustaining technology (and they may be

simultaneously dependent on more than one lifesustaining technology). They may require continuing medical care and, often, other forms of

assistance.

The life-sustaining technologies OTA has studied are only a few of many possibilities. They were

selected to illustrate significant ranges across such

dimensions as burden, cost, and risk. For example, antibiotic therapy administered intravenously

is relatively painless and nonrestrictive, especially

in comparison with mechanical ventilation, hemo -

dialysis, and TPN. Mechanical ventilation frequently involves continuous, round-the-clock application, while hemodialysis is typically applied

three times per week for 3 to 5 hours per treatment. Resuscitation is, ideally, applied only once.

Costs and expenditures, which are related to frequency and duration of treatment, range from

minor to catastrophic. Available reimbursement

may be near total or minimal. The technology may

bring risks of serious complications (e.g., renal

failure associated with mechanical ventilation) or,

provided proper procedures are followed (e.g.,

to prevent catheter-related infection for TPN), it

may be generally safe. While invasiveness and high

cost may tend to restrict use, low risk and low

cost (or generous reimbursement) may lead to

overuse. All these factors bear on clinical decisionmaking.

The five technologies examined in this assessment also illustrate the variety of settings and circumstances in which life-sustaining treatment can

be administered. Most of these technologies are

now technically possible and available not only

in acute care hospitals and intensive care units

(ICUs), but in nursing homes, patients’ homes, and

other community settings. While incubation for

mechanical ventilation is usually done by highly

trained professionals in an emergency room or

ICU, some stabilized ventilator patients can manage in their own homes. Basic resuscitation techniques can be performed by trained bystanders

wherever a cardiac arrest occurs, but advanced

CPR requires emergency transfer to a hospital.

Focus on the Elderly Population

This assessment focuses on elderly persons who

are already receiving or who might become candidates for life-sustaining medical technologies.

For purposes of this assessment, the elderly population is defined as all persons aged 65 and

over. OTA recognizes and emphasizes, however that defining the elderly population on

the basis of any chronological age criterion

tends to mask the heterogeneity of that population. Sixty-five, or any chronological age, is a

poor indicator of biological function, physiological reserve, cognitive ability, or health care needs.

The use of age 65 is justified, however, by its prominence in available health and demographic statistics and its relevance to eligibility criteria in current Federal and State health care programs,

especially Medicare. To minimize the loss of analytical and descriptive rigor from using a single

age criterion, this assessment refers wherever possible to subgroups of the elderly population (e.g.,

65 to 74, 85 and over).

While many important considerations in the use

of life-sustaining technologies apply regardless of

the patient’s age, some factors distinguish the

elderly as a special population. These include:

●

●

●

●

Elderly people, as a group, are at greater risk

of life-threatening illness than younger people.

Because both the prevalence and severity of

chronic conditions and their associated disabilities increase in old age, elderly persons

who experience a life-threatening illness are

more likely than younger persons to already

be in a state of compromised health and reduced functioning that negatively affects their

quality of life.

Elderly people are more likely than younger

adults to be victims of a dementing illness,

and they have high rates of other disorders

(e.g., depression, drug toxicity) that may temporarily or permanently impair their ability

to make health care decisions.

Comorbidity (the coexistence of more than

one disease) and age-associated loss of function complicate the prognosis and treatment
6 ● Life-Sustaining Technologies and the Elderly

●

●

●

●

●

of life-threatening conditions in elderly

persons.

There are questions about the quality of

health care currently available to elderly patients. Many health professionals in practice

today are poorly prepared to care for seriously ill elderly people whose presentation

of disease and response to treatment may differ from that of younger adults.

As a group, elderly people utilize a large share

of all health care resources and consume the

largest share of public health care dollars.

Elderly people, as the major beneficiaries of

Medicare, may bear the brunt of Federal efforts to contain health care costs.

In contrast to other segments of the population, especially newborns and young children,

the law recognizes the autonomy of elderly

adults.

Elderly persons are more likely than younger adults to have contemplated the meaning and value of their life and its end.

The significance of the above factors will be

heightened as the elderly population increases in

absolute and relative size, and in average age.

Demographers predict continuing growth of the

elderly population, from approximately 25.5 million people and 11 percent of the U.S. population

in 1980 to 35 million and 13 percent in 2000. Moreover, conservative projections indicate that the

population aged 75 to 84, which accounted for

30 percent of the total elderly population in 1980,

will reach 35 percent in 2000. During the same

period, the proportion of persons 85 and older

will increase from 9 to 15 percent of the population over 65.

Who Are the Life-Threatened

Elderly?

In order to emphasize the diversity of the population at risk and to illuminate problems in making decisions about their care, OTA has devised

a classification system consisting of four categories of ‘(physical status” and four categories of

"(decisionmaking capacity.” Most of these categories are not articulated in practice, but they influence a person’s ability to make treatment decisions for himself or herself and may also influence

the decisions that are made by others on a person’s behalf.

Variation in Physical Status

A life-threatening condition may be—and in

elderly persons frequently is—superimposed on

preexisting physical and/or mental disorders, or

it may occur in an otherwise healthy and active

individual. It is inappropriate for clinical decisionmakers or public policymakers to lump

together all elderly persons who become

candidates for life-sustaining technologies.

Rather, the life-threatened elderly should be

seen as individuals with widely varying physical and mental status. Physical conditions may

be acute or chronic, have different prognoses

(both of survival and restoration of functional ability), and have a course that is either decisive or

unknown.

1. Critically ill persons are those in the midst

of an acute life-threatening episode (e.g.,

cardiac arrest, stroke) or persons believed to

be in imminent danger of such an episode.

They are medically unstable, and if they are

not treated, are expected to decline.

2. Chronically ill persons have one or more

chronic conditions that may or may not be

life-threatening but that reduce chances of

recovery and restoration of function in the

event of an acute disease. Included in this

group are persons who have a life-threatening

chronic condition that has been stabilized,

with or without a life-sustaining technology,

or that is in remission (e.g., chronic renal failure treated with dialysis; cancer in remission).

Many chronic conditions that are not immediately life-threatening are mildly or severely

debilitating; some (e.g., hypertension) increase

the risk of acute life-threatening illnesses or

the risk of complications associated with acute

disease.

3. Severely debilitated persons have serious

or multiple impairments or comorbidities.

Their functional capacity and physiological

reserve are severely compromised. They are

medically stable but highly vulnerable to new

physiological stresses (e.g., at heightened risk

of infections, iatrogenic illness, complications

of treatment, and accidents).
Ch. 1—Summary and Policy Options ● 7

4. Terminally ill individuals are those for

whom a prognosis of death has been made.

Designation as terminally ill usually requires

diagnosis of an illness that has a predictably

fatal progression that cannot be stopped by

any known treatment.

A widely accepted definition of “terminal illness”

includes the expectation that death will occur

within 6 months. This definition has been adopted

by Medicare. In practice, however, accurate prognosis is extremely difficult, and this difficulty adds

to the dilemmas regarding treatment decisions.

Contrary to popular belief, a terminal illness is

not always identifiable as such, and most patients

who are dying have not been declared “terminally

ill. ” Only retrospectively can these designations

be reliably made.

Variation in Decisionmaking Capacity

Cognitive ability has two elements of special importance in the context of this assessment. First,

a person may be cognitively normal and fully capable of making decisions, severely cognitively impaired and completely incapable of making decisions, or somewhere in between; thus, there are

differences in the boundaries or content of cognition. A person who is confused or disoriented

to time and place, or even judged by a court to

be incompetent)’ may still be capable of making

and expressing preferences regarding his or her

medical treatment. It is this relatively narrow conception of cognitive ability, i.e., decisionmaking

capacity with respect to medical treatment,

that is central to this report. A second important

element of cognitive ability is temporal. Like physical status, cognitive ability may be stable or fluctuating, and a person’s decisionmaking capacity

may be expected to improve or worsen. These

distinctions result in four theoretical categories

of patients, as follows:

1. Individuals maybe capable of making decisions about their medical care (and all other

aspects of their life), and their decisionmaking capacity may be assumed to be stable.

2. Individuals may be currently capable of

making decisions about their medical care,

IIn this assessment, OT’A uses the term “incompetent” SpeCifiCal]J’

to designate an assessment of co,gnitiir ability that has been declared

by a legal procedure,

3.

4.

but this status is assumed to be unstable or

declining. Persons whose lucidity fluctuates

and those with progressive dementing disorders are examples.

Individuals may be currently incapable of

making decisions, but it is expected that their

decisionmaking capacity will be restored. This

category includes patients who are unconscious, severely depressed or confused due

to reversible causes (e.g., anesthesia, drug toxicity, pain).

Individuals may be permanently incapable

of making decisions about their medical care

(and everything else). In these persons, there

is no sign of ability to absorb and evaluate

information or to express a preference, and

there is no realistic prospect of change. Examples include patients in a persistent noncognitive state, irreversible coma, and persons who are severely demented.

Combining the physical status categories with

the decisionmaking capacity categories produces

a paradigm of 16 patient groups. However, an individual’s placement in this scheme is subject to

change (see fig. l-l). This complexity accounts,

in part, for the problems inherent in generalizations about the use of life-sustaining technologies.

The combination of a patient physical and mental status may affect both the decisionmaking process and the decision that is reached. For example,

in some States, a patient’s request for nontreatment is granted only if the patient is deemed both

decisionally capable and terminally ill. Or, a critically ill patient, regardless of decisionmaking capacity, might be excluded from the decisionmaking process because of the need for immediate

action.

Accurate evaluation of decisionmaking capacity is critical, but problematic. Assessment procedures are not reliable and not necessarily comparable as applied in different institutions,

Assessment of cognitive status may be particularly difficult when the patient’s physical status

is reduced by illness, drugs, or other medical interventions, or when the patient is depressed. Patients whose ability to communicate is impaired

or unstable present added problems for accurate

assessment.
8 • Life-Sustaining Technologies and the Elderly

Figure 1-1 .—Heterogeneity of the Life-Threatened Elderly

Decisionmaking

capacity Decisionmaking

capacity

D

Decision making Decisionmaking

capacity capacity

KEY

Physical status: Decisionmaking capacity:

A Critically ill 1 Capable of making decisions

B Chronically ill 2 Currently capable

C Severely debilitated 3 Currently incapable

D Terminally ill 4 Permanently incapable

BACKGROUND

The findings presented in this chapter should

be understood in relation to the various social

phenomena that made an assessment of lifesustaining technologies timely in the first place.

The historical context of this study is a stressful

one, in which many things are changing rapidly

and dramatically. The speed of technological advance is unprecedented, the elderly population

is growing geometrically, health care is being

transformed. The words and concepts that are

part of this scenario—quality of life, autonomy,

euthanasia, suicide, rationing, doctor-patient relationship, malpractice, old age-evoke strong, often

conflicting, responses. Other important concepts

are distinguished by their unfamiliarity: advance

directive, living will, durable power of attorney,

surrogate decisionmaker, prospective payment

system, brain death. In this fluid environment,

lags are inevitable: between new knowledge and

its adoption, between technical capability and decisionmaking guidelines, between medical practice

and legal protections.

In other parts of this report (especially chs, 2,

3, and 4), many of these concepts and trends are

discussed in depth. They arise in the context of

patients’ legal rights and ways to exercise them;

the cost of health care and efforts to contain them;

how medical technologies are developed and accepted into practice; ethical bases for allocating

health care resources; ethical and legal issues concerning the withholding and withdrawal of treatments that sustain life; increased presence of the

law and economics in medical practice; attitudes

about illness, death, and dying; growth of the

elderly population; and the emergence of geriatrics as a specialty within medicine, nursing, and

other health professions. The background information presented in this chapter only suggests

the range and importance of the social issues that

drive concern about life-sustaining technologies.

The Specter of Rationing

The looming national debt and efforts to reduce

it draw public attention to and impose new con21n this as5es5ment, “withholding)) is a decision to not initiate a

life-sustaining intervention for a particular patient. Withholding may

be the enactment of the patient’s express wishes or the judgment

of other persons that the application of medical technolo~v is not

warranted. “Withdrawal” means the discontinuance or removal of

a life-sustaining intervention that has been initiated.
Ch. 1—Summary and Policy Options ● 9

straints on older questions about the allocation

of public resources in general and health care resources in particular. At the global level, the total

resource pool must be divided among all competing national interests, i.e., health, defense, education, foreign aid, the environment, crime, and

so on. At the next level, health care resources (including financial, human, and technological resources) must be allocated among a myriad of

potential beneficiaries and causes. Here the competition is between prevention and cure, acute

care and long-term care, research and services,

etc. Finally, at the micro-allocation level, specific

health care resources must be distributed among

the individuals who claim them. If there are 3 beds

in an ICU and 4 patients, or 10 donor kidneys and

20 patients awaiting transplantation, difficult decisions must be made. At every level, our current

fiscal consciousness intensifies the need to make

wise choices—and to be able to demonstrate the

benefits.

Many people see the present economic climate

as a harbinger of inevitable rationing of scarce

resources. In some circles, there is discussion of

explicit criteria for allocating resources based, for

example, on age, prognosis, or cost. Elsewhere,

rationing is rejected outright as unnecessary and/

or evil. Other solutions can be found, it is argued,

if priorities are adjusted at the global level and

demand for health care resources is modified (e.g.,

by improving disease prevention and eliminating

the use of unnecessary medical procedures).

Whether one favors or abhors health care rationing-or believes it is already here—the strong reaction this concept evokes is one of the major reasons for concern about high-technology health

care.

The “High Cost of Dying”

Considerable attention has been drawn to the

high cost of health care for the elderly population (in 1984, annual personal health care expenditures for Americans over 65 were projected at

$120 billion, almost half of which would be paid

by Medicare) and, in particular, to high Medicare

expenditures for patients in the last year of life.

The latter has been interpreted and widely referred to as the “high cost of dying.” The implication has been that a great deal of money, in fact

“too much” money, is spent on patients who are

elderly, and too much of this on patients who die

anyway. These figures have captured considerable attention and led many people to ask whether

the benefits justify the cost. Further, because it

is widely assumed that life-sustaining technologies

are a major factor in the cost of care for persons

who die, the value of this kind of treatment is often

questioned. Projected increases in the elderly population and the increased costs these portend intensify the debate about what level of care is to

be provided at public expense.

Concern about the “high cost of dying” persists

despite recent analyses that put this cost in a different perspective. First, understandably, the cost

of care is highest for people who get the most care,

that is, those who are the sickest. Thus, what some

decry as the high cost of dying others recognize

as simply the cost of health care for very sick people, some of whom live, some of whom die, and

many of whom are elderly. Equally important,

analyses of Medicare expenditures show that the

majority of elderly people who die do not incur

high Medicare costs in their final year. And, of

those elderly patients whose health care costs are

very high, while approximately half die, the other

half survive. Analysis of Medicare expenditures

over the past 20 years also shows that the rate

of increase has been about the same for patients

who survive as for those who die, suggesting that

the increase in expenditures is not due to disproportionate use of expensive life-sustaining technologies for those who die.

In 1983, to contain high Medicare expenditures,

Congress mandated a new basis for payment of

inpatient hospital claims. Under Medicare’s

Part A prospective payment system (PPS), payment

for inpatient hospital care is based on predetermined amounts for patients in given diagnostic

categories. Hospitals thus may show profit or loss,

depending on their ability to keep their costs

within the established payment limits. Hospitals

and the physicians they employ now have strong

economic incentives to be more selective in the

type, amount, or duration of treatment provided

to Medicare patients, especially those whose cost

of care is likely to exceed available payment. Early

studies of the effects of PPS reveal that the average length of stay in hospitals has continued its
10 . Life-sustaining Technologies and the Elderly

pre-PPS decline. While the potential cost savings

to Medicare are significant, serious questions have

been raised about possible negative effects on access to and the quality of care.

Quantity v. Quality of Life

Advances in medical technologies provide considerable ability to alter the timing and circumstances of death. Indeed, modern diagnostic and

therapeutic technologies have changed the very

definition of death and have influenced both professional and popular expectations. Recognition

of the manipulability of death enables us to presume a significant measure of control and to contemplate a death that is more or less “acceptable. ”

Questions about life-sustaining medical care frequently revolve around judgments about what

constitutes acceptable “quality of life” (and, implicitly at least, “quality of death”) and deep-seated

beliefs about the relevance of this consideration.

Evacuations of “quality” are subjective and personal; what is an acceptable quality of life to one

person may be a fate “worse than death” to another.

Similarly, life-sustaining treatment that some

would gladly endure, others would reject as “too

burdensome” or “undignified.” Thus, it is clear

that references to the quality of life must distinguish whether the referrent is the patient’s unique

experience and evaluation of their own life or the

vicarious experience and assumptions of some

other person.

SELECTED

Summarized below are the findings OTA deems

most significant either because they relate

uniquely to elderly persons, affect large numbers

of citizens, have legislative implications, or make

original contributions to the debate about lifesustaining technologies. The findings are presented under four general categories: 1) current

and future resource use; 2) quality of care; 3) access to care; and 4) decisionmaking problems and

processes. Further information on all these topics,

as well as many more specific findings, appear

in chapters 2 through 10 and in background papers

associated with this assessment.

Many people believe that life, whatever its quality, is sacrosanct. Under this view, the possibility

of sustaining life justifies, or even dictates, the use

of all potentially effective means. In contrast, many

other people believe that the present and expected

future quality of life are valid, even essential, considerations in decisions about whether or not to

apply life-sustaining treatments. These fundamental disagreements about quality v. quantity are frequently expressed in the terms of treatments that

“prolong life” v. treatments that “prolong dying.”

In fact, the distinction between prolonged life and

prolonged dying is like the difference between

the proverbial glass that may be seen either as

half full or half empty. The actual referrents are

the same. (In this assessment, OTA uses the terms

“prolonged life” and “prolonged dying” only when

quoting other sources.)

Accompanying new attitudes toward death, and

contributing to them, is the dramatic shift in the

place of death. While the majority of deaths used

to occur at home, by 1984,61 percent of all deaths

in this country occurred in hospitals and other

medical centers. This shift has major implications

for the types of care available to patients, the identity and number of persons involved in their care,

and the kinds of decisions that must be made. Ironically, while hospitals were once feared as “places

to die” because so little could be done to avert

death, some people now fear hospitals as places

to die because so much can be done.

FINDINGS

For the most part, the findings presented here

apply to all of the technologies OTA studied—but

they would not have been evident, or not documentable—without focusing on individual technologies. Thus, an overriding conclusion of this

project is that assessments of individual technologies can provide information for both

public policy and clinical decisionmaking that

abstract considerations of life sustaining technology cannot. Future studies and debate about

health care decisionmaking might usefully adopt

this more focused approach.
Ch. 1—Summary and Policy Options ● 1 1

Current and Future Resource Use

Finding: Data on current utilization of lifesustaining technologies are highly unreliable. Future utilization cannot be accurately predicted.

OTA’S attempt to estimate the utilization of five

life-sustaining technologies reveals, above all,

shortcomings in the available data and existing

data collection systems. With the exception of the

data collected and maintained by the Health Care

Financing Administration (HCFA) on Medicare’s

End Stage Renal Disease program, reliable data

on the numbers of patients are not available.

Estimates of the total number of patients of all

ages and the number of elderly patients treated

with dialysis, resuscitation, long-term mechanical ventilation, and nutritional support are shown

in table 1-1. Total utilization ranges from a few

thousand persons, in the case of mechanical ventilation, to 1.4 million persons, in the case of

nutritional support. Utilization among elderly persons ranges from approximately 2,200 for ventilation to 680,000 for nutritional support. With the

exception of the dialysis data, these figures should

be regarded as preliminary, probably minimal, indicators of the size of the respective patient

groups. The dialysis data are taken from HCFA

records; the other data are based on a combination of industry estimates, published reports, and

OTA contractor reports, and were compiled by

OTA.

For life-sustaining antibiotic therapy, numerical estimates of utilization are too tentative to report. Although some data exist on the use of antibiotics in general, the number of cases in which

treatment is life-sustaining, and the number of

patients who are elderly, cannot be estimated.

Differences in data collection methods, definitions, time periods, etc., dictate special caution

in comparisons of data for the individual lifesustaining technologies described in this report.

(The reader should not conclude from table 1-1,

for example, that 1 in 100 resuscitated patients

requires prolonged mechanical ventilation or that

20 times as many people are treated with dialysis

as mechanical ventilation.) The figures reported

for mechanical ventilation are cross-sectional data;

they do not reflect the fact that new morbidity

creates a constant stream of patients, i.e., the patients on mechanical ventilation at the time these

data were collected might be replaced several

times over during the course of a year. The data

for dialysis, on the other hand, represent all patients treated during a calendar year.

Also, patients with life-threatening medical conditions may be treated, simultaneously or sequentially, with several life-sustaining technologies.

Many ventilator patients require nutritional support, and it has been estimated that 45 percent

of all infections acquired in hospitals (nosocomial

infections) are related to medical devices. Thus,

totaling the number of patients receiving each of

these life-sustaining technologies would overstate

Table 1.1 .- Utilization of Life-Sustaining Technologies for Patients of All Ages,

and for Elderly Patients, in All Settings Combined

Total number Patients over 65

of patients Percent

(all ages) Numbe r of total

Dialysis a . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90,621

Resuscitation b 

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 370,000

to 750,000

Mechanical ventilation . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3,77 5

C

to 6,575d

Nutritional Supportf . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1,404,500

Enteral (tube) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 848,100

Parenteral (intravenous) . . . . . . . . . . . . . . . . . . . . . . . 556,400

27,641 31%0

204,000 550/0 est.

to 413,000

1,250C 34 ”/0

to 2,200

d,e

680,000 48°/0 est.

450,000 530/0 est.

230,000 40°/0 est.

alg&j HCFA data for Medicare’s ESRD Program.

bcontractor es.tirnates, hospitalized patients W’W’.

c1 985 data for w states, patients dependent on ventilator 14 days or 10n9er.

dNational estimates extrapolated from survey in Massachusetts

eElderlY defined as over 70

flg84 lndust~ data and contractor estimates.

SOURCE Office of Technology Assessment, 1987
12 . Life-Sustaining Technologies and the Elderly

the number of patients receiving any life-sustaining technology. In addition, the data in table 1-1

leave out patients who were treated, but too

briefly to appear in the figures (e.g., patients ventilated for less than 14 days).

Future demand for life-sustaining technologies

cannot be predicted without accurate information on current utilization and monitoring of

changes in use. This problem is vividly illustrated

by the brief history of Medicare’s ESRD program.

Prior to Medicare coverage for dialysis, the number and distribution of dialysis machines and personnel were so limited that treatment was available only to the wealthy and the hand-picked;

patients over age 45 were seldom considered. Following enactment of Medicare’s ESRD program,

the number of dialysis patients of all ages climbed

from 5,000 to over 90)000 between 1972 and 1985

(and the number of patients over 65 multiplied

by at least a factor of 25)—figures far in excess

of the original projections.

Future utilization of life-sustaining medical technologies will be influenced by a number of factors, some of which work in opposite directions.

The aging of the population, improvements in the

technologies, and availability in new settings will

drive increased demand. Although these increases

may be great, they are likely to be tempered by

cost-containment measures, preventive strategies

for specific diseases, changes in procedures and

guidelines for treatment decisions, and changes

in public attitudes. Increasingly, cries for “death

with dignity” and the “right to die” are associated

with the rejection of high-technology interventions

near the time of death.

Finding: For resuscitation, mechanical ventilation, dialysis, nutritional support, and

life-sustaining antibiotic therapy persons

age 65 and older constitute large proportions of all patients, but small proportions

of the total elderly population.

This finding can be stated with confidence despite the numerous caveats about specific numbers. While persons 65 and older constitute about

11 percent of the total U.S. population, they comprise over 30 percent of all patients receiving dialysis, nutritional support, and mechanical ventilation (see table l-l). In hospitals, an average of

55 percent of all patients who are resuscitated

are elderly. In addition, because elderly persons

are known to be at the highest risk for life-threatening infections, it is reasonable to assume that

they also comprise a large proportion of individuals receiving life-sustaining antibiotic therapy.

It is important, however, to keep these findings

in perspective. While the vast majority of nursing home patients receiving nutritional support

are elderly, only 5 percent of all elderly persons

are in a nursing home (at any one time), and only

a small proportion of nursing home residents (2

to 5 percent) receive nutritional support. The

proportion of elderly persons who receive other

life-sustaining technologies is much smaller.

Finding: The costs associated with life-sustaining interventions are uncertain, but

certainly high.

In general, available data on the costs of lifesustaining technologies are piecemeal and not

comparable. The best data are those compiled by

HCFA on the ESRD program. For the other technologies OTA studied, even the concept “cost” has

been interpreted inconsistently, depending on

whose costs are of concern. Thus, some publications that claim to report “costs” actually describe

what economists call “charges” (i.e., billed amount)

or “expenditures” (i.e., payments). Some reports

include in their accounting only the specific services and supplies essential to the life-sustaining

technology; others count the total cost of the hospital stay during which a life-sustaining technology is used. There has been no attempt to quantify the full economic impact using a definition

of costs that includes factors like lost income of

the patient or of family caregivers. What is clear

is that the costs to providers, charges to patients,

and expenditures by patients and third-parties for

life-sustaining technologies all are high.

The total cost of care is closely associated with

how long the life-sustaining technology is needed.

Less obviously, the costs associated with the

initial life-sustaining intervention may be

dwarfed by the ongoing costs associated with

survival of patients whose health care needs

remain great despite or because of the inter-
Ch. 1—Summary and Policy Options • 13

vention. This is the case, for example, for severely debilitated people who acquire a lifethreatening infection that is effectively treated

with antibiotics and who subsequently require an

extended stay in a nursing home. Their health and

quality of life may remain poor, despite continuing institutionalization and health care.

Another major correlate of cost is the setting

in which care is provided. (It must be recognized,

of course, that the services, equipment, and expertise available in hospitals v. nursing homes v.

the patient’s home are not the same.) It is generally assumed that cost (along with charges and

expenditures) is highest in the acute care hospital and lowest at home. The movement of hightechnology care outside of ICUs and outside of

hospitals altogether has been encouraged by,

among other things, efforts to reduce health care

expenditures. For patients whose needs can be

met by a combination of self-care and unpaid family members, with only occasional professional attention, the charges and expenditures for home

care are certainly below those associated with hospital care. However, if round-the-clock professional nursing and other attributes of intensive

care are needed, it can actually cost patients and

payers less to keep the patient in the hospital ICU

than to try to ‘(bring the intensive care unit into

the home.” Similarly, care in a nursing home sometimes costs less than care at home.

Available data on charges associated with the

use of three life-sustaining technologies in the hospital and in community settings (including home

care and other community settings), as reported

in published studies and OTA contractor reports,

are summarized in table 1-2. These data show the

wide range in charges for one technology versus

another, for hospital versus community care, and

for different patients within each setting. Daily

charges for life-sustaining treatments range from

$4 to $500 for different forms of nutritional support. The most expensive of these technologies

is mechanical ventilation, with average daily hospital charges of more than $800.

For life-sustaining antibiotic therapy and resuscitation, available data are particularly sketchy.

Intravenous antibiotics are estimated to cost $30

to $200 per day, exclusive of the cost of any profesTable 1.2.—Charges for Life-Sustaining Technologies

Hospital inpatient Community setting

Dialysis

Per treatment – $68-$200

Per year. . . . . . . . – $20,000-$30,000

Nutritional support

Enteral

Per day . . . . . . . . . . . $4-$132a b

.

Per year, ., ,$1,450-$28,200 $3,000-$12,000

Parenteral

Per day . . . . . . . . $25-$500b —

Per year. . . . . . . . . ., ,$9,125-$182,500 $50,000-$100,000

Mechanical ventilation

Per day . . . . . . . . . $824C —

Per year, ., . . . . . . . . . . $300,760C

$21,235-$216,000

aoally flospltal Charges for enteral nutrition average $43, for parr?nk?rd nUtrltlOn the avera9e char9e

IS $196 Der dav

blncludes” formu~a, equipment and staff Iime, not hospital stay. 1985 data cAverage charges, Including hospital stay, for patk?nk In 37 States. 1985 data

SOURCE Office of Technology Assessment, 1987

sional services or institutionalization. For resuscitation, OTA found no reliable cost estimates at all.

Until accurate data are available on the costs

and utilization of life-sustaining technologies and

until the factors that alter cost and utilization are

better understood, health care planning and public

policy will be uninformed. Accurate baseline data

and projections of demand for life-sustaining treatments are basic to planning of health care facilities, professional training, community resources,

technological research and development, and decisions about coverage and reimbursement, including catastrophic health insurance plans. Better information is also a prerequisite to serious

discussion about the need for, or criteria to be

used in, rationing of access to health care.

Finding: Reimbursement is a major determinant of specific treatment options.

Most of the five technologies OTA studied encompass several treatment options, more than one

of which might be suitable for a given patient.

For some patients with chronic renal failure, either transplantation or dialysis might be appropriate, and then, more than one method of dialysis might be effective. For some patients who

require ventilator support, either positive pressure or relatively simple, negative pressure devices might be appropriate; similarly, for some patients, nutritional support and antibiotic therapy
14 ● Life-sustaining Technologies and the Elderly

may be provided effectively by any one of several routes. The availability and level of reimbursement for certain technologies not only influence

incentives for treatment v. nontreatment; they also

influence the relative utilization of different treatment options. For example, some nutritional support experts believe that higher reimbursement

for TPN results in its use for some hospitalized

patients for whom tube feeding would be an effective, less expensive option.

The availability and level of reimbursement also

determine which settings are available, sometimes

encouraging inefficient use of resources or precluding use of the least restrictive environment.

Between 1972 and 1982, the reimbursement structure of Medicare’s ESRD program encouraged

center- and hospital-based dialysis over home care.

Medicare coverage for nutritional support of less

than 90 days and Medicare coverage for drugs,

including intravenous antibiotics, is not available

to patients at home. The lack of reimbursement

for short-term nutritional support and intravenous

antibiotics creates purely financial reasons for continued hospitalization. Similarly, reimbursement

for TPN and for mechanical ventilation is sometimes so much more complete for patients who

remain in the hospital that some patients who

are well enough to go home cannot afford to

do so. The number of hospitalized elderly (and

younger) patients needing life-sustaining technologies who could be safely treated in community

settings is unknown.

Finding: The expansion of life-sustaining

technologies to settings other than the

acute care hospital has major implications

for who and how many will receive treatment.

Currently, the numbers of elderly patients receiving life-sustaining treatments in their own

homes, in nursing homes (tube feeding and antibiotics are exceptions), and in other nonhospital settings are relatively small; the overall numbers have been increasing, however, and many

observers predict that this trend will continue.

If life-sustaining technologies become widely available in nursing homes and patients’ homes, they

may be offered more readily, to more patients and

different kinds of patients, and they may also be

more readily accepted by patients who now would

refuse them. Some observers warn that increased

availability of life-sustaining technologies in nonhospital settings, especially if it is accompanied

by increased reimbursement, could lead to serious overuse.

In general, patients who can be cared for in their

own home enjoy benefits that contribute to their

quality of life. In contrast to patients in the more

restrictive and strange environments of hospitals

and their ICUs, some chronic ventilator patients,

home dialysis patients, and home nutritional support patients retain a certain amount of independence, despite physical dependence on technology.

Even for patients whose functional ability is severely limited, care in their own home allows them

to maintain considerable control over their health

care and other aspects of their life, including social relationships,

The number of elderly persons who can be

maintained on life-sustaining technologies in

their own homes is limited. Complex home care

requires, at a minimum, a patient who is medically stable and cooperative, capable and dedicated

family members or companions, a suitable physical environment, support services in the community, and adequate reimbursement or personal financial resources. These conditions, difficult for

patients of any age to meet, probably preclude

most elderly patients, For mechanical ventilation,

about 34 percent of patients of all ages, but only

14 percent of elderly patients are cared for in their

own homes. It must be recognized, however, that

the feasibility of home care for elderly patients

varies with the technology that is needed. For TPN,

20 percent of home care patients are elderly. And,

for tube feeding, it is estimated that as many as

55 percent of all home care patients are elderly.

There are numerous impediments to the optimal

distribution of patients across settings. Some patients who could be safely transferred to nonhospital settings remain in hospitals, often indefinitely,

because caregivers are not available for home care

or because of a lack of services and facilities within

their community. There is a scarcity of nursing

home beds for technology dependent patients because few nursing homes have adequate staff (or
Ch. 1 —Summary and Policy Options ● 15

adequate incentives to develop staff) to provide

the level of care these patients require. Some physicians and institutions remain unaware or unconvinced about the home care option and do not

present it to patients. Some patients who have

been discharged home have been forced to return to the hospital because of superior reimbursement in that setting. Information and service networks need to be developed to help ensure that

all settings that are medically safe receive consideration.

Finding: For many patients, life-sustaining

treatment in the acute care setting creates

the need for chronic care and continuing

technological support.

Because life-sustaining technologies seldom cure

the underlying condition or restore normal physiological functioning, some patients who survive

an acute intervention require continuing treatment for the rest of their lives. Acute dialysis or

acute ventilation may evolve into prolonged,

chronic, or permanent need for these technologies, with or without potential for rehabilitation.

Chronic dependence on a life-sustaining technology is accompanied by continuous need for services or facilities that are typically both expensive

and scarce.

Individuals who must remain institutionalized

occupy abed in the ICU, hospital, or nursing home,

utilizing facilities, personnel, equipment, and other

resources for which other patients may be competing. Individuals who are able to return to the

community have needs that include reliable sources

for medical equipment and supplies, professional

and nonprofessional caregivers (including family

members and other assistants), and maintenance

and repair of equipment. One aspect of this continuing need is the high, and ongoing, cost of care.

Another crucial aspect is that the necessary services and the linkages to coordinate them are unavailable in many communities.

A patient’s need for long-term technological support is often difficult to predict, but this possibility must be recognized when the initial decision

to provide acute care is made. Some argue that

it is unethical to provide health care to acutely

ill patients if society lacks the commitment also

to provide chronic health care and related services—especially if those needs were created by

the acute intervention. The discontinuity in existing health care services leaves some technologydependent patients and their families in a predicament that they did not foresee when faced with

the initial treatment decision.

Coordinated systems of care for technologydependent persons exist in some European countries, and these models may be instructive. In

France and in England, for example, systems are

in place to provide comprehensive services that

enable chronic ventilator patients to remain in

their communities. These are regional programs

that provide services ranging from group purchasing of medical supplies to equipment repair, patient education, and emergency care. In existence

for more than 20 years, these systems are said

to be economical and to improve the quality of

life for these patients.

Quality of Care

Finding: There are some questions about

the quality of care related to the use of lifesustaining technologies, particularly for

elderly patients.

Although OTA did not specifically seek information related to the quality of care, some issues

emerged. Perhaps most important, there is ample evidence that some treatment options or

procedures should be tailored to age, but there

is little evidence that they are. Despite the fact

that age-related changes in the metabolism of

drugs are now well recognized, for most antibiotics, dose and dose interval remain standard

regardless of the patient age. Similarly, although

it is well established that nutritional requirements

change with age, the details are not well understood, and nutritional formulas are frequently not

adjusted to these changes, especially for patients

on tube feeding. For the other life-sustaining technologies OTA studied, the possibility that the clinical outcomes for elderly patients might be improved if modifications were made either in the

equipment or procedures has barely been ad-
16 ● Life-Sustaining Technologies and the Elderly

dressed. Modifications in these treatments to account for age-related differences depend on continuing basic research in gerontology and other

fields and on dissemination of this knowledge

through professional training.

The traditional bias of medical education and

practice places the cure of acute illness above all

other goals. When cure is not a realistic goal, this

approach often leads to inappropriate treatment

decisions. Recent changes in the curricula of many

health professions recognize this problem and

seek to improve care by acknowledging and focusing on achievable goals, such as maximization of

the patient’s functional capacity and the quality

of life. Pertinent curricular innovations include

new courses in geriatrics, medical ethics, humanities, and death and dying.

Other quality of care issues result from shifts

in the settings in which life-sustaining technologies

are applied and changes in the personnel who are

responsible for care. In nonhospital settings, responsibility for patient care is often entrusted to

less trained professionals and to laypersons. The

education and supervision of patients providing

self-care, family members, and other lay caregivers, as well as home health care professionals

are important issues. Health care personnel

trained in the use of complex technologies have

typically not been trained to work in community

settings or to work with elderly persons. Maintenance and repair of equipment and availability

of backup equipment can also be problems when

life-sustaining technologies are used outside the

hospital.

A different kind of quality of care issue concerns the technological hardware for certain lifesustaining technologies; this includes the primary

medical device as well as the various peripheral

supplies and components (e.g., tubing, solutions,

power sources). Questions have been raised about

the quality, safety, and suitability of some enteral

formulas for nutritional support. Also, the Food

and Drug Administration (FDA) has received a

large number of reports of mechanical ventilators that have malfunctioned or failed. In some

cases, only voluntary standards apply to the manufacture of devices and products used to sustain

life.

Finding: Technological developments have

improved the safety and efficacy of lifesustaining technologies, as well as the

quality of life for some patients who are

dependent on them.

Research and development (R&D) in many

arenas, including physiology, medicine, engineering, electronics, biofeedback, and computer science, have brought continuous change in existing life-sustaining technologies as well as

completely new technologies to sustain life (see

app. c). Stimulated by competition for health care

markets, perceived need to improve available

products, regulatory standards, etc., R&D within

the public and private sectors has resulted in more

and better devices and methods for diagnosing,

monitoring, and treating severely ill patients in

both traditional and nontraditional settings.

General technological advances (e.g., miniaturization, computerization, new materials, and automation) have made possible improved efficacy,

safety, and reliability of many medical devices. One

example is the development of automatic blood

gas analyzers, considered a watershed in mechanical ventilation technology. Other kinds of technological developments have meant improved

comfort and independence for some patients. Innovations that reduce the size and weight of equipment, extend time between treatments, reduce

the need for professional services, or make home

care possible enhance the quality of life for many

patients. Improved blood access systems for hemodialysis are a good example. Prior to development

of the Teflon shunt in 1960, patients had to undergo the inconvenience, discomfort, and risk of

infection associated with having a new surgical

procedure for every dialysis treatment.

A potential benefit of continuing R&D is cost

reduction, New methods of manufacture, new materials, and new markets may lower the production cost of certain equipment and supplies. If lowered production costs are reflected in prices or

in reimbursement, this would result in lower treatment costs for some patients. Existing incentives

to develop medical technologies that are less expensive and incentives to substitute lower for

higher cost technologies appear largely tied to interest in the home health care market.
Ch. 1—Summary and Policy Options ● 1 7

Access to Care

Finding: When resources are available, patients with life-threatening conditions are

more likely than not to receive aggressive

treatment.

The acute care orientation in medical training

and practice emphasizes cure and prolongation

of life and justifies “doing everything humanly possible” to achieve these goals, This bias to treat appears to prevail for patients of all ages. It has been

reinforced by the wide availability of life-sustaining technologies in hospitals, reluctance to consider cost as an appropriate factor in individual

decisionmaking, health professionals’ and institutions’ fear of legal action, and the weighty uncertainties surrounding treatment decisions. Since

a wrong decision is irreversible, most health professionals would choose to “err on the side of life.”

While withholding of treatment is resisted, withdrawal may be even more so. Despite wide agreement among ethicists and legal scholars that there

is no theoretical basis for distinguishing between

withholding and withdrawal of life-sustaining

technologies, in actual practice it is frequently

easier to withhold a life-sustaining treatment

whose benefit is uncertain than later to “pull

the plug, ” even when the patient or patient’s

surrogate requests this. Grief, guilt, and health

professionals’ feelings of failure at times prevent

rational decisionmaking.

Some health professionals and family members

view withdrawal of aggressive medical treatment

as “giving up” or even “abandonment” of the patient. On the other hand, some believe there is

a greater moral imperative to withdraw treatment

that proves to be futile or unwanted than to initiate an intervention that is of uncertain value. This

position emphasizes the need for continual reevaluation of the medical indications for treatment.

Some persons who hold this view advocate the

use of time-limited trials. For example, mechanical ventilation could be instituted with the provision that its use be reconsidered after 1 week;

dialysis could be tried for 4 months, etc. After

a designated trial period, the patient’s situation

could be thoroughly evaluated; there would be

an opportunity to assess the value of treatment

and to ascertain the patient’s wishes.

In addition to philosophical and psychological

difficulties, practical difficulties at times discourage the withdrawal of life-sustaining technologies.

To withdraw most life-sustaining treatments requires a specific physician order, frank and timeconsuming conversations with the patient and/or

family, conferences among members of the health

care team, and formal documentation in the patient’s record. At times, institutional review committees, ethics committees, legal advisers, or the

courts become involved in decisions to withdraw

treatment. While decisionmaking procedures vary

with the technology being considered, the decision to withhold treatment is generally less explicit than the decision to withdraw it.

Finding: Relative access to life-sustaining

technologies by different segments of the

population cannot be assessed with available data.

Health professionals’ preference to provide

rather than to withhold treatment and to withhold rather than withdraw it are competing biases whose impact on access to life-sustaining

treatments is not clear. Many other factors, notably reimbursement, also influence accessibility of

health care and determine whether or not various segments of the population have equal access.

Between 1965 and 1983, Medicare’s cost-based

reimbursement system facilitated the development and diffusion of medical technologies in general, and made life-sustaining technologies available to hospitalized elderly patients with little

regard to cost. It is not yet clear what impact Medicare’s prospective payment system for hospital

care has had on accessibility of life-sustaining treatments. Available utilization data prove that elderly

persons have considerable access to life-sustaining

treatments, but utilization data alone do not permit conclusions about whether access is restricted

(leading to undertreatment) or excessive (leading

to overtreatment).

Public opinion and concerns expressed by health

professionals suggest that overtreatment—i.e.,

provision of treatment that is or becomes unwanted or unbeneficial—is more frequent than

undertreatment. In 1985 the National Institutes

of Health cosponsored a conference on Withholding and Withdrawing Mechanical Ventilation in
18 • Life-Sustaining Technologies and the Elderly

response to wide agreement among clinicians that

the technology is too often started and too often

continued inappropriately. It should be noted,

however, that because treatment is easier to count

than nontreatment, overuse is probably more visible than underuse.

Cost-containment pressures in general and

Medicare’s prospective hospital payment system in particular force health care decisionmakers to acknowledge that resources are

limited and that all patients cannot have

“everything possible.” The pressure to reduce

costs has spawned legitimate concerns among

health professionals and the public that every patient will not have everything that is desirable.

In the absence of guidelines for how costs are to

be reduced, it is unclear which patients will be

affected the most. Since Medicare is a program

for elderly citizens, however, the patients most

directly affected by hospitals’ and physicians’ efforts to reduce health care costs under Medicare

are those over 65.

It appears that questions about equality of access should not just make the usual comparisons

of rich and poor, old and young, or black and

white. pertinent concerns also include setting, cognitive ability, and age subgroup. Anecdotal evidence and small studies suggest that a nursing

home resident with a life-threatening infection is

less likely to be treated than if that same person

were in an acute care hospital; persons with severely impaired cognitive ability—whose quality

of life is perceived to be poor and who cannot

speak for themselves—are also less likely to receive aggressive treatment; relatively young

elderly persons and those who have a spouse are

more likely to be treated than those who are older

or alone.

Since 1983, evidence of changes in hospital admission policies and the continued reduction in

length of stay suggest that limited Medicare payment may have begun to influence treatment options that are made available. Some Medicare patients whose treatment costs are expected to

exceed payment for their diagnosis-related group

(DRG) have been dubbed “DRG losers,” and there

is mounting anecdotal evidence that some persons

have been denied admission to certain hospitals

or denied admission to the ICU.3 Despite financial incentives to limit expensive care, however, there is no evidence to date that PPS has

reduced access to life-sustaining treatment.

As cost-containment measures are implemented

in Medicaid and in private health insurance programs, patients of all ages are more likely to receive reduced care. It remains to be seen whether

savings are or will be found by cutting services

to all patients or by cutting services to particular

groups of patients. There is wide agreement that,

under PPS, Medicare patients are being discharged

from hospitals “quicker and sicker.” At the same

time, however, Medicare patients who are retained

in hospitals are also sicker and older than before

PPS. The meaning of these findings and the extent to which they are caused by PPS is a subject

of considerable debate that is outside the scope

of this assessment.

Finding: For patients who do not want lifesustaining technologies and patients for

whom these technologies are not medically indicated, treatment options have

been relatively unexplored and are not

widely available.

Treatments whose goal is to control pain and

suffering, even at the risk of hastening death, are

regarded by many people as reasonable alternatives to aggressive life-sustaining medical treatment. There is anecdotal evidence, however, that

patients who refuse life-sustaining treatment that

is offered and patients from whom aggressive

treatment has been withheld or withdrawn are

sometimes neglected by health professionals. Persons capable of providing alternate forms of

treatment-especially hospice care and palliative

or supportive care—may not be available. Also

there are legal and ethical uncertainties regarding when and how it may be appropriate to limit

treatment. Medicare reimbursement for hospice

care is currently available only in special circumstances, only to patients who have been diagnosed

as “terminally ill” and then, of course, only where

hospice facilities and/or personnel are available.

3A study in one hospital found that Medicare pptknts in sPeci”

fied circulatory system DRGs, who were treated in the ICU, resulted

in losses to the hospital ranging from $674 to over $24,000 per discharge. Such dramatic effects hate attracted considerable attention

among health professionals and institutions.
Ch. 1—Summary and Policy Options ● 1 9

Decisionmaking Problems and

Processes

Finding: Decisions about the use of life-sustaining technologies are made amid great

uncertainty regarding the likely clinical

outcomes.

Decisions about whether or not to institute lifesustaining treatments would be relatively easy if

it were known in advance whether or not the patient would survive, for how long, and in what

condition. But, variations in patients’ physiological and psychological adjustment, and in the quality of care they receive, make highly uncertain

the outcomes of any treatment for any given patient, Pervasive prognostic uncertainty means it

is impossible to predict whether or not any treatment will be effective, whether a particular treatment is optimal, or whether a patient would survive without treatment.

The inability to prospectively identify patients

who will benefit from treatment arises because,

contrary to popular belief, life-sustaining technologies are frequently ineffective. For acutely

ill patients of all ages, aggressive treatment is

associated with high mortality and serious

complications. At best, one-third to one-half of

all in-hospital resuscitation attempts succeed; and

only one-half of the patients who are successfully

resuscitated survive long enough to be discharged

from the hospital. In acute episodes of respiratory failure, adults treated with mechanical ventilation have about a 50-percent chance of surviving; for acute renal failure, only 20 percent of

persons over age 70 survive. Patients receiving

antibiotic therapy or nutritional support have a

relatively high, but not necessarily predictable,

chance of survival.

Prognosis is often especially difficult when

the patient is elderly. The interaction of disease

(especially multiple coexisting diseases) with reduced physiological reserve makes diagnosis in

elderly patients difficult and responses to treatment particularly difficult to predict. The clinical

uncertainties may be exacerbated by the shortage of basic scientific knowledge about aging and

the shortage of personnel trained in geriatric

assessment and care.

Inability to accurately predict the outcomes of

particular treatments can result in two kinds of

errors—i.e., treatment of patients for whom treatment is futile and failure to treat patients who

would survive. Reducing both kinds of errors

would not only avoid useless suffering for patients

and families, but is tantamount to more rational

and efficient use of health care resources. Studies

of the outcomes of critical care have shown that

the cases in which costs are highest are those in

which the outcome was inaccurately predicted.

Basic and clinical research are among the necessary approaches to reducing clinical uncertainty

and, thereby, to improving the content of treatment decisions. Information is needed about the

physiological and psychological responses of

elderly patients to particular treatments as well

as information about the outcomes without treatment. Dissemination of this information through

education and training of health care professionals

would strengthen their ability to evaluate, and to

help patients understand, the relative risks and

benefits of treatment options.

Research is underway on a variety of methods

to combine diagnostic and treatment data into statistical categories that are associated with known

probabilities of survival. Theoretically, reliable

classification systems could provide physicians an

improved basis for predicting the outcome of treatment. An OTA workshop on such systems of patient classification, held in conjunction with this

assessment, concluded that, although the current

state-of-the-art is limited and systems remain experimental, there is reason to believe that refined

patient classification systems will effectively reduce clinical uncertainty and provide valuable help

in making some kinds of treatment decisions.

Finding: For an individual patient, chronological age is a poor predictor of the outcome of treatment with life-sustaining

technologies.

The statistical odds of survival are worse for

elderly than for younger adults who receive a lifesustaining intervention, but neither age 65—nor

any single age criterion—is an adequate predictor of physiological or psychological response to
20 • Life-Sustaining Technologies and the Elderly

treatment. Moreover, because physiological and

psychological diversity increase as people age, response to particular technological interventions

may be hardest to predict in the oldest patients.

Available data for most of the life-sustaining

technologies OTA studied substantiate that elderly

patients, as a group, have lower survival rates and

more complications. With dialysis, for example,

the mortality rate among elderly patients is three

times as high as that for all patients (45 v. 15 percent). On the other hand, elderly patients, on the

whole, seem to make a better psychological adjustment to chronic dialysis than do younger patients. Generalizations based on the patient’s age,

while they may be statistically accurate, obscure

the fact that many individual elderly patients survive and thrive after treatment with a life-sustaining technology.

For patients of all ages, life-sustaining technologies are associated with numerous potentially

serious complications. It has sometimes been assumed that elderly persons, as a group, are at

higher risk of such complications and that the complications elderly patients experience are apt to

be more serious. In fact, data to support this assumption are inconclusive and vary with the technology. For example, while increased risk of rib

fractures is frequently mentioned in connection

with resuscitation of elderly persons, OTA is unaware of data to support this. Moreover, any statistical association between age and rib fractures

is due not to age per se, but to age-related diseases that make the bones brittle (e.g., osteoporosis).

To some degree, the worse outcomes of elderly

patients may stem from inadequate expertise

regarding aging and geriatric care. Health professionals’ inattention to or misinterpretation of pertinent clinical information can lead to unwarranted generalizations about elderly patients and

to a self-fulfilling prophecy. If it is reasoned, for

instance, that an elderly person should not receive

aggressive life-sustaining treatment “because he

won’t do well,” he is almost certain to not do well!

Most of the patient classification systems OTA

reviewed include chronological age as one variable in the statistical prediction model. Even in these

abstract mathematical models, age contributes

less to the prediction than other patient characteristics, including severity of illness, diagnosis, or previous health status. So great is individual variability that some researchers and clinicians argue that the patient’s age should be disregarded in making treatment decisions. Others

advocate development of a proxy forage that more

accurately reflects the health status and reserve

capacity of individual patients.

Finding: The legal and ethical uncertainties

that surround decisions about the use of

lift+ sustaining technologies have led to intense interest in the development of decisionmaking supports and guidelines.

Profound ethical uncertainties in decisions about

life-sustaining technologies emanate from the

plurality of cultural and religious orientations that

characterize this society and that affect people’s

values and beliefs about such fundamental things

as the meaning of life and the meaning of death,

individual v. public good, and the quantity v. quality of life, Ethical quandaries may make it difficult to discern the goal of the decision (e.g., patient autonomy v. survival, etc.), the means to

achieve it, or both.

Grave legal uncertainties arise because there are

situations in which no pertinent legislation exists,

because legislation differs in different jurisdictions, and because the law is changing. Legal

precedent and case law offer valuable, but not

always consistent, guidance. Uncertainty about

what actions are legal fuel health professionals’

widespread fear of the law, and fear of malpractice litigation is an important factor in clinical decisionmaking. Some of this fear is well founded;

some, however, results from health professionals’

ignorance or misinterpretation of the law.4

Decisionmaking problems are made still more

complex by the fact that, in most cases, there is

not one decision to be made (e.g., whether or not

to start dialysis), but rather a series of decisions

(e.g., whether to hospitalize, to do a particular diagnostic test, to put the patient in the ICU, to continue treatment, etc.). And, separate from the ques-

~See M.B. Kapp and B. Lo, “Legal Perceptions and hfedical Decisionmaking, ” prepared for the office of Technolo~V Assessment,

LI.S. Congress, t\’ashington, DC, Xlarch 1986.
Ch. 1—Summary and Policy Options ● 2 1

tions about what the decision should be are serious

questions about how the decision should be

reached. If, for example, the patient disagrees with

medical advice, what should be done? If the patient is not decisionally capable, who shall be the

surrogate? The variety in patients’ physical status, decisionmaking capacity, severity of illness

(emergency or not), social circumstances (especially whether one is in the community or in an

institution), and family situation (especially

whether or not there is a designated surrogate)

mean that no single approach to decisionmaking

can be applied in all instances. These difficulties

have stimulated legislative, institutional, and professional responses.

Possible roles of government in reducing the

uncertainties surrounding decisions about lifesustaining technologies include Federal or State

legislation and regulations and support for research. To date, the legal response has been primarily the enactment of new laws at the State

level. Living will laws have been enacted in 38

States and the District of Columbia. All States and

the District of Columbia have durable power of

attorney statutes, and 15 States have statutes that

specifically authorize the use of a durable power

of attorney for health care decisionmaking. These

advance directives protect the rights of patients

to participate in health care decisions even after

they become decisionally incapable and, by clarifying the patient’s treatment preferences, offer

health care providers a measure of protection as

well. Family consent laws, that specify the right

of family members to make treatment decisions

for an incompetent person, are another option.

In some States, courts have mandated specific procedures that must be followed in decisionmaking

about life-sustaining technologies. Each form of

legal response does a partial job of solving the

problems that arise in decisions about life-sustaining treatment. The clinical and ethical dilemmas,

of course, remain.

As recommended by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research,

some health care institutions, especially hospitals,

have developed policies or guidelines that specify

how decisions about life-sustaining technologies

will be made. These attempt to ensure quality of

care and to reduce risk to the institution and its

staff. Always, institutional policies are subservient

to existing State laws and mandates (or, in the case

of some Federal institutions, Federal law) regarding advance directives, family consent, malpractice, etc. In almost all cases, institutional policies are procedural, not substantive. That is,

they emphasize how a decision should be

reached, not what it should be.

Acute care hospitals are the institutions most

likely to have policies regarding decisions about

life-sustaining technologies.5 The hospital policies OTA has reviewed tend to be very cautious

and to presume that treatment will be provided.

Most focus on clinical criteria for particular treatments, especially resuscitation, and specify procedures for designating and implementing Do-NotResuscitate (DNR) orders. Some institutional policies specify alternate levels of care and then have

a procedure for assigning patients to each level.

Under this kind of policy, patients may be designated, for example, “do not resuscitate, ” “do not

incubate, ” or “supportive care only. ”

Institutional policies make explicit the presumption for or against treatment in a facility, who will

be involved in a treatment decision (patient, family, attending physician, other physicians, nurses,

ethics committee, other facility staff), and how

advance directives will be regarded. Institutional

guidelines may address ways to protect patient

autonomy, for patients who are decisionally capable and those who are not, and ways to resolve

conflicts.

There is now some movement toward requiring policies as a standard for accreditation of institutions. In June 1987, the Joint Commission on

the Accreditation of Hospitals (JCAH) adopted a

standard requiring hospitals and nursing homes

to have a policy for decisions about resuscitation

by 1988.

Ethical analysis is increasingly recognized as a

useful tool in making treatment decisions. Thus,

another institutional response has been the establishment of institutional ethics committees or em-

.>A 1986 Surt,ev by the Joint Commission on the Accreditation of

Hospitals found “that 57 percent of acute care hospitals, 43 percent

of hospices, and 20 percent of nursing homes have formal policies

for decisions about resuscitaiton,
22 ● Life-Sustaining Technologies and the Elderly

ployment of a philosopher or theologian to assist

in the resolution of troublesome cases. At least

half of all acute care hospitals, and higher proportions of large hospitals and teaching hospitals, have

established ethics committees to assist in decisionmaking for difficult cases. A few nursing homes

have also established institutional ethics committees. Typically, these committees include physicians, nurses, administrators, attorneys, social

workers, and lay persons who review specific

cases brought to their attention. Individual institutional policies specify the role of these parties in

the decisionmaking process. In most instances, decisions made by ethics committees are regarded

as advisory.

Associations of health care professionals have

shown strong interest in developing decisionmaking guidelines themselves, partly in an effort to

avoid government intervention. Some of these are

clinical guidelines, specifying when a particular

treatment is medically indicated. Some, notably

the American Medical Association’s (AMA) 1986

statement on “Withholding or Withdrawing Life

Prolonging Medical Treatment ,“ address the physicians’ legal and ethical responsibilities in making these decisions. The AMA statement specifies

that “life prolonging medical treatment,” which

“includes medication and artificially or technologically supplied respiration, nutrition or hydration”

may be withheld or withdrawn when doing so

is in the patient’s best interest.

Another example of the interest in guidelines

is the list of “principles for decisionmaking” developed by the advisory panel to this OTA assessment (see box 1-A), These express the strong convergence of opinion—but not unanimity-of a

panel of physicians, nurses, lawyers, ethicists, and

economists regarding many of the fundamental

questions.

Finding: In practice, many patients are not

involved in decisions about the use of lifesustaining technologies.

The patient’s involvement in decisions about the

use of life-sustaining technologies varies widely

depending on the urgency of the medical event,

the setting, the patient’s cognitive status, and established decisionmaking procedures. For the technologies OTA studied, the patient’s consent to

treatment is frequently not obtained, and even

when consent is obtained, it is frequently not “informed.”

Sometimes the patient is left out of the decisionmaking process because the need for immediate

action or the patient’s mental state makes it impossible to do otherwise. Victims of cardiac or respiratory arrest, for example, are typically unconscious or in a severely compromised mental state;

moreover, the imminent risk of brain damage does

not permit time for discussion with other persons

who may know the patient’s wishes. In such emergencies, when the patient’s consent for initiation

of treatment is unobtainable, consent is usually

“implied.“ Thus, emergency medical technicians

responding to calls are usually obligated to try

to resuscitate every victim of cardiac arrest, not

to pause and ask whether this is wanted.

In the case of resuscitation, the bias to treat

is so strong that the normal presumption

about informed consent is reversed. That is,

patients (or their surrogates) are likely to be consulted if a DNR order is being considered, but unlikely to be consulted for consent to resuscitate.

Cognitive impairment resulting from dementia

or depression is another major factor in patients’

involvement in treatment decisions. Patients who,

based on formal or informal assessment, are considered to have severely impaired cognition are

commonly excluded from decisions about their

care. Some of these people, however, if given the

opportunity, express consistent wishes regarding

treatment v. nontreatment. Since the prevalence

of dementia increases with advanced age, elderly

patients as a group are less likely than younger

adults to be able to actively participate in decisions about their care.

If a patient is determined decisionally incapable, a surrogate decisionmaker can be, and frequently is, designated. This may be done informally, as when the physician turns to the patient

spouse or an adult child. Or a surrogate may be

formally appointed, by the patient or by a court.

Some States specify a hierarchy of family members who have decisionmaking authority if a surrogate is needed; others have a “durable power

of attorney for health care” statute.
Ch. 1—Summary and Policy Options ● 2 3

BOX I-A.—-Principles for Decisionmaking Of Life-Sustaining Technologies

for Elderly Persons, as Developed by Project Advisory Panel

NOTE: Members of the Advisory Panel to this OTA assessment (sse title page) sought to express their strong

●

●

●

●

●

●

●

●

●

●

●

●

●
24 ● Life-Sustaining Technologies and the Elderly

In some cases, it is possible to obtain the patient’s informed consent, but the treatment in

question is considered so “ordinary” that standard practice diverges from the law requiring informed consent. Antibiotic therapy, especially in

the hospital setting, is so routine that health professionals often consider consent unnecessary, and

they do not seek it. Also, health professionals’ perceptions of some interventions as ordinary or noninvasive mean that, in practice, different treatment modalities for a single life-sustaining

technology can involve different decisionmaking practices. Thus, in many institutions, a

nasogastric tube may be placed for the provision

of enteral nutrition without the patient’s consent—

even though formal consent is always required

for surgical placement of a gastrostomy tube for

enteral nutrition or a catheter for TPN.

Many patients, particularly elderly patients, are

accustomed to a passive role in the doctor-patient

relationship and to accepting the advice of trusted

health professionals without questioning. Persons

who have developed this behavior over a lifetime

cannot be expected to start seeking information

or to take an active role in treatment decisions

when those decisions are most difficult. A 1982

national survey reported that 38 percent of respondents of all ages, and 60 percent of elderly

respondents, “want the responsibility of making

the final choices about your medical treatment”

to rest with their doctor. Some elderly persons

prefer to entrust important treatment decisions

to their spouse or an adult child,

The urgency of many life-threatening conditions

and the fact that patients may be decisionally incapable at the time a treatment decision must be

made point to the importance of determining patients’ wishes about life-sustaining treatments before a life-threatening emergency occurs. Implementation of the patient’s wishes is frequently

dependent on advance planning. This may take

several forms, including: discussions with family

members and/or health professionals about treatment options, with documentation in the medical record or in a formal advance directive, such

as a “living will”; designation of a surrogate decisionmaker; or institutional policies that ask patients to indicate their treatment choices upon admission.

Many health professionals believe that the goal

of truly informed consent is often illusory even

when there is time for discussion and the patient

is fully in command of his or her cognitive faculties. In addition to the difficulty most laypersons

would have in understanding the details of their

condition and the treatment options, the gulf between hypothetical and actual situations is wide.

It is unlikely, for example, that a layperson (or a

health professional) who has not personally experienced mechanical ventilation can fully comprehend the impact of this treatment. By the same

token, it is impossible to anticipate what it is like

to be unable to breathe. Physicians’ observe that

many people “change their mind [about being intubated for mechanical ventilation] when they are

choking to death,” and this observation contributes to their skepticism about advance directives.

Even when the patient has been informed

about treatment options and his or her wishes

have been specified, problems remain in ensuring that these wishes are implemented, especially if they call for limited treatment. Neither an advance directive nor the instructions of

a surrogate can be followed if authorities do not

know one exists or if the document or person cannot be located. Advance directives that indicate

refusal of life-sustaining treatment are sometimes

overruled because they are considered “too

vague.” This can happen if, for example, the patient circumstances or the treatment being considered was not anticipated when the directive

was written, and physicians think treatment will

be beneficial. Inconsistencies in State laws are a

major problem. Some States will not recognize an

advance directive that was made in another State.

In many States, advance directives do not become

operative until or unless the patient is diagnosed

“terminally ill.” Moreover, some State living will

statutes include provisions that, in the view of

some people, contradict the common law right

to refuse treatment, by specifying, for instance,

that nutritional support must always be provided.

A patient preference that runs counter to the advice of health professionals is often interpreted

as “irrational,” and efforts will be made to change

the patient’s mind or to circumvent the-patient’s

request. In such cases, the patient’s decisionmak -

ing capability maybe called into question, and efforts made to appoint a surrogate or a guardian.
Ch. 1—Summary and Policy Options . 25

In general, consent to recommended treatment

is easier to implement than is refusal of recommended treatment, and any patient wish is easier

to carry out if it is consistent with the advice of

caregivers and the wishes of family members.

Finally, decisions about the use of certain

noninvasive, common technologies are often

made without consideration of their life-anddeath implications. Care of the life-threatened

elderly involves a continuous series of treatment

decisions which, individually, may seem so small

and undramatic that their life-and-death implications are not even recognized. Decisions about

the treatment of a life-threatening infection, even

in severely debilitated and terminally ill people,

frequently focus on choice of the appropriate antibiotic and omit explicit consideration of whether

or not to treat.

Finding: The physical, psychological, and financial stresses associated with life-sustaining treatments are great, not only for

patients, but also for family members and

caregivers.

The physical, psychological, and financial stresses

imposed by the life-sustaining technologies OTA

has studied differ with the technology, and their

significance depends on the personalities, specific

resources, and exigencies of each case. Also, the

immediate and short-term stresses are different

from those associated with chronic care. Some

patients cope admirably with the discomforts and

fears associated with acute care and, if necessary,

with a technology dependent lifestyle, but others

respond to the anticipated stress by refusing treatment. Others start treatment but eventually request that it be withdrawn; they maybe depressed

or even suicidal.

Specific effects of the technologies OTA studied include inability to speak or eat (mechanical

ventilation), discomfort and limited mobility associated with tubes and catheters (whether for ventilation, nutritional support, drug delivery, or dialysis), and a gamut of complications ranging from

minor to life-threatening. For patients who are

acutely ill, loss of sleep, disorientation, and anxiety are concomitants of hospitalization and medication that may accompany all these treatments.

Physical restraints, sometimes used for patients

who are uncooperative or confused, are an additional source of distress. Fear of a new acute episode, loss of independence and control, dietary

regimens, restricted activities, and financial worries may be among the long-term burdens for patients who are restored to medical stability. Comor -

bidities, reduced physiological reserve, and limited

social support, i.e., characteristics of many elderly

patients, may exacerbate any or all of these.

Family members and friends are also under

great stress related to anticipatory grieving, financial burdens, and excessive demands on their time.

Involvement in treatment decisions is likely to be

filled with uncertainty, selfdoubt, or perhaps guilt.

If the duration of treatment is prolonged, and especially if the family has caregiving responsibilities,

the lifestyle of family members may be radically

changed. Emotional burdens may be especially

great if the patient’s condition or treatment impairs or precludes the ability to communicate or

if treatment cannot be administered without physical restraints.

It is widely agreed that informed consent should

include disclosure of the likely discomforts and

restrictions attendant with use of these technologies. However, even if the patient is conscious

and fully competent when the treatment decision

must be made, the full impact of these treatments

is difficult to predict and to convey. If the patient

is unconscious or severely demented or confused,

those entrusted with the treatment decision can

only speculate about the patient’s experience of

pain or distress with (or without) any of these

treatments.

Finally, caring for critically ill, terminally ill, or

severely debilitated patients who may be treated

with life-sustaining technologies is demanding and

highly stressful for health care providers. In addition to the emotional load of dealing with very

ill patients and grieving relatives, health professionals are constantly reminded of their own mortality and their fallibility. Emotional detachment

from patients, avoidance of patients’ families, and

overuse of technologies are not uncommon responses. Impaired job performance and “burn-out”

are also reported. Most health care professionals

currently in practice received little or no train-
26 • Life-Sustaining Technologies and the Elderly

ing in the human aspects of death and dying; many

are ill-equipped either to provide emotional support to dying patients or to cope with their own

personal reactions.

Whether or not the experience of family members or caregivers should have any bearing on

a treatment decision (or on who should be the

surrogate) is an interesting ethical dilemma—

which this assessment does not address. The point

here is that patients may not be alone in their need

for social and/or financial support.

Finding: Currently, the most controversial

life-sustaining technology is nutritional

support. The highly emotional reaction to

this technology obscures specific clinical,

legal, and ethical questions that require

resolution.

Of all the life-sustaining technologies OTA studied, nutritional support and hydration is the most

troublesome for ethicists, clinicians, and the public. It is over this technology that advocates of

“death with dignity” and the “right to life,” as well

as more moderate positions differ most sharply.

The debate centers around the question of whether tube and intravenous feeding and hydration

are “food and water” or a medical treatment. In

the former view, the provision of artificial nutrition and hydration constitutes a basic aspect of

human caring that should be withheld or withdrawn only when death is imminent or when it

is not medically possible to provide them. In the

latter view, these are medical treatments that can

be withheld or withdrawn under the same circumstances as other life-sustaining technologies.

These opposing views leave little common ground

for the formulation of policy or for decisions regarding the care of individual patients.

Very little is known about persons on long-term

nutritional support, especially in nursing homes.

Anecdotal evidence and some recent research

findings suggest that many patients on long-term

tube feeding are cognitively impaired, but it is not

clear why they are tube fed—whether it is because

they resist hand feeding, because of swallowing

difficulties, or for other reasons. Some people

claim that nursing home residents are tube fed

because hand feeding is too time-consuming.

There are, however, no data to substantiate this

claim.

Lack of information about cognitively impaired

people on long-term tube feeding is related to the

general lack of information about cognitive impairment in elderly people. Ongoing biomedical

and behavioral research on Alzheimer’s disease

promises to provide some answers. However,

much more needs to be learned about the physiological, psychological, and emotional aspects of

dementia—particularly the late stages of dementing diseases—in order to understand why some

patients with these conditions stop eating and refuse hand feeding.

The patient’s formal consent is usually not obtained for nasogastric tube feeding—by far the

most common mode of nutritional support—

because it is not “invasive. ” Although nasogastric

tube feeding does not involve surgery, some people consider it burdensome, particularly when it

is used for prolonged periods, sometimes years.

An unknown proportion of people who receive

tube feeding, including some who are cognitively

impaired, are physically restrained to keep them

from pulling out the tube. This combination of

factors would seem to indicate a need for very

rigorous decisionmaking procedures that include

methods for ascertaining the patient’s treatment

preferences whenever possible, appointment of

a surrogate decisionmaker when necessary, and

periodic review of both the need for and the

method of treatment.

Finding: Ongoing social and technological

change will continuously alter the decisionmaking context.

The relatively brief history of life-sustaining

technologies shows how rapidly and dramatically

changes can occur in attitudes, expectations, and

policies that determine their use. These changes

are driven by a variety of social and technological factors that are in constant flux and that are

often unanticipated.

At both the individual and societal level, decisions about the use of life-sustaining technologies

for elderly people will be influenced by (and, in

turn, will influence) changes in a wide variety of
Ch. 1—Summafy and Policy Options ● 2 7

factors, including technological capabilities, scientific knowledge, medical education, economic

conditions, public policies and laws, and public

attitudes and expectations. Factors that have attracted considerable attention in recent years include the growth and aging of the elderly population, efforts to contain health care costs, and

concern about the quality of life. Decisions about

the use of life-sustaining technologies will also be

influenced by the increasing level of education

and sophistication among the elderly population,

increased competition in health care, and an oversupply of physicians. Comprehensive national

health insurance, a solution to the “malpractice

crisis)” and prevention of dementia are examples

of more distant but equally significant future possibilities.

Improvements in existing technologies and new

treatment modalities could improve the efficacy

of treatments, reduce the chance of complications,

and increase patients’ comfort and independence.

Technological developments might either raise or

lower the cost of treatment. Other developments,

including improved methods of pain control, and

increased portability and self-care, as well as innovations like artificial eyes and ears, will improve

the quality of life for chronically ill, disabled, and

technology dependent people. These marginal improvements and innovations could alter the balance of benefits and burdens of a particular technology and change attitudes about sustaining life

in persons who are elderly and disabled. In some

cases, treatment decisions might become easier

and standards of practice might change, leading

to increased use of life-sustaining technologies.

Some existing technologies will be wholly replaced. Just as kidney transplants eliminate the

need for dialysis in individual patients, other organ transplants or artificial organs may eventually obviate the need for other life-sustaining technologies. Very widespread use of such “definitive”

technologies could render today’s “halfway technologies” obsolete. Further in the future, effective preventive strategies might have even more

profound effects on human health and longevity.

However, with respect to decisionmaking, the effect of this kind of technological development will

be merely to push problems further into the future. If we learn to cure heart disease, we will

still face cancer, stroke, and other potentially fatal diseases. We might eliminate one cause of death

after another, but never all of them.

Neither the development of new technologies

nor improvements in existing technologies are

likely to make the fundamental issues of access,

quality, and cost of care, or the decisionmaking

dilemmas these create, go away. Instead, change

will be in the foci and details of current ethical,

legal, and clinical debates. OTA's analysis shows

that the current intense interest in nutritional support follows more than a decade of controversy

and court cases focused on mechanical ventilation. A possible next center of controversy is antibiotic therapy, which is only now gaining recognition as a life-sustaining treatment that raises

serious issues. Similarly, changes in technology

and in health services delivery will shift concern

from the hospital to community settings and transfer more decisionmaking responsibility from physicians to other health care personnel and to lay

caregivers.

In addition, social and technological change

will bring some new questions and intensify

some of the current problems. For example, as

both the law and medical practice change, new

kinds of legal challenges may arise. A recent instance in which physicians were charged because

they instituted unwanted treatment is said to have

opened the door to a new set of legal actions. The

old problems of cost and access to care may be

exacerbated if, as many people predict, the cost

of providing the full range of theoretically beneficial treatments continues to increase. Particularly high cost will be associated with the care

of individuals enabled to survive much longer than

currently possible. Continuing high cost (and increasing cost) could lead to a more prominent role

of third-party payers and government in health

care decisionmaking.

Other pertinent developments will not change

the basic decisionmaking problems but do promise to help us sort through difficult choices. These

include the procedures, policies, and technological developments that aim to supply more complete information on which to base decisions

and/or a more systematic way to assimilate it and

reach an informed conclusion. These range from

patient education to health professions education

and from computerized decision support systems

to ethical analysis.
28 ● Life-Sustaining Technologies and the Elderly

CONGRESSIONAL ISSUES AND OPTIONS

The following issues and options are derived

from information summarized in this chapter and

presented in detail in the full report. They address

problems that are common among several or all

of the life-sustaining technologies OTA studied and

that are realistic foci for congressional oversight

and legislative activity. Problem areas that are

unique to one or another technology and those

that do not suggest Federal involvement are presented in the findings and implications at the end

of each of the respective chapters. Ultimately, resolution of the diverse problems associated with the

use of life-sustaining technologies for elderly people and maximization of the potential good these

technologies can bring will require the creativity

and cooperation of philosophically and professionally diverse factions.

The first pair of issues and accompanying options addresses research needs that relate to all

of the subsequent issues. These include statistical data for improved health care planning and

delivery and basic research to expand the scientific knowledge base. The next pair of issues and

options addresses the concern of the requesting

congressional committees about access to lifesustaining treatments and how access is affected

by age, availability of reimbursement, and setting.

The third issue area addresses what Congress

might do to reduce problems in individual decisionmaking about the use of life-sustaining treatments. The two final issues and options address

questions that arose in the course of this assessment about the safety and efficacy of lifesustaining technologies and the quality of care provided for elderly people once a decision has been

made to provide, withhold, or withdraw life-sustaining technologies.

Associated with each policy issue are several

options for congressional action, including in each

case, no action. The order in which the options

are presented should not imply their priority. The

options are, for the most part, not mutually exclusive. In fact, a careful combination of options

might produce the most desirable effects. Further,

while these issues address life-sustaining treatment for elderly persons, many of them are applicable to patients of all ages.

The issues and options presented here are realistic foci for congressional oversight and legislative activity. Numerous other issues fall more

appropriately within the activities of nongovernmental bodies. Ultimately, resolution of the various problems associated with the use of lifesustaining technologies for elderly people and

maximization of the potential good these technologies can bring will require the creativity and cooperation of philosophically and professionally diverse factions,

Research

Issue 1: What could Congress do to strengthen

and expand the statistical database on the

utilization and costs of life-sustaining

technologies?

1.1 Take no action.

1.2 Provide funds and instruct HCFA to conduct

studies on the utilization of and expenditures

for life-sustaining technologies in hospitals,

nursing homes, and home care.

1.3 Instruct HCFA, the National Center for Health

Statistics, and the Veterans Administration

(VA) to develop and employ standardized

methods for calculating and reporting utilization and costs of Life-sustaining technologies.

Several factors argue against a Federal role in

the collection of additional health statistics and/or

establishment of a databank on the use of lifesustaining technologies. First, inaction at the Federal level (i.e., Option 1.1) would avoid the expenditures related to new data collection efforts. Additional medical recordkeeping and changes in

reporting methods might be opposed by the institutions and individuals who are asked to provide the data. In addition, some observers fear

that a recordkeeping system that specifies cost

and reimbursement for particular technologies

could lead to inappropriate economic pressures

to alter treatment patterns.

On the other hand, a major finding of this assessment is that neither the magnitude of current

problems nor predictions of future demand can
Ch. 1—Summary and Policy Options ● 29

be adequately estimated with existing data

sources. (The scarcity and unreliability of available data are substantial for young as well as

elderly patients.) Data on the utilization of and

expenditures for life-sustaining technologies come

mainly from small case studies whose results cannot be aggregated or generalized. The notable exception is dialysis, for which good utilization and

expenditure data are now maintained, but for

which the absence of data prior to Medicare coverage contributed to gross underestimates of the

eventual demand for this treatment. Improved

data would help inform public policy and, to the

extent that the necessary recordkeeping makes

clinical decisions more explicit, could also improve

decisionmaking in individual cases.

Sample surveys of Medicare patients and elderly

Medicaid patients who receive life-sustaining technologies (Option 1.2) would be a relatively easy

and relatively inexpensive way to expand the statistical database on utilization and Federal expenditures. Careful consideration must be given to

determining which life-sustaining technologies

warrant this attention. At a minimum, for each

selected technology, the studies should provide

data on: the patient’s age, diagnoses, treatment

settings, clinical outcome, discharge status, and

payments by Medicare and/or Medicaid. Information on expenditures by private insurers, patients,

and any unpaid charges would also be desirable,

to complete the cost picture. Parallel data on

elderly patients in hospitals, nursing homes, and

in their own homes would provide a rather comprehensive data set useful for a variety of analyses. Ideally, the data would permit cross-sectional

or longitudinal analysis, comparisons among subgroups within the elderly population, and comparisons of utilization and costs in different settings. Improved information about the current

situation would be essential input to any Federal

policy decisions about limiting or expanding health

care services, payment, or training. If maintained

continuously or updated periodically, these data

could be the foundation for predictions of future

demand for and cost of providing particular technologies. The arguments against Option 1.2 are

the same as those in support of Option 1.1.

Option 1.3 addresses the noncomparability of

utilization and cost data that are currently available. Problems in utilization data result from

different definitions of such terms as “chronic”

or “prolonged” use, dissimilar age categories, and

variations in codes for the pertinent medical and

surgical procedures. “Cost” data sometimes represent charges, sometimes expenditures, and exactly what is included is seldom specified. The

main argument against this approach is that the

definitions and methods developed may not adequately fit the diverse needs of potential users.

To reduce this possibility, standardized definitions

of utilization and costs should be developed with

input from all interested parties—especially hospitals, insurers, patients, health economists, and

policymakers.

Issue 2: What could Congress do to strengthen and expand scientific and clinical

knowledge related to the use of life-sustaining technologies, especially for

elderly people?

2.1 Take no action.

2.2 Authorize and appropriate funds administered

through the National Institute on Aging (NIA)

for studies of life-threatening conditions in the

elderly and the physiological and psychological responses of elder@ patients to alternative

treatments.

2.3 Provide research funds administered through

NIA to coordinate work on the development

of measures that better reflect the health status and reserve capacity of elderly people than

does chronological age.

2.4 Authorize and appropriate funds through the

Department of Health and Human Services

(DHHS) or NIH to develop and test patient classification systems and other aids to clinical

decisionmaking.

2.5 Authorize and appropriate funds to support

an NIH research planning conference focused

on the care of elderlypersons with life-threatening conditions.

Option 2.1 assumes that existing Federal support for technology assessment and basic research

related to life-sustaining technologies is adequate

and appropriately directed, that adequate nonFederal support is available, or that additional re-
30 ● Life-Sustaining Technologies and the Elderly

search would not reduce problems related to the

use of life-sustaining technologies. Proponents of

additional research argue that little research has

been focused on these topics and that information

is needed to reduce inappropriate and ineffective

utilization of life-sustaining technologies. Research

would require additional Federal expenditures or

shifting of funds from other areas. However, potential benefits, in terms of improved patient selection and improved quality of care, as well as potential reductions in the cost of care that is

provided, might outweigh the costs associated

with research.

Very little research has focused on the relationship between advanced age and the clinical outcomes of life-sustaining technologies. The resulting

information gaps contribute to clinical uncertainty

and prognostic errors, as well as suboptimal care

and poor outcomes. Added Federal support for

research on these topics (Option 2.2), especially

prospective and longitudinal studies, could lead

to improved understanding of the factors associated with different clinical outcomes, including

longevity. This knowledge could lead to the development of age-indicated modifications in treat -

ment that could, in turn, lead to increased survival of elderly persons with life-threatening

conditions, with improved functional capacity, reduced complications, and less recidivism.

It has been well established that physiological

changes occur at different rates and to different

extents in different people, with the effect that

individuals are increasingly dissimilar as they age.

While many physicians now recognize that chronological age masks this heterogeneity, age remains

the simplest single indicator of physiological status. Basic research on age-related physiological

change and response to stress, directed toward

the development of alternative measures of health

status and reserve capacity (Option 2.3) might lead

to improved accuracy in patient assessment and

prognosis.

Option 2.4 proposes Federal support for the continuing development and testing of patient classification systems and other aids to clinical decisionmaking. Some of these systems, currently

experimental, show considerable promise for identifying patients who are likely to benefit from

treatment and patients who are likely to die despite treatment. Refinement of these systems

and/or development of new approaches could reduce ineffective use of life-sustaining technologies.

Another approach to providing information that

could potentially improve decisionmaking would

be sponsorship of an NIH research planning conference, as suggested in Option 2.5. The conference would bring together experts in geriatrics

and in critical care, medical decisionmaking, health

services, and health law, with the goal of specifying and prioritizing areas of research on the care

of the life-threatened elderly. A consensus about

key issues would direct Federal funding to the

most fruitful areas, and the visibility of such a

conference could also help to stimulate private

funding for identified priority areas.

Access to Care

Issue 3: What could Congress do to protect

elderly persons from possible age-based

discrimination in access to life-sustaining

medical treatments?

3.1 Take no action.

3.2 Provide funds and instruct HCFA to conduct

studies of hospital and nursing home practices

regarding the offering of life-sustaining technologies to elderly patients.

3.3 Instruct HCFA to expand Medicare reimbursement for life-sustaining medical care.

(Also see Options 2.3, 5.3, and 6.4.)

Whether or not Federal action to prevent possible discrimination is warranted at this time depends on one’s evaluation of the current situation. One goal of recent public policy is to protect

the equal rights of all citizens, without regard to

race, sex, or age. Ensuring equal access to needed

health care is one of the responsibilities of policymakers. However, because health care resources

are not unlimited and because aging is universal,

“equal” access can include different interpretations of the kinds of care that must be offered,

under what circumstances, and for how long.

Some people argue that Medicare, because it provides health care mainly to elderly persons, is itself inequitable. On the other hand, anecdotes

about limited care for hospitalized Medicare pa-
Ch. 1—Summary and Policy Options ● 3 1

tients have stirred public concern and congressional attention. The extent to which elderly persons might be denied access to life-sustaining

technologies because of their age is not known;

however, limited Medicare hospital reimbursement,

health professionals’ ignorance of the good prognosis for many elderly patients, and residual ageism create considerable potential for age discrimination in access to these treatments.

Studies proposed in Option 3.2 would provide

information about the extent to which Medicare

patients and elderly Medicaid patients are offered

various life-sustaining technologies in hospitals and

nursing homes. This information would enable

peer review organizations (PROS)’ or other overseers to identify cases in which life-sustaining technologies were not accessible. It would not, however, be possible to draw from this conclusions

about age-based discrimination unless comparable information were available for younger patients as well. Requiring sampled providers to keep

records of all treatments offered to patients would

benefit those patients by encouraging physicians

to entertain and to discuss with patients all reasonable treatment options.

Current cost-containment pressures and limited

Medicare reimbursement provide hospitals and

physicians financial disincentives to admit and to

aggressively treat Medicare patients whose costs

are likely to exceed what Medicare will pay under PPS. Option 3.3 would remove or reduce those

financial disincentives. Adjustments could be made

in the level of reimbursement for DRG categories

that frequently involve life-sustaining technologies,

by creating new technology-specific reimbursement categories, by adding a severity of illness

measure to all DRGs, by increasing the age adjustment factor that already applies to some DRGs

or by raising outlier rates. Such actions would be

expensive and difficult to justify when there is

no proof that age-based discrimination is a serious problem. However, some people would view

the protection of access to health care as important enough to justify a preventive approach.

Whe function of PROS is to review’ the appropriateness of hospital admission for Niedicare patients, approlw pa~mlent, and monitor

qualit~f of care on appeal PROS also rm’iew individual cases in which

admission or paf’ment is thought to he inappropriate? cienied, and

cases in which discharge is thought to he premature.

Option 2.3 would reduce opportunities for treatment decisions based on unjustifiable generalizations about old age. Options 5.3 and 6.4 would

educate patients and providers, respectively, to

be better advocates for themselves and for their

elderly patients.

Issue 4: What could Congress do to increase

the availability of life-sustaining technologies in nonhospital settings?

4.1 Take no action.

4.2 Instruct HCFA to provide Medicare coverage

for life-sustaining antibiotic therapuy and shortterm nutritional support outside the hospital

setting.

4.3 Instruct HCFA to increase Medicare home

health care coverage for personnel who provide needed services for Medicare patients dependent on life-sustaining technologies in their

own homes.

4.4 Instruct HCFA to encourage the States to raise

Medicaid reimbursement available to nursing

homes that hire highly skilled personnel in order to provide life-sustaining technologies.

4.5 Authorize and appropriate funds to DHHS for

the support of research and demonstration

projects regarding the use of life-sustaining

technologies in nonhospital settings.

Current medical practice and reimbursement

policy favor the use of hospitals, and often their

ICUs, for application of most of the life-sustaining

technologies OTA studied. For patients who are

medically stable and who no longer require the

resources of a hospital, care in another setting

is generally less costly and facilitates a less restricted lifestyle. Therefore, most people think it

would be beneficial for patients, as well as more

efficient, if utilization of life-sustaining technologies were shifted as much as possible to nonhospital settings (Option 4.1). Expanded availability of life-sustaining technologies outside of

hospitals could, however, lead to inappropriate

use, with consequent increased cost. Further, the

quality of care could be jeopardized in these relatively unsupervised settings.

OTA found that some patients who could safely

be treated in alternate settings are confined to
32 ● Life-Sustaining Technologies and the Elderly

hospitals because of inability to pay for services

elsewhere. For some technologies, e.g., ventilation, the problem is that the unreimbursed portion of care, while it may be a small percentage

of the total cost, is often still very high. For two

of the technologies discussed in this assessment,

life-sustaining antibiotic therapy and short-term

nutritional support, Medicare reimbursement outside the hospital is completely unavailable. Option 4.2 suggests expansion of Medicare benefits

to cover these technologies. Option 4.3 goes a step

farther, proposing Medicare reimbursement for

the personnel needed to provide any life-sustaining

treatments outside of hospitals. Among these personnel are health professionals (e.g., respiratory

therapists, professional nurses), and nonprofessionals (aides).

Option 4.4 addresses the current difficulty in

nursing homes of hiring staff who have the necessary skills and credentials to provide complex

care. Most nursing homes do not admit patients

who are receiving mechanical ventilation, intravenous antibiotics, or TPN, and most are not

equipped to provide these treatments to residents

who need them. Inadequate and unpredictable

reimbursement make it difficult for nursing homes

to develop staff and services and, thus, limit outof-hospital options for persons who are medically

ready to be discharged from hospitals. Some nursing homes that do provide care for technologydependent persons have negotiated special reimbursement arrangements with Medicare or Medicaid on a patient -by-patient basis. For patients who

are eligible for Medicare nursing home benefits,

coverage could be extended beyond the current

100-day” limit. For technology-dependent Medicaid patients in nursing homes, HCFA could offer

States incentives to increase reimbursement.

Information regarding the relative benefits and

problems in providing life-sustaining technologies

in alternative settings is piecemeal and largely

anecdotal. Option 4.5 would support research and

demonstration projects to clarify the types of patients for whom alternatives to the hospital (and,

within hospitals, alternatives to the ICU), are safe,

economical, and contribute to the patient’s quality of life. Such projects could also provide information regarding the supportive services patients

need in different settings, alternative methods for

providing them, and the relative costs and benefits. One possible site for such projects is the teaching nursing home. An important component of

such programs would be their educational benefits, i.e., through the opportunity to train health

professionals within the institutions where projects go on and the dissemination of results to

health professionals in other institutions.

A main argument against Options 4.2 through

4.5 is that liberalization of reimbursement for

home care and nursing home care of technologydependent patients might create substantial new

demand for services and attendant new costs to

the Federal Government. In addition, some people fear that quality of care cannot be assured

outside the hospital. Other difficulties relate to

decisions about whether coverage should be for

all life-sustaining technologies or only designated

ones (i.e., Option 4.2), which personnel should be

reimbursed for which services (Option 4.3), and

whether particular treatment settings, rather than

all nonhospital settings, are to be equally encouraged.

Decisionmaking

Issue 5: What could Congress do to protect

the rights of elderly patients in decisions

about the use of life-sustaining interventions?

5.1 Take no action.

5.2 Authorize and appropriate funds for research

and demonstration projects that will provide

information about current decisionmaking

practices, problems, and possible solutions.

5.3 Support education of the public regarding

their rights as patients and mechanisms for

implementing these rights.

5.4 Instruct HCFA, the VA, and the Department

of Defense to require Federal health care facilities and health care facilities that are certified to treat Medicare and Medicaid patients

to: 1) record in a patient record any advance

directive the patient presents, and 2) honor

that directive.
Ch. 1—Summary and Policy Options ● 3 3

5,5 Instruct HCFA, the VA, and the Department

of Defense to require health care institutions

that receive Medicare and Medicaid reimbursements as well as all Federal health care institutions to: I) develop written policies describing the procedures they will follow in making

a decision about life-sustaining technologies,

and 2) communicate these policies to all patients.

5.6 Develop Federal legislation regarding advance

directives and procedures for the identification of surrogate decisionmakers.

(Also see Option 6.4.)

The proper role of the Federal Government in

health care decisionmaking is very controversial,

with opinions ranging from no role to a direct,

intimate role (as in the original “Baby Doe” regulations). Governmental involvement in the substance of treatment decisions for the life-threatened elderly would meet strong opposition from

health professionals and from patients of all persuasions. More widely accepted roles for Government would focus on either the provision of information (Option 5.2 and 5.3), the establishment

and protection of decisionmaking procedures (Option 5.4 through 5.6), or both. However, some people oppose all forms of governmental involvement,

arguing that decisionmaking procedures as well

as substantive decisions are the responsibility of

qualified health care professionals (Option 5.1).

OTA’s findings suggest several kinds of information about decisionmaking that could help reduce current problems. Option 5.2 calls for the

collection and analysis of descriptive information

about how decisions are made with regard to the

use of life-sustaining technologies for elderly people. This kind of research would provide evidence

on the extent to which elderly persons participate in decisions about the use of life-sustaining

treatments, identify the reasons patients’ wishes

are not always implemented, and would identify

any subgroups of the elderly population (e.g., extremely old persons, demented persons, nursing

home residents) whose rights may need greater

protection. Such research would also contribute

to determining the practical strengths and weaknesses of different kinds of advance directives and

different decisionmaking processes. However,

some people might perceive this kind of research

as an invasion of privacy.

Option 5.3 addresses the current scarcity of public education regarding patients’ rights, the importance of making known one’s wishes regarding life-sustaining treatments, and available

mechanisms for formalizing these wishes. This

option assumes that such education would result

in more people preparing some type of formal

advance directive (e.g., living will or durable power

of attorney) or, at least, discussing with their family

or physician their personal views regarding lifesustaining treatment. Increasing the number of

persons whose wishes are known should result

in an increase in the number of patients whose

wishes are honored. Some people have suggested

that having a clear directive from the patient is

the single best way to reduce unnecessary health

care expenditures. Opposition to such educational

efforts might come from those who fear that the

educators would advocate particular positions.

Options 5.4 and 5.5 reflect OTA’s finding that,

in many institutions, the approach to decisionmak -

ing about the use of life-sustaining technologies

is ad hoc. In most hospitals and nursing homes,

there is no mechanism for determining or registering a patient’s treatment preferences before

the need for a life-sustaining technology arises,

when it may not be possible to consult the patient.

In some cases, health care providers are not aware

that a patient who is decisionally incapable has

an advance directive. Even if they are aware of

the advance directive, they do not always follow it.

Formal institutional policies for decisionmaking

could help protect a patient’s right to participate

in treatment decisions and clarify the roles and

responsibilities of other participants in the decision (e.g., families, ethics committees). Institutional

policies would not necessarily offer any legal protection to patients, institutions, or individual caregivers, but they could potentially acquire considerable authority as they evolve into standards of

practice.

The Federal Government could require health

care institutions that receive Medicare and Medicaid reimbursements and Federal health care institutions to develop formal institutional policies

for decisionmaking (Option 5.5). Although many
34 ● Life-Sustaining Technologies and the Elderly

parties favor the establishment of policies for decisionmaking at the institutional level, it is not clear

whether such policies should be required by the

Federal Government. The number of hospitals,

nursing homes, and other health care facilities that

have formal institutional policies for decisionmaking appears to be growing. The recently announced JCAH requirement that hospitals and

nursing homes must have a policy for decisions

about resuscitation in order to be accredited by

JCAH is expected to further this trend. Thus, some

people believe that there is no need for a Federal

requirement for institutional policies for decisionmaking. Other people believe that a Federal requirement is needed to ensure that most, if not

all, health care facilities have such policies in place.

Even if the Federal Government were to require

health care institutions to have policies for decisionmaking, it is unclear whether the requirement

should address the content of those policies or

whether the content of the required policies should

be left to the discretion of each institution. If agreement is reached that content should be addressed

by the Federal Government, it is unclear whether

the requirement should specify questions the

policies must answer (e.g., how a patient’s decisionmaking capacity will be assessed or how a surrogate will be selected) or decisionmaking procedures that should be followed. Some people believe

that the content of decisionmaking policies should

be determined by individual institutions because

of differences in their purposes, practice environments, and patient populations. Others believe that

at least minimum standards should be included

to protect patients’ rights and ensure some consistency across jurisdictions and institutions. Selection of such standards would be difficult because

of disagreement about appropriate decisionmaking practices. 7

Option 5.6 suggests Federal legislation to authorize advance directives (living wills and durable

powers of attorney for health care) and to specify

procedures for identifying surrogate decisionmakers for patients who are not decisionally ca7As a follow-on to this assessment, OTA has commissioned a report on institutional policies for decisionmaking that will consider

these questions in more detail. That report will be available in early

1988.

pable and who have no advance directive. Federal legislation to authorize advance directives

would make these methods of documenting an

individual’s treatment preferences available to all

Americans, including those who live in States that

have not enacted statutes allowing advance directives. Federal legislation could ensure that a living will or durable power of attorney for health

care executed in one State would be accepted in

other States. Proponents of advance directives,

who view them as an important safeguard of patient autonomy, would probably welcome such

legislation. Yet disagreement about specific provisions of advance directives, e.g., whether they

should allow withholding or withdrawal of lifesustaining nutrition, hydration, and medications

and whether they should allow withholding or

withdrawal of treatment from persons who are

not terminally ill, would complicate the development and enactment of such legislation.

People who believe that life should be sustained

whenever it is technically possible to do so would

probably oppose Federal legislation authorizing

advance directives because the directives usually

allow withholding or withdrawal of treatment.

Some people would also object to Federal legislation in an area that has traditionally been governed by the States and might prefer Federal actions that encourage States to enact statutes

authorizing advance directives. Others might prefer that the Federal role be limited to support of

public education about advance directives (Option

5.3).

Federal legislation specifying procedures for

identifying a surrogate decisionmaker for patients

who are decisionally incapable and have no advance directive and defining the role and responsibilities of the surrogate could reduce confusion

about the legality of existing decisionmaking practices for these patients. Such legislation might be

modeled after the family consent laws now in effect in 15 States. Alternatively, the Federal Government could require health care instititutions

to have formal policies defining procedures for

surrogate decisionmaking as a part of the institution’s policy for decisionmaking, as in Option 5.5.

Objections to these approaches are similar to objections to Option 5.5.
Ch. 1—Summary and Policy Options . 35

Quality of Care

Issue 6: What could Congress do to improve

the quality of care associated with the use

of life sustaining technologies for elderly

people?

6.1

6.2

6.3

6.4

6.5

Take no action.

Instruct the Federal agencies engaged in technology assessment and clinical trials, i.e., the

National Center for Health Services Research

and Health Care Technology Assessment's Office of Health Technology Assessment (OHTA),

the Food and Drug Administration (FDA), NIH,

and OTA to make studies of life-sustaining

technologies a priority.

Provide Federal funds or tax incentives for research and development of improved life-sustaining technologies (equipment and products),

including refinements that simplify operation

and maintenance.

Authorize and appropriate funds to DHHS and

the VA to support education and training as

well as special practice models for health

professionals who care for the life-threatened

elderly.

Authorize and appropriate funds for DHHS

to develop model programs offering comprehensive support services to technologydependent elderly persons who need them.

This assessment has raised both general questions about efficacy and safety of some life-sustaining technologies and questions that are specific to the use of these technologies for elderly

patients. Problems arise from deficits in the knowledge base, the technologies, and the personnel.

Numerous activities that have potential benefits

in terms of ensuring the efficacy and safety of

life-sustaining technologies for elderly patients are

already underway. These include the regular activities of FDA, technology assessments by OTA and

OHTA, clinical studies by NIH, and support for

health professions training, including programs

to expand education and training in geriatrics and

gerontology. Some would conclude that these

activities are adequate. However, with respect to

special needs of the life-threatened elderly, none

of these programs goes very far.

Questions have been raised about the reliability of some equipment and products and about

undue complexity (and, therefore, cost) of others.

These questions suggest the need for assessment

of life-sustaining technologies in addition to those

OTA has studied and for correction of identified

problems. Option 6.2 would provide information

about any problems related to particular medical

technologies used to sustain life. This would inform policy decisions about whether or not a particular technology ought to be widely available,

or reimbursed, and clinical decisions about its use

for individual patients. A practical drawback to

Option 6.2 is that there area large number of lifesustaining technologies, and new ones being developed, and only a fraction of them can be assessed. Also, unless tied to approval by FDA or

to reimbursement decisions, the results of these

assessments might have little effect. Option 6.3

would encourage R&D in Federal laboratories,

provide grants to universities and major medical

centers, and support special incentives to the private sector to improve existing technologies and

to develop reliable and relatively simple technologies suitable for use in the home or nursing home.

Option 6.4 would support curriculum development, instruction, and practice models focused

on: 1) geriatrics and gerontology, and 2) humanistic

care of the dying, in order to simultaneously increase the supply and upgrade the capabilities of

pertinent health professionals. Programs would

target physicians, nurses, and allied health professionals still in training as well as health professionals already in practice.

The Federal Government currently supports

education and training in geriatrics and gerontology through programs of the NIA, National Institute of Mental Health, Administration on Aging,

Health Resources and Services Administration

(HRSA), and the VA. Despite dramatic increases

in the numbers of physicians and other health

professionals committed to geriatrics, serious manpower shortages and barriers to recruitment suggest that more needs to be done. Moreover, existing education and training does little to specifically

prepare physicians or nurses to care for elderly

persons who become candidates for life-sustaining

technologies. Pertinent curricular innovations,

e.g., clinical ethics, death and dying, health law,
36 ● Life-Sustaining Technologies and the Elderly

decision analysis, assessment of patients’ decisionmaking capacity, and interdisciplinary teamwork,

are relatively new and, under current cost-containment strategies, their continuance is threatened. There is no cross-training between specialists in geriatrics and specialists in critical care.

Many people assume that providing more education and training in these areas would improve

the quality of care for the life-threatened elderly.

There has been, however, very little research to

evaluate the benefits of this kind of education,

and, therefore, limited evidence that such programs have a significant effect on treatment

outcomes.

Option 6.5 recognizes that many patients who

are chronically dependent on a life-sustaining technology have unmet needs for financial and other

kinds of assistance, such as attendants, transportation, special equipment, architectural modifications, group purchasing of medical supplies, etc.

New Federal programs that target specific groups

of patients for special benefits could be criticized

as perpetuating a disjointed approach to health

care, and new expenditures would be required.

In France and England, comprehensive programs

for ventilator-dependent patients have proved to

be cost-effective and of great benefit to patients,

enabling some technology-dependent persons to

live in their own homes, with relative independence and maximum quality of life.

Issue 7: What could Congress do to improve

the quality of care for people from whom

life-sustaining treatments are withheld or

withdrawn?

7.1 Take no action.

7.2 Instruct HCFA to extend eligibility criteria for

hospice care and palliative treatments, to make

them more widely available.

7.3 Appropriate funds and direct NIH or HRSA

to support research and training to study the

dying process and to develop methods of palliative care for patients from whom Lifesustaining technologies have been withheld

or withdrawn.

Federal involvement in research, health professions education, and reimbursement for health

care have greatly benefited patients who want aggressive medical treatment. Good care has been

widely available and the financial barriers largely

removed. However, for patients from whom lifesustaining technologies are withheld or withdrawn, treatment options are undeveloped, and

resources are scarce. The single focus of Federal

efforts on behalf of these patients is hospice care

and the provision of limited hospice benefits under Medicare.

The hospice model of care was developed to

meet the physiological and psychological needs

of patients who have been diagnosed as terminally ill and who choose to forgo aggressive treatment. Most hospice patients are victims of incurable cancers who consciously requested this kind

of care. Hospice care has not been available in

this country to persons who cannot make decisions about their care and those who have not

been designated terminally ill. The potential benefits for some such patients, for example, severely

demented patients who cannot be dialyzed, decisionally capable ESRD patients who choose to

discontinue dialysis, and patients with chronic obstructive pulmonary disease who refuse mechanical ventilation, have not been studied. Option 7.2

would make hospice care more widely available.

Anecdotal evidence suggests that, following a

decision to withhold or withdraw life-sustaining

technologies, patients are sometimes essentially

abandoned. Health professionals may simply have

nothing to offer these patients. Therapeutic options are exhausted or rejected; methods and resources for pain control and bereavement counseling are undiscovered, illegal, or unfunded,

Option 7.3 is to support behavioral, pharmacological, and health services research geared

toward discovering and then meeting the needs

of this group of patients. For these people, Option 7.3 would provide some answers about the

potential benefits of existing forms of hospice care,

develop options to the use of life-sustaining technologies, and then train health care professionals

in these methods. The cost of such programs might

be returned many times by reduced expenditures

for life-sustaining technologies. Of all the many

research needs identified in this assessment, those

referred to in Option 7.3 are among the most important.
Chapter 2

The Context of the Report
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . 39

Changing Technology . . . . . . . . . . . . . . . . . . 40

Technology Development and

Diffusion . . . . . . . . . . . . . . . . . . . . . . . . . 41

Government Regulation, Coverage

Decisions, and Technology

Assessment. . . . . . . . . . . . . . . . . . . . . . . . 42

Treatment Settings . . . . . . . . . . . . . . . . . . . . 44

Hospitals and Intensive Care Units.. . . . . 44

Nursing Homes . . . . . . . . . . . . . . . . . . . . . . 45

Home Health Care . . . . . . . . . . . . . . . . . . . 46

Perspectives on Life-Sustaining

Technologies and Related Issues . . . . . 47

Opinions About Life-Sustaining

Technologies. . . . . . . . . . . . . . . . . . . . . . 47

Perspectives on Withholding and

Withdrawing Life-Sustaining

Treatment. . ..., . . . . . . . . . . . . . . . . . . 48

Opinions About ’’Quality of Life” as a

Factor indecisions AboutLifeSustainingTreatment . . . . . . . . . . . . . . 51

Attitudes About the Patient’s Role in

Decisions About Life-Sustaining

Technologies. . . . . . . . . . . . . . . . . . . . . . 52

Views on Surrogate Decisionmaking . . . . 54

Opinions About Euthanasia. . . . . . . . . . . . 55

Societal Responses to the Dilemmas

Associated With Life-Sustaining

Technologies. . . . . . . . . . . . . . . . . . . . . . 57

Legal and Ethical Debate. . . . . . . . . . . . . . 57

Court Cases. . . . . . . . . . . . . . . . . . . . . . . . . 57

Determination of Death . ........ . . . . . 59

State Legislation Authorizing Living

Wills and Methods for Designating

a Surrogate Decisionmaker . . . . . . . . . . 59

Guidelines for Decisionmaking . . . . . . . . . 60

Institutional Policies ., . . . . . . . . . . . . . . . . 62

Institutional Ethics Committees . . . . . . . . 63

The Baby Doe Regulations . . . . . . . . . . . . 63

Hospice . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

The Cost of Care . . . . . . . . . . . . . . . . . . . . . 65

Determining Health Care Costs . . . . . . . . 66

The Cost of Care at the End of Life ... 67

How Technology Affects Health

Care Costs... . . . . . . . . . . . . . . . . . . . . . 70

Page

Public Programs That Pay for Medical

Care for Elderly People. . . . . . . . . . . . . 71

Public Programs and the Concept of

a Right to Health Care. . . . . . . . . . . . . 72

Containing Health Care Costs. . . . . . . . . . . . 73

Medicare’s Prospective Payment System

for Hospital Care . . . . . . . . . . . . . . . . . . 73

Cost-Containment Measures in Public

Programs That Pay for Nursing

Home and Home Health Care . . . . . . . . 75

Why Focus on the Elderly? . . . . . . . . . . . . . 76

Growth of the Older Population. . . . . . . . 76

Patterns of Disease and Mortality . . . . . . 77

Reasons Why Decisions AboutLifeSustainingTreatments or Their

Outcome May Differ for

People . . . . . . . . . . . . . . .

Chapter 2 References . . . . . .

Figures

Figure No,

2-1. Technology Development

Diffusion . . . . . . . . . . . . .

Elderly

. . . . . . . . . . . . 78

. . . . . . . . . . . . 80

Page

and

. . . . . . . . . . . . 41

2-2. Changes in Physiological Functioning,

by Age . . . . . . . . . . . . . . . . . . . . . . . . . . . 79

Tables

Table No. Page

2-1. Responsibility for Decisions About

Medical Treatment, Harris Poll, 1982 . 54

2-2. Who Should Make Treatment

Decisions When the Patient Is Too

Sick To Decide, Harris Poll, 1982 ..,.. 54

2-3. Legal Cases Involving Decisions About

Withholding or Withdrawal of LifeSustaining Treatment From Elderly

Patients . . . . . . . . . . . . . . . . . . . . . . . . . . 58

2-4. Medicare Reimbursements by

Decedents in Their Last Year of

Life, and Survivors in 1978 . . . . . . . . . . 68

2-5. Growth of the Older Population,

1900 to 2050 . . . . . . . . . . . . . . . . . . . . . . 77

2-6. Top Ten Causes of Death,

Population Aged 65 and Over,

United States, 1980 . . . . . . . . . . . . . . . . . 78
Chapter 2

The Context of the Report

INTRODUCTION

This chapter provides an overview of the technological developments, treatment settings, public attitudes and opinions, government policies,

and demographic changes that are the historical

and societal context for this OTA report. The chapter presents background information that is common to the other chapters and is the basis for the

congressional concerns that led to the assessment.

None of the topics is analyzed in detail, although

each could be the focus of a full assessment.

In the early 1900s, there were few effective

treatments for life-threatening diseases. Medical

care consisted primarily of palliative treatments

derived from clinical experience and intuition and

intended to mitigate the effects of diseases that

were considered natural and inevitable. Since

then, advances in biomedical science and technology have produced effective treatments for

some diseases, enabling doctors to keep people

alive who would certainly have died previously.

The use of these treatments, particularly antibiotics, has altered life expectancy and the age distribution of our population. The availability of the

treatments has had far-reaching effects on medical practice and on attitudes and expectations

about illness, death, and dying.

In part because of the availability of increasingly

complex medical treatments, more people are

treated in hospitals now than 50 years ago, and

more die there. More physicians, nurses, and other

health care professionals are involved in the care

of each patient and are thus aware of and potentially involved in treatment decisions. More people are cared for in nursing homes and by home

health agencies and outpatient clinics than ever

before, and more health care professionals and

others in these multiperson settings are aware of

and potentially involved in life -and death decisions

for these patients. Thus, decisions that would once

have been made privately by an individual physician, who might or might not have consulted with

the patient or family, are now made in the view

of many different people who have diverse opinions and beliefs about the decision and the decisionmaking process.

The inherent difficulty of life-and-death decisions involving medical technologies and the increasingly public nature of the decisionmaking

process have led to intense clinical, legal, and ethical debate; to court cases that define the rights

of patients to refuse treatment and the role of families, physicians, and health care institutions in

the decisionmaking process; to State legislation

on advance directives and surrogate decisionmaking; and to the formulation of guidelines for decisionmaking by government-appointed task forces

and commissions, professional associations, citizens

groups, and others. Much of this debate and the

relevant court cases, legislation, and guidelines

address questions about possible overtreatment

and about appropriate procedures for deciding

whether or when life-sustaining treatment should

be withheld or withdrawn.

Concurrently, rising health care costs and expenditures have generated widespread public concern and have led to changes in medical practices

and in private insurance and public programs that

pay for medical care—changes intended to limit

health care costs and spending. The pressure for

cost containment has added another dimension

to the debate about life-sustaining technologies.

In the past, a decision to use or withhold a lifesustaining treatment for an individual patient was

based on consideration of the patient’s physical

condition, legal and ethical constraints, and, in

some cases, the wishes of the patient and family.

The cost of medical care has always been a consideration for patients who are uninsured, but

most people, particularly elderly people, are insured, and most are covered for life-sustaining

treatments (although sometimes only when the

treatments are provided in a hospital). Thus,

elderly patients, their families, and physicians have

generally been insulated from cost considerations

with regard to life-sustaining treatments. Since

39
40 ● Life-Sustaining Technologies and the Elderly

about 95 percent of elderly people are covered

by Medicare, and some are also eligible for Medicaid, Veterans Administration (VA), or other publicly funded programs, the cost of life-sustaining

treatments for them has been primarily a public

cost .

Some ethicists have theorized about the relationship between individual treatment decisions

and allocation of scarce resources on a societal

level (see ch. 4). Likewise, government-appointed

task forces and commissions that have issued

guidelines for decisionmaking have concluded that

health care institutions and individual clinicians

can justifiably limit certain treatment options on

an institutional basis in order to allocate scarce

resources more equitably (136,153). In the past,

however, the public cost of care has generally not

been a factor in individual treatment decisions.

Nor have the courts that have ruled on cases involving withholding and withdrawal of life-sustaining treatment recognized the public cost of

the treatment as a valid consideration in individual treatment decisions.

Recent changes in Medicare and other public

programs have created institutional pressures on

physicians and other health care professionals to

reduce costs and thus have introduced consideration of the public cost of care into individual treatment decisions on a wide scale. These changes

have led to new concerns about possible undertreatment and limitations on access to appropriate care-concerns that are superimposed on the

unresolved questions about possible overtreatment and about procedures for deciding whether

or when life-sustaining treatment should be withheld or withdrawn.

Along with the increased awareness and alarm

about health care costs and expenditures, there

is a growing recognition among government officials, policy analysts, and the public of the growth

of the elderly population, both in absolute numbers and as a proportion of the whole population.

Elderly people are more likely to experience lifethreatening illnesses than younger people. Health

care costs are generally higher for elderly than

for younger people, and a significant percentage

of the medical care of elderly people is publicly

funded. Finally, since elderly people are the primary group covered by Medicare, they are also

the group affected by changes in Medicare policies. These factors and others discussed in this

chapter have focused public attention and congressional concern on the use of life-sustaining

technologies for the elderly.

CHANGING TECHNOLOGY

Advances in life-sustaining medical technology

during this century have built on knowledge accumulated during preceding centuries, but the pace

of discovery and technological change in recent

decades is unprecedented. Major advances began

in the 1920s with the isolation of insulin for treatment of diabetes, the invention of the first mechanical ventilator (the “iron lung”), and the discovery of penicillin. Sulfa drugs were first used

in the 1930s. The first artificial kidney was used

during World War II, although long-term kidney

dialysis was not possible until the 1960s.

The 1950s saw the first open-heart surgery, discovery of the polio vaccine, and rapid development of mechanical ventilators. The first intensive care units (ICUS) were established in this

period.

In the 1960s, cardiopulmonary resuscitation

(CPR), coronary artery bypass surgery, kidney

transplants, total parenteral nutrition, and radiotherapy and chemotherapy for cancer were introduced. Coronary care units (CCUs) were established. The first heart transplant occurred in 1967.

The 1970s brought continued progress in the

treatment of cancer, heart disease, heart attack,

and stroke. With the introduction of the drug cyclosporine in 1979, the biggest obstacle to successful transplantation—immunological rejection—

was reduced. The first liver transplant occurred

in the 1970s, and heart and kidney transplants

became more common, In 1985, about 600 people received liver transplants; 700 received heart

transplants; and about 8,000 received kidney

transplants (30). In 1982, an artificial heart was

placed in a living patient for the first time.
Ch. 2—The Context of the Report ● 4 1

The pace of technological change is increasing.

Although it is impossible to predict the next breakthrough, new technologies to treat life-threatening

diseases are constantly being developed. In 1984-

85, OTA polled academic researchers, trade associations, medical device companies, and government analysts to identify medical technologies

likely to appear in the next 5 to 15 years. Responses

to the poll indicate that future developments in

life-sustaining treatments may occur in the areas

of artificial organs and transplanted organs and

tissues; cancer vaccines; implantable drug delivery systems for cancer and other diseases; and

immunosuppressive drugs, Improvements in medical imaging and other diagnostic and information technologies are expected to improve diagnostic accuracy and medical decisionmaking (201).

Some analysts say that we now have, or will soon

have, the capability to maintain biological existence

indefinitely (55). Others say that the timing of

death-once a matter of fate—is now a matter of

human choice (132,136)153).

Technology Development

and Diffusion

New medical technologies, including life-sustaining technologies, are developed as an outgrowth

of basic biomedical and applied research and targeted development (see fig. 2-1). Some are made

possible by engineering breakthroughs that allow,

for example, miniaturization of devices or the use

of a new power source.

The Federal Government pays for about half

of all health-related research and development.

Basic biomedical research is supported primarily

by the National Institutes of Health (NIH), but other

agencies of the Department of Health and Human

Services (DHHS), the Department of Defense, the

Department of Energy, the VA, and other Federal

agencies also fund health-related research (231).

Private industry and nonprofit organizations

pay for the other half of health-related research

and development. Most applied research and targeted development is supported by private industry (199). Nonprofit organizations, such as the

American Heart Association and the American

Cancer Society, fund both basic and applied biomedical research.

Since the Federal Government pays for such a

large proportion of health-related research, funding decisions by Federal agencies influence the

direction of research and the areas in which development of new technologies is most likely. Massive Federal funding for research on heart disease in the 1960s and 1970s, for example, was an

important factor in the subsequent development

of new technologies for treatment of cardiovascular disease.

Figure 2-1 .—Technology Development and Diffusion
42 . Life-Sustaining Technologies and the Elderly

Diffusion of new technologies into the health

care system results from decisions to adopt a technology by physicians, hospital administrators, and

others and decisions to use the technology by physicians and, to some extent, patients and their

families. Whether reimbursement for the technology is available obviously affects these decisions (37)199). Since about 90 percent of hospital

care for persons of all ages is paid by private insurance and public programs, the coverage and

reimbursement policies of private insurance and

public programs strongly influence which technologies are adopted and used in hospitals. Medicare pays for about three quarters of the hospital

care of elderly people. The remaining one quarter

is divided about evenly between other public programs, primarily Medicaid and the VA, and private sources, including private insurance and direct payments by individuals (205). As a result,

Medicare policies and the policies of other public

programs and private insurers influence which

technologies are adopted and used for elderly people (199,200).

Until recently, Medicare, most other public programs, and private insurers reimbursed hospitals

on the basis of costs they incurred in treating patients. Cost-based reimbursement generally encouraged the use of medical technologies. Medicare’s Part A prospective payment system (PPS),

introduced in 1983, reimburses hospitals at a fixed

rate per case, based primarily on the patient’s diagnosis, PPS, which is discussed at greater length

later in this chapter, is expected to encourage adoption and use of technologies that reduce costs and

length of stay, and discourage adoption and use

of technologies that increase costs and length of

stay (199)200).

Public programs and private insurance generally pay for a smaller percentage of health care

expenditures in outpatient clinics, nursing homes,

and in the patient’s home than in hospitals, Nevertheless, the coverage and reimbursement policies

of public programs and private insurers are important determinants of the adoption and use of

medical technologies, especially very costly technologies, in these settings, For elderly people,

Medicare coverage and reimbursement policies

are most important.

The methods used by public programs and private insurance to pay for physician services also

affect adoption and use of medical technologies.

Medicare’s current fee-for-service method of paying for physician services encourages physicians

to use medical technologies because they are paid

for each service performed. Similar payment

methods of other public programs and private insurance also encourage adoption and use of medical technologies. Alernate methods, such as the

per capita payment method used by health maintenance organizations (HMOs), may discourage

adoption and use of some technologies (203).

The policies of public programs and private insurers that affect the adoption and use of medical technologies also influence the decisions of

medical device and drug manufacturers about

areas of research and product development. The

financial incentives created by PPS, for example,

are expected to encourage research and development of technologies that reduce a patient’s length

of stay and reduce the cost of a patient’s hospitalization to the hospital.

Government Regulation, Coverage

Decisions, and Technology

Assessment

Drugs and medical devices are regulated by the

Food and Drug Administration (FDA). Medical procedures are not regulated by FDA, but the process by which they are approved for coverage by

Medicare may involve an assessment of their

safety and effectiveness.

The Medical Device Amendments of 1976 that

mandated FDA regulation of new medical devices

defined three categories of devices based on the

potential risk associated with each category (23,

200):

●

●

Class I devices are those that generally present

little risk. Manufacturers must notify FDA before such devices are marketed and must conform to good manufacturing practices in producing, packaging, storing, and installing the

devices.

Class II devices are those for which performance standards must be met, according to the
Ch. 2—The Context of the Report ● 4 3

1976 legislation. Most Class II devices are now

regulated as if they were Class I devices,

however, because the required performance

standards have not been developed.

● Class III devices are those that support life

and those whose use involves a relatively high

risk of illness or injury. Manufacturers are

required to demonstrate the safety and effectiveness of Class 111 devices before they are

marketed.

A 1984 OTA report on medical devices discussed

the FDA regulatory process in detail and concluded that the effectiveness of the process could

not be determined because of lack of reliable information about the incidence of illness, injuries,

or other problems associated with the use of medical devices (199). Since then, new regulations have

required manufacturers to report problems with

medical devices to FDA. The Health Industry Manufacturers Association has complained that the

reporting requirements are vague, thus compliance is difficult (54). Whether the requirements

ensure that serious problems in the safety and

effectiveness of medical devices will come to FDA’s

attention is unclear.

Medicare, other government programs, and private insurers generally do not cover drugs or medical devices that have not been approved by FDA.

In addition, by law Medicare can only cover medical technologies that are “reasonable and necessary” for diagnosis, treatment, or improved functioning of a malformed body part. Beyond these

basic requirements, which are themselves subject to varied interpretation, the criteria and procedures for determining which medical technologies will be covered by Medicare are even less

clear.

Some coverage decisions are made at the national level by the Health Care Financing Administration (HCFA). Most, however, are made by

Medicare intermediaries and carriers (the contractors who process Medicare claims in each geographic area). Thus, coverage decisions may vary

from one region to another. Sometimes they are

made on a case-by-case basis. National coverage

policies have evolved primarily in response to

questions from individual contractors about paying for a specific technology, HCFA decisions about

coverage have limited legal or regulatory authority though, and contractors may or may not comply with them (199,200 ).’

Some Medicare coverage decisions are based on

recommendations of the Office of Health Technology Assessment (OHTA) in the National Center for Health Services Research and Health Care

Technology Assessment. OHTA assesses the safety

and effectiveness of medical devices and procedures (127), but it evaluates only a small proportion of the thousands of new technologies introduced each year.

Some devices that FDA has approved for marketing are not recommended for Medicare coverage by OHTA, often because of a lack of demonstrated effectiveness. HCFA is not required to

follow OHTA recommendations, however, and

some OHTA recommendations have been overridden (37).

A recent report on technology assessment and

Medicare coverage decisions (112) recommended

many changes in the way that these decisions are

made, including the development of a uniform national process for coverage decisions, an expanded

role for OHTA in technology assessment and coverage decisions, and the establishment of a national

panel of experts to assist with the evaluation of

medical and cost data to determine cost-effectiveness. In April 1987, HCFA requested public comment on new procedures for making coverage decisions (62).

The Prospective Payment Assessment Commission (ProPAC), an agency established by Congress

to monitor PPS, advises DHHS about adjustments

in hospital reimbursement rates, including adjustments required because of technological changes.

For this reason, it is charged with conducting and

sponsoring medical technology assessments. Thus

far, however, ProPAC has done little technology

assessment, primarily because of budget limitations, and relies instead on published literature

%ome medical device manufacturers believe that the arbitrary

nature of Medicare procedures for determining coverage discourages

private sector commitment to expensive R&D efforts on devices that

might be beneficial, especially devices targeted for nonhospital settings (49).

63-216 0 - 87 - 2 : QL 3
44 . Life-Sustaining Technologies and the Elderly

and other available information about safety and

effectiveness to back up its recommendations

(148).

NIH sponsors clinical trials to assess new technologies. NIH also sponsors consensus development conferences that are intended to resolve

questions about the clinical application of medical technologies. A panel, including research scientists, physicians, nurses, patients, lawyers, ethicists, economists, and others, evaluates available

information about a medical technology and then

issues a consensus statement. Since the initiation

of the consensus development process in 1977,

conferences have been held on about 60 topics,

including coronary artery bypass surgery (March

1981), critical care medicine (March 1983), and

management of pain (May 1986). With its focus

on clinical applications, the NIH consensus development process goes beyond determination of

safety and effectiveness to address questions about

how the technology should be used and which

types of patients it will benefit.

In addition to OHTA and NIH, several States and

at least 45 private groups also have medical technology assessment programs, The American Medical Association sponsors a Diagnostic and Therapeutic Technology Assessment Project, for example,

and the American College of Physicians sponsors

a Clinical Efficacy Assessment Project, The American Hospital Association, the Blue Cross and Blue

Shield Association of America, other insurers,

manufacturers, and universities also conduct medical technology assessments (37,127,148).

TREATMENT

Hospitals and intensive Care Units

Over the past 20 to 40 years, the use of hospitals as a setting for life-sustaining treatment and

as a place to die has increased. One reason for

this change is that the special equipment, highly

trained staff, and intensive monitoring needed by

patients receiving complex medical technologies

are usually only available in hospitals.

Hospital ICUs were first setup in the 1950s primarily to provide the intensive monitoring required by the large number of polio patients reDespite these assessment activities, some analysts complain that new technologies are introduced into the health care system too soon, before there has been adequate evaluation of their

safety, effectiveness, and appropriateness for

specified applications (36,91). Other analysts suggest that the lengthy period required for assessment, approval, and coverage of new technologies

may hamper timely diffusion of valuable new technologies. One recent review found that an average of 62 months elapsed between the beginning

of the FDA regulatory process and final approval

of new devices for marketing. OHTA assessments

required an average of 26 months (37).

The Institute of Medicine recently established

a Council on Health Care Technology to encourage

the development and use of health care technology assessment. The new Council will serve as

an information clearinghouse on technology assessment. It will identify and develop assessment criteria and methods, promote training and education in technology assessment, and coordinate and

contract for technology assessments (87).

Some observers have suggested that one way

of lessening the problem of allocating scarce resources on a societal level and improving individual treatment decisions is to provide physicians

with more and better information about the effectiveness of specific technologies (66,91,168).

This report discusses whether such information

is available with regard to elderly patients and

the five technologi

SETTINGS

ceiving mechanical

es OTA studied.

ventilation (27). By 1958, about

one-fourth of all community hospitals with more

than 300 beds had an ICU. Now at least 80 percent of hospitals have an ICU (27).

Another reason for the increased use of hospitals is the financial incentives for inpatient as opposed to outpatient treatment created by the Medicare and Medicaid programs enacted in 1965.

Although little information is available about the

use of hospitals for life-sustaining or terminal care

in the first decades of this century, and data for
Ch. 2—The Context of the Report ● 4 5

later periods are incomplete and frequently not

comparable, it can be shown that the greatest increase in hospital use in the last year of life

occurred in the mid to late 1960s, after the introduction of Medicare and Medicaid (170).

A third reason for the increased use of hospitals as a setting for care of severely and terminally ill people is that, unlike 40 to 50 years ago,

many Americans today have had little direct experience taking care of a very sick or dying person. For this and other reasons, they may be unwilling or unable to care for such persons at home

(51).

The shift to hospitals and other institutions as

a place to die began about the time of or just after

World War II, The percentage of people of all ages

who die in hospitals or other institutions increased

from 37 percent in 1937, to 50 percent in 1948,

and 61 percent in 1961 (170). By the 1970s, more

than 70 percent of all deaths occurred in hospitals or other institutions (25,108), and the percentage may be even higher now (51,73).

Among elderly people, the percentage of persons who die in hospitals decreases with age. In

1984, of all persons age 65 to 74 who died, 68 percent died in hospitals, compared to 62 percent

of those age 75 to 84 who died, and about 50 percent of those over age 85 who died (217). Conversely, the percentage of persons who die in nursing homes increases with age.

The use of hospitals and ICUs for the care of

severely and terminally ill people has two important implications for decisions about life-sustaining

technologies. First, there is a general presumption in favor of aggressive treatment in these settings. Factors that contribute to that presumption

are the availability of equipment and skilled staff

in hospitals, the fact that hospitals and ICUs are

established to treat illness, the attitudes and training of many physicians and other health care

professionals, and the perceived vulnerability of

these institutions to malpractice charges for failure to treat.

Secondly, decisionmaking is often more complex

in multiperson settings than when only a single

physician, patient, and family are involved. Although final authority for treatment decisions in

hospitals and ICUs may rest with the patient’s personal physician, the patient, and the family, many

other people, including consulting and staff physicians, residents, nurses, and allied health professionals, may have information about specific patients and expertise that are relevant to treatment

decisions. Representatives of the institution, including administrators and lawyers, may have

both information and concerns about the impact

of these decisions on the institution. Clergymen

and other professional and lay counselors are also

often involved.

Sometimes these other health care professionals,

institutional representatives, and counselors play

as great or greater roles in implementing decisions about life-sustaining treatments and responding to their effects than the patient’s primary physician or family. Nurses are a good example (141,

185). According to one observer:

The nurses do not set the course of treatment,

or decide when the treatment must end. The

nurses make no life-or-death choices for these

patients—not publicly anyway.

All the nurses do is cope with them, full time,

over and over again. All the nurses do is look

square in the face, longer and more directly than

anybody else in medicine or the law, at the effect

of decisions that other people make (70).

When the knowledge, perspectives, and values

of nurses and other persons involved in the care

of patients are not incorporated into the decisionmaking process, conflict may arise with regard

to individual treatment decisions, professional

roles, institutional policies, or all three (116,141,

187)229,232). Such conflict generates pressure for

professional and institutional guidelines for decisionmaking and sometimes erupts into legal

battles.

Nursing Homes

Nursing homes are a common treatment setting

for severely debilitated and terminally ill elderly

people, and thus a place where decisions about

life-sustaining treatments are made. Use of nursing homes has increased considerably since Medicaid, and to a lesser extent Medicare, reimbursement became available. The percentage of all

elderly people living in nursing homes and homes
46 . Life-Sustaining Technologies and the Elderly

for the aged grew from less than 2 percent in 1950

to about 5 percent in 1980 (107).

Nearly one-fourth of those over age 85 are in

nursing homes at any one time, and many very

old people die in nursing homes. In 1978, for example, 38 percent of decedents over age 85 died

in nursing homes, compared to only 9 percent

of decedents age 65 to 74 and 23 percent of decedents age 75 to 84 (119).

As in hospitals and ICUs, many different people are involved in the care of nursing home residents and are thus aware of and potentially involved in treatment decisions. This situation may

lead to some of the same decisionmaking problems in nursing homes as in hospitals.

Little is known about the presumption for or

against life-sustaining treatment in nursing homes.

Anecdotal evidence suggests that some nursing

homes present themselves to residents, families,

and the community as health care institutions intent on rehabilitation of their residents. Some of

these facilities seek to minimize the awareness of

death in the facility and prefer to transfer residents to a hospital when death seems imminent.

Other nursing homes see themselves more as

a home for the resident. These facilities may prefer not to transfer severely debilitated or terminally ill residents to a hospital when death seems

to be imminent and may instead emphasize supportive care in the nursing home. Even in these

facilities, however, fear of legal ramifications may

result in decisions to provide life-sustaining treatment for such residents, sometimes in opposition

to the resident’s wishes, as the following example suggests:

there. -

Home Health Care

Over the past 10 years, home health care has

become increasingly common, partly because of

the recognition that it can be less costly than hospital or nursing home care; partly because most

people prefer to remain in their own homes; and

partly because technological developments now

make it possible to provide many life-sustaining

treatments, including mechanical ventilation, dialysis, nutritional support, and intravenous antibiotics in the home (99).

Home health care has become “big business)”

with estimates for all home health care products

and services of $2 to $4 billion annually. Continued

growth is expected as a result of PPS and other

public and private cost-containment measures that

are resulting in shorter hospital stays and earlier

discharges (22)38,59).

Some observers fear that the involvement of private businesses and the potential for financial

profit in home health care will lead to overuse

of life-sustaining technologies in the home for severely debilitated or terminally ill persons who

may not benefit from them. Others fear that lack

of reimbursement for some life-sustaining treatments provided in the home may wrongly restrict

their use. The report addresses the relationship

among treatment setting, patient selection criteria,

the availability of reimbursement, and the use of

the five technologies OTA studied.
Ch. 2—The Context of the Report . 47

PERSPECTIVES ON LIFE-SUSTAINING TECHNOLOGIES AND

RELATED ISSUES

New life-sustaining technologies are generally

greeted with wonder and appreciation. Case histories of people whose lives they have saved are

reported in the media, and the scientists, engineers, clinicians, and patients involved in their development and first use are regarded as heroes.

Recognition of problems associated with the technologies or their use for certain purposes comes

later.

This section reviews people’s opinions, beliefs,

and attitudes about life-sustaining technologies

and related issues as they have been reported in

the media, public opinion polls, and elsewhere.

Inclusion of statements and ideas in this section

does not imply their endorsement by OTA. Nor

does it suggest that they are widely held, except

where specific public opinion polls are cited. Likewise, the inclusion of case examples does not imply that such situations occur frequently.

When these opinions, ideas, and case examples

are reported in the media, they generate public

and congressional concern about life-sustaining

technologies. They are cited here to describe the

context of the debate about these technologies,

to illustrate the diversity and intensity of opinions, and to frame the issues that are addressed

in other chapters.

Opinions About Life-Sustaining

Technologies

In recent years, very negative opinions have

been expressed about the life-sustaining technologies discussed in this report. They are viewed

by some people as needlessly prolonging the dying process, and many instances of poor outcome

and patient suffering associated with their use

have been reported. For example:

● One man told the President Commission for

the Study of Ethical Problems in Medicine and

Biomedical and Behavioral Research that his

89-year-old mother’s ribs were broken during a successful resuscitation attempt by a

hospital emergency room team. “She never

said another word, but moaned in pain the

whole time. I think this was a moral abomination” (60).

● A newspaper article described an 82-year-old

woman who was put on a mechanical ventilator following bypass surgery. She could not

talk because of the tubes in her throat but

wrote notes to her daughter, saying “Please

let me die.” The tubes were not removed, and

when she tried to pull them out herself, her

hands were strapped to the bed (122).

● Another article described a 77-year-old retired school teacher who was admitted to a

hospital with end stage kidney and respiratory disease and placed on dialysis and a mechanical ventilator. After her death, her husband said that if he had known what was

going to happen, he would not have brought

her to the hospital. “She didn’t take anything

by mouth so they fed her with an N.G. (nasogastric) tube. She was constantly pulling at the

tape, trying to pull it out. She pulled it out

twice. They put it in a third time. It was a

heart-breaking experience” (96).

Mercy killings and suicides associated with the

use of life-sustaining treatments have also been

reported:

●

●

In October 1984, a comatose 84-year-old

woman on a respirator in a Washington, DC,

hospital was stabbed to death by her 24-yearold grandson. A newspaper report stated that

the family had been “bitterly divided about

whether to remove her from the machines

that were keeping her alive” (126).

A newspaper article reported one physician’s

observation that a surprisingly high number

of dialysis patients are involved in fatal onecar crashes into bridges and abutments—

deaths that are classified as accidents rather

than suicides (124).

Statistics and anecdotes demonstrating positive

outcomes of life-sustaining technologies are available and are cited throughout this report. Moreover, negative attitudes about life-sustaining technologies may not be related to the technologies

themselves, but rather to their use and outcome
48 ● Life-Sustaining Technologies and the Elderly

for individual patients. Many people acknowledge

that the same technologies that they view as unnecessarily prolonging the suffering of a relative

or friend can also restore life and good or satisfactory functioning for other patients.

The negative attitudes expressed in the anecdotes suggest, however, that there may be aspects

of some life-sustaining treatments that are unnecessarily painful or uncomfortable for patients.

Technological improvements that might lessen patient suffering associated with the treatments

could change some people’s opinions about them.

Aspects of each of the technologies that may be

particularly burdensome are noted in the report.

Perspectives on Withholding and

Withdrawing Life-Sustaining

Treatment

Some people believe that the process of dying

may be more fearful than death itself and that

in some cases, “death is not the enemy” (102).

These individuals oppose the use of life-sustaining

treatments in such cases and instead advocate

withholding or withdrawing treatment to allow

death to occur “naturally” (19,101,111,222).

Advocacy of natural death, or “death with dignity” as it is often called, could not have existed

prior to the development and widespread use of

the technologies discussed in this report, At present, the movement for “death with dignity’’—i.e.,

without machines, monitors, or tubes and without the frantic final attempts to sustain life that

sometimes occur in hospitals and ICUs and to a

lesser extent in other health care settings-appears

to be growing. The expansion of hospice programs

in this country and a growing interest in palliative or supportive care attest to the appeal of the

“death with dignity” concept. Many advocates of

“death with dignity” also support the concept of

‘(the right to die”—i.e., the individual’s right to refuse any treatment even if the outcome is death.

In contrast, other individuals and groups generally oppose withholding or withdrawing lifesustaining treatment except when a patient is terminally ill and expected to die imminently. In their

view, it is morally wrong to withhold or withdraw

life-sustaining treatment from patients who may

be comatose, severely debilitated, or terminally

ill but are not expected to die imminently. This

position is often called “the right to life” position.

Many advocates of “the right to life” and others

regard withholding or withdrawal of life-sustaining treatment from patients who are not expected

to die imminently as discrimination against handicapped or disabled people (52,83).

Recent growth in the movement for “death with

dignity” or “the right to die” is alarming to advocates of “the right to life.” They believe that implementation of the “death with dignity” concept

has resulted in or will result in denial of potentially beneficial treatment, particularly for patients

who are mentally retarded, confused, or unable

to demand treatment for themselves for any reason. Advocates of “the right to life” also fear that

“the right to die” will become a “duty to die” for

elderly and handicapped people (52,83). Some individuals and groups believe that nursing home

residents are particularly at risk of being denied

potentially beneficial treatment as a result of “the

right to die” movement and other factors (83,96).

Public opinion polls indicate that about 75 percent of the public supports the idea that lifesustaining treatments may be withheld or withdrawn in some circumstances. Survey questions

have been worded differently and thus are not

strictly comparable; some stress that the patient

is terminally ill or that the life-sustaining treatment is futile; others emphasize that the patient

and/or the family has requested withholding or

withdrawal.

A 1986 American Medical Association (AMA) poll

asked, for example:

Would you favor or oppose withdrawing life

support systems, including food and water, from

hopelessly ill or irreversibly comatose patients if

they or their families request it?

Seventy-three percent of the 1,510 respondents

favored withdrawing treatment in these circumstances; 15 percent were opposed, and 12 percent were unsure (11); 75 percent of those under

age 65 favored the option, compared to 64 percent of those over age 65.
Ch. 2—The Context of the Report ● 4 9

Another poll asked:

Medical technology now enables doctors to prolong the lives of many people who are terminally

ill. Do you believe doctors should stop using these

machines if the patient asks, even if that means

the patient will die?

Seventy-seven percent of respondents answered

yes; 15 percent, no; and 8 percent said they did

not know. Higher income and higher education

were associated with affirmative answers. Moreover, only 60 percent of blacks answered yes, compared to about 80 percent of whites (122). Other

polls have also indicated a significant difference

in attitudes on these issues between blacks and

whites (31).

Many caveats have been raised about the validity of survey findings in this complex area. The

most important question is whether the findings

reflect what individuals would choose for themselves if they were the patient described in the

case situation. Neither of the surveys cited above

asked what respondents would want for themselves.

One study in an outpatient medical center (113)

asked respondents to suppose that they had such

a severe memory loss that they could not identify

people, remember where they were, or care for

themselves, and that there was no chance of recovery. Sixty-two percent of the 152 respondents

said they had thought a lot or a moderate amount

about what treatment they would want in such

a situation. Of these individuals, 73 percent said

they would not want intensive care; 71 percent

said they would not want CPR; 75 percent said

they would not want tube feeding; and 53 percent said they would not want antibiotics for pneumonia. Patients over age 65 were more likely than

those under age 65 to say they would not want

tube feeding.

Anecdotal evidence suggests, however, that

some patients who say that they would request

withholding or withdrawal of life-sustaining treatments may not do so when actually faced with

such a decision, OTA is not aware of any research

that addresses this question.

The mass media and widely read professional

journals contain commentaries criticizing physicians for their attitudes and handling of situations

in which withholding or withdrawal of treatment

may be appropriate. The criticisms are often based

on anecdotes, and it is usually unclear whether

the author believes that the problems occur regularly or rarely.

Physicians have been criticized in such commentaries for their reluctance or refusal to withhold

or withdraw life-sustaining treatments and for

their determination to postpone death until the

last possible moment. It is said that physicians regard the death of a patient as a personal failure,

that they sometimes do not consider the patient

experience of the treatment in decisions to initiate or continue it, and that they maybe ‘(seduced

by technology” (47,65,80,81,164,219). Physicians

and other health care professionals have also been

criticized for pressuring families to consent to lifesustaining treatments for a severely debilitated

or terminally ill relative against the better judgment of the family (135,164).

It has been suggested that a physician’s need

to treat may arise in part from a deep-seated fear

of dying and that the same fear may cause some

physicians and other health care professionals to

withdraw from dying patients. It is said that this

tendency to withdraw from a dying patient—

experienced by the patient as abandonment—may

be intensified when life-sustaining treatment has

been withheld or withdrawn thus signifying that

the patient’s condition is considered hopeless (80,

100,186,219).

Physicians have also been criticized for practicing “defensive medicine’ —i.e., providing all possible treatments regardless of their value to the

patient in order to avoid a possible lawsuit.

Lack of physician training in how to care for

dying patients whose diseases cannot be cured

is said to leave some physicians feeling helpless

when faced with such patients (80,89,100)219) (see

also ch, 10). One physician reported this experience during a 1984 hospital strike:

sis. She was on high doses of analgesics and nar-
50 Ž Life-Sustaining Technologies and the Elderly

In some instances, the feeling of helplessness

caused by lack of an effective medical remedy for

the patient’s problem may lead physicians to initiate life-sustaining treatments that may not benefit the patient.

While recognizing the validity of some of these

criticisms, physicians and others raise many

counter arguments. First, they point out that it

is frequently difficult to formulate an accurate

diagnosis and prognosis and to determine how

a particular patient will respond to a given treatment. In the face of this uncertainty, many physicians prefer to “err on the side of life” and initiate

treatment (90,110,140,225).

Some physicians and others point out that there

is almost always some chance a patient’s condition will improve. In a recent, widely publicized

case, for example, a 44-year-old woman who had

been in a coma for 6 weeks and experienced

cardiac arrest, a collapsed lung, and pneumonia,

suddenly came out of the coma, 6 days after a

Maryland judge denied her husband’s petition to

terminate life-sustaining treatment (4).

A physician reported a similar case:

Even though such cases are rare, they intensify

the doubts of physicians and others about withdrawing treatment.

Physicians point out that treatment of severely

debilitated and terminally ill patients is a process—

not a single event during which a life-or-death decision is made. Daily care of such patients involves

many decisions, each affecting whether the patient will survive. Even when prognosis is very

poor, physicians have difficulty knowing exactly

when to stop aggressive care and begin palliative

or supportive care.

Some physicians and others believe that physicians have a duty to prolong life; that it is unethical for them to withhold or withdraw life-sustaining treatment; and that such behavior destroys

the trust that underlies the physician-patient relationship. Others believe that continuing treatments that do not benefit the patient or treatments

that are against the wishes of the patient destroys

this trust.

A survey of the attitudes of 250 physicians,

nurses, and social workers at three VA medical

centers suggest that some life-sustaining treatments are more difficult to withhold or withdraw

than others. The study found that these health

care professionals were most comfortable with

Do-Not-Resuscitate (DNR) orders and withholding

surgery and most uncomfortable with decisions

to withhold nutritional support and hydration. In

the middle range were decisions to withhold an-
Ch. 2—The Context of the Report ● 5 1

tibiotics. Withholding treatment was perceived as

less difficult than withdrawing it (230).

Some physicians and other health care professionals are reluctant to withhold or withdraw lifesustaining treatment because they have experienced instances in which terminally ill or severely

debilitated patients who seem to be suffering

greatly and perhaps wanting to die, in fact want

continued treatment (69,78,90). One newspaper

reported the following incident:

A 77-year-old woman dying of lung disease in

the intensive care unit of a New York City Hospital had been on a mechanical ventilator for six

months. No treatment was known that could improve her condition, and it was expected that she

would be dependent on the ventilator until she

died. Physicians in the ICU regarded her life as

very difficult and believed that she might prefer

to have the ventilator removed and die.

The doctor raised the issue with her. “Now, I

don’t want this to upset you. Nothing has changed

in your situation. But we have to ask you this now

so we will be better able to handle your care.”

She was not able to speak because of the ventilator, but she smiled.

“We are not optimistic we can take you off the

ventilator,” he continued. “We've known that for

a while, and we’re looking to send you to a nursing home. But we need to know, if something unexpected should happen, if you should have an

irregular heartbeat, do you want us to resusciTo the surprise of the doctor and two others’s

standing at her bedside, she nodded yes again (97).

Some physicians and other health care professionals may also be reluctant to withhold or withdraw life-sustaining treatment because they have

experienced instances in which patients decided

against treatment because they were depressed,

in pain, or in significant discomfort, but when

these problems were relieved, the patients decided

in favor of treatment. Others may have experienced instances in which patients refused lifesustaining treatment because they feared the procedures or equipment but changed their minds

when the procedures were explained (90). Instances in which patients change their minds for

these or any other reason tend to reinforce the

general preference of health care professionals

to “err on the side of life. ”

Opinions About “Quality of Life)) as

a Factor in Decisions About

Life-Sustaining Treatment

Opinions about whether ‘(quality of life” should

be a factor in decisions about life-sustaining treatment vary depending on what is meant by the

term, but its meaning is seldom made explicit. The

term may refer to:

. an individual’s view about the quality of his

or her own life,

● an observer’s assumption about how the individual views the quality of his or her own

life, or

● an observer’s evaluation of the quality of the

individual’s life.

From any of these three points of view, a judgment about an individual’s “quality of life” may

be based on physical, mental, emotional, or social characteristics of the individual or his or her

environment. Severe cognitive impairment and

patient physical or emotional suffering are frequently mentioned as aspects of poor “quality of

life.”

Whether “quality of life” should be considered

in decisions about life-sustaining treatments is

probably the point of greatest disagreement between advocates of “death with dignity” and advocates of “the right to life. ” In the opinion of advocates of “death with dignity, ” “quality of life”

from the patient's point of view should be a primary consideration in decisions about life-sustaining treatment.

Advocates of “the right to life” argue, in contrast, that opinions about “quality of life” are, or

tend to become, judgments about the value of life,

and that treatment decisions based on “quality of

life” devalue it. According to one spokesperson

for this position:
52 ● Life-Sustaining Technologies and the Elderly

“Quality of life” talk abandons the substantive

concept of “life” in its focus on “quality,” suggesting the extreme position that a life of poor health

quality is probably not even a properly human

life at all; not worth living, and not worth keeping alive (149).

This position is usually based on an underlying

conviction about the sanctity of life. For example, in testifying before the Senate Subcommittee on Family and Human Resources, Paul Ramsey said:

Our nation is in a deep moral crisis, a crisis of

which road to take, the high road of faithfulness

to a fundamental principle of Western morality—

 the equality of life—or the low road of discretionary judgments concerning the quality of a life, permitting private persons to assess that life’s inherent capability or worthiness to be treated equally,

protected equally, as any other life would be

treated and protected.

In our moral heritage, equality of life stems from

the traditions of the religions of Western culture,

whose teaching is that each of us has his title to

life from God, from not only nature but nature’s

God, and certainly not from any State’s or societal or private judgment that that life may or may

not be entitled to equal care and protection. In

my view, the equality of life can be sustained as

a fundamental principle by acceptable notions of

the equal dignity, equal claims, of any life in a valid,

truly humanistic morality (159).

Advocates of “the right to life” believe that allowing “quality of life” considerations in decisions

about life-sustaining treatment for any persons

in the society creates a dangerous precedent that

could ultimately threaten the fundamental rights

of handicapped people of all ages and subject them

to abandonment, abuse, and medical neglect (24,

79)149).

Little is known about the attitudes of physicians

and other health care professionals toward the

use of “quality of life” as a factor in health care

decisions. One study asked physicians to indicate

how they would treat a hypothetical patient—a

69-year-old nursing home resident in severe respiratory failure—and what factors in the case influenced their decision. Results of the study show

that 37 percent of the physicians based their decision at least in part on the patient’s “quality of

life,” including 49 percent of physicians who said

they would withhold mechanical ventilation but

only 29 percent of those who said they would provide the treatment. The researchers note, however, that the physicians varied greatly in their

opinions about the “quality of life” of the hypothetical patient (147).

Because of the lack of a clear and accepted definition of “quality of life” and because of the value

judgments it introduces into the decisionmaking

process, some people believe that “quality of life”

should not be a factor in decisions about life-sustaining treatment and that such decisions should

be based only on factors such as expected medical outcome. Others believe that “quality of life”

is an important component of outcome and thus

a necessary factor in treatment decisions.

The difficulty of determining whether “quality

of life” should be a factor in decisions about lifesustaining treatment is summed up in the following comment of one observer:

I am struck by how many in my limited circle

of acquaintances are willing to use and apply

measures of the quality of life, and how few of

them are comfortable with a serious and sustained

probing of precisely what it is. Many of us are

apt to respond as Fats Wailer did when asked to

explain the nature of jazz. “Man, ” he said, “if you

don’t know what it is, don’t mess with it.” In the

context of geriatric care, we cannot leave it there

—though perhaps it will turn out that we ought

not to mess with it (175).

Chapters 5 through 9 discuss what is known about

the use of factors that are sometimes said to constitute “quality of life” in decisions about the five

technologies OTA studied.

Attitudes About the Patient's Role in

Decisions About Life-Sustaining

Treatment

Intertwined with opinions about life-sustaining

technologies, withholding and withdrawal, and

“quality of life”–but not synonymous with such

opinions—are attitudes about the patient’s role in

decisions about life-sustaining treatment. These

attitudes exist within the context of general societal attitudes about the importance of patient
Ch. 2—The Context of the Report . 53

autonomy and patient involvement in decisions

about all kinds of medical care. These general societal attitudes may be based on:

1. growing awareness that decisions made without the patient’s input may not reflect his or

her wishes or best interests;

2. widespread skepticism about what is seen as

the traditional paternalistic role of physicians;

3. court rulings that support patient autonomy

in decisions about medical treatment (see ch.

3); and

4. societal concerns about individual rights, civil

rights, and consumer rights that, although not

directly related to medical decisionmaking,

still affect attitudes about it (91,228).

In this general context, physicians have been

criticized for failing to discuss treatment decisions

of all kinds with their patients. The extent of this

problem is unclear. A 1982 survey, conducted for

the President Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, found that the vast majority

of physicians (84 to 98 percent) said they usually

discuss diagnosis, prognosis, and the pros and cons

of treatment with their patients. A smaller, but

still significant proportion of adults interviewed

for the same survey (68 to 78 percent) agreed that

their physicians usually discuss these matters with

them (118). No data are available to determine

whether physicians discuss decisions about lifesustaining treatments with patients more or less

often than decisions about other treatments.

Many hypotheses have been advanced as to why

some physicians do not discuss treatment decisions with some of their patients. Survey data

show that physicians believe that about 20 percent of their patients are incapable of understanding treatment options and that other patients who

are capable of understanding are, nevertheless,

incapable of coping with information about their

condition and treatment for it (118).

One observer points out that in the past physicians had few specific remedies for diseases and

relied on hope and reassurance to comfort their

patients. These approaches depend on patient

trust, and physicians learned not to undermine

trust by disclosing their uncertainty about diagnosis, prognosis, or appropriate treatment. According to this view, some physicians may fail to

discuss treatment decisions with patients because

of reluctance to acknowledge uncertainty (95).

Although most people believe physicians are

sometimes justified in withholding information

from patients or overriding a patient’s decision

about treatment, in general, people strongly support the autonomy of the patient in the decisionmaking process (118). A 1985 poll of 1)500 Americans age 45 and over found that only 14 percent

agreed with the statement, “A person who has

a fatal illness with no possibility of recovery should

receive all available types of life support to keep

them alive regardless of their own wishes” (emphasis added). Eighty-one percent disagreed, and

4 percent did not know. No significant differences

were found by age (5-year intervals to age 85) (155).

In response to a second statement, ‘(People who

have made their wishes known about life support

treatments should have their wishes followed,

regardless of the opinions of physicians or family

members, ” 81 percent of respondents agreed, 13

percent disagreed, and 6 percent did not know

(155).2

As discussed earlier, questions have been raised

about the validity of survey findings in this area.

Critics point out that the findings may reflect the

respondents’ attitudes about patient autonomy in

general and not necessarily the way respondents

want decisions made for themselves.

In fact, many health care professionals doubt

that the majority of patients actually want to make

decisions about medical treatments themselves.

One study of patient participation in decisions

about treatment for hypertension supports this

view. Although most of the subjects wanted information about their condition and its treatment,

78 percent preferred that a physician or nurse

practitioner make the decision about treatment,

and less than half of these even wanted the physician or nurse practitioner to consider their opinions, Only 19 percent wanted to participate equally

in decisionmaking, and only 3 percent wanted to

make the decision themselves. Higher income and

2

0TA appreciates the generosity of the American Association of

Retired Persons (AARP) in including these questions in its 1985 poll

and providing the results for use in this report.
54 ● Life-Sustaining Technologies and the Elderly

education were correlated with an individual’s desire to participate equally in decisionmaking (178).

Results of another survey showed that fewer

elderly than younger people wanted to make decisions about their own treatment in the event

that they are “seriously ill” (see table 2-I), While

43 percent of respondents of all ages said they

wanted to make the final choice, only 23 percent

of those over 65 wanted to do so (118).

Views on Surrogate Decisionmaking

Survey data indicate that most people want a

family member to make treatment decisions for

them if they are decisionally incapable (see table

2-2). Yet a significant percentage would rather

have their physician or a friend or lawyer make

decisions for them in such situations (118).

Some physicians believe that asking families for

a decision about life-sustaining treatment is too

stressful for the family and that families should

not be asked to make these decisions. Others point

out that the decisions of family members do not

always reflect the patient’s wishes or best interests. In some cases, family members insist on

aggressive treatment that is considered inappropriate by the physician and other health care

professionals. In other cases, family members decide that treatment should be withheld or withdrawn for reasons that may be related to the needs

of the family rather than the wishes or best interests of the patient. As a result, many physicians

Table 2-1 .—Responsibility for Decisions About

Medical Treatment, Louis Harris Poll, 1982

Question: If you were seriously ill, would you want the responsibility of

making the final choices about your medical treatment or would

you want your doctor to make them for you?

Age

65

All 18-34 35-50 51-64 and

ages years years years over

Response: % % % % %

Patient makes final choices ... ., 43 56 45 29 23

Doctor makes final choices ., ., 38 28 36 47 60

Both ., ., 14 14 15 17 12

Not sure, . . . . . . . . . . . . . . . . . . . . . . 4 3 3 6 2

SOURCE LouIs Harm & Associates, “Views of Informed Consent and Decmonmaktng Parallel

Surveys of Physicians and the Pubhc,” President’s Commission for the Study of Ethical

Problems in Medicine and Blomedtcal and Behaworal Research, L4akmg l/ea/f/r Care DecIs/errs, VOI II (Washington, DC U S Government Prmtmg Off Ice, 1982)

TabLe 2.2.—Who Should Make Treatment Decisions

When the Patient is Too Sick To Decide,

Louis Harris Poll, 1982

Question: If you were too sick to make an important decision about your medical care, who would you want

to make the final decision for you—a family member, a close friend, your doctor, or a lawyer appointed to protect your interests?

Response Percent

A family member . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

A close friend. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Your doctor. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

A lawyer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Doctor and family/friend . . . . . . . . . . . . . . . . . . . . . . . 6

Other . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . a

Not sure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

a

Less than 0,5 percent.

SOURCE: Louis Harris & Associates, “Views of Informed Consent and Decisionmaking. Parallel Surveys of Physicians and the Public, ” President’s

Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions, vol.

II (Washington, DC: U.S. Government Printing Office, 1982).

and others believe that families should not have

an absolute right to make these decisions (33,76,

90,110,116,172)177). According to two proponents

of this viewpoint:

We submit that the family’s rights vis-a-vis the

medical care of an adult are limited to ensuring

that the wishes of the patient are fulfilled and to

expressing their considered judgment regarding

what is in the best interest of the patient, given

their presumably more intimate knowledge of the

patient and his life and values. None of this, however, entails the proposition that a physician ought

to acquiesce to any and every desire expressed

by a family concerning the appropriate medical

care for an incompetent patient.

However sensitive the physician must be to the

emotions and concerns of family members, he

ought to remember that his covenant is with the

patient, not the family. It is a covenant to pursue

the welfare of the patient, not the welfare of society or even the welfare of the family. When the

patient cannot speak for himself, we believe that

the physician must, to the best of his or her abilities, speak for the patient (172).

The foregoing discussion raises many questions

about how decisions about life-sustaining treatments are actually made, the usual roles of physicians, other health care professionals, and families, and the extent to which patients are or could

be involved in the decisionmaking process. Because of the complexity of the clinical, legal, and
Ch. 2—The Context of the Report ● 5 5

ethical issues surrounding surrogate decisionmak -

ing, OTA commissioned three papers on this topic

and sponsored a workshop on ‘(Making Medical

Decisions for Mentally Impaired Adults.” Some

conclusions of the workshop and the commissioned

papers are incorporated in this report. For a more

detailed and comprehensive presentation of the

issues, the reader is referred to the papers that

will be published by Milbank Memorial Fund Quarterly (50) or can be obtained from the National

Technical Information Service (see app. A).

Opinions About Euthanasia

Euthanasia, or mercy killing, is an act intended

to cause the death of a person who is suffering

from what is believed to be an incurable condition. The manner of death is intended to be painless or at least to result in less suffering for the

individual than continuation of his or her existence as it is.

Many people make a distinction between an act

such as giving a patient a drug that causes death,

which they call euthanasia, and withholding or

withdrawing life-sustaining treatments, which

they do not call euthanasia. Other people refer

to an act such as giving a patient a drug to cause

death as “active euthanasia” and distinguish it from

withholding or withdrawing life-sustaining treatment, which they call “passive euthanasia”; many

of these people believe that there are significant

legal and ethical differences between active and

passive euthanasia. A third group of people believes that the distinction between active and passive euthanasia is not meaningful and that both

practices are morally wrong.

With regard to what is sometimes called “active euthanasia,” the National Opinion Research

Center has asked the following question periodically since 1947:

When a person has a disease that cannot be

cured, do you think doctors should be allowed

by law to end the patient’s life by some painless

means if the patient and his family request it?

In 1947, 37 percent of respondents said yes. By

1973, slightly over half said yes, and in 1983, 63

percent said yes (122). Similarly, 61 percent of respondents to a 1985 Harris poll agreed that a “patient who is terminally ill, with no cure in sight,

ought to have the right to tell his doctor to put

him out of his misery” (181).

In contrast to these attitudes, most religions and

most ethical traditions oppose euthanasia (103) (see

ch. 4). The American Medical Association prohibits

any involvement of physicians in euthanasia (9),

and survey results indicate that far fewer physicians than other adults consider euthanasia acceptable. For example, one survey asked:

Imagine that a dying patient in severe distress,

which cannot be relieved, asks to have his life

ended. Under these circumstances, is it ethically

permissible to comply with the patient’s wishes?

Only 4 percent of physicians said yes, and only

2 percent said they would be likely to comply with

such a request (118). On the other hand, more

than 80 percent of physicians agreed that it is ethically permissible to administer pain relieving drugs

to a dying patient in severe distress, even if the

required dose would shorten the patient’s life.

Euthanasia, or mercy killing, is most likely to

occur when patients are believed to be incurably

ill and suffering but unlikely to die imminently,

Recent newspaper articles have reported the following:

●

●

●

●

A 68-year-old woman in Lynchburg, VA,

stabbed her 72-year-old husband to death

with an icepick because he was “confused and

screaming with pain” caused by cancer (21).

An elderly Florida man shot his wife to death

in the nursing home where she lived because

she had Alzheimer’s disease and spent much

of her time screaming (122).

An 86-year-old man shot his wife to death in

her hospital bed because she had Alzheimer’s

disease. He then shot and killed himself (123).

A woman in La Jolla, CA, strangled her 92-

year-old husband in his sleep because he was

bedridden, suffering from emphysema, arteriosclerosis, strokes, and hallucinations

(122).

In general, mercy killng is considered only when

a patient is not receiving a life-sustaining treatment that could be withheld or withdrawn. Allan Otten, a correspondent for the Wall Street
56 ● Life-Sustaining Technologies and the Elderly

Otten says that he was told by several doctors and

ethicists to take his mother home, bathe her, keep

her comfortable, and just let her die. He asks in

response whether “it must be done this slow, hard

way” and whether ‘(a pill, injection, or other humane method” could be found to end her suffering (146).

Reports like this one speak to the intense anguish that some people feel about what they perceive as the prolonged suffering of a relative or

friend. Responses to Mr. Otten’s article ranged

from sympathy and support to outrage that he

would want “to kill his 90-year-old mother” (72,

224),

Mercy killing is illegal, but most people have not

been prosecuted for it, or if prosecuted, they have

been acquitted or given probation. There are exceptions, however, and a few individuals have

been prosecuted and convicted (17).

Euthanasia seems to be more widely accepted

and perhaps more widely practiced in some other

countries than in the United States. In 1984, a

group of French doctors announced that they had

helped some patients to die by active measures,

including the use of medications. Their declaration stated:

The moment has come for medical training and

institutions to respond to the demand for quality

in the last period of life and a death that prevents

suffering and preserves dignity (29).

Simultaneously, results of a poll were published

showing that 80 percent of French doctors favor

euthanasia for hopelessly ill patients (29).

In the Netherlands, the Dutch Association for

Voluntary Euthanasia has a group of volunteers

to answer questions and give advice about euthanasia and a group of doctors who are in principle willing to perform euthanasia. The association insists that the patient must wish to die himself

or must be unconscious. It has published a booklet detailing the drugs that can be used for mercy

killing (2). Euthanasia is illegal in the Netherlands,

but few doctors who perform euthanasia are prosecuted. In 1985, the Dutch Government Commission on Euthanasia recommended national legislation that would exempt physicians from

prosecution for euthanasia if mandated procedures are followed. This legislation has not been

enacted (42).

The diversity of opinions and attitudes just described with regard to life-sustaining technologies,

withholding and withdrawing treatment, “quality of life” as a factor in treatment decisions, patient autonomy, surrogate decisionmaking, and

euthanasia suggest that individuals involved in a

decision about life-sustaining treatment are likely

to differ in their perceptions of the situation and

their beliefs about how the decision should be

made and what the decision should be. Such differences of opinion can occur in decisionmaking situations that involve only a physician and a patient or a single family member, They are more

likely to occur, however, when more people are

involved, as they often are in hospitals, nursing

homes, and other multiperson treatment settings.

Many people feel very strongly about one or

more of the issues discussed in this section. This

intensity of feeling may be based on strong religious or moral convictions, prior experience, professional training and socialization, or deeply

ingrained cultural values and mores. The seriousness and potential finality of decisions about lifesustaining treatment and the emotionally charged

atmosphere that usually surrounds severe illness
Ch. 2—The Context of the Report ● 5 7

and the possibility of an individual’s death fur- involve them personally. Thus, decisions about lifether intensify these strong feelings and beliefs. sustaining treatments are likely to take place in

Even individuals who do not feel strongly about the context of intense and divergent feelings, bethese issues in the abstract frequently develop liefs, and attitudes of participants and potential

strong opinions in decisionmaking situations that participants.

SOCIETAL RESPONSES TO THE DILEMMAS ASSOCIATED WITH

LIFE-SUSTAINING TECHNOLOGIES

Although life-sustaining technologies have had

a positive effect in general, the dilemmas associated with their use in some cases have given rise

to legal and ethical debate; court rulings; new

methods for the determination of death; State legislation for living wills and methods for designating a surrogate decisionmaker; guidelines for decisionmaking formulated by government-appointed

task forces and commissions, citizens’ groups,

professional associations, and others; institutional

policies for decisionmaking and institutional ethics

committees; Federal regulations; and hospice programs. This section reviews each of these developments briefly as background for subsequent

chapters.

Legal and Ethical Debate

Some issues raised in this report have been discussed since ancient times, but legal and ethical

debate about issues related to the use of lifesustaining treatments has intensified since the

1950s as a result of the introduction of new medical technologies. Since then a large body of knowledge has been developed, consisting in part of legal concepts and legal analysis and in part of ethical

principles and ethical analysis (see chs. 3 and 4).

Legal and ethical aspects of the debate about lifesustaining treatments are interrelated. Moreover,

legal and ethical analysis has stimulated many of

the other developments discussed in this section

and in turn has been stimulated by them.

Observers have noted that each new technology seems to raise new and to some extent unexpected legal and ethical issues (32,33). Yet most

of the debate about these issues has not focused

on specific technologies. In addition, although

there are exceptions, most legal and ethical analysis of these issues has not focused on elderly people as a distinct group.

Finally, until recently, legal and ethical debate

has focused more on decisions about withholding and withdrawal—i.e., when it is legal or ethical to withhold or withdraw life-sustaining treatment—than on questions of access or right to

treatment—i.e., what treatment is society legally

or ethically obligated to make available. As concern has grown about the impact of cost containment measures on access to care, however, legal

and ethical debate has focused increasingly on

questions of access and right to treatment.

Court Cases

The first court case to focus national attention

on the issue of withdrawing life-sustaining treatment was that of Karen Quinlan, a 21-year-old

woman who was comatose and receiving mechanical ventilation. In 1976, the New Jersey Supreme

Court ruled that her father could request removal

of the ventilator on her behalf (88). (When it was

removed, she began to breathe on her own and

lived another 10 years.)

Since the landmark Quinlan ruling, many other

cases involving life-sustaining treatments have

been decided. Table 2-3 lists the cases OTA is

aware of that involve elderly people. Many of these

cases are discussed in other chapters of the report. Legal cases are not usually categorized by

the age of the individual involved, and this table

is not intended to suggest that different legal principles apply or should apply to elderly people. It

is rather intended to show which technologies are

represented in cases involving elderly people and

the apparent change in this aspect of such cases

over the past 10 years.
58 . Life-Sustaining Technologies and the Elderly

It is clear from table 2-3 that from 1980 to 1985 down in 1984. One case involving nutritional supmost cases involved the use of mechanical venti- port was decided in 1985; there were eight cases

lation. The first rulings on cases involving nutri- in 1986, and two as of early 1987, These figures

tional support for elderly patients were handed indicate that the legal issues associated with the

Table 2-3.—Legal Cases Involving Decisions About Withholding or Withdrawal

of Life-Sustaining Treatment From Elderly Patients

State Patient’s age Case Technology

1977:

Massachusetts,

1978:

Massachusetts,

Massachusetts.

New Jersey . . . .

Tennessee ., .

1980:

Massachusetts,

Ohio ., ., . . . . .,

Florida ...

1981 :

New York .

California .. .

1983:

New Mexico. ...

Washingto n

Texas . . . . .,

1984:

New York. . ,

Californi a

Florida

Ohio. . . . . . . . . . . . . . . . . . . . .. . . .

Arizona . . . . . . .

Massachusetts. . . .

New York. . .

1985:

Washington, DC, .,

New Jersey . . . .

New York. . . .

1986:

New York, .,

New York. ., .,

New York, .. .

New Jerse y

Hawaii . . . . . . . .

Florida ... ., . . .

Virginia . .

Arizona ., . ,

Ohio , ... . . . . .

California . ,

1987:

New York. .. .

California . . . . . . . .

New Jerse y

67

67

77

72

72

78

70

73

83

67

65+ b

69

65+ b

88

70

65+ b

70

82

92

85

71

83

70

83

79

83

90

73

73

65 +b

70

79

75

79

92

91

Superintendent of Belchertown State School v. Saikewicz .,

In re Dinnerstein . . . . . . . . . . . . . . . .,

Lane v. Candura . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..

In re Quackenbush . ... . . . . . . .

State Department of Human Service v. Northern, . . . . . . . . . . . . . . .

In re Spring. . . . . . . .

Leach v. Akron General Medical Centera

Satz v. Perlmutter . . . . . . . . . . . . . . . . . . . . . . . . . . ........ .

ln re Eichner, ..

Foster v. Tourtellotte. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 

New Mexico ex rel. Smith v. Fort .. . . . . . . . . . . .. . .. . .. . . . . . . . . . . . ..

In re Colder, . ..... .. . . .

ln re Guardianship Estate of Peterson .. .......... .

ln re Moschella , .. .

Bartling v. Superior Court

John F. Kennedy Memorial Hospital Inc. v. Bludworth . . . . . . . . .

Leach v. Shapiroa

Lurie v. Samaritan Health Service . . . . . . . .,

In re Hier, . . . . . ., . . . . . . . . . . . . . . . ., . . . . . . . . .

In the Matter of Application of Plaza Health and Rehabilitation Center,

Tune v. Walter Reed Army Medical Cente r

ln re Conroy ... ...

..

. .

Saunders v. State . . . . . ... .. . . . . . ... .. . . . . . . . . . . . . . . . . . .

In re Triarsi. . . . .. . . . . . . . . . .. . . . . . . .. . . . .. . . . . . . . . .

ln re Vogel..... . . . . . . . . . . . . . . . . . . . . . . . . . .. ......

In re Application of Kerr (O ‘Brien). . . . . . . . . . . . . . . . . . . . .. ... ., .,

In re Visbeck, ., ., . . . . . . ., ., ., . . . . . . . .

Wilcox v. Hawaii . . . . . . . . . . . ... . .. . . . . . . . . . . . . . . . . .

Corbett v. D’Alessandro .. ... . . . . .. . . . . . . . . . . ......

Hazeltonv. Powhatan Nursing Home, Inc. . . . . . . . . . . . . . . . . . . . .

Rasmussen. Fleming . . . . . . . . . . . . . . .

Galinv. University Hospitals . . . . . . . . . . . . . . . . .

Cantor v. Weiss. . . . . . . . . . . . . . . . . . . . . . . . .

Workman’s Circle Home and Infirmary for the Aged v. Fink . . . . . . .

Gary v. California. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

McVey v. Englewood Hospital Association ., . . . . . . . . . . .

Chemotherapy

Resuscitation

Amputation of gangrenous leg

Amputation of gangrenous legs

Amputation of gangrenous feet

Dialysis

Mechanical ventilation

Mechanical ventilation

Mechanical ventilation

Mechanical ventilation

Dialysis

Mechanical ventilation

Mechanical ventilation

Mechanical ventilation

Mechanical ventilation

Mechanical ventilation

Treatment against patient

mechanical ventilation

Mechanical ventilation

Nutritional support

Nutritional support

Mechanical ventilation

Nutritional support

Living willc

Mechanical ventilation

Nutritional support

Nutritional support

Nutritional support

Nutritional support

Nutritional support

Nutritional support

wishes/

Nutritional support/resuscitation

Treatment against patient wishes/

resuscitation

Nutritional support

Nutritional support

Nutritional support

Treatment against patient wishes/

mechanical ventilation

alhe 1980 ca5e L~ch v Akron Genera/ )#~jca/ Center concerned a petltlon by Mrs Leach’s husband for an order 10 discontinue mechanical ventilation for her The 1984 CaSe Leach V Sha@ro IrrVolVed

an action for damages against the doctor and hospital forthellme Mrs. Leach was on mecharucal ventilation Both cases are discussed m ch 3

bThe precise age Of the patients in these cases is not known, although they are known to be O’@r 65

CThe Patient sought Prior judl~lal validation of her living WIII so that lt could M Carried OUt without delay If her Condition deteriorated to the pOlrlt at which she would want to refuse Iife-sustaining treatment

SOURCE Off Ice of Technology Assessment, 1987
Ch. 2—The Context of the Report ● 5 9

use of nutritional support are now most controversial.

Most recent court decisions in cases of younger

patients also involve the use of nutritional support. Some cases of younger people are discussed

in other chapters.

Determination of Death

Standards for the determination of death are

relevant to decisions about life-sustaining treatment because everyone agrees that such treatment should not be used for persons who are

already dead. Two decades ago, the accepted

standard for determining death was the permanent absence of respiration and circulation. Since

then, determination of death has become more

complex because respiration and circulation can

be maintained by artificial means even when the

brain centers that control respiration no longer

function and the whole brain, including the brain

stem, is dead (106,151). The concept of brain death

evolved as a solution to this problem.

In 1968, an Ad Hoc Committee of the Harvard

Medical School issued an influential report defining what the Committee called “irreversible coma”

and listing four clinical criteria for determining

it: 1) unreceptivity and unresponsitivity to even

the most painful external stimuli; 2) no spontaneous movements or breathing; 3) no reflexes; and

4) a flat electroencephalogram. It was stressed that

these four conditions should remain unchanged

for at least 24 hours and exist in the absence of

hypothermia and central nervous system depressants (1). These criteria have been widely used

to determine brain death. One problem has been

the Harvard Committee’s use of the term “irreversible coma, ” which suggests to some people

that the criteria indicate permanent unconsciousness rather than brain death (92,151).

Beginning in 1970, many States enacted legislation recognizing brain death, but lack of uniformity in the wording of these statutes, and thus lack

of agreement about when death had occurred led

to many proposals for a uniform legal definition

of death. When the President’s Commission for

the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research was created in

1978, the problem of defining death was included

in its mandated studies. In 1981, the Commission

recommended a model State statute, the Uniform

Determination of Death Act, that defined death

as follows:

An individual who has sustained either (1) irreversible cessation of circulatory and respiratory

functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem,

is dead (151).

The Commission concluded that the “determination of death must be made in accordance with

accepted medical standards” (151) but that the

standards should not be included in State statutes

or regulations because the tests for determining

death may change with the advent of new research and technologies. The Commission’s report,

Defining Death, includes as an appendix clinical

guidelines for determining death formulated by

the Commission’s medical consultants.

Despite the recommendations of the President’s

Commission, controversy and confusion about

some aspects of the determination of death persist. Moreover, some religious groups, such as Orthodox Jews, oppose the concept of brain death

because it violates their belief that a person is alive

until his or her heart and lungs have stopped functioning.

State Legislation Authorizing Living

Wills and Methods for Designating

a Surrogate Decisionmaker

In response to the dilemmas associated with decisions about life-sustaining treatment for persons

who are not decisionally capable, some States have

passed legislation authorizing living wills—documents that give directions from an individual about

that person’s preferences about life-sustaining

treatments in the event that he or she becomes

decisionally incapable in the future. The first living will legislation was enacted by California in

1976, and seven States followed suit in 1977. During the next 6 years, only six States and the District of Columbia enacted living will legislation.

In 1984, the pace picked up, partly because of

growing public support for the terminally ill person’s right to refuse unwanted treatment and

partly because of an apparent softening in the

Catholic Church’s opposition to such legislation.
60 . Life-Sustaining Technologies and the Elderly

Between 1984 and 1986, 24 States passed living

will statutes. Thus, 38 States and the District of

Columbia now have such statutes.

Living will statutes in some States allow individuals to appoint a surrogate—a relative, friend,

lawyer, physician, or other person–to make

health care decisions for them if they become decisionally incapable. In addition, all 50 States and

the District of Columbia, have durable power of

attorney statutes that allow individuals to appoint

a surrogate decisionmaker. General durable power

of attorney statutes were enacted primarily to authorize proxies for financial and property decisions, however, and there is some uncertainty

about whether they also authorize health care decisions. In response to this uncertainty, 15 States

have enacted legislation that specifically authorizes durable powers of attorney for health care

(43).

Since 1976, 15 States have enacted family consent laws that give family members legal authority to make health care decisions for terminally

ill or incapacitated adults (137). In States without

family consent statutes or specific court decisions,

there is still no legal authority for the widespread

practice of allowing family members to speak for

individuals who are not decisionally capable.

State guardianship laws allow a court to appoint

someone to make decisions for persons who are

adjudicated incompetent. Many guardianship laws,

like general durable power of attorney statutes,

predate concerns about the use of life-sustaining

treatment for persons who are not decisionally

capable and may not address these concerns adequately.

Living wills, durable powers of attorney, family consent laws, and guardianship laws are discussed in chapter 3.

Guidelines for Decisionmaking

In 1983, the President’s Commission for the

Study of Ethical Problems in Medicine and Biomedical and Behavioral Research published its report Deciding To Forego Life-Sustaining Treatment. Based on the results of public meetings and

the commission’s earlier work on informed consent (152), defining death (151), and access to

health care (154), the report discusses: the elements of good decisionmaking, factors that constrain the patient decision, and special problems

of patients who are decisionally incapable or permanently comatose (153). Some conclusions of the

report are as follows:

●

●

●

●

●

●

●

●

The voluntary choice of competent patients

should determine whether or not life-sustaining treatments are given.

Health care institutions and professionals

should try to enhance patients’ abilities to

make decisions on their own behalf.

Health care professionals should generally

maintain a presumption in favor of life-sustaining treatment, while recognizing that competent patients may refuse treatment.

Health care professionals may decline to provide a given treatment option if it would violate their conscience or professional judgment, but in doing so, they may not abandon

the patient.

Health care institutions or society may justifiably restrict the availability of certain treatment options in order to enhance equitable

allocation of limited resources.

An appropriate surrogate, ordinarily a family member, should be named to make decisions for patients who are not decisionally

capable.

Primary responsibility for ensuring that

morally justified processes of decisionmaking are followed lies with physicians. However, health care institutions should develop

policies to enhance patients’ competence and

provide for the designation of surrogates.

Special attention should be paid to providing

respectful, responsive, competent care for

people who choose to forgo life-sustaining

treatment.

The 1983 report of the President’s Commission

supports the establishment of institutional ethics

committees and passage of State legislation authorizing living wills and durable powers of attorney

for health care (153), It has had a strong impact

on thinking about these issues over the past 4

years. Some “right to life” advocates object to the

report, however, because they believe it is biased

toward the “death with dignity” position.
Ch. 2—The Context of the Report ● 6 1

Several State task forces and commissions have

also studied or are studying issues associated with

the use of life-sustaining treatment. For example:

● In Minnesota, in 1984, the State Coalition on

Health Care Costs published its report, The

Price of Life: Ethics and Economics (136), that

discusses individual treatment decisions, allocation of health care resources, and rationing.

● In New York, a State Task Force on Life and

the Law is studying the problem of discontinuing life-sustaining therapies for terminally

ill people and other issues raised by new medical technologies.

● In New Jersey, a State Commission on Legal

and Ethical Problems in the Delivery of Health

Care is studying issues related to decisions

about life-sustaining technologies and allocation of health care resources.

In other States, citizens’ groups and groups associated with quasi-governmental Health Systems

Agencies are also studying these issues. From 1982

to 1984, the Oregon Health Decisions Project, a

privately funded project linked to the State citizens’ advisory council on health policy, held meetings in local communities and with professional

groups to develop guidelines for health care decisions and proposals to improve medical decisionmaking in the State. The project resulted in a 1984

meeting at which delegates approved a document

entitled Society Must Decide, that delineates principles and specific policy recommendations for

patient autonomy, access to services, cost control,

and resource allocation (46). Similar projects are

underway in Idaho, New Jersey, Wisconsin, Washington, and Orange County, California. In Colorado, the State Hospital Association has developed

an educational game called ‘(Critical Choices” to

simulate difficult ethical dilemmas in health care

decisionmaking (218).

Professional societies have also issued guidelines

for decisionmaking. In 1982, the Judicial Council

of the American Medical Association issued a statement on quality of life and care of the terminally

ill. It said in part:

In the making of decisions for the treatment of

. . . persons who are severely deteriorated victims

of injury, illness, or advanced age, the primary

consideration should be what is best for the individual patient and not the avoidance of a burden

to the family or to society. Quality of life is a factor to be considered in determining what is best

for the individual.

The social commitment of the physician is to

prolong life and relieve suffering . . .For humane

reasons, with informed consent a physician may

do what is medically necessary to alleviate severe

pain, or cease or omit treatment to let a terminally ill patient die, but he should not intentionally cause death . . . Where a terminally ill patient’s

coma is beyond doubt irreversible and there are

adequate safeguards to confirm the accuracy of

the diagnosis, all means of life support may be

discontinued (9).

In 1986, the AMA Council on Ethical and Judicial Affairs amended this statement to add that

nutrition, hydration, and medications are among

the “life-prolonging” treatments that may be withheld or withdrawn from persons who are terminally ill and persons who are irreversibly comatose even if death is not imminent (10).

In 1985, the Minnesota Medical Association issued a statement, “Health Care for the Elderly—

A Minnesota Physician’s Perspective, ” that discusses the roles and responsibilities of patients

and physicians in decisions about life-sustaining

treatments (105). Many other State and local medical associations have also issued guidelines for

decisions about these treatments (12,13,15,117).

In 1984, the American Geriatrics Society issued

a statement endorsing the patient’s role in decisionmaking and the use of advance directives. It

stated that “the patient’s interests are not always

best served by applying all theoretically beneficial treatments” and that patients should be offered a full range of treatment options, “including the option of supportive care for patients who

are dying” (5).

Organizations that represent hospitals, nursing

homes, and other health care facilities have also

issued statements about patients and physicians

rights and responsibilities in making medical decisions, but these organizations have generally

stopped short of defining specific procedures that

should be followed in making such decisions. The

American Hospital Association’s “Patient’s Bill of

Rights” (8), issued in 1973, endorses the patient’s
62 ● Life-Sustaining Technologies and the Elderly

right to receive information about his or her diagnosis, treatment, and prognosis, and “to refuse

treatment to the extent permitted by law.” The

American Hospital Association has encouraged the

development of institutional policies for decisionmaking (3,160).

In 1982, the American Health Care Association,

an association that represents nursing homes, issued a report on methods for designating a surrogate and making medical decisions for questionably competent nursing home residents (6). In

1984, the Association circulated a report on “Health

Care Decisionmaking in Long-Term Care Facilities)” which encourages the development of institutional policies for “life-and-death” decisions

and discusses the considerations that should be

included in such policies (7).

This OTA report does not analyze the views of

different religious groups about life-sustaining

treatments. It is important to note, however, that

many different groups have issued statements on

the subject that have profound impact on the attitudes and beliefs of their members. The statements of the Catholic Church have had a particularly strong impact. They include Pope Pius XII’s

1957 statement on ordinary v. extraordinary treatments (150) and the “Declarations on Euthanasia”

issued by the Sacred Congregation for the Doctrine of the Faith in 1980 (166) (see ch. 4).

In 1983, the Law Reform Commission of Canada

released a report, Euthanasia, Aiding Suicide, and

Cessation of Treatment, that recommends that

euthanasia (the intentional killing of a person for

compassionate motives) and aiding suicide remain

illegal in Canada. The report also states that competent patients have a right to refuse any medical treatment and that treating patients against

their will is assault under criminal and civil law

in Canada (104). It states that a presumption in

favor of treatment should be maintained but that

“quality of life” can be considered in treatment

decisions, and that a patient’s incompetence does

not require that physicians provide aggressive

treatment in all circumstances. Finally, the report

concludes that physicians, rather than courts,

ethics committees, or families, should be legally

responsible for ensuring that the patient’s rights

and best interests are upheld in the decisionmaking process (48,104,177).

Institutional Policies

In response to a perceived need in individual

facilities and to the recommendations of national

and State commissions and professional associations, some hospitals and nursing homes have developed institutional policies for decisions about

life-sustaining treatment, Institutional policies can

specify that certain treatments are routinely used

or not used for certain kinds of patients; they can

designate a procedure for making treatment decisions; or both. Most existing institutional policies for decisionmaking address only decisions

about resuscitation. A 1986 survey by the Joint

Commission on Accreditation of Hospitals (JCAH)

found that 57 percent of hospitals, 20 percent of

nursing homes, and 43 percent of hospices had

formal policies for decisions about resuscitation

(115) (see ch. 5 for a discussion of institutional

policies for decisions about resuscitation). Only

20 percent of hospitals, 15 percent of nursing

homes, and 21 percent of hospices had formal institutional policies for decisions about other lifesustaining treatments.

A 1983 survey of hospitals in Minnesota found

that 86 percent had policies allowing physicians

to write Do-Not-Resuscitate (DNR) orders, and 44

percent had written protocols defining how DNR

decisions should be made. Forty-eight percent of

hospitals had policies allowing physicians to write

orders limiting treatments other than resuscitation, but only 8 percent had written protocols

defining how these decisions should be made (133).

A similar survey of nursing homes in Minnesota

in 1984 found that 66 percent had policies allowing DNR orders; 73 percent had policies allowing

limited treatment orders; and 18 percent had neither. Very few facilities had written protocols

defining either the content of DNR and limited

treatment orders or procedures for deciding on

such orders (134).

Some nursing homes have formal procedures

for ascertaining residents’ treatment preferences.

At one Baltimore facility, for example, the staff

determines within the first week after-admission

whether the resident is capable of participating

in decisions about his or her care. Soon thereafter,

decisionally capable residents are asked:
Ch. 2—The Context of the Report ● 6 3

While you are here, there may come a time

when you become too ill to communicate with us

about your medical care. Are there any specific

instructions you might want us to follow at such

a time? (109).

Resident responses provide a basis for further discussion of treatment preferences. These are reviewed every 2 months and whenever there is

a change in the resident’s condition. For those who

are not capable of decisionmaking, families are

involved, but not until a treatment decision is

needed, because the staff believes that families

should not have to make these decisions without

specifics on which to base them. A multidisciplinary team is available to assist patients, families,

or staff in these decisions if needed (109).

Recently, some nursing homes have begun asking residents on admission or later in their stay

whether they want to execute a living will or durable power of attorney. At the Hebrew Home of

Greater Washington in Rockville, Maryland, for

example, social workers are meeting with groups

of residents who are considered decisionally capable to talk about living wills and durable powers

of attorney. Those who express interest are approached later individually to determine whether

they want to execute such a document (63).

Institutional Ethics Committees

Institutional ethics committees are multidisciplinary groups established within a hospital or nursing home to address ethical dilemmas that arise

in the facility (45). Ethics committees were largely

unknown in this country prior to 1976, when the

New Jersey Supreme Court in its decision on the

Quinlan case cited an article about ethics committees by Karen Teel (184) and said that lifesustaining treatment could be withdrawn if an

ethics committee agreed that there was no possibility of Karen Quinlan ever returning to a “cognitive, sapient state” (88). Despite this statement

of the Court, few hospitals established ethics committees (45).

Impetus for the establishment of ethics committees came in 1983 and 1984 as a result of three

developments: 1) a case in Los Angeles in which

two physicians were charged with murder for

withdrawing intravenous nutritional support from

a comatose patient (see ch. 3); 2) endorsement of

ethics committees in the President’s Commission

report, Deciding to Forego Life-Sustaining Treatment (153); and 3) publication of Federal regulations on treatment of handicapped infants that

strongly endorse the establishment of infant care

review committees (45). It is estimated that half

to three-quarters of all hospitals now have an

ethics committee (44)68)) and some nursing homes

have ethics committees (226). (See ch. 3 for a discussion of the functions of ethics committees and

differences of opinion about their role vis-a-vis

the legal system).

The Baby Doe Regulations

From 1982 to 1986, controversy about the appropriate role of the Federal Government in decisions

about life-sustaining treatment for individual patients was focused on the Baby Doe regulations,

described below. Some observers suggested that

if these regulations were upheld in court, similar

regulations for elderly people, sometimes referred

to as “Granny Doe” regulations, might be forthcoming (18,139). Since the Baby Doe regulations

were based on Section 504 of the Handicapped

Rehabilitation Act of 1973—legislation that forbids

discrimination against handicapped persons of all

ages in programs that receive Federal money—

similar regulations for elderly people were certainly a possibility.

The Baby Doe regulations based on the Handicapped Rehabilitation Act of 1973 were struck

down by the U.S. Supreme Court in June 1986.

New Baby Doe regulations based on 1984 Amendments to the Child Abuse Prevention and Treatment Act are now in effect. A brief review of the

regulatory and legislative history of the Baby Doe

regulations is provided here because of its relevance to questions about the potential role of the

Federal Government in treatment decisions for

elderly people.

In April 1982, a baby was born in Bloomington,

Indiana, with Down’s syndrome and esophageal

atresia, a defect that prevents normal feeding. His

parents refused consent for corrective surgery.

A circuit court judge upheld the refusal, the Indiana Supreme decided not to intervene, and the

baby died. A month later, the Reagan Administration notified hospitals that Section 504 of the
64 ● Life-Sustaining Technologies and the Elderly

Rehabilitation Act of 1973 required them to provide life-sustaining treatment for handicapped

newborns (139,161).

In March 1983, DHHS proposed several procedures to implement Section 504 of the Rehabilitation Act of 1983. They included: a requirement

that hospitals post notices warning against “discriminatory failure to feed and care for handicapped infants” (61); a toll-free number—the Baby

Doe Hotline—to allow anyone to report suspected

denial of treatment to newborns to the Federal

Office for Civil Rights; and “Special Assignment

Baby Doe Squads” to investigate such reports (139).

Health care, medical, and nursing associations

strongly opposed the procedures, and they were

subsequently struck down, revised by DHHS, and

reissued in July 1983. In response to continued

criticism by professional groups, DHHS revised

the regulations again and reissued them in January 1984. The new regulations, which encouraged

hospitals to establish infant care review committees as a first forum for review of treatment decisions were less objectionable to health care professionals (139).

Meanwhile, in New York in October 1983,

another baby, Baby Jane Doe, was born suffering

from spina bifida and other impairments. Her parents refused surgery to enclose her spinal column,

and an unrelated individual brought suit to have

the surgery done. A lower court authorized the

surgery, but that order was reversed by the appellate court. Nevertheless, DHHS sought access

to Baby Jane Doe’s medical records to determine

whether there had been a violation of the Baby

Doe regulations.

In 1984, the U.S. Court of Appeals for the Second Circuit affirmed lower court decisions that

denied the Federal Government access to the medical records. The Court concluded that Baby Jane

Doe did not meet the definition of “handicapped

individual” in the Rehabilitation Act of 1973 and

that the act was never intended by Congress to

authorize Federal intervention in individual treatment decisions (16,18).

The Federal Government did not appeal this decision, but the American Hospital Association, the

American Medical Association, and other groups

used it to appeal the Baby Doe regulations. The

regulations were struck down in June 1984—a

decision that was affirmed by the U.S. Supreme

Court in June 1986 (16)18).

In the meantime, Congress had passed the 1984

Amendments to the Child Abuse Prevention and

Treatment Act. The amendments define medical

neglect to include withholding “medically indicated

treatment” from “disabled infants with life-threatening conditions” and require State protective

service agencies that receive Federal child protective service grant funds to investigate reports

of medical neglect, so defined. In April 1985, DHHS

issued new regulations, also referred to as Baby

Doe regulations, to implement this legislation (139).

Because the new Baby Doe regulations are based

on legislation that applies only to children, they

could not be extended to cover treatment of

elderly persons. Federal legislation like the Child

Abuse Prevention and Treatment Act but for

elderly people remains a possibility, however.

Hospice

Hospice programs provide palliative or supportive care for terminally ill people, and thus are

an alternative to the use of life-sustaining technologies. The first hospice was established in this

country in 1973, and there are now about 1)500

hospice programs (142). Hospice is a concept, not

a setting, and although most hospice programs

provide services to people at home, many also provide inpatient care in a hospital, nursing home,

or freestanding unit.

Hospice programs emphasize patient comfort

rather than curing or controlling disease. Alleviation of pain is a primary objective, and patients’

emotional and spiritual needs are addressed as

well as their physical needs. Care is generally

highly individualized, and families are considered

part of the unit of care. Care is provided by a multidisciplinary team, including nurses, social workers, home health aides, physicians, and others.

Volunteers are often trained to provide counseling, emotional support, and other services (57).

Since 1982, Medicare has included a hospice benefit for enrollees who choose this type of care.

The patient’s physician must certify that the pa-
Ch. 2—The Context of the Report ● 6 5

tient is terminally ill—defined in Medicare regulations to mean that the person’s life expectancy

is 6 months or less. While covered under the

hospice benefit, an individual waives some other

Medicare benefits, but he or she may revoke the

hospice election at any time. Medicare reimbursement to hospice programs is based on the cost

of care for each patient, but there is a cap on the

average cost of care for all beneficiaries (188).

Many hospice patients are elderly. The National

Hospice Study, a study of 13,000 patients cared

for in hospices between 1980 and 1982, found that

35 percent were age 65 to 74, and another 30 percent were over age 75 (71). The same study found

that 94 percent of the hospice patients had terminal cancer. The large percentage of cancer patients

in hospices occurs in part because it is easier to

diagnose cancer patients as terminally ill and to

predict their life expectancy than to predict the

life expectancy of persons with other conditions

(I 70). Anecdotal evidence suggests that people

with organic dementias, such as Alzheimer’s disease, are seldom admitted to hospice programs

(221).

Many hospice patients, their families and friends,

and hospice staff point out the tremendous value

of hospice programs in helping patients and families face terminal illness and cope with the difficult physical and emotional aspects of dying (41,

227). Without questioning the positive effects of

hospice for some patients, observers have raised

questions about several aspects of the hospice concept and its implementation that are relevant to

this report.

First, some observers argue that hospice practices cause some terminally ill people to die sooner

than necessary because hospice patients forgo lifesustaining treatments that might extend their lives

and because hospice programs use medications

THE COST

Total health care expenditures in the United

States (including both acute and long-term care

expenditures) constitute about 11 percent of the

Nation’s gross national product (GNP) —among the

highest levels in the world. In 1984, these expendthat may shorten patients’ lives. In addition, because diagnosis is uncertain, it is suggested that

some hospice patients may have curable conditions that are missed because they have decided

in favor of palliative care only (67). Advocates of

hospice care argue in response that the benefits

of this approach for the great majority of patients

far outweigh these considerations.

Second, some research suggests that the care

received by patients in some hospice programs

may not differ significantly from conventional

care. In one study, for example, terminally ill cancer patients treated in a hospital-based hospice

program were compared with similar patients

who received conventional care, The hospice patients reported more satisfaction with their care

than the other patients, but there was little difference between the groups in number of invasive

and curative treatments and no significant difference in depression, anxiety, or the frequency and

intensity of pain reported by the patients (93,94).

In contrast, the National Hospice Study found that

hospice patients received significantly fewer intensive medical interventions and diagnostic tests

than conventional care patients; there were few

differences between the two groups in pain and

other symptoms accompanying terminal illness

or in patient satisfaction with care, however (71).

Many people argue that hospice care is less expensive than conventional care. Some studies support this contention, and others do not. Whether

the cost of hospice v. conventional care is an important consideration in deciding whether hospice

care should be available as a treatment option is

another point of disagreement. In this context,

many people argue that it is inappropriate to consider the cost of care and that the important considerations are how to provide appropriate medical care (67) and/or how to minimize patient

suffering,

OF CARE

itures amounted to more than $380 billion, the

equivalent of about $1,600 per person. Expenditures have increased dramatically in recent decades, whether measured in actual dollars, in

spending per capita, or as a proportion of the GNP.
66 • Life-Sustaining Technologies and the Elderly

In 1960, for example, total health care expenditures constituted only 5.3 percent of the GNP,

$26.9 billion, and $146 per capita (192).

This growth in health care expenditures has

raised questions about the proportion of national

resources allocated to health care and about how

health care dollars are allocated among different

age groups and different types of care. With regard to the latter question, the following figures

are frequently cited:

● Health care expenditures for the Nation’s 29

million elderly persons account for about onethird of all health care expenditures, although

the elderly constitute only about 11 percent

of the population.

● Medicare expenditures (which are primarily

for hospital and physician services) are concentrated in a small proportion of users. In

1982, for example, 1 percent of Medicare enrollees over age 65 accounted for 20 percent

of all Medicare expenditures, and the top 5

percent of Medicare enrollees over age 65 accounted for more than 50 percent of Medicare expenditures (162).

● Medicare expenditures are concentrated in

the end of life. The 5.9 percent of Medicare

enrollees who died in 1978, for example, accounted for 27.9 percent of all Medicare expenditures: 30 percent of this was spent for

care in the last 30 days of life, 46 percent for

care in the last 60 days of life, and 77 percent for care in the last 6 months of life (119).

● Finally, a small proportion of persons who

die incur very high Medicare expenses in the

last year of life. Three percent of elderly Medicare enrollees who died in 1978 had Medicare expenditures of over $20,000, and 1 percent had expenditures over $30,000 (119).

These figures are often cited to suggest that the

Nation spends too much on expensive medical care

for elderly people, especially in the end of life.

This expensive care is assumed to include “heroic

measures, ” such as the life-sustaining technologies

discussed in this report, and it is implied, and

sometimes stated openly, that such care is wasted

on people who are going to die anyway. It is also

sometimes suggested that public resources now

spent on expensive treatment for elderly people

who are going to die anyway should be spent instead on preventive health care, medical care for

younger people, improvements in long-term care

for elderly people, or other public programs, such

as education.

This section discusses the cost of care in the

end of life and provides brief background on several related topics —determining health care costs,

how technology affects costs, public programs that

pay for health care for elderly people, and the

concept of a “right to health care. ”

Determining Health Care Costs

Determining health care costs is difficult because

of the many components that makeup total costs

and the ambiguous relationship between costs,

charges, and expenditures for health care. Health

care costs can include direct, indirect, and intangible costs. Direct costs are the value of products

and services related specifically to the diagnosis

or treatment of an illness. They include medical

costs, such as nursing personnel, equipment, and

medical supplies, and nonmedical costs (e.g., travel

to a physician’s office, special foods, or homemaker services). Indirect costs of health care are

the value of lost opportunities, such as lost income,

related to mortality or morbidity. Intangible costs

include pain, suffering, and other outcomes of illness that are difficult to measure. Information

about the costs of medical interventions is often

difficult to obtain, and even when costs are reported, they rarely include indirect or intangible

costs or even nonmedical direct costs.

Frequently, the only available information about

the cost of medical interventions is charges (i.e.,

billed amounts) or expenditures (i.e., payments).

But charges and expenditures may not accurately

reflect costs for a variety of reasons not discussed

here. Sometimes only Medicare expenditure data

are available, but they do not include the Medicare deductible and coinsurance paid by the beneficiary, charges for Medicare-covered products

and services that are greater than allowed charges,

or the cost of products or services that are not

covered by Medicare, including outpatient drugs

and most nursing home care. Information in this

report about costs, charges, and expenditures

should be viewed with these shortcomings in

mind.
Ch. 2—The Context of the Report ● 6 7

The Cost of Care at the End of Life

As indicated, a significant percentage of Medicare expenditures is for elderly people at the end

of life. Research shows that expenditures for persons who die are significantly greater than expenditures for persons who do not die (128,210,211,

212). One frequently cited study (119) found, for

example, that Medicare expenditures in 1978 were

six times higher for elderly enrollees who died

than for enrollees who did not die in that year,

These figures compare Medicare expenditures

for people who died with expenditures for all

other elderly Medicare enrollees, some of whom

were not sick and some of whom used no Medicare-covered services. In general, people who die

have been sick, and health care expenses are

higher for people who are sick than for people

who are not. This obvious point is sometimes forgotten in discussions about the cost of care at the

end of life.

Ninety-two percent of Medicare enrollees who

died in 1978 used some Medicare-covered services in their last year of life compared to only 58

percent of Medicare enrollees who did not die

(119). When expenditures for these two groups

of users are compared, Medicare expenditures are

four times higher for those who died than for

those who did not die (instead of six times higher

as cited above). Thus, part of the explanation for

higher Medicare expenditures for those who died

is the greater likelihood that they used at least

some Medicare-covered services in their last year

of life.

The relatively high percentage of all health care

expenditures for elderly people (29 percent) compared to their proportion of the population (11

percent) is also explained at least in part by the

higher prevalence of illness and death among

elderly people. In 1984, for example, nearly 70

percent of all decedents were elderly (216). Some

people conclude from these arguments that high

Medicare expenditures for elderly people who are

sick or dying are reasonable and to be expected

and that Medicare was enacted precisely to pay

for hospital and other acute care for such people.

Although it is true that elderly people who die

incur greater Medicare expenditures than those

who do not die, most elderly people who die do

not incur high Medicare expenditures. Data presented in table 2-4 show that 69 percent of elderly

Medicare enrollees who died in 1978 incurred less

than $5)000 in Medicare expenditures and 45 percent incurred less than $2,000 in Medicare expenditures. Moreover, average Medicare reimbursement for persons who die decreases with age. In

1978, average reimbursement for persons over

85 who died was only about half the average reimbursement for persons age 67to69whodied(119).

No data are available to determine how much

is spent on life-sustaining treatments for elderly

persons who die, but high health care expenses,

especially hospital expenses, are sometimes assumed to indicate the use of life-sustaining treatments. Further inspection of the data in table 2-4

shows that among the approximately 10)000

elderly persons who received more than $30,000

in Medicare reimbursements in 1978, 5)000 lived,

and 5,000 died in that year. Among all those who

received $20,000 to $29,999 in Medicare reimbursements, 20,000 lived, and 19,000 died. If high

Medicare expenditures do indicate the use of lifesustaining treatments, these data suggest that at

least half of those who received such treatments

lived.

Even so, it could be argued that the expenditures for people who died were wasted. Scitovsky

points out, however, that persons who die can only

be identified in retrospect:

It is easy enough, of course, to designate a patient as terminal or as dying retrospectively but

an entirely different matter to do so prospectively.

Despite the enormous advances of modern medicine in the past 50 years or so, medical prognosis

is still highly uncertain. In fact, modern medicine,

by vastly increasing the armamentarium at the

physician’s disposal, may well have increased the

difficulty and uncertainty of medical prognosis

compared to the days when the physician could

do little more than give moral support to the sick.

Today, predicting imminent death with any degree of certainty is difficult in the case of most

patients, and predicting death 12 or 6 or even 3

months in advance well-nigh impossible (170).

When the cost of care for persons “in the last

year, 6 months, or 30 days of life is reported in

the media, it is sometimes erroneously assumed
68 . Life-Sustaining Technologies and the Elderly

Table 2-4.—Medicare Reimbursements for Decedents in

Their Last Year of Life and Survivors in 1978

Survival status

Decedents Survivors

Number of Amount of Number of Amount of

enrollees reimbursements enrollees reimbursements

Reimbursement interval in thousands in millions in thousands in millions

Total. . . . . . . . . . . . . . . . . . . 1,142 $4,969 18,342 $13,365

No reimbursement. . . . . . . 89 0 7,679 0

Less than $100 . . . . . . . . . . 86 4 3,597 159

$100 to $1,999 336 279 5,111 2,917

$2,000 to $4,999 : : : : : : : : : 274 919 1,252 3,984

$5,000 to $9,999 . . . . . . . . . 217 1,546 516

$10,000 to $14,999 . . . . . . .

3,540

84 1,024 124

$15,000 to $19,999 . . . . . . .

1,485

32 552 37 627

$20,000 to $29,999 . . . . . . . 19 439 20 479

$30,000 and over . . . . . . . . 5 205 5 173

Percent distribution

Total. . . . . . . . . . . . . . . . . . . 100 100 100 100

No reimbursement. . . . . . . 8 42 0

Less than $100 . . . . . . . . . . 8 (

a

) 20 1

$100 to $1,999 . . . . . . . . . . 29 28 22

$2,000 to $4,999 . . . . . . . . . 24 18 7 30

$5,000 to $9,999 . . . . . . . . . 19 31 3 26

$10,000 to $14,999 . . . . . . . 7 21 11

$15,000 to $19,999 . . . . . . . 3 11 (

a

) 5

$20,000 to $29,999 . . . . . . . 2 9 (a) 4

$30,000 and over . . . . . . . . 1 4 (a) 1

a

Less than 1 percent

SOURCE J Lubitz, and R Prlhoda, “The Use and Costs of Medicare Serlvces In the Last 2 Years of Ltfe, ” Hea/fh Care F/nanc.

/rrg Review 5(3)11 7.131, 19S4,

that their deaths were predictable. But accurate

predictions are seldom possible.

The findings of one study conducted in an ICU

(53) are relevant to this point. When each patient

was admitted to the ICU, a physician estimated

the probability that the patient would survive to

be discharged from the hospital. Results of the

study indicate that 9 percent of admissions ended

in the death of the patient, and these patients accounted for 17 percent of all charges. Mean

charges for patients given less than a 50 percent

chance of survival were twice as high as mean

charges for patients given a greater than 50 percent chance of survival. However, among survivors, the highest expenditures were for patients

given a low probability of survival. Likewise,

among nonsurvivors, the highest expenditures

were for patients given a high probability of survival. The researchers concluded:

Our study confirms the association between

high cost and poor outcome, and documents a similar relation between high cost and a poor prognosis . . . . However, these two results do not

follow from each other; the relations between

prognosis, expenditure, and outcome are more

complex than can be appreciated when a study

focuses only on nonsurvivors or on subsets of patients with the poorest prognosis or the highest

costs .

Among nonsurvivors, the highest charges were

due to caring for patients who were perceived

at the time of admission as having the greatest

chance of recovery. Among survivors, the highest charges were incurred by those thought to

have the least chance of recovery. Patients with

unexpected outcomes (death for the patient with

a good prognosis or survival for the patient with

a poor prognosis) incurred the greatest costs.

Our findings emphasize the importance of clinical uncertainty in determining resource expenditures for the critically ill; when the outcome is

least expected, the expenditures are greatest (53).

Many analysts have suggested that better information about the expected outcome of treatment

for different types of patients could improve clinical decisionmaking. For this reason, OTA commissioned a paper on “Classification Systems for
Ch. 2—The Context of the Report ● 6 9

Decisionmaking for Critically Ill Elderly Patients”

and sponsored a workshop on this topic. The consensus of experts at the workshop was that existing classification systems, while valuable for many

administrative and research purposes, are not

sufficiently precise to be used for individual treatment decisions, s

It is frequently said that increased use of expensive life-sustaining treatments for terminally

ill patients is responsible, at least in part, for rising health care costs. Scitovsky (170) has argued

that the data do not support this contention, and

recent analyses of Medicare expenditures for

elderly enrollees in 1967, 1975, 1979, and 1982

support her conclusion. The data show that over

the past 20 years, average Medicare expenditures

for persons who die have increased at about the

same rate as Medicare expenditures for persons

who survive. According to HCFA analysts, these

data indicate that “expensive methods of prolonging the lives of terminally ill patients are not the

culprit behind increasing Medicare program expenditures” (162).

The preceding discussion of health care expenses at the end of life is based almost entirely

on analysis of Medicare expenditures and therefore only accounts for services that are Medicare

reimbursable—primarily hospital and physician

services. An important component of the total cost

of life-sustaining treatments that is left out of the

analysis is the cost of nursing home care. Medicare pays for only about 2 percent of nursing

home care in this country, but many severely debilitated and terminally ill elderly persons spend

some time in a nursing home, and some die there.

The true cost of nursing home care associated

with the use of life-sustaining technologies could

be said to include the cost of care for people receiving life-sustaining treatments in a nursing

home and the cost of care for nursing home residents who are alive because they ever received

life-sustaining treatments in any setting. Some in-

‘Some findings of the paper and workshop are incorporated in

this report. The reader is also referred to the commissioned paper

that is available from the National Technical Information Service

(see app. A).

formation is available about how many nursing

home residents receive each of the treatments

OTA studied, but no data are available on the number of nursing home residents who are alive because they have ever received any life-sustaining

treatment in any setting.

One retrospective study of medical care expenses in the last year of life for 365 persons cared

for by physicians at a California clinic in 1983 and

1984 (171) provides information about the cost

of all types of care received by the patients. The

study found that the average expense for medical care in the last year of life was $22,597. Sixty

percent of this was spent for hospital care; 20 percent for physician services; 13 percent for nursing home care; and 8 percent for home health

care.’ Total average expenses decreased with

age, from $27,939 for decedents under age 65,

to $25,418 for decedents age 65 to 79, and $17,720

for decedents over age 80. Average expenses for

hospital care and physician services decreased

with age: average expenses for physician services,

for example, were $8,339 for decedents under age

65, $5,098 for those age 65 to 79, and $2)177 for

those over age 80. Conversely, average expenses

for nursing home and home health care increased

with age: average expenses for nursing home care

were $326 for decedents under age 6.5, $1,262

for those age 65 to 79, and $5,407 for those over

age 80.

The same study compared medical care expenses in the last year of life for decedents with

different levels of functional ability defined in

terms of patients’ ability to dress, bathe, and toilet themselves, and to transfer from bed to chair

independently. Average medical care expenses

were significantly lower for persons who were

unable to perform any of the functions independently throughout the 12-month period than for

persons who were able to perform all four functions independently throughout the 12 months

prior to their death (171). Hospital expenses were

sharply lower for persons with impaired functional ability than for persons with unimpaired

functional ability. Conversely, nursing home and

home health care expenses were higher for per-

‘Percent figures do not sum to 100” percent due to rounding.
70 • Life-Sustaining Technologies and the Elderly

sons with impaired functional ability. The author

concludes:

Data on the relationship between functional status and intensity of care as indicated by expenses

for hospital and physician services strongly suggest that the patients who got intensive care in

their last year of life were persons who were functioning well during this period, whose prognosis

was likely to have been good, and who were not

the kind of patients a physician would feel justified in “letting die. ” By contrast, persons who were

in poor functional condition received largely supportive care but very little intensive hospital and

physician services (171).

When medical expenses for persons of different ages with similar functional abilities are compared, the difference in their use of specific services is striking. Among persons who were able

to function independently, for example, those under age 65 had average expenses for hospital care

of $40)227, compared to $20,864 for those age

65 to 79 and $12)642 for those over age 80. These

figures suggest some implicit rationing by age for

hospital care (171).

A 1984-85 study of the last days of life of elderly

decedents in Connecticut, sponsored by the National Institute on Aging, will provide further information about the relationship between service utilization and the functional ability of the

individual. Results of the study are due to be released in late 1987 (34).

In summary, only a small percentage of elderly

people who die incur high Medicare expenditures

in their last year of life, and of all Medicare enrollees with high Medicare expenditures, half or

fewer die. Thus, what is generally perceived as

“the high cost of dying” may be better described

as the high cost of medical care for sick people,

some of whom live and some die. Over the past

20 years, Medicare expenditures for persons who

die have increased at about the same rate as Medicare expenditures for people who survive. Thus,

the increase in Medicare expenditures over that

time is not due to disproportionate use of expensive life-sustaining treatments for people who die.

Finally, the limited available information on all

medical expenses in the last year of life indicate

that average expenses decrease with age and functional limitations of the patient and that persons

with poor functional ability have significantly

lower expenses for hospital care but higher expenses for nursing home and home health care

than persons with unimpaired functional ability.

How Technology Affects

Health Care Costs

Increases in health care costs can result from

increases in the number of persons receiving care;

wage and price inflation; and changes in service

intensity, which includes changes in technology

use. There is a widespread impression that new

medical technologies are a major cause of rising

health care costs. A 1984 OTA report found that

increases in service intensity, including the use

of new medical technologies, accounted for about

one-fourth of the 93 percent increase in per capita hospital costs from 1977 to 1982 and for a

smaller percentage of the increase in nonhospital costs over the same period (199).

Clearly the impact of technology on health care

costs should not be evaluated in isolation from

its effect on quality of care. There is evidence,

however, that some technologies are overused and

thus raise health care costs without improving

quality of care (199). Overuse is sometimes blamed

on what is called the “technological imperative)”

that is, the belief that if a technology exists, it

should be used. Other reasons for overuse of medical technologies are: 1) physicians’ desire to do

as much as possible for their patients; 2) uncertainties about what constitutes appropriate use;

3) increasing specialization within medicine; 4)

public demand for sophisticated technologies; 5)

competition among hospitals to attract patients

and physicians; 6) incentives created by reimbursement policies; and 7) the practice of “defensive medicine”-—i.e., overuse of medical tests and

procedures to defend against malpractice suits

(198).

As discussed earlier, the development and diffusion of medical technologies is strongly influenced

by Federal funding for research and by the coverage and reimbursement policies of Federal programs that pay for medical care. Some observers

have noted that one way to limit rising health care

costs would be to limit the development and/or

diffusion of new medical technologies. Yet few
Ch. 2—The Context of the Report ● 71

people advocate this approach because of its 1ongrange impact on the quality of health care (75,85).

Moreover, although many technologies raise

health care costs, some reduce costs, particularly

those that decrease the need for hospital care

(192). At least one expert believes, however, that

limiting the development and diffusion of new medical technology may be the only way to control

rising health care costs over the long term (169).

Public Programs That Pay for

Medical Care for Elderly People

Public programs pay for a substantial proportion of health care expenses of elderly people. In

1981, they accounted for 64 percent of all such

expenses, Private insurance and out-of-pocket payments accounted for the remaining 36 percent

(205).

Medicare is the Federal program that pays for

medical services for most persons over 65, some

disabled persons under 65, and persons with endstage renal disease. In 1981, Medicare paid about

45 percent of all health care expenses of elderly

people, including about 75 percent of hospital care,

55 percent of physicians’ services, and about 2

percent of nursing home care (205).

Medicare has two parts: hospital insurance, Part

A; and supplementary medical insurance, Part B.

Medicare Part A covers the first 60 days of hospital care after the patient has paid an initial deductible ($520 in 1987) and the 61st to 90th day

of hospital care after the patient has paid a daily

coinsurance ($130 per day in 1987). Medicare enrollees also have a lifetime reserve of 60 days of

covered hospital care, but they must pay a daily

coinsurance of one-half the initial deductible ($260

in 1987).

Medicare Part A also pays for up to 100 days

of post-hospital nursing home care if the Medicare intermediary determines that the beneficiary meets Medicare’s eligibility criteria for nursing home care. After the 20th day, the patient must

pay a daily coinsurance ($65 in 1987). In 1984,

Medicare paid for an average of 27 days of nursing home care for eligible beneficiaries (189). Home

health care, including visits of a nurse, home

health aide, speech or physical therapist, or medical social worker, is also covered within strict

guidelines. There is no deductible or copayment

for home health care. In 1984, Medicare paid for

an average of 27 home health care visits for eligible beneficiaries (189).

Medicare Part B benefits include physician services, supplies ordered by physicians, outpatient

hospital visits, and durable medical equipment,

prosthetic devices, and other medical services and

equipment provided outside the hospital. Part B

reimburses 80 percent of “reasonable charges”

for covered services, and the beneficiary is responsible for the remaining 20 percent, plus an

annual deductible ($75 in 1987) and a monthly

premium ($17.90 in 1987).

Medicaid is the joint Federal/State program that

pays for medical services for low-income individuals of all ages. In 1981, Medicaid paid about 14

percent of all health care expenses of elderly people, including about 4 percent of hospital care,

3 percent of physicians’ services, and 45 percent

of nursing home care (205).

Medicaid regulations are established by each

State within Federal guidelines, and eligibility requirements and covered services vary significantly

among the States. In general, however, Medicaid

pays for hospital care for the small proportion

of elderly people who lack Medicare coverage, private insurance, or sufficient income and assets

to pay for their own care. In addition to physician services and nursing home care mentioned

earlier, Medicaid also pays for outpatient hospital care, laboratory services, home health care,

medical supplies, drugs, and the inpatient hospital deductible for eligible individuals.

There are no deductibles or copayments in Medicaid, but limitations on allowable income and assets restrict eligibility to persons with low income

in all States and very low income in some States.

The Veterans’ Administration provides hospital care in VA facilities and nursing home care

in VA and non-VA facilities for eligible veterans.

Home care is provided through some VA medical

centers. Veterans with service-connected disabilities can receive medical care through the VA. Veterans without service-connected disabilities who

have income below specified levels or who con-
72 . Life-Sustaining Technologies and the Elderly

tribute a specified amount toward the cost of their

care can also receive medical care through the VA.

Other public programs also pay for some health

care expenses of elderly people but are not discussed here because they seldom pay for services related to the use of life-sustaining treatments.

As of 1981, public programs other than Medicare

and Medicaid but including the VA paid for about

5 percent of all health care expenses of elderly

people, including 8 percent of hospital expenses,

less than 1 percent of physician services, and about

4 percent of nursing home care (205).

Public Programs and the Concept

of a Right to Health Care

Although health care is regarded by many people as a basic necessity and a basic human right,

neither the U.S. Supreme Court nor any appellate court has ruled that there is a constitutional

right to health care (154). Federal and State statutes that authorize programs to fund health care

-e.g., the Medicare, Medicaid, and VA programs

just discussed—thereby create entitlement rights

to some health care services; that is, the intended

beneficiaries of a program are considered to have

a legal right to reimbursement for the health care

services designated by the statute or by regulations that implement the statute. But this right

does not extend to health care services not covered by the statute or regulations that implement

it. Thus, for example, elderly persons enrolled in

Medicare have a legal right to reimbursement for

Medicare-covered services but no legal right to

reimbursement for services, such as outpatient

prescription drugs, that are not currently covered

by Medicare. Likewise, elderly veterans have a

legal right only to specific health care services designated by statute and VA regulations.

Individuals who believe they have been denied

services that they have a legal right to receive under Federal or State statutes and regulations can

appeal through administrative and judicial channels, but such appeals must be formulated within

the limits of the statutes and regulations. The fact

that an individual believes he or she needs a given

health care service or that a physician says the

individual needs the service, or even that the service has already been provided is generally not considered to create a legal obligation for a public

program to pay for the service unless the individual is eligible and the service is covered under

the program’s regulations.

In its 1983 report, Securing Access to Health

Care, the President’s Commission for the Study

of Ethical Problems in Medicine and Biomedical

and Behavioral Research concluded that:

Society has a moral obligation to ensure that

everyone has access to adequate health care without being subject to excessive burden (154).

The Commission determined that this moral obligation does not create a corresponding moral right

to health care for the individual. Furthermore,

the Commission determined that the societal obligation to ensure access to adequate health care

is not solely or even primarily the obligation of

government. Rather it is an obligation of society

in general—including individuals; public and private groups; local, State, regional, and national

organizations; professional and workplace organizations; and family, kinship, and ethnic groups

(154). Nevertheless, the Commission stated that:

When the (private health care) market and charity do not enable individuals to obtain adequate

care or cause them to endure excessive burdens

in doing so, then the responsibility to ensure that

these people have equitable access to health care

resides with local, State, and Federal Governments.

Although it is appropriate that all levels of government be involved in seeing that equitable access to health care is achieved, the ultimate

responsibility for ensuring that this obligation is

met rests with the Federal Government (154).

Some commentators have criticized the President Commission for its failure to assert a moral

right to health care for the individual and for its

failure to advocate a legal right to health care (see,

for example, Arras, 1984 [20]). These competing

positions have been the topic of extensive legal,

ethical, and philosophical debate in recent decades. This debate is relevant to many of the issues discussed in this report, including the issue

of how to distribute limited health care resources

(see ch. 4).
Ch. 2—The Context of the Report ● 7 3

CONTAINING HEALTH CARE COSTS

Concern about high health care costs in general and about public expenditures in particular

have resulted in cost-containment measures in all

public programs that pay for health care. This

section focuses on Medicare’s Part A prospective

payment system (PPS) because the technologies

OTA studied are provided primarily in hospitals.

PPS has created increased demand for out-of-hospital care, however, and cost-containment measures in public programs that pay for nursing home

and home care are also discussed briefly.

Medicare’s Prospective Payment

System for HospitaI Care

From its inception in 1965 until 1983, Medicare

reimbursed hospitals for inpatient care of Medicare enrollees on the basis of the cost of enrollees’

care, subject to certain limitations. The Social Security Amendments of 1983 mandated a new hospital reimbursement system, the prospective payment system. PPS uses diagnosis-related groups

(DRGs) to classify patient groups by particular diagnoses. Each DRG category has a predetermined

payment that was set in the beginning to reflect

the average charges per patient per hospital stay

for treatment of the disease(s) subsumed under it.

The 470 DRGs are based primarily on diagnosis, but surgical procedures, patient age (i.e., under or over age 70)) comorbidities, complications,

and discharge status are also used to define some

DRGs. Cmnorbidities are defined as preexisting

conditions that, combined with a specific diagnosis, prolong length of stay by 1 day or more in

at least 75 percent of cases, Complications are conditions that arise during the hospital stay and prolong length of stay by 1 day or more in at least

75 percent of cases. Comorbidities and complications exist in a particular case if a patient with

a given primary diagnosis also has specified secondary diagnoses.

In some cases, patients with identical diagnoses are covered by two DRGs; one includes patients who are over age 70 or have comorbidities

or complications, while the other includes patients

who are under age 70 and have no comorbidities

or complications. Reimbursement for the former

DRG is higher than for the latter, and patients who

are over age 70 are in the former DRG automatically. There is no additional reimbursement for

comorbidities or complications for them.

Patients are assigned to a DRG when the-y are

admitted to a hospital. Those who remain in the

hospital much longer than the average length of

stay or have much higher than average costs for

their DRG category are called “outliers .“ Medicare

reimbursement for outliers is based on the marginal cost of care. Reimbursement for length-ofstay outliers, for example, is 60 percent of the

appropriate per diem amount. Outlier payment

policy has been a controversial aspect of PPS since

its inception. Although outlier payments help to

defray losses incurred by hospitals in the care of

unusually expensive cases, they do not cover the

full cost of these cases, nor are they intended to

(158).

The purpose of PPS is to reduce Medicare expenditures while maintaining an acceptable level

of quality of care and access for beneficiaries.

Since hospitals make money on patients whose

care costs less than the fixed payment for their

DRG and lose money on patients whose care costs

more than the fixed payment, PPS creates a financial incentive for hospitals to decrease the cost

of treating a patient in a single hospital stay. Strategies hospitals can use to do this include reducing a patient’s length of stay, reducing the intensity of services (i.e., number of services provided),

and reducing staffing levels (202).

PPS is based on the assumption that some of

the services provided by hospitals in the past were

unnecessary or were produced inefficiently, and

that cost containment can be achieved by eliminating such services without sacrificing quality

of care or restricting access to necessary care.

It is recognized, however, that the system will have

both positive and negative impacts. The potential

positive impacts of reduced length of stay and reduced intensity of services include psychological

benefits for some patients, reduced use of unnecessary services, and lessened chance of iatrogenic

events (infections, drug reactions, or other problems that result from medical treatment). Poten-
74 ● Life-Sustaining Technologies and the Elder/y

tial negative impacts include decreased access to

and use of necessary services and premature discharge of hospitalized patients (202).

PPS is expected to affect the care of different

kinds of patients in different ways, and analysts

have identified several groups of elderly patients

who may be at risk of reduced quality of care,

reduced access to necessary care, or both. They

include:

●

●

●

●

●

●

the oldest elderly (74,202, 215),

patients with multiple conditions (28)84)131,

156)202))

severely or critically ill patients (28,176),

patients with end-stage renal disease (215),

patients who require nursing home or home

health care following hospital discharge (131),

and

the poor elderly (215).

These groups overlap. Common factors among

them are the likelihood that patients in each group

will remain in the hospital longer or incur higher

costs than other patients in the same DRG. Patients in these groups have been called “DRG

losers.” Since they are relatively easy to identify,

some observers fear that some hospitals will refuse to admit them or transfer them to public hospitals, a phenomenon called “dumping”; that they

may not receive all the services they need; and

that they may be discharged too soon (28)56)176).

Other observers argue that professional ethics and

fear of malpractice suits will outweigh financial

incentives to reduce services for these patients

and that high quality care will be maintained (215).

Average length of hospital stay, number of hospital admissions per 1000 population, and hospital occupancy were all dropping before PPS began and have continued to drop since then,

although average length of stay for adults increased slightly in 1986. Hospital staffing levels

have dropped since PPS began, and the incidence

of patients being transferred to other hospitals

has increased (86)158,215). These objective findings have no clear implications for either quality

of care or access to care, however. A growing volume of anecdotal evidence and research findings

indicate, in addition, that some patients are being

discharged “quicker and sicker” (58,121,167,193,

195)206)207).

There are also reports that some hospitals are

using the average length of stay and average cost

of care for DRGs as maximum lengths of stay and

costs (157). Statistical analysis of length of stay

data for fiscal year 1986 indicate that this practice, if it exists, is not widespread (40). Nevertheless, since PPS began, an unknown number of patients have been told, improperly, that they had

to leave the hospital because their Medicare coverage had run out (157,191,223).

In response to recent polls sponsored by HCFA,

the American Society of Internal Medicine, the

American Medical Association, and the National

Opinion Research Center, one-half to threequarters or more of the physicians surveyed reported being asked by hospital adminstrators to

reduce lengths of stay, diagnostic testing, and medical procedures in general (130). According to polls

and anecdotal reports, many physicians believe

that such reductions in length of stay and service

intensity are reducing quality of care and access

to care (14)86,138,233).

Before PPS and on a continuing basis, experts

have identified problems in quality of care and

access to care that could occur in response to the

system (28,174,202). ProPAC, other public and private agencies, and professional associations are

monitoring its impact. HCFA is conducting numerous studies to identify and evaluate the effects

of PPS (215), but the adequacy of this research

has been questioned by OTA, the General Accounting office, and some congressional committees

(193,202,207).

A major problem in evaluating the effects of PPS

is the difficulty of defining and measuring quality of care. Ideally, quality of care could be evaluated in terms of patient outcomes, but there are

many problems with this approach (202). As one

observer has noted:

Negative outcomes (e.g., death, disability) are

inevitable given the current state of the medical

art-despite tremendous technologic advances,

many diseases still elude a cure. This problem is

especially pertinent to those elderly with multiple comorbidities. Therefore, the key to outcome

studies is to try to disentangle inappropriate outcomes from those which were unavoidable. Once

this task is complete, the negative outcome must

be linked with some step or misstep in the proc-
Ch. 2—The Context of the Report . 75

ess of care. Even in settings of clinical trials, establishing this causality may prove a complex task

frought with pitfalls (84).

The Institute of Medicine, OTA, and other public and private agencies are currently studying

aspects of the problem of measuring quality of

care.

Under PPS, hospitals are required to contract

with a peer review organization (PRO) to monitor quality of care and evaluate the medical necessity and appropriateness of admissions,

inpatient procedures, discharges, and readmission (202, 215). PRO reviews can result in reclassification of a case from one DRG to another or

in total payment denial. In addition, if PRO reviews indicate a pattern of prohibited actions, the

Inspector General can terminate the Medicare

provider agreement with the responsible hospital, thus prohibiting any Medicare payments to

the hospital (215).

Many questions have been raised about the adequacy of the PRO review process in monitoring

quality of care (156). Some observers say that

PROS have focused more on cost-containment objectives, such as limiting unnecessary admissions

and medical and surgical procedures, than on

maintaining quality of care (114,125,202). This focus is changing, however, in response to public,

congressional, and administration concern about

quality of care.

A variety of other measures to ensure quality

of care and access to care have been implemented

or are being studied, In response to complaints

that some patients were being discharged too

soon or told that Medicare would not cover their

hospitalization, DHHS mailed a notice to each

Medicare beneficiary explaining Medicare discharge regulations and how to appeal a premature discharge (214). In addition, ProPAC and

other agencies are studying methods of improving

the case-mix formulas on which DRGs are based

in order to reduce financial incentives for hospitals to deny or limit care for “DRG losers. ” Under the current system, patients in the same DRG

vary greatly in terms of severity of illness, resource use, and the cost of their care. Yet the hospital receives the same payment for all patients

in the same group. Addition of a severity of illness measure to the DRG system has been proposed (28,82,176) and is being studied by ProPAC.

DHHS recently proposed dropping age as a patient classification variable in PPS because age is

not a good predictor of resource use once patient

comorbidities and complications are taken into

account (183).

None of the preceding discussion addresses the

impact of PPS on life-sustaining technologies

directly. Clearly the system is not intended to reduce access to or the quality of such treatments.

Available evidence as to its impact is discussed

in other chapters.

Analysis of the impact of PPS in general or on

specific technologies is complicated by the fact

that PPS is only one of the factors changing the

health care system. These factors include the supply of physicians, enrollment in HMOs and other health care delivery systems that limit hospital

use, the emphasis on price competition in medical care in general, and changes in coverage and

reimbursement policies in other public programs

that pay for medical care. Separating the impact

of PPS from the effects of these other factors is

difficult, if not impossible, at present (84,86,202).

Cost-Containment Measures in Public

Programs That Pay for Nursing Home

and Home Health Care

Earlier discharge from hospitals of sicker patients has increased the demand for post-hospital

nursing home and home health care (121,144,

156,167,194,195,215). Yet cost-obtainment measures in the public programs that pay for these

services may be limiting access to them, at least

in some parts of the country.

As a result of very restrictive eligibility and coverage policies, Medicare pays for only about 2 percent of all nursing home expenses in this country.

Recently, there have been reports of increased

denials of Medicare reimbursement for nursing

home care due to tighter interpretation of existing regulations by some Medicare intermediaries

(143,145).

Prior to PPS, patients who could not be placed

in nursing homes remained in hospitals, paid for

under the Administrative Days Program. PPS cre-
76 . Life-Sustaining Technologies and the Elderly

ates strong financial incentives for discharging

such patients from hospitals now.

A 1986 survey by the General Accounting Office found that 97 percent of hospital discharge

planners reported having problems placing Medicare patients in skilled nursing facilities. More

than half of those surveyed reported that the percentage of patients waiting in the hospital for

placement in post-hospital care was greater in

1985 than in 1982 (195).

Medicaid pays for about 45 percent of all nursing home care, but because Medicaid patients

must contribute their own resources toward the

cost of their care, Medicaid actually covers a

much higher proportion of nursing home residents–65 to 75 percent nationally (220) and 85

to 90 percent in some States (64). Thus Medicaid

policies have a strong impact on access to nursing home care.

In recent years, most States have instituted programs to limit Medicaid nursing home expenditures. These include preadmission screening

programs, limitations on reimbursement per case,

and certificate-of-need programs that restrict the

supply of nursing home beds. As a result of differences between States in these cost-containment

measures and other factors not discussed here,

access to nursing home care for Medicaid patients

varies greatly among States. Nursing home bed

supply, that affects access for all patients, varies

greatly, from a high of 94 beds per 1,000 elderly

persons in Wisconsin to a low of 22 beds per

1,000 elderly persons in Florida (190).

Medicare-covered home health care is limited

to patients who are confined to their homes and

are in need of skilled nursing care or physical or

speech therapy for acute conditions. Long-term

home health care needed to maintain patient functioning is not covered. Effective July 1985, new

Medicare regulations, intended to decrease expenditures, have been put into effect. National

and State surveys and anecdotal evidence indicate a recent increase in denials of home health

care claims by Medicare (143,196,208). In 1987,

14 Congressmen, 3 home health care agencies,

17 Medicare beneficiaries, and the National Association of Home Care filed suit in the U.S. District

Court against DHHS for “irrational and unexplained coverage determinations which fail to take

into account and consideration individual patient

needs, the attending physician’s opinion, and community medical practice” (182).

WHY FOCUS ON THE ELDERLY?

Concern about the use of life-sustaining technologies for elderly people arises in part from

awareness of the increasing size of the elderly

population and the possibility that many elderly

people may be candidates for life-sustaining treatments. This section discusses the growth of the

elderly population and patterns of disease and

mortality that make many elderly people candidates for life-sustaining treatments. In addition,

some reasons to suspect that decisions about the

use of life-sustaining treatments and the outcome

of treatment may differ for elderly and younger

people are discussed.

Growth of the Older Population

The number of elderly people in this country

has increased dramatically in this century and will

continue to increase well into the next century,

as illustrated in table 2-5. In 1900, there were 3

million people over 65. Now there are about 29

million. By 2010, there will be about 39 million,

The elderly population is growing at a faster rate

than younger age groups. Thus the percentage

of elderly people in the population has also increased—from 4 percent in 1900 to 11 percent

now—and is projected to reach 14 percent by 2010

and 22 percent by 2050 (209).

Among those over 65, the older groups (age 75

to 84 and 85+) are growing at a faster rate than

the younger group (age 65 to 74). The group age

75 to 84 is expected to increase from about 7.7

million people now (3 percent of the population)

to 12 million in 2010 (4 percent of the population)

and 21 million in 2050 (almost 7 percent of the

population). The age group 85 +, which is the

fastest growing age group in the population, is
Ch. 2—The Context of the Report . 77

Table 2-5.—Growth of the Older Population: 1900 to 2050 (numbers in thousands)

Total

population 65 to 74 years 75 to 84 years 85 years and over 65 years and over

Year all ages Number Percent Number Percent Number Percent Number Percent

1900 76,303

1910 91,972

1920 105,711

1930 122,775

1940 131,669

1950 150,697

1960 179.323

1970 203,302

1980 226,505

1990 249,731

2000 267,990

2010 283,141

2020 296,339

2030 304,330

2040 307,952

2050 308,856

2,189

2,793

3,464

4,721

6,375

8,415

10,997

12,447

15,578

18,054

17,693

20,279

29,769

34,416

29,168

30,022

29

30

33

38

48

5.6

6 1

6 1

6 9

7 2

6 6

7 2

10,0

11,3

9.5

9.7

772

989

1,259

1,641

2,278

3,278

4,633

6,124

7,727

10,284

12,207

12,172

14,280

21,128

24,529

20,976

10

11

1 2

1 3

1 7

2.2

2 6

30

34

41

46

43

4 8

6.9

8.0

68

123

167

210

272

365

577

929

1,409

2,240

3,461

5,136

6,818

7,337

8801

12,946

16,063

02

02

02

02

03

04

0 5

07

10

14

19

24

25

29

4,2

52

3,084 40

3,950 43

4,933 47

6,634 54

9,019 68

12,270 81

16,560 92

19,980 98

25,544 11.3

31,799 127

35,036 13 1

39,269 139

51,386 173

64,345 21 1

66,643 216

67,061 21 7

SOURCE U S Department of Commerce Bureau of the Census Amencd m Transmon An Aging .%wely Series P23 No $28 ,Washngton DC U S

Government Prlnt!ng Office September 1983)

projected to increase from about 2 million now

(1 percent of the population) to almost 7 million

in 2010 and 16 million in 2050 (5 percent of the

population) (209).

Life expectancy at birth has increased dramatically from 49 years in 1900 to 74 years in 1981

(209). Most of this gain has been due to increased

survival past the high risk period of infancy and

early childhood. In 1900, for example, only twofifths of all babies born alive could expect to live

to age 65, Today, more than three-fourths of all

babies born alive are expected to reach age 65

(163).

Advances in life expectancy after age 65 have

been minimal by comparison. A person who

reached 65 at the turn of the century could expect to live another 12 years. Today a 65 yearold can expect to live another 17 years. Of the

total gain in life expectancy of 5 years, one-half

was acheived between 1900 and 1960, and the

other half between 1960 and 1983. Hence it appears that life expectancy at older ages has been

increasing at a faster rate in the past two decades

than previously.

Patterns of Disease and Mortality

Most older people do not suffer from serious

illness and are able to function quite well, but the

likelihood that persons will suffer from chronic

and acute illnesses increases with age, especially

after age 75 or 85. The older population has the

highest prevalence of chronic conditions such as

heart disease, chronic obstructive pulmonary disease, atherosclerosis (deposits of fatty substances

within the arteries, or “hardening of the arteries”), and hypertension (persistently high arterial

blood pressure). In turn, these chronic conditions

increase the risk of acute medical episodes including heart attacks, respiratory arrests, strokes, and

pneumonia (216).

Trends in mortality among all age groups since

the turn of the century have shown substantial

declines in deaths due to infectious diseases, and

in age-specific death rates from heart disease,

some types of cancer (malignant neoplasm), and

cerebrovascular diseases (strokes). These three

diseases are the major causes of death in the

elderly (see table 2-6).

In general death occurs at older ages than in

the past. In 1984, 70 percent of all deaths occurred

in the age group over 65; 24 percent among people age 65 to 74; 27 percent among those age 75

to 84; and 19 percent among people over 85. Since

elderly people are at greater risk than younger

people of chronic and acute illnesses and death,

they are also more likely candidates for life-sustaining treatments.
78 ● Life-Sustaining Technologies and the Elderly

Table 2-6.—Top Ten Causes of Death, Population Aged 65 and Over,

United States: 1980

Number p e r Percent of

Rank Cause of death 100,000 65+ all deaths

1 Heart disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2,330 44.4

2 Malignant neoplasms . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1,011 19.2

3 Cerebrovascular diseases . . . . . . . . . . . . . . . . . . . . . . . . 573 10.9

4 Pneumonia and influenza . . . . . . . . . . . . . . . . . . . . . . . . . 178 3.4

5 Chronic obstructive pulmonary diseases . . . . . . . . . . . 171 3.2

6 Atherosclerosis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110 2.1

7 Diabetes mellitus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99 1.9

8 Accidents and trauma . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97 1.8

9 Nephritis and related conditions . . . . . . . . . . . . . . . . . . . 51 1.0

10 Chronic liver disease and cirrhosis. . . . . . . . . . . . . . . 37 0.7

All causes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5,252 100. 0

SOURCE Nallonal Cenler for Health Slallsllcs, Dlvlslon of V!fal Sfatls[lcs V/fa/Slaf/st/cs offhe Urr)fedStafes Vo/ // Morra/f.

fy pubhshed and unpubhshed dat a

Reasons Why Decisions About

Life-Sustaining Treatments or

Their Outcome May Differ for

Elderly People

In addition to the size of the elderly population

and the likelihood that large numbers of elderly

people may be candidates for these treatments,

concern about life-sustaining treatments for them

arises from the expectation that use of these treatments and their outcome may differ for elderly

and younger people. Reasons for this expectation,

that could be considered some of the hypotheses for this OTA assessment, are discussed briefly below. They are hypotheses, not conclusions,

and findings relet’ ant to them are presented in

later chapters.

Since, in general, elderly people have

a higher prevalence of chronic disease

and decreased physiological reserve,

there is reason to expect that life sustaining treatments will have poorer outcome

for them than for younger people.

The greater prevalence of chronic disease

among elderly people means that elderly people

with life-threatening conditions are likely to have

one or more coexisting chronic conditions that

tend to complicate their treatment and lead to

poorer outcome. In addition, longitudinal investigations such as the Framingham Heart Study,

the Duke Longitudinal Studies of Normal Aging,

and the Baltimore Longitudinal Study on Aging

have established that chronological age generally

is accompanied by progressive reductions in

“physiological reserve, ” i.e., the functioning and

efficiency of major organs.

Decreased physiological reserve is different

from disease and may not affect an individual’s

normal functioning. However, it reduces the

body’s ability to cope with physiological stress,

such as acute illness or trauma and, therefore,

complicates the treatment of disease and places

the individual at greater risk of poor outcome

(165). Some changes in average physiological functioning with age are illustrated in figure 2-2.

The rate of reduction in physiological reserve

associated with aging varies greatly from one individual to another. In fact, although the physiological status of the older population is certainly

poorer as a whole, variation in physiological functioning among individual older persons is greater than in any other age group.

Since elderly people have lived many

years and at best have only a limited

number of years left, and since they have

higher prevalence of chronic conditions

and may have lost family and friends,

there is reason to expect that their qualit y of life may be poor and that they may

be less willing to accept the burdens

of life-sustaining treatment, and more

ready to die than younger people.

This hypothesis is seldom stated in full but often

appears to underlie some people’s attitudes about

life-sustaining treatment and elderly people. The

elements of the hypothesis—that, on average,
Ch. 2–The Context of the Report . 79

Figure 2-2.—Changes in Physiological Functioning, by Age

o 1 1 I I I

30 40 50 60 70 80 90

Age (years)

SOURCE: N W Shock, “The Physiological Basis of Aging,” Frontiers in Medicine: /rnp//cetlorrs for the Future, R.J. Morin and R.J. Bing (eds.) (New York, NY: Human

Sctences Press, 1985).

elderly people have fewer years left to live than

younger people, that they have higher prevalence

of chronic conditions, and that many of their relatives and friends may have died—are demonstrably true. The conclusion, however, is not obvious,

and OTA is not aware of any data to support it.

Anecdotal evidence is contradictory. One observer

has commented that older people are more resigned to death than their caregivers (186). others

have commented, however, that elderly people

may be more willing to accept a relatively poor

quality of life than younger people (77). Generalizations in this area are fraught with difficulties. Nevertheless, the chapters present what is

known about differences between elderly and

younger people in their attitudes toward maintaining their own lives with the technologies OTA

studied.

Because people believe that life-sustaining treatments will have poorer outcome in elderly than younger people,

that elderly people have poorer quality

of life, and that they maybe more ready

to die than younger people, and because

of a pervasive ageism in our society,

there is reason to expect that life sustaining treatments may be provided less

often for elderly than younger people

and that, as a result, some elderly people who might benefit from treatment

do not receive it.

Negative stereotypes about aging and elderly

people among health care providers and the public in general have been well documented (26)39,

120)129,230). When compounded by doubts
80 ● Life-Sustaining Technologies and the Elderly

about the outcome of treatment and doubts about

whether elderly people want to live longer, these

negative attitudes could result in failure to provide treatment. The report discusses whether age

in itself is a factor in decisions about the use of

the technologies OTA studied,

Since cognitive impairment is more

prevalent in elderly than younger people, there is reason to suspect that decisionmaking may be more difficult for

and with elderly people. Cognitive impairment may also affect the decisions

that are made and limit the treatments

that can be used safely for such patients.

Current estimates indicate that about 1 percent

of those age 65 to 74, about 7 percent of those

age 75 to 84, and about 25 percent of those over

age 85 have dementia (204). In addition, because

of the sensitivity of the aging brain to any changes

in physical condition, almost all diseases and many

medications can reduce cognitive functioning in

elderly people (179). As a result, there is reason

to expect that more elderly than younger people

who are candidates for life-sustaining treatments

are cognitively impaired.

Cognitive impairment limits the capacity of the

individual to participate in treatment decisions

and necessitates involvement of a surrogate decisionmaker in many cases. Families, physicians,

and other caregivers may conclude that persons

with severe cognitive impairment have very poor

quality of life, and they may decide on this basis

that some life-sustaining treatments should be

withheld or withdrawn. Finally, treatments that

require the cooperation of the patient may not

be usable for patients who are cognitively impaired. The report discusses what is known about

the relationship between a patient cognitive status and the life-sustaining technologies OTA

studied.

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H.E. Pies, and A.E. Doudera (eds. ) (Ann Arbor, NII:

Health Administration Press, 1985),

IVetle, T., and Letrkoff, S., “Death [is a (:are Option: \\’ithholding Treatment From Elderly Patients, ” presented at the 1984 meetings of the

Gerontological SocietJ~ of Ameri(’a, %in Antoniol

TX, No\~ember 1984.

ttrhite, J .K., ‘(Data t$’atch: Health (;are lnnol’ation

in an Era of (;ost Contain merit,” Hea/th ,-lfli~jrs

4(2): 105-118, 1985.
88 ● Life-Sustaining Technologies and the Elderly

Winkenwerder, W., “Ethical Dilemmas for House Association 254(24):3454-3457, 1985.

Staff Physicians: The Care of Critically 111 and Dy- 233. Wohl, S., “Medicare Dogs, ’’Journal of the Ameriing Patients, ” Journal of the American Medical cal Medical Association 257(13):1801, 1987.
chapter 3

Legal Issues
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ., . . . 91

Legal Concepts That Empower Individual Patients . . . . . . . . . . . . . . . . . . . . . . . . . 92

The Common Law Right of Self-Determination . . . . . . . . . . . . . . . . . . . . . , . . . . . 92

The Constitutional Right of Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92

Informed Consent to Treatment. , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93

Development of the Doctrine of Informed Consent . . . . . . . . . . . . . . . . . . . . . . . 93

Standards for Informed Consent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94

Exceptions to the Informed Consent Requirement . . . . . . . . . . . . . . . . . . . . . . . . 95

Practical Problems uninformed Consent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95

The Right o Refuse Treatment. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98

Societal Interests That May Limit the Patient’s Right To Refuse Life-Sustaining

Treatment. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98

Practical Problems in Refusing Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99

Legal Liability for Failure To Recognize the Patient’s Right To Refuse

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...............102

Competency and Decisionmaking Capacity . . . . . . . . . . . . . . . . . .

Assessing Decisionmaking Capacity in Elderly Patients . . . . . .

Assessment of Decisionmaking Capacity by Courts . . . . . . . . .

Substantive Criteria for Determining Decisionmaking Capacity

Legal Aspects of Medical Decisionmaking for Decisionally Capab

Patients .. .. .. ... ., ...... . . . . . . . . . . . . . . . . . . . . . . .

. . . . . . . . . . . . . 102

. . . . . . . . . . . . . 103

. . . . . . . . . . . . . 105

. . . . . . . . . . . ., 106

e Elderly

. . . . . . . . . . . . . 107

Legal Aspects of Medical Decisionmaking for Decisionally Incapable Elderly

Patients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ., . .........109

Designating a Surrogate Decisionmaker . . . . . . . . . . . . . . . . . . . . . ............109

The Substantive Basis for the Surrogate Decision. , . . . . . . . . . . . . . . . . .......117

Judicial Review of Surrogate Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . ., ....120

Living Wills . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ., .. ...121

Nonjudicial Consultative Sources . . . . . . . . . . . . . . . . . . . . ., , . ................127

Institutional Ethics Committees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......,127

Ombudsmen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........129

Professional Societies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...129

Institutional Policies for Decisionmaking . . . . . . . . . . . . . . . . . . . . , . ..........130

Criminal Liability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ., ..130

Findings and Implications . . . , ., . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ., .132

Chapter 3 References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............,135

Box

Box Page

3-A. The Elizabeth Bouvia Case. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ....100

Figures

Figure No. Page

3-1. Californians Form for Creating a Durable Power of Attorney for Health

Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........ . .............111

3-2. Sample of a General Form for Creating a Durable Power of Attorney for

Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .................,...,.115

3-3. Utah’s Form for Creating a Living Will . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .123
Chapter 3

Legal Issues*

INTRODUCTION

Laws generally define or reflect what society

considers to be the limits of morally appropriate

and acceptable behavior. In a complex and technologically advanced society, there are continuous challenges to the foundations that underlie

the law. When moral norms and standards of behavior are uncertain, or in conflict, the case law

and statutes in different jurisdictions may reflect

this diversity of opinion. When consensus has been

reached, the case law and statutes of most jurisdictions tend to be similar.

Existing case law and statutes that address medical decisionmaking reflect both consensus and

divergence. Societal consensus is reflected in the

generally accepted legal principle that adult patients who can understand and appreciate the

likely consequences of various treatment options

(including nontreatment) are entitled to make their

own treatment decisions. Adults are legally pre-

● This chapter is based on several OTA contract reports: Lisa J.

Raines, J.D. “Life-Sustaining Technologies for Elderly People: The

Legal Issues” (January 1987); Connie Zuckerman, J. D., “Life-Sustaining Technology and the Elderly: The Legal Issues” (June 1986);

and George J. Areas, J.D., M. P.H., and Leonard H Glantz, J.D., “Withholding and Withdrawing of Life-Sustaining Treatment for Elderly

Incompetent Patients: A Review of Court Decisions and Legislative

Approaches” (December 1985).

sumed to be capable of consent or refusal unless

a court declares otherwise.

Although these patient-empowering principles

stand firmly etched in our case law and statutes,

there is tremendous uncertainty and anxiety among

health care providers about what their legal obligations to patients are and what their permissible range of action is. One reason for this uncertainty is that some patients are not capable of

making treatment decisions for themselves due

to temporary or permanent mental impairment.

Case law and statutes in different jurisdictions give

different answers to the questions of who is to

make decisions, and on what basis, for these patients. A second reason for uncertainty is that technological progress has outpaced the legal process, thus raising questions about how existing case

law and statutes apply to new technologies.

Yet another reason for uncertainty is that many

health care providers are not aware of or do not

fully understand the legal principles, case law, and

statutes relevant to medical decisionmaking. This

situation is not surprising. Although the law concerning patient’s rights has evolved over a long

period of time, the first court case to draw na97

63-216 0 - 87 - 3 : QL 3
92 . Life-Sustaining Technologies and the Elderly

tional attention to the legal issues involved in withholding or withdrawing life-sustaining treatment

from a comatose or terminally ill patient was

decided in 1976–little more than a decade ago.

Since then, courts in different States have handed

down rulings that are contradictory in cases that

seem similar from the point of view of health care

providers. Many of the contradictions have been

resolved as lower court rulings have been appealed

and sometimes overturned by higher courts, and

the areas of agreement and consistency among

different States are growing. Nevertheless, it is

difficult for busy health care providers to keep

up with changing case law and statutes. It is also

difficult for nonlawyers—and even for lawyers

at times—to understand the implications of existing case law and statutes for individual treatment

decisions (62).

This chapter describes the legal principles, case

law, and statutes related to decisions about the

use of life-sustaining medical technologies—particularly as they apply to elderly people. It describes the development of the law and its present

state, discusses areas of controversy and criticism,

and considers the implications of relevant legal

principles for patients and caregivers. The chapter does not discuss statutes or government regulations that pertain to reimbursement for medical care or licensing and certification of health

care providers and facilities—both of which are

discussed in other chapters of the report.

LEGAL CONCEPTS THAT EMPOWER INDIVIDUAL PATIENTS

The Common Law Right of

Self-Determination

American case law has long recognized an individual’s right to make certain personal choices.

As early as 1891, in Union Pacific Railway Co. v.

Botsford, the U.S. Supreme Court endorsed the

fundamental right of self determination:

No right is held more sacred or is more carefully guarded by the common law than the right

of every individual to the possession and control

of his own person, free from all restraints or interference by others, unless by clear and unquestionable authority of law (110).

The right of self determination was first clearly

applied to medical decisionmaking in a 1914 opinion by Justice Cardozo in the New York case

Schloendorff v. New York Hospital:

Every human being of adult years and sound

mind has the right to determine what shall be

done with his own body (101).

A strong and explicit restatement of this right appeared in the 1960 Kansas case Natanson v. Kline:

Anglo-American law starts with the premise of

thoroughgoing self determination. It follows that

each man is considered to be master of his own

body and he may, if he be of sound mind, expressly

prohibit the performance of life-saving surgery,

or other medical treatment (85).

The individual’s right of self-determination is

now firmly rooted in American case law and statutory law. It is one of the basic concepts underlying a patient’s right to be informed about and

to consent to or refuse proposed medical treatments.

The Constitutional Right of Privacy

The concept of a constitutional right of personal

privacy was first articulated in an 1890 Harvard

Law Review article in which Louis Brandeis and

Samuel Warren discussed the importance of the

“principle of . . . an inviolate personality” (1 14).

Later, while serving on the U.S. Supreme Court,

Justice Brandeis further championed this notion,

when he wrote in a dissenting opinion that has

since become the prevailing view:

The makers of our Constitution recognized the

significance of man’s spiritual nature, of his feelings, and of his intellect. They knew that only part

of the pain, pleasure, and satisfactions of life are

to be found in material things. They sought to protect Americans in their beliefs, their thoughts,

their emotions and their sensations. They conferred, as against the government, the right to be

let alone–the most comprehensive of rights and

the right most valued by civilized men (88).

The “right to be let alone, ” also called the “right

of privacy, ” is not explicitly articulated in any of
Ch. 3—Legal Issues ● 9 3

the provisions of the Constitution. It is generally

considered to emanate from the penumbra of several of the guarantees of the Bill of Rights, including: the First Amendment right of association, the

Fourth Amendment right to be secure against unreasonable searches and seizures, the Fifth Amendment right against self-incrimination, the Ninth

Amendment protection of rights not explicitly enumerated in the Constitution, and the Fourteenth

Amendment guarantees of liberty.

In recent years, the U.S. Supreme Court has held

that the right of privacy protects individuals from

governmental intrusion in fundamental and personal medical decisions. This right has been the

constitutional basis used by the Court to protect

private individual decisions ranging from the use

of contraceptives, in Griswold v. Connecticut, 1965

(40); to the termination of pregnancy through

abortion, in Roe v.. Wade, 1973 (96); to the refusal

of psychotropic medications by those confined in

mental institutions, in Mills v. Rogers, 1982 (82).

The Supreme Court has not addressed the question of whether the constitutional right of privacy

includes a right to refuse life-sustaining medical

treatment. Several State courts have held that it

does, however. In 1976, the New Jersey Supreme

Court held in In re Quinlan that the right of privacy

“is broad enough to encompass a patient’s decision to decline medical treatment under certain

circumstances, in much the same way as it is broad

enough to encompass a woman’s decision to terminate pregnancy under certain conditions” (52).

Eighteen months later, in Superintendent of Belchertown State School v Saikwicz (109), the Massachusetts Supreme Judicial Court concurred that

the right of privacy includes a right to refuse lifesustaining medical treatment. Since the Saikewicz

case, several other courts have also permitted patients to refuse life-sustaining treatment as an exercise of their right to privacy (see, for example,

In re Colyer, 1983 [45]).

Neither the constitutional right of privacy nor

the common law right of self-determination is

absolute. Generally, as discussed later in this chapter, several societal interests have been found to

potentially override these rights. It is rare that

these state interests are so compelling as to trump

the patient decision, however, and in most cases,

the right of privacy and the right of self-determination support the ability of patients to make

personal medical decisions (118).

INFORMED CONSENT TO TREATMENT

Development of the Doctrine of

Informed Consent

Early American common law (and medieval English common law from which our legal traditions

are derived) considered any harmful or offensive

nonconsensual touching a “battery” for which

monetary damages could be sought in a court of

law. Physicians’ efforts to heal patients through

physical contact such as surgery were considered

“touching.” A physician who did not obtain a patient’s consent prior to the touching could be held

liable for battery, even if the physician had performed an appropriate procedure and had done

so carefully (118).

Although a physician was not permitted to obtain a patient’s consent through deceptive methods, he or she was not required to give the patient more than a superficial description of the

impending procedure and its likely consequences.

The law at first focused narrowly on the fact of

a nonconsensual “touching” or intervention, rather

than on whether the patient truly understood

what was being proposed. Even in the famous

1914 Scholondorff case (101), in which Justice

Cardozo extolled the right of adults to determine

what is done with their own bodies, the court was

not concerned about the information that individuals needed to exercise this right (118).

The common law right of self-determination

means little, however, if’ health care providers have

no obligation to disclose information necessary

for patients to thoughtfully exercise the right. The

patient’s need for information is especially acute

in the case of new treatments and procedures that

not only present more options and benefits but

also are more complex and may be associated with

greater risk.
94 • Life-Sustaining Technologies and the Elderly

In the late 1950s, the physician’s legal duty to

obtain a patient’s consent was broadened to include an obligation to disclose relevant information so that a patient could make an intelligent

decision as to whether to give or withhold consent to treatment. If the doctor obtained a patient

consent without first adequately explaining the

procedure, he or she could avoid liability for battery (since the “touching” was technically consensual) but still be liable for medical malpractice

(1 18). (Medical malpractice is a form of negligence

defined in the law as conduct that falls below the

acceptable professional standards and causes injury to the patient.) If a patient would have withheld consent had he or she known all of the relevant facts, then any injury resulting from the

treatment could result in’ a judgment of malpractice.

Standards for Informed Consent

The first case to use the phrase “informed consent” publicly was the 1957 California case Salgo

v. Stanford University Board of Trustees (99), but

it was the landmark 1960 Kansas case Natanson

v. Kline (85) that fully articulated the notion of

a standard of care with regard to disclosure of

information. The Kansas court, concerned about

imposing too onerous a burden on physicians,

limited the duty of physicians to inform to “disclosures which a reasonable medical practitioner

would make under the same or similar conditions. ”

This standard, known as the “professional practice” or “reasonable physician” standard, has been

adopted by the majority of States. Under this

standard, the extent of appropriate disclosure is

viewed as a medical question requiring a physician’s expertise to answer. In malpractice litigation, when the professional practice standard is

applied, the plaintiff must prove the prevailing

standards of medical practice in the community

by the testimony of a medical expert. (In Colorado,

however, once the plaintiff shows a failure to disclose, it is the physician who must prove that his

or her conduct conforms to community standards

(see Hamilton v. Hare@ [411).

The professional practice or reasonable physician standard has been criticized for perpetuating the custom of many physicians of disclosing

very little information before seeking a patient ‘S

consent. The ancient Hippocratic texts told physicians to “perform (duties) calmly, concealing most

things from the patient while you are attending

to him” (59). Some people believe that this view

still infuses medical education and practice (63,64).

Three cases decided in 1972, Canterbur y v.

Spence (24); Cobbs v. Grant, (26); and Wilkinson

v. Vesey (115), rejected the professional practice

or reasonable physician standard and adopted a

“reasonable patient” standard. In Canterbury v.

Spence, the U.S. Court of Appeals for the District

of Columbia declared:

To bind the disclosure obligation to medical

usage is to arrogate the decision of revelation to

the physician alone. Respect for the patient’s right

of self determination on particular therapy demands a standard set by law for physicians rather

than one which physicians may or may not impose upon themselves (24).

The court outlined a “reasonable patient” (or

“materiality”) standard requiring the physician to

disclose all information that would be considered

by a reasonable patient as material to the patient’s

decision. Materiality was to be judged not from

the subjective perspective of a specific patient but

rather from the objective perspective of “a reasonable person, in what the physician knows or

should know to be the patient’s position” (24).

In Cobbs v. Grant (26), the California Supreme

Court also adopted the reasonable patient standard, noting that the effect of the professional practice rule had been to give physicians absolute discretion in making (or not making) disclosures. In

Wilkinson v. Vesey (115), the Rhode Island Supreme Court held that “the patient’s right to make

up his mind should not be delegated to a local medical group, many of whom have no idea as to his

informational needs. ”

Some commentators consider the reasonable patient standard to be more progressive than the

professional practice standard (37)77)) but the reasonable patient standard remains the minority

rule. The principal difficulty with this standard

is that it provides little guidance to the physician.

What a reasonable patient would need to know

is not always easy to determine, and physicians

who have made judgments on this basis have later

found that their decisions do not always coincide
Ch. 3—Legal Issues ● 9 5

with a jury’s evaluation. A major reason for this

variance is the 20/20 hindsight of juries. A risk

of serious injury is likely to appear far more material after the patient has suffered the injury than

before. In 1980, in Woolley V. Henderson (117),

a Maine court explicitly rejected the reasonable

patient approach for this reason. Other courts

have rejected the reasonable patient standard on

grounds that medical expertise is required to answer questions about the adequacy of disclosure

(see, for example, Bly v. Rhoads, 1976 [15]). Since

1972, the trend among courts that have considered the issue has been to adopt the professional

practice standard (77,90).

Under either the reasonable patient or professional practice standard, it is generally agreed that

in order to fulfill the obligation to inform, the physician must at least disclose the diagnosis, the prognosis, the proposed treatment, alternate treatments, the risks and benefits of all options, and

the consequences of not intervening at all. The

physician should also give the patient an opportunity to ask questions. Generally, the level of disclosure required to avoid malpractice liability is

higher in those States adopting the reasonable patient standard than those adopting the professional

practice standard.

Exceptions to the Informed Consent

Requirement

Exceptions to the informed consent requirement

have been recognized for four situations:

1. emergencies when the delay in treatment necessary to obtain a patient consent would result in significant harm to the patient,

2. unanticipated conditions that arise during

3

4

surgery ‘when obtaining consent would expose the patient to the risks of a second surgical procedure,

“therapeutic privilege” situations when a physician reasonably believes that the patient

mental or physical well-being would be seriously threatened if he or she learned the information, and

wavier situations when the patient has clearly

expressed a desire not to receive the information.

In the context of this report, it should be noted

that exceptions to the consent requirement are

frequently required in cases of unanticipated

cardiac or respiratory arrest (emergencies). In

addition, some people believe that elderly patients

are more likely than younger patients to waive

a full explanation of their diagnosis, prognosis,

treatment options, and potential risks of treatment, This belief is based on evidence that elderly

people are somewhat more likely than younger

people to be satisfied with the amount of information they receive (90) and that, as a group, they

generally have more deferential attitudes toward

health care professionals and are more respectful of authority than younger people (65,87).

In practice, waivers of the informed consent

requirement are often based on a tacit understanding between the patient and the health care provider rather than on the explicitly stated preference of the patient (61). To ensure that health care

providers do not simply assume that elderly or

other patients want to waive their right to informed consent, many commentators have suggested that such waivers should be explicitly stated

by the patient and should be allowed only in situations where the provider has made clear his or

her willingness to discuss the proposed treatment

with the patient (6,61,80,90).

Practical Problems in

Informed Consent

Disclosing and explaining information so that

a patient’s consent or refusal is truly informed

is a process that requires time, patience, and an

ability to communicate on the part of the physician or other health care provider. The fast pace

and pressures of modern medical practice, particularly in hospitals, may leave health care providers with little time or inclination to explain complex medical technologies clearly to their patients

or to discuss the risks and benefits of alternate

treatments. Moreover, some commentators have

noted that the educational experience in most

medical schools and the process of professional

socialization during internship and residency frequently do not prepare physicians to communicate effectively with patients about their illness,

its treatment, and the associated risks, benefits,

and alternatives (63,64). These problems are ex-
96 • Life-sustaining Technologies and the Elderly

acerbated when health care providers assume,

sometimes without evidence, that a patient is not

capable of understanding the explanation, or

when a patient has a hearing or speech impairment that interferes with communication. Both

situations arise more frequently with elderly patients than younger ones.

One study of medical decisionmaking in a hospital and an outpatient clinic (73) concluded that

informed consent as it is envisioned in the law—a

process in which a physician provides a patient

with information and the patient then brings his

or her personal preferences and values to bear

on the information, makes a decision, and instructs

the physician as to how to proceed—is largely absent from clinical practice. That study showed that

patients were seldom given information about the

risks and benefits of a proposed treatment before

a decision about the treatment was made, They

were almost never given information about alternate treatments. Some chronically ill patients—

notably those on renal dialysis—were well informed about all aspects of their conditions and

treatment, and outpatients were better informed

than inpatients. However, most patients acquiesced passively in the physicians’ treatment decisions without being informed as required by informed consent law.

According to the researchers, the divergence

between informed consent as envisioned by the

law and the decisionmaking practices observed

in this study arises not only from the behavior

of physicians but also from the apparent wishes,

expectations, and behavior of patients:

Our findings suggest that even if doctors were

acting in the way anticipated by law, decisionmak -

ing would bear little resemblance to the legal

model . . . . We have been struck by the fact that

overwhelmingly, even when patients are given information about their treatment and treated as

if they had decisional authority, they act in a passive manner. When asked, most patients seemed

happy with the amount of information they were

getting, and even when they wanted more, it was

rarely in order to make decisions about treatment.

Even when they said they wanted information to

make treatment decisions, they often acted as if

they would rather have the doctor decide. For the

most part, patients were not very interested in

much of what was told to them. Even when they

were interested in the information, they still often

acted as if the final decision ought to be left to

the doctor (73).

The researchers in this study suggest that the

model of medical decisionmaking that underlies

the doctrine of informed consent—i.e., that medical decisionmaking involves one or more discrete

decision points at which the treatment options are

clear and one can be selected—is invalid in many

clinical situations. In actuality, they say:

Much of the decisionmaking that doctors engage

in takes place at a preconscious level , . . Quite

early in the process the physician reaches a diagnosis and a decision about the preferable treatment. Seldom does the doctor see a series of alternative possibilities. Rather, for each problem there

typically exists a medically preferable treatment,

not a series of alternatives from which a patient

may choose. It does not seem to the doctor to be

a decisionmaking process but simply a question

of persuading the patient to accept proper treatment. The decision has been made—by the doctor (73).

The model of medical decisionmaking that underlies the informed consent doctrine may be

more relevant for some types of treatments, some

treatment settings, and some patient populations

than others. The model is most applicable for patients who have a single medical problem for

which there are several treatment options (37,73).

In contrast, for some critically ill patients receiving multiple treatments in an intensive care unit

(ICU), the medical decisionmaking process may

be virtually continuous because of the patient’s

unstable condition and the complex interaction

of multiple illnesses and treatments, In such a situation, the model of medical decisionmaking that

requires the patient to be informed and to consent to each decision may be almost impossible

to apply. Similar situations may arise with some

severely debilitated patients who require a series

of decisions, each of which can have life -and death

implications. Both types of decisionmaking situations arise with the medical treatments, treatment

settings, and patient populations discussed in this

report.

One practical question about informed consent

law is the validity and necessity of written con-
sent forms. Many observers point out that the

goals of informed consent law are not fulfilled

when a patient simply signs a preprinted form

without prior communication between the patient

and the health care provider about the risks and

benefits of the proposed treatment, about alternate treatments, and about the patient wishes.

Yet research and anecdotal evidence indicate that

many health care providers act as if getting the

patient signature on a consent form constitutes

informed consent (37,61,63,73,90).

Legal experts point out that except when consent is needed for patient participation in a research protocol, a written consent form is not legally required (6,61). Moreover, a written consent

form may not even constitute legal proof that informed consent has occurred (14,43,61 ,105). According to two observers, patients who have

signed such a form may claim that they didn’t

really give informed consent:

(Patients may claim), “I was nervous”; “I didn’t

understand because the doctor used big, technical words”; ‘I was in such pain that I would do

anything to get rid of it”; “They had already given

me a shot so I wasn ‘t clearheaded”; ‘’The nurse

handed me this piece of paper at the last minute

and I signed it without even looking at it .“ Such

claims are likely to carry extra weight in the mind

of a jury that is contemplating the plight of an

injured older patient (61).

Although signed consent forms may not constitute proof that informed consent was obtained,

they generally create a legal presumption that it

was, and shift the burden of responsibility to the

patient to prove that it was not (61).

Despite questions about the legal necessity and

validity of written consent forms, most hospitals,

nursing homes, and other health care facilities require such forms, particularly for surgical and

other procedures that are considered invasive. 1

‘\lany’ health care facilities do not require a signed consent form

for treatments that do not iniolte surger> and are not ronsdered

Ini asl~e, for example, nasogastric tube feeding and antibiotic treatnwnt (see vh 8 and ch 9)

Ch. 3—Legal Issues ● 9 7 —

A requirement for a signed consent form does

not guarantee that any meaningful communication has taken place between the patient and the

health care provider and may sometimes delay

the initiation of treatment while the form is signed,

witnessed, and noted in the patient medical record. In cases where the patient is not decisionally

capable, obtaining a signed consent form may require locating a surrogate and having that individual come to the hospital or nursing home to

sign the form. For these reasons, some physicians

who agree in theory that patients or their surrogates should almost always be involved in treatment decisions and who generally discuss such

decisions with patients or their surrogates may

regard the process of obtaining written consent

as burdensome record keeping and may, therefore, resent formal requirements for informed

consent (37).

Recognizing the legitimacy of concerns about

written consent forms does not solve the problem of how to ensure that informed consent takes

place. Some observers have suggested that changes

in medical education and professional socialization during medical internship and residency are

the best solution to the problem (37,63). Others

suggest that legal suits by patients who have been

harmed as a result of medical interventions for

which they did not give true informed consent

are another method for changing medical practice (37). Finally, changes in hospital and nursing

home policies with regard to written v. verbal consent and specific delineation in such policies of

the role of the patient or surrogate in the decisionmaking process might also be helpful.

None of these solutions, however, will address

problems that arise because, as discussed earlier,

the model of medical decisionmaking that underlies the doctrine of informed consent does not

reflect the realities of some clinical situations. Further analysis is needed to identify informed consent procedures that are both valid and meaningful in situations where decisionmaking is virtually

continuous due to the critical and unstable nature of the patient’s condition.
98 Ž Life-Sustaining Technologies and the Elderly

THE RIGHT TO REFUSE TREATMENT

The doctrine of informed consent and the case

law and statutes that underlie it support the patient’s right to refuse treatment (also known as

“withholding consent “). In theory, this right is not

diminished by the potentially fatal consequences

of refusing life-sustaining treatment or by the

opposing views of attending health care professionals. (In practice, as discussed throughout this

report, physicians and other health care professionals are often very reluctant to withhold or

withdraw life-sustaining treatment and sometimes

do not recognize or accept a patient decision to

refuse such treatment.)

To exercise the right to refuse treatment, a patient must possess the requisite mental capacity

to process the disclosed information and to make

a voluntary health care decision. Although most

adult patients are either clearly capable or clearly

incapable of making such a decision, some patients

have questionable or fluctuating decisionmaking

capacity. (See later section “Assessing Decisionmaking Capacity in Elderly Patients.”)

Like consent, refusal of life-sustaining or any

other therapy by a patient should be based on

an informed choice, made in a voluntary manner

(81). The information needed to make an informed

choice has been examined above.

A voluntary choice implies an absence of coercion. Patients and physicians may have different

values and goals in the context of health care decisions. The physician is expected to infuse the

informed consent discussion with all of his or her

professional expertise and experience and to provide advice and opinion accordingly; the physician is not a neutral observer but rather a skilled

advocate of a particular position. It is the patient,

however, who is legally vested with the right to

decide whether to undertake the treatment. If,

after full disclosure by the physician, the patient

weighs the risks and benefits of a proposed procedure against his or her own individual fears,

hopes, and beliefs, and decides to refuse the intervention, then this is a decision that the physician is legally required to accept. In general, however, if a patient decision violates the physician’s

convictions, the physician may withdraw from

treating the patient as long as the physician makes

reasonable efforts to assist the patient in obtaining appropriate continuing care. (See discussion

of the societal interest in protecting the ethical

integrity of the medical profession below. )

Societal Interests That May Limit

the Patient’s Right To Refuse

Life-Sustaining Treatment

Strong as it may be, the patient’s right to refuse

medical treatment is not absolute. The law requires that this right be balanced against the interests of society and, in certain very limited circumstances, give way (77).

Four societal interests have been identified by the

courts as potentially worthy of causing the court

to override a patient’s right to refuse treatment:

1. the preservation of human life,

2. the protection of third parties,

3. the prevention of suicide, and

4. the protection of the ethical integrity of the

medical profession.

The societal interest in the preservation of human life is based on the fundamental religious and

ethical concept of the value of human life in general and the value of each individual’s life. This

societal interest has been raised as a competing

argument in virtually all court cases concerning

refusal of life-sustaining medical treatment.

Although the societal interest in preservation

of human life is related to the well-being of individual patients, unless some other individual is

adversely affected by a patient’s decision, the

balancing process applied by the courts has always come out in favor of the patient’s decision.

The patient objective well-being alone has never

been sufficient legal justification to force unwanted medical treatment on a decisionally capable patient (77,118).

In certain cases, there are cognizable third-party

interests in the patient decision to refuse treatment. Particularly when the patient has minor children who would suffer financially or emotionally

or who would be abandoned because of the patient decision to refuse life-saving or life-sustaining treatment, the state, in its parens patriae role,
Ch. 3–Legal Issues ● 9 9

may feel compelled to override the patient health

care decision. This societal interest is obviously

more relevant to patients who are parents of

young children. Few elderly persons fall into this

category.

The societal interest in prevention of suicide is

based on the value of human life and the corollary that the individual’s life has value even if he

or she does not recognize it. This societal interest

has been raised most strongly in court cases concerning individuals who are decisionally capable

and who wish to refuse life-sustaining treatment.

It has also been considered, however, in some

cases involving patients who are not decisionally

capable (see, for example, In re Quinlan [52]). In

general, the courts that have considered cases of

both kinds have concluded that refusal of lifesustaining medical treatment does not constitute

suicide (5,1 18).

Finally, there is the societal interest in the ethical integrity of the medical profession. Some people argue that the traditional role of health care

providers, i.e., to use appropriate therapies to cure

or ameliorate the effects of disease or injury, could

be seriously affected if patients are allowed to refuse life-sustaining treatments; and that health

care providers may view themselves as instruments of the patient’s death in such circumstances

and thereby he demoralized (17). These concerns

notwithstanding, established case law explicitly

articulates that protecting the ethical integrity of

the medical profession does not demand that patients accept whatever treatment physicians propose, particularly if the treatment would be futile or if the patient holds other values (such as

bodily integrity or privacy) above the preservation of his or her own life.

Whether health care providers and health care

facilities must participate in withholding or withdrawing treatment when such participation violates their own convictions, is a question on which

courts have differed. In the 1986 ruling in Brophhy

v. New England Sinai Hospital, Inc. (21), the Massachusetts Supreme Judicial Court ruled that Mr.

Brophy’s feeding tube could be legally withdrawn

but that the hospital he was in could not he compelled to participate in removing the tube and that

Mr. Brophy could be transferred to another facility for this purpose. In the 1986 New Jersey case

In re Requena (53), in contrast, the judge ruled

that Mrs. Requena had the right to refuse tube

feeding and that the hospital she was in, which

had petitioned the court to have her discharged,

must allow her to stay without being tube fed.

The case of Elizabeth Bouvia (see box 3-A) illustrates the conflict between the patient’s right of

self-determination, right of privacy, and right to

refuse unwanted treatment, on the one hand, and

the societal interests in preservation of human

life, prevention of suicide, and protection of the

ethical integrity of the medical profession, on the

other hand. In the final decision in this case, the

California Court of Appeal ruled, as courts have

generally ruled, that societal interests are seldom

so compelling that they can override the patient

fundamental right to refuse unwanted medical

treatment (5,111,118).

Practical Problems in Refusing

Treatment

The patient’s right of self-determination and

right to refuse treatment are of little value if they

are not supported in practice. Indeed, the treatment setting and the beliefs and personalities of

the parties involved may have as much, if not

more, impact on a patient ability to refuse treatment than the dictates of legal theory.

Hospitals may be overwhelming and intimidating for some patients. They are often large, complicated institutions. Patients are often subject to

a steady stream of providers and procedures,

some of which are not explained and some of

which are ordinarily provided without the patient’s explicit consent—for example, medications.

Overall, a patient may have little influence over

the daily course of events and may perceive a loss

of control.

The primary goal of hospitals is the diagnosis

and remedy of acute medical conditions, so that

patients can return to their baseline functioning.

There is a strong institutional commitment to curing disease and preserving life, and sophisticated

equipment and highly trained staff are readily

available to achieve these goals. The patient who

refuses life-saving or life-sustaining interventions

stands directly opposed to this institutional commitment.
100 . Life-Sustaining Technologies and the Elderly
Ch. 3—Legal Issues • 101

is to be resolved by lawyers or judges. It is not a conditional right subject to approval by ethics committees or courts of law. It is a moral and philosophical

decision that, being a competent adult, is hers alone

(20).

Finally, the court found that Bouvia’s motives for

exercising her right to refuse treatment are immaterial. At the same time, it rejected arguments

that she is in fact attempting to commit suicide (20).

The difference between the 1983 and the 1986

cases lies in the premises on which the cases were

based. In the first case, Bouvia had sought the right

to refuse any nutrition at all. Since she could eat

enough to live and chose not to, her refusal of tube

feeding was viewed as attempting to commit suicide. In the recent case, she sought the right to avoid

artificial feeding while voluntarily taking in whatever nutrients she could tolerate. Since she could

no longer voluntarily orally consume adequate

amounts of food, tube feeding was viewed as “medical treatment” replacing a faild physical function.

On that premise, the appellate court found her right

In the face of the strong institutional commitments to provide treatment, refusing treatment

requires courage and personal force on the part

of the patient-qualities that may be difficult for

a critically or terminally ill or severely debilitated

patient to muster. This is especially true when the

patient is intimidated or confused by the situation he or she is in. Moreover, when a patient is

wholly dependent on physicians, nurses, and other

health care providers for all of his or her physical needs (as a patient may be in a hospital), the

patient may be reluctant to risk the caregivers’

disapproval or rejection by refusing treatment.

Residents of nursing homes face some of the

same practical problems in refusing treatment as

hospital patients. Specifically, the daily routine and

general atmosphere in some facilities engender

extreme dependence and a feeling of loss of control. Moreover, many nursing home residents are

not cognizant of their rights to receive information about their condition and treatment and to

consent to or refuse proposed interventions. Finally, many nursing home residents are disoriented or memory impaired (at least 63 percent

according to the findings of the 1985 National

Nursing Home Survey [112]). Even if a resident

has the full capacity to make decisions, the staff

sometimes assumes that he or she does not (4).

An outpatient setting, such as a physician’s office, may be less intimidating than a hospital or

nursing home for several reasons. There is often

more equality in the relationship between patient
102 ● Life-Sustaining Technologies and the Elderly

and physician in an outpatient setting. An outpatient may be in better health than a hospital

or nursing home patient, and his or her overall

functioning may be better. The encounter between an outpatient and physician is scheduled

in advance and at the patient’s convenience, rather

than occurring without warning as, for example,

when the physician stops by the patient’s room

in a hospital or nursing home. Finally, if an outpatient is dissatisfied with the information and

options presented, he or she can simply leave the

physician’s office and seek the advice and services of another physician.

This apparent ease for the elderly patient in an

outpatient setting is deceptive, however. In particular, it may not be quite so easy for the elderly

patient to “shop around” for the most accommodating and respectful caregiver. Many elderly

people have low incomes. If a physician does not

accept Medicaid, or requires the patient to pay

a premium above the Medicare reimbursement

rate, that physician is, in effect, unavailable for

some elderly patients. Moreover, lack of transportation keeps many elderly patients from leaving

one caregiver for another who is less accessible

geographically. Thus, even outpatients may experience practical problems in finding a physician who

will continue to treat them but accept their refusal of a proposed medical intervention.

Legal Liability for Failure To

Recognize the Patient’s Right To

Refuse Treatment

The only reported case in which health care

professionals and health care institutions have

been held to be potentially liable for damages for

failing to recognize a patient right to refuse treatment is Leach v. Shapiro (70):

In 1980, Edna Leach, a 70-year-old woman with

amyotrophic lateral sclerosis ALS), was admitted

to an Akron, Ohio, hospital because of breathing

difficulty She had a cardiac arrest in the hospital, was placed on a mechanical ventilator and

nasogastric tube feeding, and remained in the hospital in a chronic vegetative state (69).

After 4 months, her husband asked her physician

to remove the ventilator. The physician refused,

and the husband, who was her legal guardian,

petitioned an Ohio court for an order to discontinue life support. The court granted the petition

in December 1980. The mechanical ventilator was

removed in January 1981, and Mrs. Leach died

(70).

In 1982, Mrs. Leach’s estate petitioned the court

for punitive damages for the 159 days she was

on life support following her husband’s request

that the ventilator be removed. The trial court

that heard the case dismissed it on the grounds

that there was no legal basis for a finding of punitive damages in such a case (70).

The appeals court reversed this decision, ruling that the physician and the hospital could be

liable for punitive damages if it could be shown

that Mrs. Leach’s legal guardian did not give explicit informed consent for the treatment and that

Mrs. Leach had previously expressed her wish not

to be kept alive on machines. The case was sent

back to the trial court for determination of these

facts (70).

Prior to the trial, the hospital settled out of court

with the Leach estate. At the trial, in which the

physician remained a defendant, the judge ruled

that there was not sufficient evidence to go to a

jury, and the case was dismissed (103).

COMPETENCY AND DECISIONMAKING CAPACITY

The law presumes that adults are competent— Not all adults have sufficient mental abilities to

that is, all adults are considered to be able to ex- make and articulate rational decisions, however.

ercise the full panoply of rights afforded to them If factual evidence that a patient lacks decisionupon reaching the age of majority. This legal pre- making capacity is presented to a court of the

sumption of competence is a global protection that appropriate jurisdiction to rebut the presumption

grants individuals the freedom to act in numer- of competency, the patient may be declared “inous spheres of life. competent .“ Unless there is a formal court chal-
Ch. 3—Legal Issues ● 103

lenge to an individual’s competency, however, the

legal presumption of competency and all the attendant rights it affords remain in effect.

When nonlawyers describe an individual as

“competent” in the context of a health care decision, they rarely intend the label to evoke the

global legal presumption just described. Instead,

they usually mean only that they personally believe the individual has the requisite mental capacity to consent to or refuse a particular medical intervention. Likewise, when nonlawyers

describe an individual as “incompetent” in this context, they seldom mean that a court has determined that the individual is incompetent. Rather,

they mean that they personally think the individual does not have the requisite mental capacity

to consent to or refuse treatment.

In this report, in order to avoid confusion between the two meanings, the words “competent”

and “incompetent” are used only in the legal sense.

Thus, the word “incompetent” is only used to describe an individual who has been determined by

a court to be incompetent. The words “decisionaily capable” and “decisionally incapable” are used

to describe an individual’s mental capacity as determined formally or informally by any individual or group other than a court. Used in this way,

the terms competent and decisionally capable are

not always synonymous—adult patients can retain their legal presumption of competence while

being clearly not decisionally capable in the opinion of their caregivers or families. Likewise, the

terms incompetent and decisionally incapable are

not necessarily synonymous—adult patients who

have been declared incompetent by a court may

be perceived by their caregivers or families to be

able to participate in a specific health care decision. (Few health care providers would risk following a treatment decision of a patient who has

been adjudicated incompetent, though.) Moreover,

in some cases, courts have decided that an individual is not capable of making a specific health

care decision but have not declared the individual incompetent.

In the reality of medical practice, if a patient

consents to a proposed intervention, it is very unlikely that the patient’s competency will be challenged, particularly if family members also agree

(33,77). If all agree that a proposed intervention

promotes the patient’s objective well-being, it is

in no one’s interest to probe the patient’s decisionmaking capacity and undermine the patient

presumed competency. People sometimes assume

that if “competent,” the patient would have chosen the option that promotes his or her objective

well-being anyway, In the absence of contrary evidence, no one is likely to challenge this assumption (118).

Thus, refusals of therapeutic or diagnostic procedures that are recommended by a physician trigger most assessments of a patient’s decisionmaking capacity (33,9 o). It is generally agreed that

when a patient’s choice differs from what is

thought to be in his or her objective best interest,

caregivers should confirm that the patient is decisionally capable. This is not to say that because

the patient chooses differently than the physician,

the patient is decisionally incapable. But when a

patient refuses an intervention that would be lifesaving or medically beneficial, it is prudent to make

certain that the patient is accurately informed,

acting voluntarily, and able to reconcile this decision with his or her personal values and preferences (33,118).

Assessing Decisionmaking Capacity

in Elderly Patients

Although American law presumes, absent a ruling by a court to the contrary, that every adult

is capable of consent or refusal of any proposed

medical treatment, the reality is that health care

providers, family members, and others often assume that elderly people are decisionally incapable. Actions that would not be thought to indicate incapacity in a younger person all of a sudden

do indicate it in an elderly person (5). This is not

a new problem, The sons of Greek dramatist Sophocles brought a proceeding against him to obtain

his property and supported their argument that

Sophocles was a lunatic on the basis of his preoccupation with writing his play Oedipus at Colonus. In his defense, Sophocles read from the play

and asked the jury if it seemed the work of an

imbecile. The jury reportedly applauded the reading and declared Sophocles to be of sound mind.

One modern legal commentator opines that un-
104 ● Life-Sustaining Technologies and the Elderly

der contemporary statutes, use of this defense

could result in the sons’ walking out of the courtroom “in control of his property” (9). Indeed, many

States retain “advanced age” as sufficient grounds

for appointment of a conservator over one’s property. Moreover, until 1976 in California and 1978

in Illinois individuals could be found incompetent

merely because they were “old and sick” (9).

Some persons of all ages are clearly incapable

of making decisions (e.g., persons who are permanently unconscious) but there are many other

persons whose ability to make decisions is not

clear. Among the elderly, such persons may suffer from the early stages of Alzheimer’s disease

or another disease that causes dementia. Although

they may be currently capable of making decisions about their medical care, this status is often

fluctuating or declining. Alternatively, many acute

and chronic diseases and conditions can affect

mental ability—usually temporarily. Infections,

cardiovascular disease, dehydration, and nutritional deficiencies are a few examples. Persons

with any of these diseases or conditions may be

currently incapable of making decisions, although

it is likely that their decisionmaking capacity will

be restored. Pain or fatigue associated with acute

or chronic disease and many medications can also

cause temporary confusion. Those who assess a

patient mental abilities need to be aware of these

effects and their potential impact on the patient

decisionmaking capacity.

Because of the sensitivity of the aged brain to

any changes in a person’s physical condition, fluctuating cognitive ability may be more common

among elderly people than younger people. Persons with fluctuating cognitive ability may appear

quite lucid at some times and confused and disoriented at other times. Such patients may be able

to make decisions during intervals of lucidity, but

if a patient cognitive ability fluctuates, accurate

assessment may take more than one visit. Some

experts suggest that when assessment of decisionmaking capacity is being conducted in a nonemergency setting, there should be at least two contacts with the patient on different days (7).

There are no uniformly accepted procedures

for determining decisionmaking capacity. In fact,

in many clinical settings, patients’ cognitive deficits that may affect decisionmaking capacity are

not routinely identified (31,38,66,79,89,95). When

the need to determine a patient decisionmaking

capacity arises in the context of a proposed diagnostic procedure or therapeutic intervention, the

determination is often made quickly and on an

ad hoc basis, frequently without any manifest

awareness on the part of the physician or other

health care provider that it is being made (73).

In hospitals and sometimes in nursing homes,

if a patient refuses a proposed intervention, staff

may request an evaluation by a consulting psychiatrist. Whether the psychiatrist has the final

word on the patient capacity to make the decision depends on many factors, including the policies of the institution, its sensitivity to the rights

of patients, and even the strength of the patient

refusal (1 18).

Health care providers ma-y turn to family members or in their absence other available parties

(such as clergy or close friends) for help in assessing the patient capacity to make a decision. Those

who know the patient best can help to determine

whether the patient’s articulated refusal is consistent with the preferences and values that he

or she has expressed over a lifetime. For example, is the patient refusal of a proposed amputation consistent with the importance he has previously given to such factors as personal appearance

or the ability to walk independently? Perhaps the

patient has been an athlete who previously told

his loved ones that he would never want to lose

his leg, even if his life was in jeopardy (118).

If a patient’s decision is in accord with his or

her previously articulated values, caregivers may

be more inclined to accept it even if there is uncertainty about the patient’s decisionmaking capacity. In such a situation, labeling the patient

“decisionally capable” permits the caregivers to

respect the patient decision and is consistent with

the “empowering” notion that underlies the concept of legal competency (118). In such cases, however, the caregiver must walk a fine line between

respecting the patient’s right to make decisions

and protecting the patient from a harmful decision. If the patient does not possess the mental

capacity to process the information necessary to

render consent or refusal, then the caregiver’s
Ch. 3—Legal Issues ● 105

acceptance of the patient articulated choice, simply because patients generally have the right to

make these decisions, may constitute a mockery

of the principles that underlie the concept of informed consent. Patients who are decisionally incapable need to be protected from harmful choices

(33,118).

Assessment of Decisionmaking

Capacity by Courts

On rare occasions, courts are presented with

the question of whether or not a patient is competent to refuse treatment. Usually in the course

of seeking a judicial determination, the petitioner

is also asking the court to appoint a legal guardian to make the decision for the patient, presumably in favor of accepting the proposed treatment.

The petitioner may also be asking the court to

decide whether the proposed treatment should

be provided.

In most cases where judicial determination of

decisionmaking capacity is sought, the court relies strongly on the opinions of the patient’s physician, other health care providers, the consulting psychiatrist (if there is one), the family, and

occasionally the patient.

As mentioned above, a judicial determination

of decisionmaking capacity does not necessarily

equate to a formal decision of the patient’s legal

status as a competent adult. An individual may

be considered legally competent, and therefore

retain all of the attendant rights (e.g., the right

to vote, make a contract, or write a will), but still

be declared incapable of making the specific decision in question. Conversely, a court may declare

the individual incompetent and appoint a guardian to manage all aspects of his or her life, even

though only one type of ability was originally in

question.

Recourse to a court to determine a patient decisionmaking capacity is not routine, and many commentators do not believe it should be (7,77,78,91).

Health care providers and families tend to avoid

seeking court resolution on questions of decisionmaking capacity because such determinations can

be costly, time consuming, and emotionally stressful. Judicial hearings are generally open to the

public and may lead to publicity that disturbs those

who prefer private resolution of such matters.

Moreover, although it is possible in an emergency

to get a quick judicial resolution, in the ordinary

situation, the wheels of justice grind very slowly.

State court systems are usually backlogged, and

patients with life-threatening conditions often die

before their cases are decided (although some

cases have been decided after the patient died).

There is no evidence that judges have a better

analytic ability or ethical framework on which to

determine decisionmaking capacity than those

who work in health care institutions. Although

they may be less biased than those who care for

the patient, judges have little experience with these

types of cases and, by and large, rest their decisions on the caregivers’ recommendations. Thus,

little may be gained by bringing these determinations to court. Moreover, there is a small risk that

once the assessment of decisionmaking capacity

is brought to court, a judge may rule on the patient’s legal status as a competent adult. The patient might not only be disempowered in the context of the specific health care decision, but could

lose all the fundamental rights that accompany

the legal presumption of competence (1 18).

The foregoing discussion is not meant to imply

that it is never appropriate to ask courts to rule

upon a patient decisionmaking capacity. Courts

are the appropriate forums for the determination

and protection of individual rights, and some legal experts argue that a court hearing is the most

appropriate procedure for determining decisionmaking capacity (11 ). Others believe that a court

hearing is appropriate only in certain cases, for

example, when health care providers disagree

among themselves or disagree with family members about whether a patient is decisionally capable. Alternatively, there may be patients whose

decisionmaking capacity is so questionable that

caregivers require a judicial declaration before

they are comfortable in accepting the patient decision. In most cases, however, the question of a

patient decisionmaking capacity, can be decided

in the health care institution, if caregivers are sensitive to factors that may affect either the patient

capacity or the assessment, including institutional

setting and caregiver biases (118). In some institutions, this is a big if.
106 ● Life-Sustaining Technologies and the Elderly

Substantive Criteria for Determining

Decisionmaking Capacity

There are few published judicial pronouncements on the substantive criteria for assessing

decisionmaking capacity. This situation is primarily

attributable to three factors. First, as previously

noted, judicial determination of decisionmaking

capacity in the context of health care decisions

is rare, and courts have therefore had few opportunities to consider the issue. Second, the

courts that have ruled in cases involving capacity

and medical decisionmaking have, for the most

part, been presented with patients who were

clearly decisionally incapable. In those cases, the

judicial opinion focused not on the ability of the

patient to make the decision, but rather on the

authority of a third party to make decisions on

the patient’s behalf. Third, the courts that hear

these cases frequently do not issue written

opinions.

Legal scholars have identified three approaches

to determining decisionmaking capacity: outcome,

status, and functional ability. Under the outcome

approach, the determination of decisionmaking

capacity is based on whether the patient’s actual

decisions reflect community values and conventional wisdom about appropriate health care. Under the status approach, an individual’s decisionmaking capacity is determined on the basis of his

or her status in predetermined categories (i.e., consciousness, age, physical or mental diagnosis) without regard to his or her actual decisionmaking

capacity. The functional approach focuses on the

individual’s actual functioning in decisionmaking

situations (5,90).

The few courts that have considered criteria

for determining decisionmaking capacity have

generally adopted the functional approach rather

than the outcome or status approach. Commentators have proposed four possible tests to measure a person’s decisionmaking capacity using the

functional approach:

1. evidencing a choice,

2. evidencing an understanding of relevant information and issues,

3. rationally manipulating the relevant information, and

4. in addition to the above three, appreciating

the nature of the situation (7).

Appreciating the nature of the situation is seen

as “distinct from factual understanding in that it

requires the subject to consider the relevance to

his immediate situation of those facts he has understood previously in the abstract” (98). It is

regarded as the strictest test.

Two cases illustrate the functional approach to

determining decisionmaking capacity. Both cases

involved elderly patients who refused life-saving

amputation of gangrenous limbs. Applying similar criteria, the courts judged one patient decisionally capable and the other decisionally incapable.

A 1978 Massachusetts case, Lane v. Candura

(68), concerned a 77-year-old widow who initially

vacillated and ultimately refused to allow amputation of her gangrenous leg. In the court’s opinion, Mrs. Candura possessed “the legally requisite competence of mind and will to make the

choice for herself .“ The court recognized that the

patient was “lucid on some matters and confused

on others.” The focus of the court inquiry, however, was on whether she made a choice “with

full appreciation of the consequences.” With that

perspective, the court found Candura to be capable of making her “most unfortunate’’ but “not . . .

uninformed decision” (68). The court stated:

Senile symptoms, in the abstract, may, of course,

justify a finding of incompetence, but the inquiry

must be more particular. What is lacking in this

case is evidence that Mrs. Candura’s areas of forgetfulness and confusion cause, or relate in any

way to, impairment of her ability to understand

that in rejecting the amputation she is, in effect,

choosing death over life (68).

The Candura court cited for support a 1973 Pennsylvania case, In re Yetter (57), and a 1978 New

Jersey case, In re Quackenbush (51), in which patients with fluctuating lucidity were declared capable of refusing life-sustaining surgery. For the

Candura court, the key factor in determining decisional capacity was the patient’s capability of “appreciating the nature and consequences” of refusing treatment (68).

This focus on the patient’s ability to appreciate

and understand the nature and consequences of

refusing treatment was also important to the court

in a 1978 Tennessee case, State Department of

Human Services v. Northern (107). Mary North-
Ch. 3—Legal Issues . 107

ern was a 72-year-old patient with gangrenous

feet who refused permission for her feet to be

amputated. She was considered to be generally

lucid and of sound mind. On the one issue of her

rotting feet, however, Northern would not recognize the seriousness of her condition or the possibility that she might die without surgery. In fact,

the court stated, “she evinces a strong desire to

live and an equally strong desire to keep her dead

feet” (107).

For the Northern court, it was the woman’s inability publicly to give evidence of “a comprehension of the facts of her condition” that led the court

to hold Northern incapable of making the decision (107). The court stated:

Capacity means mental ability to make a rational

decision, which includes the ability to perceive,

appreciate all relevant facts . . . . On the subjects

of death and amputation of her feet, her comprehension is blocked, blinded, or dimmed to the extent she is incapable of recognizing facts which

would be obvious to a person of normal perception (107).

Thus, the courts in both of these cases chose to

emphasize the patient’s ability to comprehend and

appreciate both the situation and the consequences

of refusal of treatment in determining whether

the patient has the requisite capacity to refuse

treatment.

A variety of tests to determine a patient’s decisionmaking capacity have been proposed [see, for

example, President’s Commission, 1982 [90]; Roth,

et al., 1977 [98]; Stanley, 1983 [106]). There is general agreement that the goal is to construct a test

that balances patient autonomy or self-determination and the need to protect decisionally incapable patients from harmful decisions. All the proposed tests measure the patient’s capacity to make

the particular health care decision at issue, not

his or her decisionmaking capacity in general. Yet

the tests differ in their language and stringency.

Some commentators argue that standards of decisionmaking capacity should change depending on

aspects of the specific decision, e g., the potential

risk to the patient and the certainty of treatment

outcome (see, for example, Drane, 1985 [33]). The

existence of this variety of tests highlights the fact

that determinations of decisionmaking capacity

reflect conflicting societal judgments about when

patients should be accorded the freedom to decide as they please, and when protection, more

than autonomy, is the primary goal (118).

LEGAL ASPECTS OF MEDICAL DECISIONMAKING FOR

DECISIONALLY CAPABLE ELDERLY PATIENTS

Elderly people who are clearly capable of making decisions, or who have been assessed to be

capable by whatever criteria, have the same rights

to make health care decisions as do all other adults.

Their age in no way diminishes the recognition

and respect that caregivers owe to decisionally

capable patients who face proposed medical intervention. Thus, a decisionally capable elderly

patient has the right to be informed of the diagnosis, prognosis, proposed intervention, risks of

that intervention, availability of other options and

their risks, and consequences of not intervening

at all. After receiving this information, he or she

is legally empowered to either consent to or refuse the intervention, even if that refusal should

lead to serious harm or death for the patient.

Several State and Federal courts have affirmed

the right of decisionally capable elderly patients

to refuse unwanted medical interventions whether

such refusal involves withholding or withdrawing the treatment. For example, in the 1980 Florida

case Satz v. Perlmutter (100), the appeals court

affirmed a trial court order that permitted a 73-

year-old, mentally alert, terminally ill, hospitalized

patient to be removed from the mechanical ventilator that sustained his breathing. The court

stated:

We find, and agree with, several cases upholding the right of a competent adult patient to refuse treatment for himself. From this agreement,

we reach our conclusion that, because Abe Perlmutter has a right to refuse treatment in the first

instance, he has a concomitant right to discontinue

it (100).

More recently, in a 1984 California case, Bartling

v. Superior Court (13), the appeals court strongly

upheld the right of a decisionally capable, elderly

patient to discontinue treatment. Mr. Bartling was
108 ● Life-Sustaining Technologies and the Elderly

a 70-year-old man who suffered from five major

medical problems, none of which was imminently

life-threatening. During a hospitalization for depression, a routine chest X-ray showed a tumor

on his lung. Bartling agreed to a biopsy, during

the course of which his lung collapsed. Bartling

was placed on a mechanical ventilator, and efforts

to wean him from it were unsuccessful.

When both Bartling and his wife requested that

the ventilator be removed, his physicians refused

to comply, and Bartling was placed in “soft restraints” to prevent him from disconnecting the

ventilator tubes. Bartling petitioned the court for

damages and for an order to restrain the hospital

from administering any medical care without his

consent. The hospital, a religiously affiliated institution, argued that it was devoted to the preservation of life and that it would be unethical for

hospital physicians “to disconnect life-support systems from patients whom they viewed as having

the potential for cognitive, sapient life” (13).

The California Court of Appeal found that

Bartling was mentally capable of deciding to have

the ventilator disconnected and that he “knew he

would die if the ventilator were disconnected but

nevertheless preferred death to life sustained by

mechanical means” (13), In a clear statement of

the right of decisionally capable hospitalized patients, the court stated further:

If the right of the patient to self-determination

as to his own medical treatment is to have any

meaning at all, it must be paramount to the interests of the patient’s hospital and doctors, The right

of a competent adult patient to refuse medical

treatment is a constitutionally guaranteed right

which must not be abridged (13).

Nursing home residents who are decisionally

capable have a legal right to be informed and to

consent to or refuse any medical intervention,

regardless of their age or residence in a nursing

home. There is one known (but unpublished) judicial opinion that discusses the right of an elderly,

decisionally capable nursing home resident to refuse treatment. In this 1984 case, In the Matter

of Application of Plaza Health and Rehabilitation

Center (58), a New York court found that the resident, an 85-year-old man, was decisionally capable at the time he began refusing to eat (“he knowingly and willingly made that decision with the

full understanding of the consequences, a hastened

death”) and that the facility, therefore, was neither required nor permitted to surgically forcefeed him. The judge stated, “I will not, against his

wishes, in effect order this 85- or 86-year-old person to be operated upon and/or to be force-fed

in any manner, or to be restrained for the rest

of his natural life” (58). Although the judge did

not explicitly state on what basis he made this decision, it is clear that this opinion is supported

by the resident’s common law right of self-determination (118).

OTA is not aware of any judicial decisions that

explicitly discuss the rights of the decisionally capable, elderly patient at home. However, a 1986

New Jersey case, In re Farrell (48) concerned a

37-year-old woman with amyotrophic lateral sclerosis (ALS) who was on a mechanical ventilator

at home. The Supreme Court of New Jersey found

that the woman was decisionally capable and that

the ventilator could be removed as she requested.

Observers point out that there is no reason to

doubt that an elderly patient’s right to make informed, voluntary decisions applies when the patient is living at home, just as it does when the

patient is in other settings, and that this right could

be judicially vindicated if necessary (32,118).

Despite the legal right of decisionally capable

elderly patients to make health care decisions and

to refuse unwanted treatment, many practical difficulties can interfere with their exercise of this

right, as discussed earlier. Especially troublesome

is the possibility that some elderly persons who

are decisionally capable and who refuse treatment

may be assumed to be or said to be decisionally

incapable without a careful and unbiased determination of their decisionmaking capacity. It is

not known how often such situations occur, but

three factors suggest that they may occur more

often than is generally recognized: 1) lack of

agreed upon procedures and criteria for determining decisionmaking capacity; 2) the fact that

determinations of decisionmaking capacity are

sometimes made quickly and informally by health

care providers who are barely aware that they

are making such a determination (73); and 3) the

widespread societal myth that elderly people are

generally senile and confused (22).
Ch. 3—Legal Issues ● 109

LEGAL ASPECTS OF MEDICAL DECISIONMAKING FOR

DECISIONALLY INCAPABLE ELDERLY PATIENTS

For patients who are clearly incapable of making decisions in general, or who have been

assessed to be incapable of making a particular

decision, several questions arise:

● Can life-sustaining treatment ever be refused

on behalf of a decisionally incapable patient?

● If so, who is empowered to make that decision?

● What criteria should guide a person who is

making a decision on behalf of such a patient?

Courts that have considered treatment decisions

for persons who are decisionally incapable have

begun with the premise that such persons’ rights

are the same as the rights of persons who are decisionally capable. For example, the court in the

1977 Massachusetts case Superintendent of Belchertown State School v. Saikewicz (109), which

involved possible chemotherapy for a 68-year-old

congenitally retarded man, explicitly stated:

The substantive rights of the competent and the

incompetent person are the same in regard to the

right to decline potentially life-prolonging treatment . . . . The recognition of that right must extend to the case of an incompetent, as well as a

competent, patient because the value of human

dignity extends to both (109).

Since courts have recognized the uniform applicability of the fundamental rights of patients

in medical decisionmaking, the challenge has been

to develop procedures and substantive criteria for

decisionmaking that protect these rights and at

the same time protect vulnerable patients from

harmful decisions and protect societal interests

related to the decisions (s). Case law and statutes

provide a variety of procedures to accomplish

these goals. Among them are procedures for designating a surrogate decisionmaker (as authorized

by durable power of attorney, guardianship, and

family consent laws and some living will statutes)

and procedures for documenting a patient treatment preferences while the patient is decisionally capable—notably living wills. In addition, several courts have outlined substantive criteria to

guide decisionmaking for persons who are decisionally incapable and/or set out procedures for

reviewing treatment decisions for such persons.

These criteria and procedures vary in different

States because of differences in case law and statutes in each State. Thus, no one description covers every jurisdiction.

Criteria and procedures for decisionmaking for

persons who are decisionally incapable are extremely important for the technologies and the

kinds of patients that are the focus of this report.

Although in medical practice in general, most patients are decisionally capable, many patients who

are candidates for the five technologies discussed

in this report are not decisionally capable at the

time treatment decisions must be made, No reliable figures are available on the number of such

patients. As discussed in chapters 8 and 9, however, some of the elderly people who are candidates for tube feeding or life-sustaining antibiotic

therapy are confused as a result of organic diseases that cause dementia. People with such diseases are sometimes also candidates for resuscitation, mechanical ventilation, and dialysis.

Furthermore, many persons who are not demented

may be so sick at the time decisions about lifesustaining technologies must be made that they

are not able to participate in the decisions. At the

extreme are patients who are unconscious at the

time of the decision.

Most decisions about life-sustaining treatments

for decisionally incapable elderly patients arise

in hospitals or nursing homes, but the courts that

have considered cases involving such decisions

have generally not limited the applicability of their

rulings to specific settings. An exception was the

1985 ruling of the New Jersey Supreme Court in

the case of Claire Conroy (46), which was held

to apply only to nursing home residents (see discussion below).

Designating a Surrogate

Decisionmaker

In many jurisdictions, adults are legally authorized to appoint, in advance of incapacity, another

person to act as a surrogate or proxy decisionmaker. In the event that the individual subse-
110 ● Life-Sustaining Technologies and the Elderly

quently becomes incapable of making health care

decisions, the surrogate is empowered to act,

The advance appointment of a surrogate decisionmaker by a patient has several preconditions.

The patient must be capable of making decisions

at the time the directive is made, must have

thought about the need to appoint a surrogate

in advance, and must have had someone available

and willing to take on that role. For elderly individuals without relatives or close friends, appointing a surrogate may be difficult.

For individuals who have someone to appoint

as surrogate, designating this person in advance

can minimize confusion and uncertainty in future

medical decisions. Selecting a surrogate in advance

assures the patient that someone trustworthy and

knowledgeable will be acting on his or her behalf

if it becomes necessary.

If a patient has not appointed a surrogate before becoming decisionally incapable, health care

providers who must make treatment decisions for

the patient may turn to the courts to appoint a

surrogate. More frequently though, they designate (formally or informally) a family member or

friend of the patient to act as the surrogate. Who

is designated as a surrogate in either of these situations depends on several factors, including the

case law and statutes of the jurisdiction and the

availability of family or close friends of the patient.

According to one observer, a surrogate decisionmaker should possess the following qualities:

● he or she should have no conflict of interest

or should be able to overcome a potential conflict of interest;

● he or she should have the capacity to participate in the decisionmaking process in an informed and conscientious manner (with the

necessary corollary that health care providers

must provide the appropriate information);

and

● he or she should have the ability to advocate

the patient’s interests throughout the decisionmaking process (25).

Advance Appointment of a Surrogate

Decisionmaker by the Patient

Depending on the State, an individual can appoint a surrogate decisionmaker through either

a durable power of attorney or a living will. All

States and the District of Columbia have a durable power of attorney statute. These statutes permit individuals (known as “principals”) to delegate

to another (known as the “proxy,” “agent,” or “attorney in fact”) the legal authority to act on the

principal’s behalf. Such empowerment is “durable” because, unlike the traditional power of attorney, it does not automatically terminate if the

principal subsequently becomes incompetent.

Durable power of attorney statutes were originally intended to permit financial or property

transactions in the absence of the principal. Nothing in the language of these statutes precludes or

limits the use of a durable power of attorney as

a device for delegating medical decisionmaking

authority, and no court has ruled that a durable

power of attorney cannot be used for this purpose (5). However, some uncertainty remains, except in the 15 States2 that expressly allow this

use (either through statutes or their interpretation) (27,83).

Some States, for example, California and Rhode

Island, have a specific form that is used to establish a durable power of attorney for health care.

The California form is illustrated in figure 3-1.

Most States do not require a specific form, however. A sample form that could be used in any

of these States is illustrated in figure 3-2. In some

States, a durable power of attorney for health care

must be notarized to be valid, and in some States,

it must be filed with a specific government office

(83).

The process of executing a durable power of

attorney may encourage an individual to consider

his or her treatment preferences and discuss them

—— -

2Arizona, California, Colorado, Connecticut, Hawaii, Idaho, Iowa

Maryland, Nevada, New Jersey, New York, North Carolina, Pennsylvania, Rhode Island, and Virginia (27).
Ch. 3—Legal Issues ● 111

Figure 3-1 .—California’s Form for Creating a Durable Power of Attorney for Health Care

CALIFORNIA

STATUTORY FORM DURABLE POWER OF ATTORNEY FOR

HEALTH CARE

(California Civil Code Section 2500)

Warning to Person Executing This Document

This is an important legal document which is authorized by the Keene Health Care Agent Act. Before executing Iii!, document, you should know these important facts:

This document gives the person you designate as your agent (the attorney in fact) the power to make health care decisions

for YOU. Your agent must act consistently with your desires as stated in this document or otherwise made known.

Except as you otherwise specify in this document, this document gives your agent the power to consent to your doctor

not giving treatment or stopping treatment necessary to keep you alive.

Notwithstanding this document, you have the right to make medical and other health care decisions for yourself so long

as you can give informed consent with respect to the particular decision. In addition, no treatment may be given to you

over your objection at the time and health care necessary to keep You alive may not be stopped or withheld if you object

at the time.

This document gives your agent authority to consent, to refuse to consent, or to withdraw consent to any care treatment,

service or procedure to maintain, diagnose or treat a physical or mental condition. This power is subject to any statement

of your desires and any limitations that You include in this document. You may state in this document any types of treatment that you do not desire. In addition, a court can take away the power of your agent 10 make health care decisions

for you if your agent (1) authorizes anything that is illegal, (2) acts contrary to your known desires, or (3) where your

desires are not known, does anything that is clearly contary to your best interests.

Unless you specify a shorter period in this document, this power will exist for seven years from the date you execute

this document and, if you are unable to make health care decisions for yourself at the time when this seven-year period

ends, this power will continue to exist until the time when you become able to make health care decisions for yourself.

You have the right to revoke the authority of your agent by notifying your agent or your treating doctor, hospital, or

other health care provider orally or in writing of the revocation.

Your agent has the right to examine your medical records and to consent to their disclosure unless you limit this right

in this document.

Unless you otherwise specify in this document, this document gives your agent the power after you die to (1) authorize

an autopsy, (2) donate your body or parts thereof for transplant or therapeutic or educational or scientific purposes, and

(3) direct the disposition of your remains.

This document revokes any prior durable power of attorney for health care.

YOU should carefully read and follow the witnessing procedure described at the end of this form. This document will

not be valid unless you comply with the witnessing procedure

If there is anything in this document that you do not understand, you should ask a lawyer to explain it to you.

Your agent may need this document immediately in case of an emergency that requires a decision concerning your health

care Either keep this document where it is immediately available to your agent and alternate agents or give each of them

an executed copy of this document. You may also want to give your doctor an executed copy of this document.

Do not use this form if you are a conservatee under the Lanterman-Petris-Short Act and YOU want to appoint your conservator as your agent. You can do that only if the appointment document includes a certificate of your attorney.

SOURCE: California Civil Code Sections 2410-2443,
112 . Life-Sustaining Technologies and the Elderly

Figure 3-1 .—California’s Form for Creating a Durable Power of Attorney for Health Care—Continued

1. Designation of Health Care Agent.

I,

(Insert your name and address)

do hereby designate and appoint

(Insert name address and telephone number of one individual only aS your agent tO make health care decisions for You. None of the

following may be designated as your agent: (1) your treating healh care provider, (2) a nonrelative employee of your treating health care

provier, (3) an operator of a community care facility, or (4) a nonrelative employee of an operator of a community care facility.)

as my attorney in fact (agent) to make health care decisions for me as authorized in this document. For the purposes of

this document, “health care decision” means consent, refusal of consent, or withdrawal of consent to any care treatment,

service, or procedure to maintain, diagnose,~ or treat an individual’s physical or mental condition.

2. Creation of Durable Power of Attorney for Health Care

By this document I intend to create a durable power of attorney for health care under Sections 2430 to 2443, inclusive of the California Civil Code This power of attorney is authorized by the Keene Health Care Agent Act and

shall be construed in accordance with the provisions of Sections 2500 to 2506 inclusive of the California Civil Code.

This power of attorney shall not be affected by my subsequent incapacity.

3. General Statement of Authority Granted.

Subject to any limitations in this document, I hereby grant to my agent full power and authority to make health

care decisions for me to the same extent that I could make such decisions for myself if I had the capacity to do so. In

exercising this authority, my agent shall make health care decisions that are consistent with my desires as stated in this

document or otherwise made known to my agent, including, but not limited to, my desires concerning obtaining or refusing or withdrawing life-prolonging care treatment, services, and procedures.

(If you want to limit the authority of your agent to make health care decisions for You, You can state the limitations in paragraph

4 [“Statement of Desires, Special Provisions, and Limitations”] below. You can indicate your desires by including a statement of your

desires in the same paragraph.)

4. Statement of Desires, Special Provisions, and Limitations.

(Your agent must make health care decisions that are consistent with your know desires. You can, but are not required to, state your

desires in the space provided below. You should consider whether You want to include a statement of your desires concerning 1ifeprolonging care, treatment, services, arid procedures. You can also include a statement of your desires concerning other matters relating

to your health care. You can also make your desires known to your agent by discussing your desires with your agent or by some other

means. If there are arty types of treatment that you do not want to be used, You should state them in the space below. If You want

to limit in any other way the authority given your agent by this document, You should state the limits in the space below. If You do

not state any limits, your agent will have broad powers to make health care decisions for you, except to the extent that there are limits

provided by law.)

In exercising the authority under this durable power of attorney for health care my agent shall act consistently with

my desires as stated below and is subject to the special provisions and limitations stated below:

(a) Statement of desires concerning life-prolonging care, treatment, services, and procedures:

(b) Additional statement of desires, special provisions, and limitations:

(You may attach additional pages if you need more space to complete your statement. If you attach additional pages, you must date

and sign EACH of the additional pages at the same time you date and sign this document. )

5. Inspection and Disclosure of Information Relating to My Physical or Mental Health.

Subject to any limitations in this document, my agent has the power and authority to do all of the following:

(a) Request, review, and receive any information, verbal or written, regarding my physical or mental health, including,

but not limited to, medical and hospital records.
Ch. 3—Legal Issues . 113

Figure 3.1 .—California’s Form for Creating a Durable Power of Attorney for Health Care—Continued

(b) Execute on my behalf any releases or other documents that may be required in order to obtain this information.

(c) Consent to the disclosure of this information.

(If you want to limit the authority of your agent to receive and disclose reformation relating to your health, You must state the limitations in paragraph 4 [“Statement of Desires, Special Provisions, and Limitations”] above.)

6. Signing Documents, Waivers, and Releases.

Where necessary to implement the health care decisions that my agent is authorized by this document to make, my

agent has the power and authority to execute on my behalf all of the following:

(a) Documents titled or purporting to be a “Refusal to Permit Treatment” and “Leaving Hospital Against Medical

Ad\ ice. ”

(b) Any necessary wavier or release from liability required by a hospital or physician.

7. Autopsy; Anatomical Gifts; Disposition of Remains.

Subject to any limitations m this document, my agent has the power and authority to do all of the following:

(a) Authorize an autopsy under Section 7113 of the Health and Safety Code.

(b) Make a disposition of a part or parts of my body under the Uniform Anatomical Gift Act (Chapter 3.5 [commencing with Section 7150] of Part 1 of Division 7 of the Health and Safety Code).

(c) Direct the disposition of my remains under Section 7100 of the Health and Safety Code.

(If you want to limit the authority of your agent to consent to an autopsy, make an anatomical gift, or direct the disposition of your

remains, you must state the limitations in paragraph 4 [“Statement of Desires, Special Provisions, and Limitations”] above. )

8. Duration.

(Unless you specify a shorter period in the space below, this power of attorney will exist for seven years from the date YOU execute this

document and. You are unable to make health care decisions for yourself at the time when this seven-year period ends, the power will

continue to exist until the time when you become able to make health care decisions for yourself.)

This durable power of attorney for health care expires on:

(Fall in this space ONLY if you want the authority of your agent to end EARLIER than the sewn-year period described above.)

9. Designation of Alternate Agents.

(You are not required to designate any alternate agents but you may do so. Any alternate agent YOU designate will be able to make the

same health care decisions as the agent you designated m paragraph 1, above, in the event that the agent is unable or ineligible to act

as your agent. If the agent you designated is your spouse. he or she becomes ineligible to act as your agent if your marriage IS dissolved.)

If the person designated as my agent in paragraph 1 is not available or becomes ineligible to act as my agent to make

a health care decision for me or loses the mental capacity to make health care decisions for me or if I revoke that person’s

appointment or authority to act as my agent to make health care decisions for me then I designate and appoint the following persons to serve as my agent to make health care decisions for me as authorized in this document, such persons to

serve in the order listed below:

A. First Alternate Agent

(Insert name, address, and telephone number of first alternate agent)

B. Second Alternate Agent

(Insert name address, and telephone number of second alternate agent)

10. Nomination of Conservator of Person.

(A conservator of the person may be appointed for you if a court decides that one should be appointed. The conservator is responsible

for your physical care, which under some circumstances includes making health care decisions for you. You are not required to nominate

a conservator but you may do so. The court will appoint the person you nominate unless that would be contrary to your best interests.

You may, but are not required to, nominate as your conservator the same person you named m paragraph 1 as your health care agent,

You can nominate an Individual as your conservator by completing the space below)

If a conservator of the person is to be appointed for me, I nominate the following individual to serve as conservator

of the person:

(Insert name and address of person nominated as conservator of the person)

11. Prior Designations Revoked.

I revoke any prior durable power of attorney for health care.
114 ● Life-Sustaining Technologies and the Elderly

Figure 3-1 .-California’s Form for Creating a Durable Power of Attorney for Health Care—continued

Date and Signature of Principal

(YOU MUST DATE AND SIGN THIS POWER OF ATTORNEY)

I sign my name to this Statutory Form Durable Power of Attorney for Health Care on

at

(Date) (City) State)

(This power of attorney will not be valid unless it IS signed by IWO qualified~il[nesses ~ho are present when YOU sign or acknowledge

your signature. If you have attached any additional pages !O this form, YOU must date and sign each of [he additional pages at the same

ume you date and sign this power of attorney. )

Slalemenl of M ilrwsses

(This document must be witnessed by two qualifml ~duk wnne~$x. None of the ~uiiot~lng may be used as a witness: (1) a person you

designate as your agent or alternale agem, (2) a hedlh c~re provldcr, (3) all cm[ Ioyee of a heaith care provider, (4) [he operator of a

community cart facility, (S) an employee of an operator of a communl[y care facl@. At least one of the witnesses must make the additional declaration set out following the place where the w Itnesses sign.)

(READ CAREFULLY BEFORE SIGNING. Ybu can sign as a ~mess oni> II’ }OU personally know [he principal or the Identity of the

principal is proved to you by convincing ewdencc)

(To have convincing evidence of the icfenw of’ [he wncwai. YOU must be presented ~lth and reasonably rely on any one or more

of the following:

(1) An identification card or driver’s license tssucd bj [he Cdifornla Departmelll UI Ylotor Vehlcies :hat IS current or has been issued

wi(hin five years.

(2) A passport Issued by the Department of S[aw 01 ~ht Lnlted States [ha[ 1$ CUI rent or has been Issued within five years.

(3) Any of the following documents if (hc document IS cllrrem or has been wcd ~lthm tlve years and contains a photograph and

description of the person named on it, is signed by !he per~w, and bears a serial or other Identifying number:

(a) A passport issued by a foreign government that has been stamped by the L’nlted States immigration and Na[urdiza[lon Ser\ we.

(b) A driver’s license issu~ W a state other than calif~rnla or b!+ ~ Canadian or Nle~IcM public agency authorized 10 issue dri~ers’ licenses

(c) An identification card issued by a state other than California.

(d) An identification card issued by any branch of [hc armed forces of the Umted States.)

(Olher kinds of proof of identity are not allowed.)

I declare under penalty of perjury under [he Idws of Cidil’orma that the person who signed w dchlm~ldgtxl [his document is personally known to me (or proved 10 mc on the basis of convincing evidence) to be the principal, that the principal

signed or acknowledged this durable power Ut attorney in my presence that the principal appears to be of sound mind

and under no duress, fraud, or undue intluencq that I am not the person appointed as attorney in fact by [his document,

and that 1 am not a health care provider, an employee of a health care provider, the operator of a community care facility,

nor an employee of an opemtor of a community care facility

—.— ———.—.— . . .— (Signature—Witness 1) (Signature—Witness II)

—. -——. —— (Print Name)

.—.—— - ..—

(Print Name)

——-. . . —.. — -——.

(Residence Address) (Residence Address)

— (Date) (Date)

(AT LEAST ONE OF THE ABOVE WITNESSES MUST ALSO SIGN THE FOLLOWING DECLARATION.)

I further declare under penalty of perjury under the laws of California, that I am not related to the principal by blood,

marriage, or adoption, and, to the best of my knowledge I am not entitled to any part of the estate of the principal upon

the death of the principal under a will now existing or by operation of law.

Signature: Signature:

Statement of Patient Advocate or Ombudsman

(If you are a patient m a skdled nursing facdity, one 01 [he )~mmses must be a px]en[ xi~ocate or ombudsman. The foilowmg statement

IS requwed only If you are a patient In a skd]ed nursing facIiI[> —a heai!h cart tw]lir) [hat pro~ Ides !he followng basic serwces: skdled

nursing care and supportive care to pat!enu whose primary need IS for a}al(abd!ty of skdled nursing care on an extended basis. The

pattent advocate or ombudsman must sign both pans ot the ‘Wawrnent of W ltnesses” abo~e A,SD must also s;gn the following waternent.)

1 further declare under penalty of perjury under the law~ of Cahfornla ~hat 1 am a pimen! advocate or ombudsman as designated

by the State Department of Aging and that 1 am serwng as a witness as required by subdlvlslon (f) or Section 2432 of the Civil Code

Signature:
Ch. 3—Legal Issues ● 115

Figure 3-2.—Sample of a General Form for Creating a Durable Power of Attorney for Health Care

DURABLE POWER OF ATTORNEY

FOR HEALTH CARE

work telephone number

BY SIGNING HERE I INDICATE THAT I UNDERSTAND THE PURPOSE AND EFFECT OF

THIS DOCUMENT.

I sign my name to this form on

(date)

My current home address:

WITNESSES

First Witness

Second Witness

Signiture

Signiture:

Signiture:

Signigure

Home Address:

SOURCE: Barbara Mishkin, Hogan & Hartson, Washington, DC
116 ● Life-Sustaining Technologies and the Elderly

with the surrogate so that when decisions must

be made, they will reflect what the individual

would have chosen (118). Anecdotal evidence suggests, however, that some individuals who execute durable powers of attorney do not discuss

their treatment preferences with the designated

surrogate. Some do not even notify the person

they have designated as their surrogate that the

durable power of attorney has been executed. In

such situations, the designated surrogate may be

ill-prepared to make treatment decisions on the

principal’s behalf (35).

In seven States,’ statutes that authorize living

wills allow individuals to appoint a surrogate decisionmaker through their living will (27). (Living

wills documents in which an individual sets forth

his or her wishes concerning life-sustaining treatments in the event that he or she becomes decisionally incapable—are discussed at greater length

later in this chapter.) Depending on the State statute, a surrogate appointed through a living will

can perform any of several functions: serving as

an advocate for the patient’s preferences as explicitly documented in the living will, filling in gaps

or clearing up confusion about the patient’s explicit directives based on prior discussions with

the patient, or making decisions when the patient

has left no explicit directives.

Two States—Indiana and Iowa-do not directly

address surrogate appointments in their living will

statutes, but by providing for consultation between the physician and the patient’s representative, do inferentially authorize such appointments. Moreover, in States that do not require a

specific form for a living will, an individual may

be able to include a surrogate appointment. The

legal authority of surrogates appointed in this way

is uncertain, however (27).

Court-Appointed Surrogate

Decisionmaker

Under their parens patriae powers, States have

the authority and obligation to protect individuals

who are incapable of protecting their own interests, This power, derived from English common

law, gives courts the authority to appoint legal

‘

]Delaware, Florida, Louisiana, trirginia, Lltah, Texas, and Wyoming (27).

guardians, both for children (who are categorically considered unable to protect themselves) and

for adults who are decisionally incapable. Some

States require that the adult first be adjudicated

incompetent before a guardian will be appointed;

other States recognize that adults can be incapacitated in only certain spheres and will therefore

appoint guardians for limited purposes. Appointment proceedings are alternatively known as

guardianship, conservatorship, or committeeship

proceedings, depending on the State (118).

Resort to a court of law for the appointment

of a legal guardian to make health care decisions

on behalf of a decisionally incapable adult is not

common. It is most likely to occur when the decisionally incapable adult has no family or close

friends; or the treatment plan is considered controversial, and health care providers and family

want prior judicial guidance and assurance about

the appropriateness of their actions; or the health

care providers and family or close friends disagree

about the course of action to be taken on behalf

of the patient. Although courts are willing to appoint legal guardians for the specific purpose of

making health care decisions and some of the most

noteworthy court decisions about the rights of

decisionally incapable patients have arisen in this

context (including In re Quinlan [52]), a guardianship proceeding can be expensive, time-consuming, and emotionally stressful for the family and

for the patient, if he or she is aware of it (83).

Many State guardianship statutes specify a

preference for appointing a family member to be

the legal guardian. Some States allow people to

nominate, while they are decisionally capable, a

person to be their court-appointed guardian in

the event that they become decisionally incapable in the future and guardianship is required (27).

In some States, it is unclear whether guardians

already appointed for general management tasks

also have the authority to make health care decisions for their wards. Some States require such

a guardian to return to court and seek specific

judicial authorization to make health care decisions (118). Under a new law that takes effect in

the District of Columbia in July 1987, court-appointed guardians are not allowed to make decisions about life-sustaining treatment for their

wards without explicit approval of the court, un-
Ch. 3—Legal Issues • 117

less the authority to make such decisions is specifically granted to the guardian when the guardianship is set up (76).

It is often very difficult to find someone to serve

as a guardian for persons who do not have a family member or friend to act in this capacity and

whose estate is not large enough to pay a lawyer

or other individual to act as their guardian. Some

States have a public office that serves as the guardian of last resort for such persons. In Arizona,

for example, the Public Fiduciary’s Office in each

county acts as guardian for persons who are adjudicated incompetent and have no other legal

guardian. This office is staffed with both lawyers

and social workers and is legally empowered to

make both financial and treatment decisions for

its wards. According to a former public guardian

for the State of Arizona, it costs about $500 to

establish guardianship through this program and

$300 to $500 per year to manage each case (16).

Although the experience with public guardianship has been favorable in Arizona, some public

guardianship programs have had problems. In Los

Angeles, for example, the public guardian was

sued for inappropriate institutionalization of

wards, and in other jurisdictions, public guardians

have mishandled the funds of wards (102).

Informal Designation of a Surrogate

Decisionmaker and Family Consent Laws

In everyday medical practice, few patients who

are decisionally incapable have a court-appointed

guardian or a surrogate whom they explicitly appointed before they became decisionally incapable. The usual procedure in hospitals, nursing

homes, and other health care facilities is for health

care providers to turn to the patient next of kin

or other close family or friends who know the

patient and seem to have his or her best interests

in mind. Frequently, one family member indicates

to the provider that he or she will act as the family spokesperson. At other times, the provider informally selects one family member to assist with

decisionmaking.

Although this practice frequently works well,

it is potentially fraught with difficulty if individual family members disagree about who should

be the surrogate decisionmaker or about whether

a specific treatment should be provided. In such

situations, the health care provider or facility may

petition a court or urge the family to petition a

court for appointment of a legal guardian. More

often, the provider may seek to reconcile the

wishes of different family members informally,

without insisting that one individual be designated

as the surrogate. Anecdotal evidence suggests that

the latter approach often leads providers to defensive decisionmaking—that is, the provider may opt

for treatment decisions that he or she believes

are least likely to result in a successful law suit

if one family member chooses to sue.

Fifteen States have family consent laws that empower relatives of decisionally incapable patients

to make legally binding decisions on behalf of those

patients without a formal guardianship proceeding.’ In some of these States, family members

may make such decisions only after a physician

has certified that the patient is terminally ill. Case

law in five States’ supports the right of family

members to make health care decisions for patients who are terminally ill or irreversibly comatose (83). In most States, however, there is no legal authority for family members to make

decisions on behalf of their elderly relatives even

though this is a common and widely accepted

practice.

The assumptions that underlie the tradition of

informally designated family surrogates include

the belief that the family is the most concerned

about the patient’s best interests, and the belief

that the family is the most knowledgeable about

the patient’s values and preferences. In some

cases, this is clearly not true. If there is evidence

to contradict either of these beliefs, some commentators advise health care providers to seek

legal counsel, and perhaps to petition a court for

appointment of a legal guardian (118).

The Substantive Basis for the

Surrogate Decision

Ideally, two fundamental values—patient wellbeing and patient self determination—should un-

‘Arkansas, Florida, Georgia, Idaho, Iowa, Louisiana, Maine, Maryland, Nlississippi, New Llexico, North Carolina, Oregon, Texas, t’irginia, and L!tah (33).

‘California, Connecticut, Florida, Georgia, and New Jersey (83).
118 ● Life-Sustaining Technologies and the Elderly

derlie surrogate decisions for persons who are

decisionally incapable (90,118). Various courts and

legal scholars have developed standards for decisionmaking that reflect these values in differing

degrees.

Best Interest v. Substituted Judgment

The two legal standards that generally guide surrogate decisionmaking are the “best interest standard” and the “substituted judgment standard. ”

Each standard guides decisionmaking from a different perspective.

If a patient has left no directives, has failed to

convey his or her treatment preferences to anyone, or was never capable of making such decisions, the surrogate must rely on the best interest standard. This standard focuses on objective,

societally shared criteria. The surrogate makes

the decision from the point of view of a hypothetical “reasonable person” and considers such factors as the relief of suffering, the usefulness or

futility of the proposed intervention, and the risks,

benefits, and burdens of the proposed intervention to the patient. Most scholars agree that benefits and burdens to family and society should be

irrelevant to a decision based on the best interest

standard even though such considerations might

be a factor in a decisionally capable patient’s choice

(118).

The substituted judgment standard requires the

surrogate to use the patient’s personal values and

preferences as the basis for health care decisions.

Under this standard, the surrogate’s decision

should be the same decision that the patient would

make if he or she were able to decide. As the Saikewicz court stated in 1977, this standard requires

the surrogate to “don the mental mantle of the

incompetent” (109).

The substituted judgment standard is a subjective standard that necessitates that the patient at

one time must have been decisionally capable and

must have expressed, in some manner, values and

preferences that are relevant to the decision to

be made. It is generally preferred over the best

interest standard when these criteria are met, because it allows the patient’s own definition of “wellbeing” to be in control; also, in a certain way, the

substituted judgment standard permits a decisionally incapable patient to exercise his or her right

to self-determination, although he or she is unable to do so directly (5,91).

Types of Substituted Judgment Cases

There are two types of substituted judgment

cases: those in which the patient explicitly stated

wishes and preferences prior to becoming incapable, and those in which the patient made no explicit statement, but where the surrogate is able

to infer what the patient would have wanted regarding the specific decision because of a close

familiarity with the patient, patient’s lifestyle, and

patient’s patterns of behavior. Some States, such

as New York, require an explicit statement supported by “clear and convincing” evidence (55);

no inferences are permitted in those jurisdictions.

Other States, such as Massachusetts, clearly permit inferences, and even extend the use of what

they consider the “substituted judgment” standard to situations where the patient was never capable of judgment in the first place. In either case,

the most effective way for individuals to ensure

that decisions about their treatment will reflect

their own values and preferences, should they

someday be incapable of making decisions for

themselves, is through the use of an advance directive (i.e., a durable power of attorney, a living will,

or both) (118).

An example of a substituted judgment case involving an explicit prior statement is that of

Brother Fox, an 83-year-old member of the Roman Catholic Society of Mary, who, following routine hernia surgery, was left in a permanent

vegetative state on a mechanical ventilator. During a prior bioethical discussion of the Karen Ann

Quinlan case, Brother Fox had expressed to his

fellow clerics a personal desire not to be maintained by ‘(extraordinary means” if he were ever

in a similar situation. As the court noted, the issue of whether or not someone else can speak

for the patient “is not presented in this case because here Brother Fox made the decision for himself before he became incompetent” (55). Since

Brother Fox’s prior statements of desires were “obviously solemn pronouncements,” the court ruled

that they must be followed. As the New York court

noted, prior declarations can provide ‘(clear and

convincing” evidence of a person’s wishes, and
Ch. 3—Legal Issues . 119

in the absence of evidence to the contrary should

be considered the best evidence of the declarant’s

actual preferences (55).

An example of substituted judgment by inference when no explicit prior statement exists is

the 1983 Washington State case In re Colyer (45).

The patient was a 69-year-old woman who had

sustained a cardiac arrest. Although she was resuscitated by paramedics, Bertha Colyer suffered

massive brain damage. She was placed on a mechanical ventilator and remained in a comatose,

unresponsive state. The Washington court said

that “her prognosis for any sort of meaningful

existence was zero” (45). Colyer’s husband, who

was her legal guardian, asked the court for permission to remove the ventilator. Although the patient had never explicitly stated her preferences

regarding such an act, her husband inferred that

this would have been her decision, had she been

able to decide. The Colyer court commented:

There is no evidence that Bertha Colyer explicitly expressed her desire to refuse life-sustaining treatment. Nevertheless, her husband and her

sisters agreed that Bertha Colyer was a very independent woman, that she disliked going to doctors, and, if able to express her views, that she

would have requested the treatment be withdrawn. Given the unanimity of the opinions expressed by Bertha’s closest kin, together with the

absence of any ill motives, we were satisfied that

Bertha’s guardian was exercising his best judgment as to Bertha’s personal choice when he requested the removal of the life support system

(45).

In the 1985 New Jersey case In re Conroy (46),

the court discussed various ways a surrogate

might make a substituted judgment despite the

lack of a prior explicit statement. Just as the Colyer

court noted such factors as the patient’s prior independence, her dislike of doctors, and her family’s unanimity about what she would have

wanted, so too did the Conroy court outline relevant information. The Conroy court stated:

. . . an intent not to have life-sustaining medical

intervention . . . might take the form of reactions

the patient voiced regarding medical treatment

administered to others . . . It might also be deduced

from a person’s religious beliefs and the tenets

of that religion . . . or from the patient’s consistent pattern of conduct with respect to prior decisions about his own medical care (46).

The Conroy court, however, recognized that while

all relevant evidence should be considered “the

probative value of such evidence may vary depending on the remoteness, consistency, and

thoughtfulness of the prior statements or actions

and the maturity of the person at the time of the

statements or acts” (46).

The Conroy court set forth three alternate

standards for surrogate decisionmaking that depend on the amount of evidence that is available

about the patient preferences, and the benefits,

burdens, pain, and suffering associated with continued treatment. The three standards are:

1.

2.

3.

a subjective test, where it is “clear that the

particular patient would have refused the

treatment under the circumstances involved”;

a limited-objective test, which permits treatment to be withdrawn if there is some trustworthy evidence that the patient would have

refused, and “the decisionmaker is satisfied

that the burdens of the patient’s continued

life with the treatment outweigh the benefits of that life for the patient”; and

a pure-objective test, where there is an absence of trustworthy evidence, but the net

burdens of the patient’s life with the treatment clearly and markedly outweigh the benefits that the patient derives from life. In addition, the “unavoidable, recurring and severe”

pain of the patient’s life with treatment is such

that administering life-sustaining treatment

would be “inhumane” (46).

It must be noted, however, that the Conroy court

restricted its opinion to cases involving “nursing

home residents, suffering from serious and permanent mental and physical impairments, who

will probably die within 1 year, even with treatment, and who, though formerly competent, are

now incompetent to make decisions about their

life-sustaining treatment and are unlikely to regain such competence” (46).
120 ● Life-Sustaining Technologies and the Elderly

Judicial Review of Surrogate

Decisions

Whether a court must review a surrogate’s decision to withhold or withdraw life-sustaining

treatment on behalf of a decisionally incapable

patient varies widely among jurisdictions. Even

within the same jurisdiction, some types of cases

appear to require more review than others, depending on the treatment setting, the treatment

options, and the vulnerability of the class to which

the patient belongs. In some jurisdictions, cases

have been brought to court precisely because of

uncertainty about the appropriateness of nonjudicial resolution. In the context of deciding those

cases, courts have outlined procedures for surrogates to follow, some of which require judicial

involvement.

Two recent Washington State cases, In re Colyer

(45) and In re Guardianship of Hamlin (49), resulted

in court decisions that established the following

procedures for that State. If the family, the treating physician, and the institutional “prognosis committee” all agree that the patient’s prognosis is terminal, then the family may assert the personal

right of the incompetent to refuse life-sustaining

treatment without seeking prior appointment of

a guardian or prior judicial review of the decision. In cases where no family is available, a guardian must be appointed by a court. Once a guardian is appointed, there is no need for judicial

involvement in the substantive decision to withhold or withdraw life-sustaining treatment, as long

as the guardian, treating physicians, and prognosis committee are all in agreement. In either situation, however, any party is permitted to petition

for court intervention, and ‘(if there is a disagreement between parties involved in the decisionmaking process, court intervention would be

appropriate” (49).

In the Quinlan case (52), the New Jersey court

did not expressly address the issue of whether

a court-appointed guardian was necessary. The

court stated, however, that if the patient family,

guardian, and attending physicians agree that

there is no reasonable possibility the patient will

emerge from a “comatose condition to a cognitive, sapient state, and that the life-support apparatus should be discontinued, ” then they should

consult with the institution’s “ethics committee. ”

If the ethics committee agrees with the prognosis, then treatment may be withdrawn, judicial

review is not necessary, and there is no attendant

legal liability for any of the involved parties (52).

With regard to nursing home residents, the New

Jersey Supreme Court’s decision in the Conroy

case spelled out special procedures, different from

those articulated in the Quirlan case, because of

‘(the special vulnerability of mentally and physically impaired, elderly persons in nursing homes

and the potential for abuse with unsupervised,

institutional decisionmaking in such homes” (46).

The Conroy decision delineated the following procedures:

1. There must be a determination that the patient is incapable of making the particular decision, and a guardian must be named. This

is required even if the patient has already

been declared legally incompetent and already has a general guardian.

2. If, based on one of the three articulated sur3

4.

rogate standards (see previous Conroy discussion), the guardian believes life-sustaining

treatment should be withheld or withdrawn,

then he must contact the State Ombudsman

for Institutionalized People.

The Ombudsman must investigate the situation and must receive evidence concerning

the patient’s condition from the patient’s physician and from two physicians unaffiliated

with the facility, who must confirm the patient’s medical condition and prognosis.

If the Ombudsman receives sufficient supportive evidence, and concurs in the decision to

withdraw or withhold treatment, then such

action is permitted (46).

Thus, although judicial involvement was not required, the involvement and oversight of a State

agency was required. Decisions handed down

June 24, 1987, by the New Jersey Supreme Court

in the cases of Hilda Peters and Nancy Jobes appear to substantially reduce the categories of patients for whom these procedures are required,

but they remain in effect for some patients.

A series of cases in Massachusetts set out somewhat confusing and unclear criteria for determining when judicial review of surrogate decisions

is necessary. The 1977 Massachusetts case Superintendent of Belchertown State School v. Sai-
Ch. 3—Legal Issues . 121

kewicz (109) concerned a 67-year-old, institutionalized, congenitally retarded man who suffered

from acute and terminal leukemia. The Massachusetts court explicitly rejected the Quinlan procedures and stated that only the court could permit

chemotherapy to be withheld from him:

We take a dim view of any attempt to shift the

ultimate decisionmaking responsibility away from

the duly established courts of proper jurisdiction

to any committee, panel or group, ad hoc or permanent (109).

In the 1978 Massachusetts case In re Dinnerstein (47), the patient was a 67-year-old woman

with Alzheimer’s disease who was in a persistent

vegetative state. Her family and physician sought

prior judicial approval of a decision not to resuscitate the patient should she suffer a respiratory

or cardiac arrest. The court distinguished this case

from the Saikewicz case, because the latter involved treatment that could prolong life—i.e.,

treatment that “contemplates, at the very least,

a remission of symptoms enabling a return towards a normal, functioning, integrated existence.” Since resuscitation does “nothing to cure

or relieve the illness which will have brought the

patient to the threshhold of death,” the court considered a “Do Not Resuscitate” order to be a question for the attending physician, not for a court

of law.

Finally, in a 1980 case, In re Spring (54), the Massachusetts court attempted to clarify its two earlier

opinions. The court articulated a list of factors

that might influence the decision about whether

prior judicial approval of a surrogate decision is

required. The court made no attempt, however,

to categorize which combinations of these factors

would mandate court review. The factors included

the extent of the patient’s mental impairments,

whether a State institution had custody of the patient, the patient’s prognosis with or without the

proposed treatment, the risks of treatment, the

patient’s understanding of these risks, the urgency

of the decision, and the clarity of professional opinion as to what would constitute appropriate medical practice in the given situation. The court also

noted that while “court approval may serve the

useful purpose of resolving a doubtful or disputed

question of law or fact, . . . it does not eliminate

all risk of liability. ”

It is thus evident that the necessity for judicial

review of surrogate decisions is highly variable,

depending on the jurisdiction, the patient’s condition, and the setting of the decision. Different

jurisdictions place different values on the roles

of physicians, families, state agencies, and courts

in decisions to withdraw or withhold life-sustaining treatment from decisionally incapable patients.

This again reflects the tension that underlies these

decisions–a tension between permitting the preferences of previously capable but now decisionally

incapable patients to guide surrogate decisionmaking and protecting decisionally incapable patients

from harmful decisions.

Living Wills

A living will is a document that gives directions

from an individual about how that person wants

decisions about life-sustaining treatments to be

made in the event that he or she becomes decisionally incapable in the future. When living wills

were first devised in 1969, they had no legal sanctioning, but because they enunciated the patient’s

specific treatment preferences, they were considered morally persuasive (118). Even without

specific legal sanctioning, a living will may be considered as a clear expression of the patient wishes

under the substituted judgment standard discussed above (11).

In an attempt to make living wills legally binding and to standardize language, meaning, and

usage, many States have enacted legislation establishing formal requirements for living wills, California was the first State to enact such legislation,

and the name of its statute, the “Natural Death

Act)” has become a generic label for living will

statutes (118). As of January 1987, 38 States6 and

the District of Columbia had enacted such legislation (104).

Generally, State living will statutes provide immunity from legal liability for health care pro6Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Louisiana, Maine, Maryland, Mississippi, Missouri,

Montana, Nevada, New Hampshire, New, Mexico, North Carolina,

Oklahoma, Oregon, South Carolina, Tennessee, Texas, Lltah, \’ermont, trirginia, Ef’ashington, Wrest \’irginia, Wisconsin, and Wyoming (103).
122 ● Life-Sustaining Technologies and the Elderly

viders who withhold or withdraw “life-sustaining”

or “life-prolonging” treatment from a patient who

has a “terminal condition” pursuant to a declaration executed by the patient. Refusal of treatment

through a living will is not considered suicide, and

health care providers who comply with a patient’s

living will are protected from prosecution for aiding and abetting suicide, which is a crime in most

States (5,111). Apart from these general similarities, however, living will statutes vary significantly

from State to State.

Variations in State Living Will Statutes

As discussed earlier, living will statutes in seven

States specifically allow the appointment of a surrogate decisionmaker, whereas living will statutes

in other States do not address this issue. Living

will statutes in different States also vary with respect to the form of the declaration, formalities

involved in its execution, the nature of the care

that can be withheld or withdrawn, and the nature of the patient’s condition warranting nontreatment.

Living will statutes in three States require that

a particular form must be used without any

changes.7 Most States, however, allow individuals to adapt the basic form to reflect their needs

and preferences as long as the State’s requirements for a valid living will are followed (83).

Utah’s living will form (see fig. 3-3) has a specific

entry (item 4) that allows an individual to write

in any personal instructions that do not contradict

the basic intent and requirements of the State act.

All States require that a living will must be signed

in the presence of at least two witnesses, but the

requirements for who may serve as a witness vary.

Because of potential conflicts of interest, living

will statutes in some States do not allow relatives,

persons who might inherit the individual’s estate,

or persons who are responsible for the individual’s care to act as witnesses (83).

Some States require that living wills be notarized to be valid, and some require that they be

filed with a certain State office. In two States, California and Oklahoma, a living will is binding only

— . —

‘California, Idaho, and Oregon (83).

if the patient signs it after he or she is diagnosed

as terminally ill (83).

Living wills may be revoked by the individual

at any time. In most States, they remain in effect

until they are revoked, but in a few States they

must be reaffirmed every few years (83).

Living will statutes in most States specify that

‘(life-sustaining” or “life-prolonging” treatments

may be withheld or withdrawn in certain circumstances, but that “comfort care” and procedures

that are necessary to alleviate pain may not be

withheld or withdrawn. variations in the wording of these provisions in different statutes affect

which specific treatments may be withheld or

withdrawn. About half the States prohibit withholding or withdrawal of nutritional support and

hydration on the basis of a living will (see ch. 8).

In addition, the wording of some State living will

statutes is unclear with regard to antibiotic therapy (see ch. 9).

Most State living will statutes require that an

individual must be “terminally ill” before the living will is implemented, but the definition of “terminally ill” varies in different statutes and is unclear in some. According to one commentator:

The definition of “terminal illness” (in living will

statutes) generally requires diagnosis of an irreversible condition that will lead to death; many

States add “with or without the administration of

life-sustaining treatment.” In many States, death

must be “imminent)” but imminent is often not

defined (83).

The definition of terminal illness in many State

living will statutes excludes persons who are in

a persistent noncognitive state (or coma) and persons suffering from severe dementia (5,83).

Lack of uniformity among State living will statutes means that living wills that are valid in one

State may not be honored in another State. Only

four States–Hawaii, Maine, Maryland, and Montana—specifically recognize living wills from other

States (83).

The Uniform Rights of

the Terminally 111 Act

In 1985, in order to address the lack of uniformity and to correct some perceived anomalies, com-
Ch. 3—Legal Issues ● 123

Figure 3-3.-Utah’s Form for Creating a Living Will

Directive to Physicians and Providers of Medical Services

This directive is made this day of . .

1. I, being of sound mind, willfully and voluntarily make known my

desire that my life not be artificial}’ prolonged by Life-sustaining procedures except as 1 may otherwise provide in this directive.

2. I declare that if at any time 1 should have an injury, disease, or illness, which is certified in writing to be a terminal condition by

two physicians who have personally examined me, and in the opinion of those physicians the application of life-sustaining procedures would serve only to unnaturally’ prolong the moment of my death and to unnaturally postpone or prolong the dying process, I

direct that these procedures be withheld or withdrawn and my death be permitted to occur naturally.

3. I expressly intend this directive to be a final expression of my legal right to refuse medical or surgical treatment and to accept the

consequences from this refusal which shall remain in effect notwithstanding my future inability to give current medical directions to

treating physicians and other providers of medical services.

4.1 understand that the term “life-sustaining procedure” does not include the administration of medication or sustenance, or the

performance of any medical procedure deemed necessary to provide comfort care, or to alleviate pain, except to the extent I specify

below that any of these procedures be considered life-sustaining:

5. I reserve the right to give current medical directions to physicians and other providers of medical services so long as I am able,

even though these directions may conflict with the above written directive that life-sustaining procedures be withheld or withdrawn.

6. I understand the full import of this directive and declare that I am emotionally and mentally competent to make this directive.

Declarant's Signature

— —— — ——— —— — —————

City, County and State of Residence

We witnesses certify that each of us is 18 years of age or older and each personally witnessed the declarant sign or direct the signing

of this directive; that we are acquainted with declarant and believe him to be of sound mind; that the declarant’s desires are as expressed above; that neither of us is a person who signed the above directive on behalf of the declarant; that we are not related to the

declarant by blood or marriage nor are we entitled to any portion of declarant's estate according to the laws of intestate succession of

this state or under any will or codicil of declarant; that we are not directly financially responsible for declarant’s medical care; and

that we are not agents of any health care facility in which the declarant may be a patient at the time of signing this directive.

Signature of Witness Signature of Witness

Address of Witness Address of Witness

— —

SOURCE: Utah Personal Choice and Living Will Act, Utah Code No. 75-2-1101, 1985
124 ● Life-Sustaining Technologies and the Elderly

plexities, and impediments in existing State statutes, the National Conference of Commissioners

on Uniform State Laws approved a Uniform Rights

of the Terminally Ill Act as a model for State legislation (86). The Uniform Act authorizes a person to control decisions about life-sustaining procedures in the event that he or she is in a terminal

condition and is unable to participate in treatment

decisions. It defines “terminal condition” as “an

incurable or irreversible condition that, without

the administration of life-sustaining procedures,

will, in the opinion of the attending physician, result in death within a relatively short time” (86).

“Life-sustaining procedure” is defined as “any medical procedure or intervention that, when administered to a qualified patient, will serve only to

prolong the dying process” (86).

The Uniform Act does not rule out withholding or withdrawing any specific medical procedures, including nutritional support and hydration and antibiotics, on the basis of a living will.

It does state, however:

This (act) does not prohibit any action considered necessary by the attending physician for

comfort care or alleviating pain (86).

It does not address the appointment of a surrogate

decisionmaker.

Reservations About Living Wills

Many different criticisms and reservations about

living wills have been expressed. Some commentators are generally opposed to living wills and

present many arguments against them. Others

generally support the concept of living wills but

express reservations about one or more aspects

of their interpretation and use or about the requirements of living will statutes in particular

States or the Uniform Rights of the Terminally

Ill Act.

Because attitudes about withholding and withdrawing life-sustaining procedures vary greatly,

some aspects of living wills, State living will statutes, and the Uniform Act that are considered

drawbacks by some individuals are considered

positive features by others. People who are generally opposed to withholding or withdrawing lifesustaining treatments, for example, approve of

provisions in living will legislation that limit their

applicability to situations in which death is imminent and provisions that prohibit withholding or

withdrawing nutritional support and hydration.

Conversely, people who support the patient’s right

to refuse any unwanted medical interventions usually disapprove of strict limitations on the situations in which they are applicable (i.e., the definition of terminal illness) or limitations on the types

of procedures that maybe withheld or withdrawn

on the basis of a living will.

One frequently mentioned reservation about living wills is that individuals may not be able to accurately predict what their treatment preferences

will be at an undetermined time in the future. In

this context, some commentators point out that

treatment options may change in the future. They

also point out that it is difficult for anyone to anticipate all aspects of a future situation that might

affect his or her treatment preferences. Thus,

some commentators argue that individuals who

execute a living will when they are healthy because they believe they will not want life-sustaining treatment if they become terminally ill or severely debilitated may change their minds when

actually faced with such a situation (11)67). Supporters of living wills point out that the documents

can always be revoked by an oral declaration of

the patient. Clearly, a comatose or severely demented patient is not capable of revoking his or

her living will. Although some people may regard

this as a problem, others do not.

No court has yet considered the case of a decisionally incapable patient who has a valid living

will but who gives some indication that he or she

wishes to receive treatment that would not otherwise be provided because of the living will. According to one analyst:

Since one of the primary purposes of executing

a living will while competent is to have its provisions carried out should one become incompetent

prior to the time it becomes operative, its provisions should arguably be controlling at that time.

However, it is difficult to imagine a court ordering life-sustaining treatment to be discontinued

in the face of any evidence, however meager, that

the patient no longer desires this (11.1).

Another frequently mentioned reservation about

living wills is whether they are specific enough

to direct decisionmaking. Some commentators
Ch. 3—Legal Issues ● 1 2 5

argue that although a living will may indicate a

patient general treatment preferences, it is often

too general to provide any meaningful guidance

for specific treatment decisions (12,34, 94). For

this reason, some people believe that living wills

should be regarded as advisory (44). Others believe that living wills are or can be sufficiently

specific to direct decisionmaking and that they

should be regarded as the patient’s decision. In

this context, people who oppose living wills argue

that they fail to give adequate consideration to

the physician’s judgment about appropriate medical care for the patient (44).

A third reservation about living wills is that they

only allow individuals to refuse treatment they

do not want. Some people believe that living wills

should also allow individuals to request “maximum

care” or specific treatments they do want to receive in the event that they become decisionally

incapable (60,67).

Some commentators favor a durable power of

attorney over a living will as a method for individuals to ensure that their treatment preferences

are recognized if they become decisionally incapable (108). One reason for this is that under a durable power of attorney, the designated surrogate

can request treatment, as well as refuse it. In addition, a durable power of attorney is not limited

in its applicability to situations in which the patient is terminally ill. Finally, under a durable

power of attorney, the designated surrogate can

be informed of the details of a specific treatment

decision and any newly developed treatment options that the patient could not have been aware

of. Thus, a durable power of attorney meets several criticisms of living wills—i e.) that they do not

allow individuals to request treatment, that they

are limited to situations in which the patient is

terminally ill, that they are not specific enough

to direct decisionmaking, and that an individual

cannot anticipate what treatments may become

available in the future.

One concern of some people who support living wills is whether State living will statutes and

the Uniform Act include adequate provisions for

enforcement. Many State living will statutes and

the Uniform Act require health care providers

who are unwilling to comply with a patient’s living will to transfer the patient to another health

care provider who will comply. In some States,

the failure of a health care provider to comply

with a patient’s living will or to transfer the patient to another health care provider who will comply constitutes unprofessional conduct, and in a

few States, it is a misdemeanor under State law.

In many States, however, failure to comply with

a patient’s living will or to transfer the patient to

another health care provider who will comply carries no penalty (5,83).

The Bartling case (13), discussed earlier, illustrates one aspect of the problem of enforcement

of a patient’s living will. Although Mr. Bartling had

executed a valid living will under the California

Natural Death Act, it did not become operative

because his physicians refused to certify that his

condition was terminal within the definition included in the Act (111).

Some commentators argue that the provisions

of many State living will statutes and the Uniform

Act give physicians too much discretion to determine when and if a patient’s living will becomes

operative and that they therefore allow physicians

to thwart the intentions of patients who have executed valid living wills. Others believe that physician discretion in these matters is necessary and

appropriate.

Anecdotal evidence suggests that in some instances, health care providers disregard a patient’s

living will if one or more members of the patient

family disagree with the patient’s directives and

ask the physician to treat the patient regardless

of his or her advance directive. OTA is not aware

of any court cases that have addressed such a situation.

A final, practical problem with living wills is that

in some circumstances, health care providers may

not be aware that an individual has a living will.

This is particularly likely to occur in emergency

treatment situations, when the patient’s personal

physician is not involved in a treatment decision

for any reason, and for patients who do not have

family or friends to notify the health care provider that the patient has a living will.

The Right To Refuse Treatment Act

Because of dissatisfaction with many provisions

of State living will statutes, the Legal Advisors
126 . Life-Sustaining Technologies and the Elderly

Committee of Concern for Dying proposed the

Right To Refuse Treatment Act (5). This model

act would provide a method for individuals who

are decisionally capable to appoint a surrogate

decisionmaker and specify how they wish to be

treated if they become decisionally incapable. It

would allow individuals to refuse any medical intervention. Moreover, the act provides that the

patient’s directives should be followed ‘(even if the

continuance of the medical procedure or treatment could prevent or postpone the person’s

death” (71). Thus, it is not restricted to situations

in which the patient is terminally ill. Finally the

proposed act provides that failure to comply with

a patient’s directives shall result in “civil liability

and professional disciplinary action, including

license revocation or suspension” (71). It has not

been enacted in any State but is being considered

in 1987 by the Massachusetts legislature.

Future Directions for Living Wills

In spite of the various criticisms and reservations, State living will statutes have provided

legitimacy for the idea of advance directives. They

outline substance and procedure for patients, surrogates, and physicians to follow, so that these

parties can act with some legal guidance and moral

comfort, and so that caregivers are more likely

to respect the wishes of a previously capable patient. Even the process of debating and enacting

such legislation raises public consciousness and

encourages more individuals to consider and document their preferences in advance of incapacity (118).

People who strongly oppose withholding and

withdrawal of life-sustaining treatment are likely

to oppose living wills and living will statutes,

regardless of their specific provisions. Other people who support the patient’s right to refuse unwanted medical interventions in some or all circumstances may welcome further analysis, debate,

and legislative changes that address some of the

problems with living wills.

With regard to the question of whether living

wills are or can be specific enough to direct decisionmaking, two directions for analysis and debate seem promising. First, advance directives that

include both the appointment of a surrogate decisionmaker and explicit documentation of the patient’s treatment preferences ideally could result

in the surrogate applying and interpreting the patient’s preferences in the context of specific treatment situations—including situations the patient

did not or could not have specifically anticipated

(34,91). Further analysis of the legal and ethical

implications and practical difficulties of this approach is needed.

Second, hospitals, nursing homes, and other

health care facilities could develop institutional

policies to guide physicians and others in the application and interpretation of a patient’s living

will with respect to a specific proposed intervention, Further analysis of this approach is also

needed.

The lack of uniformity of State living will statutes could be addressed through Federal legislation to create a national living will law. Such

legislation might include minimum national requirements for executing a valid living will. Because of differences of opinion about living wills,

particularly about the nature of the care that can

be withheld or withdrawn (i.e., the definition of

“life-sustaining treatment”) and the nature of the

patient’s condition warranting nontreatment (i.e.,

the definition of ‘(terminally ill”), such legislation

could face considerable opposition from people

who object to the specific definitions used in the

proposed legislation. Alternatively, individual

States that do not currently recognize a valid living will from another State could be required to

revise their living will statute to do so (62). Both

approaches require further analysis.

As indicated in the Right To Refuse Treatment

Act, one method for enforcing living wills is to

legislate specific penalties for a physician or health

care facility that fails to honor a patient’s living

will. Other methods are also possible. At present,

the Joint Commission on Accreditation of Hospitals (JCAH) does not require hospitals or nursing

homes to have a policy honoring living wills in

order to be certified by JCAH. Nor do Medicare

and Medicaid require the hospitals and nursing

homes that treat Medicare and Medicaid patients

to have a policy honoring living wills. In response

to a 1986 JCAH survey, about 80 percent of hospitals and nursing homes said that they recognize

patients’ living wills, and the remaining 20 percent said they do not (74). Changes in the JCAH,
Ch. 3—Legal Issues . 127

Medicare, and Medicaid requirements to require

health care facilities to have institutional policies

honoring living wills would probably result in

acceptance and implementation of patients’ living wills in many of the facilities that do not recognize them now.

Further analysis is needed of the proposal that

individuals should be allowed to specify in a living will the treatments they do wish to receive if

they become decisionally incapable. The legal and

ethical implications of this proposal and the practical problems associated with its implementation

have received relatively little attention. Especially

problematic are the implications of the proposal

with respect to the broader legal and ethical question of whether people should have a right to medical care (see ch. 2).

Finally, although the concept of living wills is

more widely recognized now than it was a few

years ago, most people have not executed a living

will. The number who do so may increase in the

future, but few observers believe that most patients will ever have a living will. Innovative methods are needed to encourage people who want

to document their treatment preferences to execute a living will. This approach leaves unanswered, however, the questions of how to make

treatment decisions for patients who did not document their treatment preferences in advance and

how to make such decisions for people who were

never decisionally capable and thus could not have

executed a valid living will.

Nor does it address the question of how persons who are decisionally capable but who live

in States that do not have a living will statute can

ensure that their treatment preferences will be

recognized in the event that they become decisionally incapable. As of January 1987, 12 States8

did not have a living will statute. Eleven of these

States had living will legislation under consideration in 1986, but the bills did not pass (104). In

two States that do not have a living will statute—

New York and New Jersey—living wills have been

recognized by State courts as a clear and convincing statement of a patient’s wishes that may be

followed by health care providers without specific judicial authorization (83). The validity of a

living will in the other 10 States that do not have

a living will statute is uncertain.

‘Kentucky, Massachusetts, Michigan, Minnesota, Nebraska, New

Jersey, New York, North Dakota, Ohio, Pennsylvania, Rhode Island,

and South Dakota (103).

NONJUDICIAL CONSULTATIVE SOURCES

Several consultative sources are used, to a Ethics committees may serve any of three differgreater or lesser extent in different facilities and ent functions in hospitals or nursing homes:

jurisdictions, to facilitate, guide, direct, or monitor decisions about life-sustaining treatments. The

legal status of each source with respect to these

decisions is unclear, however, except in jurisdictions where specific case law or statutes authorize a role for them in the decisionmaking process.

Institutional Ethics Committees

As noted in chapter 2, institutional ethics committees are multidisciplinary groups established

within a hospital or nursing home to address ethical dilemmas that arise within the facility. The percentage of hospitals that have an ethics committee has increased rapidly in the past few years.

Now more than 50 percent of hospitals have an

ethics committee (29,39). It is not known how

many nursing homes have an ethics committee.

1. Education—Ethics committees often serve as

a focal point for multidisciplinary discussion

and staff education about ethical dimensions

of medical care.

2. Development of policies and guidelines—

Ethics committees in many facilities develop

and propose institutional guidelines for decisionmaking for incapacitated patients and policies for Do-Not-Resuscitate (DNR) orders,

treatment of handicapped newborns, and

other difficult decisionmaking situations.

3. Consultation and case review-Ethics committees sometimes serve as a forum for discussing and resolving ethical and other concerns

about specific cases; they may advise staff,

families, or even patients about difficult treatment decisions; in some facilities they also re -
128 ● Life-Sustaining Technologies and the Elderly

view treatment decisions and decisionmaking practices to ensure that the interests of

all parties, especially decisionally incapable

patients, have been represented (30).

The degree to which an institutional ethics committee serves each of these functions varies in

different hospitals and nursing homes.

Despite widespread endorsement of ethics committees and the rapid growth in their numbers

over the past few years, many questions remain

about their role in medical decisionmaking vis-avis the legal system. One noncontroversial way

that some ethics committees relate to the legal system is by providing physicians and other hospital

or nursing home staff with information about recent developments in case and statutory law that

are relevant to treatment decisions or decisionmaking procedures. Another relatively noncontroversial way that some ethics committees relate to the legal system is by advising health care

providers that certain patients may need a legal

guardian or that certain treatment decisions may

require judicial review (72).

Far more controversial is the question of when,

if ever, an ethics committee can function as a substitute for a court in a case that might otherwise

require judicial involvement. The concept of ethics

committees first received public attention as a result of the 1976 decision of the new Jersey Supreme Court in the Quinlan case, in which the

court ruled that the decision to withdraw life-sustaining treatment could be made without judicial

review if the institution’s “ethics committee”

agreed that there was no possibility that Karen

Quinlan would return to ‘(a cognitive, sapient state”

(52). Despite its specific reference to an “ethics

committee” and its statement that these committees could serve as “a more appropriate forum”

than a court of law for the review of such ethical

dilemmas (52), the Quinlan court actually assigned

the committee a purely prognostic role—to determine whether there was any chance of Karen

Quinlan’s recovery (72), In the 1983 case, In re

Colyer (45), the Washington State court delineated

a similar role for what it referred to as a “prognosis committee” (2).

State courts have considered at least three cases

in which institutional ethics committees were involved in aspects of treatment decisions other than

establishing the patient’s prognosis (116). In these

three cases, the courts reached three different

conclusions about the relationship between ethics

committees and the courts.

In the 1977Saikewicz case (109), the Massachusetts court indicated that ethics committee determinations may be admitted into a court case as

evidence of the physician’s good faith and proper

standards of medical care (116). In contrast, in

the 1984 Georgia case In re L.H.R. (50), the court

ignored the determination of the ethics committee and said that there was no need for ethics committee consultation in this case or other similar

cases. The court stated:

In the case of incompetent adults who are terminally ill, in a chronic vegetative state with no

reasonable possibility of regaining cognitive function, we find that the family of the adult or the

legal guardian may make the decision to terminate

life-support systems without prior judicial approval or consultation of an ethics committee (50).

Finally, in the 1984 Minnesota case In re Torres

(56), the court considered the determination of

several ethics committees that had been consulted

and used them as evidence that a correct treatment decision had been made (116). In this case,

the court said that ethics committees “are uniquely

suited to provide guidance to physicians, families,

and guardians when ethical dilemmas arise” (56)

and that an ethics committee’s determination that

life support could be removed would eliminate

the need for a court order.

It has been suggested that ethics committee review and approval of treatment decisions may

minimize liability and reduce malpractice suits

against the health care providers and facilities involved in such decisions (36)42,93,97). On the one

hand, this suggestion might be taken to imply that

the decision of an ethics committee would be accepted by a court as correct and would eliminate

the need for court review, as in In re Torres (56).

Some observers believe that ethics committees

should not substitute for courts in this way because ethics committees’ deliberations do not include the legal safeguards inherent in a court proceeding. According to one observer:
Ch. 3—Legal Issues Ž 129

Deferring to committees on the ultimate question of whether treatment should be forgone

is . . . inappropriate. Committees operate under

no uniform set of rules, and have no formal accountability. To defer to them on the resolution

of cases involving foregoing treatment would be

to carve out a class of important, life-and-death

disputes that are deprived of any access to real

court review: the court would merely rubberstamp the committee (116).

On the other hand, ethics committee review and

approval of a treatment decision might be expected to minimize liability and reduce malpractice suits because ethics committees provide an

institutional forum for discussion of treatment decisions. By involving all interested parties, such

committees may decrease the possibility of misunderstanding or dissatisfaction with the final decision and thus reduce the chance that one of the

parties will take the case to court (36).

A third possibility is that ethics committee review and approval of a treatment decision might

decrease the possibility of a successful law suit

against a health care provider or facility because

the court would consider the involvement of the

ethics committee as evidence of the good intentions of the health care provider in the decisionmaking process, as in the Saikewicz case (109).

Whether institutional ethics committees actually reduce legal liability or the frequency of malpractice suits against health care providers or facilities involved in decisions about life-sustaining

treatments is a question that cannot be answered

with available data. Further analysis and research

on the relationship between ethics committees and

the legal system are needed.

Ombudsmen

“Ombudsman” is a Swedish term for a person

who acts as a citizen representative. Under the

Older Americans Act, States are required to have

a Long-Term Care ombudsman program. The ombudsman serves as an advocate for nursing home

residents and is available to oversee and enforce

their rights. Ombudsmen investigate complaints,

and if necessary, they can initiate judicial proceedings. As discussed earlier, the Conroy court, sensitive to the potential for abuse in decisions to withhold or withdraw life-sustaining treatment from

incompetent nursing home residents, ruled that

the State Ombudsman for Institutionalized People must investigate and approve decisions to withhold or withdraw treatment from nursing home

residents (46). This decision (as modified by 1987

decisions of the Court) applies only in New Jersey, and courts in other States have not defined

a role for the State ombudsman in such decisions.

Professional Societies

Professional societies utilize the combined expertise, experience, and prestige of their members to develop and promote policies that affect

the delivery of health care in general and all

aspects of medical decisionmaking. In 1986, two

professional organizations-the Los Angeles County

Medical and Bar Associations–issued a joint policy statement regarding the withholding or withdrawal of life-sustaining medical treatment, for

example (75). This collaborative effort between

attorneys and physicians was intended to assist

physicians faced with the legal and ethical dilemmas of life-support decisions and to educate attorneys and patients as to the issues presented

by advanced medical technology.

Of more national prominence was the March

1986 policy statement of the American Medical

Association (AMA) that endorsed the right of a

patient or the patient’s surrogate, if available, to

make decisions about life-sustaining treatment and

declared that artificial nutrition and hydration

constitute treatment that can be discontinued in

appropriate circumstances (l). Although this AMA

statement is not binding on anyone, it is a strong

statement from a prestigious organization, and

it wiIl most likely influence courts and legislators

in their future decisions. Policy statements of the

American Nurses Association; of national, State,

and local hospital, nursing home, home care, and

hospice associations; of the professional societies

that represent physician specialists in critical care

medicine and each of the five technologies discussed in this report; and of societies that represent allied health professionals who provide each

of the technologies can also be expected to influence such decisions.
130 . Life-Sustaining Technologies and the Elderly

Institutional Policies for

Decisionmaking

As discussed throughout this report, hospitals,

nursing homes, and other health care facilities

have developed institutional policies that define

how decisions about life-sustaining treatments are

to be made in the facility. Most such policies

address decisions about resuscitation and DNR

orders, but some facilities have limited treatment

policies that apply to decisions about all kinds of

life-sustaining treatments.

The relationship between institutional policies

for decisionmaking and the legal system is unclear.

CRIMINAL

Physicians, like all professionals, are required

by law to perform their duties according to certain standards of professionalism. If they fall below those standards and thereby harm their patients, they may be liable under civil law—that

portion of the law that deals with relationships

among individuals and groups. Criminal law—the

portion of the law dealing with acts against the

state defined in the criminal codes of the States

and the United States and punishable by penalties described in the codes—has rarely been used

for regulating physicians’ conduct when they are

engaged in good faith efforts to treat patients

(5,118).

The few courts that have confronted the issue

of using the criminal law to review whether a physician has properly practiced his or her profession have expressed great distaste for using the

law for this purpose (5). In the 1976 Massachusetts case Commonwealth v. Edelin (28), for example, the court makes clear that only in the most

extraordinary cases should the criminal law be

used as a way to review the actions of physicians

performing “professional tasks” and that the

presumptions against criminality are very much

in favor of a physician who acts in “good faith.”

In considering cases in which prior judicial approval for withholding treatment is being requested, several courts have considered and rejected the possibility of a criminal charge. In the

1980 Massachusetts case In re Spring (54), for exWhether such policies provide legal protection for

health care providers who follow them is not

known. Moreover, there is disagreement about

whether institutional policies for decisionmaking

increase some legal risks for providers or facilities. Other questions also arise. What are the legal implications for facilities that institute a policy honoring living wills in States that do not have

a living will statute, for example? An OTA report

addressing these questions and other aspects of

institutional policies for decisionmaking is in process and will be released in early 1988.

LIABILITY

ample, the court briefly discussed the concern

physicians might have regarding criminal liability and concluded that:

Action taken without judicial approval might be

the subject of either criminal or civil liability. Little need be said about criminal liability: there is

precious little precedent, and what there is suggests that the doctor will be protected if he acts

on a good faith judgment that is not grievously

unreasonable by medical standards (.54).

There is only one reported case involving withholding or withdrawing life-sustaining treatment

in which physicians have actually been accused

of a crime—the 1983 California case, Barber v.

Superior Court (10). That case concerned a patient, Clarence Herbert, who suffered a cardiac

arrest following surgery and was placed on a mechanical ventilator. He had severe brain damage

as a result of the cardiac arrest, and his physicians, Neil Barber and Robert Nedjl, informed his

family that he was not expected to recover from

his comatose condition. The family requested that

he be removed from the ventilator. Two days later,

when he had not died, the family asked that intravenous nutritional support and hydration be

withdrawn. The physicians complied, and Mr. Herbert died in 6 days,

Mr. Herbert’s physicians were subsequently

charged with murder. The California magistrate

who heard the evidence concluded that the physicians did not cause Mr. Herbert’s death; that the
Ch. 3—Legal Issues • 131

physicians acted in good faith and exercised sound

medical judgment; and that their state of mind

did not constitute malice as defined in the California statutes on murder. Therefore, the charges

were dismissed. The State appealed this decision

to a Superior Court judge, who reinstated the

charges, finding that regardless of the physicians

good faith and exercise of sound judgment, their

actions were unlawful.

The California Court of Appeal overturned the

Superior Court ruling and found that charges of

murder could not be brought against the doctors.

The Court of Appeal commented:

It appears to us that a murder prosecution is

a poor way to design an ethical and moral code

for doctors who are faced with decisions concerning the use of costly and extraordinary (life support) equipment (10).

The court concluded that cessation of life-support measures is not an “affirmative act” but is

an “omission of further treatment” (10). It recognized that one can commit a crime by omission

only if there is a duty to act. The question in the

Barber case involved determining the physician’s

duty to an irreversibly comatose patient. The court

concluded that “a physician has no duty to continue treatment, once it has proven to be ineffective” and that in a case in which the physician

has made a “hopeless prognosis” based on accepted

medical practice, and the patient’s family wishes

to discontinue treatment, such cessation of treatment, though intentional and with the knowledge

the patient would die, does not constitute an unlawful failure to perform a legal duty (10).

The court recognized that the difficult issues

are who is to determine that a patient prognosis

is hopeless and who is authorized to direct termination of treatment. It declined to give specific

answers beyond indicating that such determinations are ‘(essentially medical” and need to be made

based on facts unique to each case (10).

The court did provide a general guideline for

decisions about withholding or withdrawing lifesustaining treatment by stating that the benefits

of treatment should exceed the burdens. Thus,

the court said, the burdens of minimally painful

or intrusive treatment may sometimes be disproportionate to the benefits if the prognosis is virtually hopeless. It therefore becomes the physician’s task to make a diagnosis and prognosis based

on accepted medical practice. Where possible, the

patient should be the ultimate decisionmaker.

When the patient is incapable, however, the family members are to make the decision based on

what they believe the patient would want if able

to express his or her own wishes (10).

Since the Barber case was the first instance in

which physicians were charged with homicide for

withholding or withdrawing medical care, it has

caused tremendous concern within the medical

community. Given this concern, a number of

points must be made. First, the physicians prevailed; the charges against them were dismissed.

Although one should not minimize the emotional

toll legal proceedings take on the defendants, the

reality is that the court supported the physicians

actions. Second, the Barber case never actually

came to trial. All the legal proceedings that took

place were designed to determine if the prosecutor could convict these physicians of homicide if

he could prove the facts he alleged. The court did

not conclude that the prosecution could not prove

the facts, but rather that, even if proven, the facts

did not support a charge of homicide. Third, the

case was primarily concerned with the issue of

the cessation of artificial nutrition and hydration,

which was (and is) the most controversial area

of the law. Even the district attorney was unconcerned about the removal of the ventilator. Fourth,

it was family members who requested withdrawal,

not the patient. There has never been a criminal

action based on a patient’s request to withhold

or withdraw treatment. Finally, the court was very

supportive of physicians, and expressed its displeasure at the use of the criminal process in this

most sensitive area. It is extremely unlikely, after

the Barber case, that any good faith cessation of

medical treatment with the patient’s or family’s

concurrence, could support a charge of homicide

in the jurisdiction of the California court (.5).
132 . Life-Sustaining Technologies and the Elderly

FINDINGS AND IMPLICATIONS

The common law right of self determination

guarantees the basic right of every individual to

determine what shall be done with his or her body.

The constitutional right of privacy protects the

individual’s right to make personal medical decisions. Although the U.S. Supreme Court has not

addressed the question of whether the right of

privacy includes a right to refuse life-sustaining

medical treatments, several State courts have held

that it does. Taken together, the right of selfdetermination and the right of privacy support

the right of individuals to be informed about

and to consent to or refuse proposed medical

treatments.

The legal doctrine of informed consent requires

physicians to disclose to a patient his or her diagnosis and prognosis, the proposed treatment, alternate treatments, the risk and benefits of all options, and the consequences of not intervening

at all. With this information, the patient is expected

to make a decision and instruct the physician how

to proceed.

Exceptions to the informed consent requirement

have been recognized for several situations, including emergencies and waiver situations in

which the patient has expressed a desire not to

receive the information. Some observers believe

that elderly people are more likely than younger

people to waive their right to informed consent.

These observers argue that waivers of informed

consent should require an explicit statement by

the patient that he or she does not wish to receive the information and should not be based

only on a tacit understanding between the patient

and the physician.

Many problems interfere with implementation

of the legal doctrine of informed consent. They

include the fast pace of modern medical practice,

the training and socialization of physicians in medical school, internship, and residency, and assumptions by some physicians and other health care

providers that elderly patients in particular will

not be able to understand the information.

Moreover, research indicates that informed consent as envisioned in the law is largely absent from

clinical practice, that patients are seldom given

information about proposed treatments before a

decision about the treatment is made, and that

even when patients are fully informed about proposed treatments, they act as if the doctor should

make the decision (73). Research also indicates that

the model of medical decisionmaking that underlies the doctrine of informed consent–a model

that involves discrete decision points at which

treatment options are clear and one can be

selected-may be invalid in some clinical situations.

Further analysis of the applicability of the informed consent doctrine to various decisionmaking situations is needed.

A patient’s legal right to refuse unwanted medical treatment is a corollary of the right to consent to medical treatment. Strong as it may be however, the patient right to refuse treatment is not

absolute. Four societal interests have been identified by courts as potentially worthy of overriding a patient’s right to refuse treatment:

1. the preservation of human life,

2. the protection of third parties,

3. the prevention of suicide, and

4. the protection of the ethical integrity of the

medical profession.

Only rarely, however, have societal interests been

used by courts to justify the use of unwanted medical treatments.

With regard to the societal interest in the protection of the ethical integrity of the medical

profession, however, courts have handed down

contradictory rulings about whether health care

providers and facilities must participate in withholding or withdrawing treatment when such participation violates their convictions. Further legal

debate on this question is expected.

In practice, hospital patients who wish to refuse medical treatment confront a strong institutional commitment to curing disease and preserving life. Hospital and nursing home patients may

experience a feeling of loss of control associated

with institutionalization and may fear that they

will be abandoned by their caregivers if they refuse recommended treatment. Finally, although

American law presumes that adults are compe-
Ch. 3—Legal Issues ● 133

tent unless a court has determined that they are

incompetent, health care providers and others

often assume that elderly persons, particularly

those who are severely ill or debilitated, are incapable of making decisions. For each of these

reasons, patients may experience difficulty in

refusing unwanted treatment.

A great deal of confusion and controversy surrounds the issue of determining decisionmaking

capacity in persons whose decisionmaking capacity is questionable or fluctuating. It is generally

agreed that decisionmaking capacity should be

determined in relation to a specific treatment decision and that the tests of decisionmaking capacity should be based on the values of patient autonomy and patient well-being. Yet the specific

tests that have been proposed reflect differing societal judgments about the relative importance of

these two values.

There is also controversy about the appropriate role of the courts in determining decisionmaking capacity. Some observers believe that it is seldom necessary or advisable to turn to the courts

for a determination of decisionmaking capacity.

Others believe that a court hearing is the appropriate forum for such determinations, especially

when health care providers disagree among themselves or disagree with family members about a

patient’s decisionmaking capacity.

Courts have ruled that elderly people who are

decisionally capable have the same rights as other

adults to consent to or refuse medical treatment.

Elderly people who are decisionally incapable are

also considered to have the same fundamental

rights. Case law and statutes in different States

provide several methods for designating a surrogate decisionmaker for persons who are decisionally incapable. These include durable power

of attorney, guardianship, and family consent statutes. In addition, some living will statutes allow

individuals to appoint a surrogate decisionmaker

in advance of becoming decisionally incapable. In

practice, however, most decisionally incapable

patients do not have a surrogate designated by

any of these methods, and health care providers

usually obtain consent for proposed treatments

through informal discussions with family members or friends of the patient. Although this informal method frequently works well, it is potentially fraught with difficulties if family members

or others disagree about who should be the surrogate decisionmaker or about whether a specific

treatment should be provided. Increased use of

formal methods for designating a surrogate decisionmaker could provide greater protection from

legal liability for health care providers and at the

same time provide greater assurance that someone is explicitly designated to exercise the patient

right to consent to or refuse proposed treatments.

Courts have identified two standards for surrogate decisions –best interests and substituted

judgment—again based on the values of patient

autonomy and patient well-being. The substituted

judgment standard requires the surrogate to use

the patient’s personal preferences and values for

health care decisions. The best interests standard requires the surrogate to make a decision from

the perspective of a hypothetical “reasonable person)” considering factors such as the usefulness

or futility of the proposed intervention and its

risks, benefits, and burdens.

Courts have generally preferred the substituted

judgment standard, provided there is evidence of

the patient’s preferences. Courts indifferent States

have differed, however, on what constitutes acceptable evidence. Prior declarations of patients

made while they were still decisionally capable,

including living wills, have been regarded as the

best evidence of the individual’s preferences. In

the absence of a prior declaration, courts have

looked to the values of the patient and opinions

of relatives and friends about the individual’s likely

preferences.

Whether a court must review surrogate decisions for decisionally incapable patients varies in

different States as a result of court rulings in each

State. Whereas some courts have determined that

judicial review is required at least in some circumstances, other courts have ruled that these decisions may be made without court review as long

as certain procedures are followed. Inconsistencies in court rulings on this issue result in uncertainty among health care providers about the required decisionmaking procedures and intensify

their fear of legal liability when life-sustaining

treatment is withheld or withdrawn.
134 . Life-Sustaining Technologies and the Elderly

Living wills provide an explicit expression of a

patient’s preferences about life-sustaining treatments. Although 38 States and the District of Columbia have now enacted legislation authorizing

living wills, there is considerable variation among

States in the form and procedures required to execute a valid living will, the specific medical treatments that may be withheld or withdrawn pursuant to a living will, and the condition of the

patient that warrants nontreatment (i.e., the definition of terminal illness). Because of differences

among States in the provisions of their living will

statutes, living wills that are valid in one State may

not be recognized in another State. Only four

States specifically recognize living wills from other

States.

In addition to problems with living wills that

may arise because of the lack of uniformity among

States, reservations about living wills include the

concern that individuals may not be able to accurately predict what their treatment preferences

will beat an undetermined time in the future, that

living wills are not sufficiently specific to direct

treatment decisions and that they do not allow

individuals to request as well as refuse treatments.

A durable power of attorney for health care can

meet each of these objections, and many commentators favor the durable power of attorney over

the living will as a method of assuring that an individual’s treatment preferences are known if he

or she becomes decisionally incapable. Some commentators suggest that the best approach may be

a living will that includes the designation of a surrogate decisionmaker. Living will statutes in a few

States specifically allow the designation of a surrogate decisionmaker.

Guidance in decisions about withholding or

withdrawing life-sustaining treatment is provided

in some circumstances by nonjudicial consultative sources. These sources include ethics committees in some hospitals and nursing homes,

guidelines for decisionmaking issued by professional societies and associations that represent

health care facilities, and institutional policies for

decisionmaking. Many questions about the specific legal import of these sources remain unanswered.

There is general agreement that the criminal

law is not an appropriate context for judicial review of physicians’ decisions about life-sustaining

treatment. In the single case in which physicians

have been accused of a crime for withdrawing

life-sustaining treatment, Barber v. Superior Court,

the California Court of Appeal dismissed the

charges, concluding that withdrawal of treatment

can only be a crime if the physician has a duty

to act, and that a physician does not have a duty

to act if the treatment is ineffective, the prognosis is hopeless, and the family wishes to discontinue treatment. The Barber court and several

other courts have expressed great distaste for

using criminal law to review the decisions of physicians acting in good faith.

From the discussion in this chapter, it is clear

that, in general, decisionally capable adults have

a legal right to consent to or refuse proposed medical treatments and that such treatments may be

legally withheld or withdrawn from decisionally

incapable adults under some circumstances. Nevertheless, there is uncertainty and disagreement

about some aspects of the law relevant to these

treatment decisions. Areas of consensus and consistency between States appear to be increasing.

Yet inconsistencies in court rulings and statutes

in different States, and sometimes in court rulings in the same State, make it understandable

that health care providers are unsure about their

legal obligations to patients and their permissible

range of action.

In addition to the fundamental question as to

whether the constitutional right of privacy includes a right to refuse life-sustaining treatment

and to the very controversial legal issues pertaining to withholding or withdrawing nutritional support and hydration that are discussed in chapter

8, the primary areas of uncertainty are:

● the application of informed consent doctrine

in clinical situations in which decisionmaking is virtually continuous and discrete decision points are not obvious,

● the appropriate criteria and procedures for

determining decisionmaking capacity,

● the methods by which individuals may express their preferences about life-sustaining
Ch. 3—Legal Issues . 135

treatments in the event that they become decisionally incapable in the future, and

● the appropriate criteria and procedures for

surrogate decisionmaking for individuals who

have not executed advance directives.

CHAPTER 3

1. American Medical Association, Council on Ethical and Judicial Affairs, “Statement on Withholding or Withdrawing Life-Prolonging Treatments, ”

Chicago, IL, Mar. 15, 1986.

2. Annas, G.J., “Legal Aspects of Ethics Committees,”

Institutional Ethics Committees and Health Care

Decision Making, R.E. Cranford and A.E. Doudera

(eds.) (Ann Arbor, MI: Health Administration

Press, 1984).

3. Annas, G. J., “Elizabeth Bouvia: Whose Space Is

This Anyway?” Hastings Center Report 16(2):

24-25, 1986.

4. Annas, G. J., and Densberger, J. E., “Competence

To Refuse Medical Treatment: Autonomy vs.

Paternalism, ” Toledo Law Review 15:561-596,

1984.

5. Annas, G. J., and L.H. Glantz, “Withholding and

Withdrawing of Life-Sustaining Treatment for

Elderly Incompetent Patients: A Review of Court

Decisions and Legislative Approaches,” prepared

for the Office of Technology Assessment, U.S.

Congress, Washington, DC, December 1985.

6. Annas, G. J., Glantz, L. H., and Katz, B. F., T h e

Rights of Doctors, Nurses and Allied Health Professionals (New York, NY: Avon, 1981).

7. Applebaum, P. S., and Roth, L. H., “Competency To

Consent to Research,” Archives of General Psychiatry 39:951-958, 1982.

8. Applebaum, P. S., and Roth, L. H., “Treatment of

Incompetent Patients” (letter to the editor), Journal of the American Medical Association 251(19):

2515, 1984.

9. Atkinson, G., ‘(Towards a Due Process Perspective in Conservatorship Proceedings for the Aged, ”

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10. Barber v. Superior Court, 147 Cal. App. 3d 1006,

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11. Baron, C., “The Case for the Courts,” Journal of

the American Geriatrics Society 32(10):734-738,

1984.

12. Barondess, J. A., “Prolonging What? Ethical Issues

in Terminal Care, ” Journal of the American Medica] Association 249(15):2073, 1983.

13. Bartling v. Superior Court, 163 Cal. App. 3d 186,

209 Cal. Rptr. 220 (Ct. App., 1984).

Each of these areas requires further analysis, discussion, and debate involving both legal experts

and the physicians, nurses, and other health care

providers who care for critically and terminally

ill and severely debilitated patients on a daily basis.

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chapter 4

Ethical Issues
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................141

The Relationship Between Ethics and Law . . . . . . . . . . . . . . . . . . . . . . . .......141

Ethics in Clinical Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...............141

Ethical Issues in the Care and Treatment of Individual Patients . .............142

Withholding. Withdrawing . . . . . . . . . . . . . . . . . . . . . . ....................142

Direct v. Indirect Effects . . . . . . . . . . . . . . . . . . . . . ........................143

Letting Die and Killing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................143

ordinary and Extraordinary Means of Treatment . . . . . . . . . . . . . . . . . . . . . ...145

Levels and Kinds of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....147

Major Considerations in a Typology of Withdrawing and Withholding

Life-Sustaining Medical Treatment. . . . . . . . . . . . . . . . . . . . . . ..............149

Defining Suicide and Its Application to Cases of Elderly People Receiving

Life-Sustaining Technologies. . . . . . . . . . . . . . . . . . . . . . ...................149

Ethical Implications of Distributing Life-Sustaining Technologies. . . ...........151

The Interface Between the Ethics and Economics of Distributive Justice .. ...152

Major Theories of Distributive Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......152

Implications of Theories of Justice for the Use of Life-Sustaining

Technologies With the Ill Elderly. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....153

Consideration of Age as a Criterion in the Allocation

of Technological Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .156

Findings and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ....161

Chapter 4 References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .......162
Chapter 4

Ethical Issues

INTRODUCTION

Modern science has brought about dramatic

changes in medical care, particularly since the

early 1950s, and technology now gives people considerable power to alter both the quality and

length of human life. However, the use of lifesustaining technologies such as the five examined

in this assessment—resuscitation, mechanical ventilation, dialysis, nutritional support, and lifesustaining antibiotics—raises many important

ethical questions. Society thus finds itself asking

difficult questions about individual rights, the

processes of living and dying, and the proper distribution of technological resources. The use of

life-sustaining technologies necessitates the development of an ethical vision that is acute enough

to discern the needs and wants of particular individuals and yet wide-ranging enough to guide contemporary public policy. This chapter explains

some of the major ethical debates that have occurred in the public, academic, and clinical domains about these issues.

Ethical analysis can help clarify ethical dilemmas.

Such dilemmas occur where any possible solution

to a problem seems to involve some type of harm

or where it only seems possible to achieve a good

outcome through the use of unethical means. In

these difficult cases, ethical analysis may not point

definitively to one and only one “right” answer,

but it can clarify competing systems of justification for certain courses of action. It can also show

where different principles or methodologies for

decisionmaking are needed. (For an international

list of organizations specializing in ethical analysis, see app. D.)

The Relationship Between

Ethics and Law

It is a fact of life in our society that an emerging

moral or ethical consensus may not be embodied

in existing statutes and that the legal system may

actually pose barriers to the resolution of ethical

dilemmas. Nonetheless, legal cases in which the

rights and interests of competing parties are adjudicated provide public access to the analysis of

competing points of view. These points of view

often consist of important ethical arguments.

The growth of newer types of deliberative bodies such as institutional ethics committees provides

an important alternative or adjunct to the legal

system. A terminally ill elderly person, for example, cannot wait for the results of a protracted

legal battle to evaluate his or her claims and preferences for or against life-sustaining treatment. In

addition, the establishment of a legal precedent

concerning one use of a particular life-sustaining

technology may not be relevant or meaningful in

other cases. Certain features of the legal system

may make it difficult to resolve the ethical dilemmas associated with the use of life-sustaining technologies.

Ethics in Clinical Practice

The growing role of ethicists and ethics committees in health care settings is an important development. Several State courts have specified a

role for institutional ethics committees in all decisions to withdraw or withhold life-sustaining

Photo credit: Hennepin County Medical Center, Minneapolis, MN

Biomedical ethics committee at work.

141
142 . Life-Sustaining Technologies and the Elderly

treatment (see ch. 3). Ethics committees can pro- at times of crisis. Reservations about the utility

vide an opportunity for multidisciplinary input of ethicists and ethics committees usually center

regarding problems that require several types of on the way in which their input will be used and

expertise and their membership can represent the the amount of authority that will be given to their

plurality of values present in American society. recommendations. Guidelines about the roles of

Committee deliberations can build consensus that ethicists and ethics committees are still in an early

may also be helpful to patients and their families phase of development (17).

ETHICAL ISSUES IN THE CARE AND TREATMENT

OF INDIVIDUAL PATIENTS1

Four ethical principles are of great use in analyzing dilemmas concerning the use of life-sustaining

technologies:

1.

2.

3.

4.

Beneficence = being of benefit to others;

Nonmaleficence = not harming—including

not killing-others (sometimes viewed as a

subset of the principle of beneficence) (26);

Respect for persons = treating others as

ends in themselves and showing regard for

their autonomy (sometimes called the principle of respect for persons or the principle

of autonomy); and

Justice = treating others fairly according to

principles of equity in the distribution of benefits and burdens.

Other independent or derivative principles have

been recognized, including privacy, truthfulness,

and fidelity in keeping promises and contracts

(6,42).

Because of the strong prohibitions that are derived from the second principle, which in the

Hippocratic tradition of medicine is interpreted

as “first or at least do no harm, ” both suicide and

mercy killing are generally prohibited in our society. Death is viewed as a major-often the major—harm, and thus deliberately engaging in actions that bring about, hasten, or cause death is

an obvious wrong as a violation of the principle

of nonmaleficence. This principle is so important

that most traditions tend to justify killing persons

only in self defense, war, and capital punishment.

Most traditions tend to view acts that cause the

deaths of innocent persons, even those who are

suffering greatly, as justifiable only if they do not

involve the direct killing of those persons.

‘This section is based in part on a paper prepared for OTA by

James F. Childress, 1985 (14).

In decisionmaking about life-sustaining technologies, distinctions are sometimes made between

withholding v. withdrawing treatment, direct v.

indirect effects of actions, letting die and killing,

and ordinary and extraordinary means of treatment. These distinctions are analyzed below.

Withholding v. Withdrawing

Physicians, nurses and other health care

providers often feel that the distinction between

withholding (not starting) and withdrawing (stopping) life-sustaining technologies is very important, even though it is hard to defend in terms

of various ethical traditions. The following case

illustrates the appeal of this distinction:
Ch. 4—Ethical Issues • 143
144 ● Life-Sustaining Technologies and the Elderly

This case cannot be brought under the rule of

double effect for “allowed deaths”; the medication was not given to relieve pain at the risk of

hastening death. It was not a case of letting the

patient die but rather one of directly and actively

killing the patient at his request by the administration of toxic drugs.

Sometimes the distinction between killing and

letting die is discussed under other headings, such

as omission and commission or passive and active, because it is argued that more descriptive

terms are needed to replace “killing,” which most

people tend to view as wrong, and “letting die,”

which most tend to view as right. Thus, the President’s Commission (30) used the descriptive

phrases: actions that lead to death and omissions

that lead to death. Whatever terms are employed,

the issues are the same.

Most ethical traditions have a rule prohibiting

the direct, active killing of patients, even though

they disagree about the foundations of that rule.

Some traditions hold that it is intrinsically wrong

to kill innocent persons; others hold that it is not

intrinsically and absolutely wrong to do so, for

example, when the suffering patient requests

“mercy killing,” but that a rule prohibiting mercy

killing is necessary to prevent bad consequences

for future patients and ultimately for the society.

Thus, many people who deny that acts of killing

innocent persons are always wrong still support

a rule of practice that prohibits such acts because

of the dangers of abuse, loss of trust between professionals and patients, and subversion of the societal commitment to the protection of human life.

Some critics hold that there is no intrinsic ethical difference between killing and letting die and

that “letting nature take its course” is not appropriate when interventions are available. These

critics argue that whether there is an ethical difference between killing and letting die will depend

on the circumstances of the case. Thus, in a widely

discussed article, one philosopher contends that

the “bare difference” between acts of killing and

acts (omissions) of letting die is not in itself an ethically relevant difference. He argues his point by

sketching two cases that differ only in that one

involves killing, while the other involves allowing to die, and asks whether we would make different ethical judgments about the cases (31). In those

cases—killing a 6-year-old cousin or letting him

die to gain a large inheritance—both acts are

equally reprehensible because of the agent’s motives, ends, and actions or inactions.

But reprehensible illustrations may obscure the

significance of the distinction in other cases where

agents are trying to benefit (rather than harm)

patients and where they are also concerned about

broader social consequences and protecting society’s commitment not to let innocent people be

killed. Although the distinction between killing and

letting die may not be important in some contexts,

this distinction may be important in other cases,

because of other moral principles and rules.

The prohibition against direct, active killing of

innocent persons is built into the legal system as

well as into professional codes and religious and

humanistic traditions. Arguments to change this

rule often appeal to cases of extreme, intractable

pain and suffering, usually related to a slow death

from cancer. According to critics of the rule, a

failure to kill a patient in circumstances where

the patient pleads for ‘(mercy” is cruel and inhumane.

Several counterarguments have been offered,

however. First, it is not clear that there are many

cases of uncontrollable pain and suffering; in the

medical setting (perhaps in contrast to the battlefield or an accident) pain can usually be controlled,

although its relief may hasten death (which is

acceptable according to the rule of double effect).

A second argument is that permitting mercy kill-
Ch. 4—Ethical Issues ● 145

ing will divert attention from finding methods

short of killing, for example, institutional and social options such as hospices that can reduce the

pain and suffering to tolerable levels and permit

compassionate social and personal attention from

the community.

Since the need to change society’s standard in

order to allow mercy killing to relieve pain and

suffering is uncertain, and since such a change

presents potential dangers to society through

abuse, decline of trust within medical relationships, and the threat to the principle of nonmaleficence that prohibits killing, there do not appear

to be sufficient reasons to change the prohibition

against killing. Some people argue that the burden of proof should be on those who would maintain a rule that infringes on the principle of autonomy. However, it is plausible to argue that the

policy and practice of prohibiting killing (while

accepting some cases of allowed deaths) has served

society well, though not perfectly, and that the

burden of proof should rest on those who argue

for changing it. Many commentators contend that

this burden has not been met (6).

In addition, there are ways to ‘{accept” some exceptional cases of mercy killing without changing the current legal and social prohibition—e g.,

prosecutorial discretion, jury findings of not guilty

by reason of temporary insanity, and recognition

of “mercy” as a factor that mitigates punishment

even though it may not exculpate the agent. Even

with these informal exceptions, the rule may serve

as a valuable reminder of the principle of nonmaleficence (first of all do no harm). Although

some people argue that a regulatory scheme to

assure that the patient really wants to die would

prevent abuses, the formalization of such a process would have its own costs because it would

involve society prospectively and directly in choosing and implementing mercy killing.

Even if the distinction between killing and letting die is accepted as a social and legal rule, debates will continue about where the line should

be drawn between the two concepts. It is not sufficient to point to the categories of active and passive or acts and omissions. Nor is it simply a matter of identifying the cause of death because

identifying “the cause” in ethical and legal settings

is in part a moral as well as an empirical matter.

Some ambiguity and uncertainty about the line

between killing and letting die will always exist

and different health care professionals and others

will draw it in different places, as was shown in

Case 1. However, there are some clear cases of

direct, active killing, such as Case 2, and it is not

unreasonable to continue to prohibit them even

as society continues to assess where the line should

be drawn.

Ordinary and Extraordinary Means

of Treatment

Originally formulated in Roman Catholic moral

theology, the distinction between ordinary and

extraordinary means of treatment has been widely

adopted in other ethical traditions and in legal decisions and professional codes. For example, after rejecting mercy killing or the “intentional termination of the life of one human being by another, ”

the American Medical Association House of Delegates in 1973 held that the patient and/or his immediate family can decide about the “cessation

of extraordinary means to prolong the life of the

body when there is irrefutable evidence that biological death is imminent” (l).

The distinction was originally used to determine

whether a patient’s refusal of treatment should

be classified as a suicide. Refusal of “ordinary”

means of treatment was viewed as suicide,

whereas refusal of “extraordinary” means was not

viewed as suicide; withholding or withdrawing

“ordinary” means from a patient was homicide,

whereas withholding or withdrawing “extraordinary” means was not considered homicide.

According to one interpreter of the distinction,

ordinary means are all medicines, treatments, and

operations that offer a reasonable hope of benefit for the patient and that can be obtained and

used without excessive expense, pain, or other

inconvenience (19). Extraordinary means are all

medicines, treatments, and operations that cannot be obtained or used without excessive expense,

pain, or other inconvenience, or that, if used,

would not offer a reasonable hope of benefit. The

distinction does not refer to properties of medical practice or of the technologies themselves.

Rather it hinges on two criteria: whether any particular medical treatment offers a reasonable
146 ● Life-Sustaining Technologies and the Elderly

chance of benefit and whether its probable benefits outweigh its probable burdens, including expense and pain.

The language of ordinary and extraordinary

means is subject to criticism because it focuses

attention on customary medical practice and technologies rather than on underlying principles and

values. Hence technologies are sometimes viewed

as ordinary if it is usual or customary for physicians to use them for certain diseases or problems and extraordinary or heroic if use is not customary. The patient as a person often disappears

from view. Several other criteria have been invoked to distinguish ordinary from extraordinary

means of treatment: their simplicity (simple/complex), their naturalness (natural/artificial), their

expense (inexpensive/costly), their invasiveness

(noninvasive/invasive), their chance of success

(probable/improbable), and their balance of benefits and burdens (proportionate/disproportionate). It is alleged that a technology that meets the

first of the paired terms is closer to ordinary, while

one that meets the second of the paired terms is

closer to extraordinary.

Some ethicists propose to replace the terms ordinary and extraordinary with other terms that

are less misleading (33,40). “Ordinary” could be

redefined to mean morally obligatory, mandatory,

required, or imperative, while “extraordinary”

could be used to mean morally optional, elective,

or expendable. These terms seem to reflect the

practical point of the distinction more clearly. But

if the new meanings are accepted, there is still

the question about which criteria can adequately

distinguish obligatory from optional treatments

in particular circumstances.

If the criteria that distinguish ordinary from

extraordinary appear to be relevant in a given

case, it may be because they express other principles and values, such as acting in accord with

a patient’s wishes (the principle of autonomy) and

in accord with a patient’s interests (the principles

of beneficence and nonmaleficence). For example, if an available treatment is simple and natural but not in accord with a patient’s wishes and

interests, it is hard from the patient’s perspective

to see why it should be handled differently than

another treatment that is complex and artificial.

Furthermore, many of the criteria are unclear.

According to one study conducted after the Natural Death Act was implemented in California,

physicians in that State generally viewed mechanical ventilation, dialysis, and resuscitation as “artificial,” but split evenly on intravenous feeding.

Two-thirds viewed insulin, antibiotics, and chemotherapy as “natural” (35). Other criteria, such as

the degree of invasiveness (noninvasive/invasive)

and cost (expensive/costly), may be ethically relevant in view of the patient’s overall condition, interests, and preferences.

The main consideration for many ethical traditions is consistent with what has been called the

criterion of “proportionality”:

Is it necessary in all circumstances to have recourse to all possible remedies? In the past,

moralists replied that one is never obliged to use

“extraordinary” means. This reply, which as a

principle still holds good, is perhaps less clear

today, by reason of the imprecision of the term

and the rapid progress made in the treatment of

sickness. Thus some people prefer to speak of

“proportionate” and “disproportionate” means. In

any case, it will be possible to make a correct judgment as to the means by studying the type of treat -

ment to be used, its degree of complexity or risk,

its cost and the possibilities of using it, and comparing these elements with the result that can be

expected, taking into account the state of the sick

person and his or her physical and moral resources (37).

In general, the distinctions between withholding and withdrawing, direct and indirect effects,

killing and letting die, and ordinary and extraordinary means do not provide ethical answers, although they may reflect important ethical considerations. Whether these distinctions are

valuable will depend then on whether they illuminate or distort the relevant ethical considerations that have been identified as part of a widespread consensus in a pluralistic society. According

to several ethical traditions, the relevant considerations are the patient’s wishes and interests, in

light of his or her condition and in view of the

overall societal allocation of resources and the necessity of some societal rules, such as the prohibition of killing.
Ch. 4—Ethical Issues ● 147

Levels and Kinds of Care

Some commentators suggest that distinctions

between levels and kinds of technologies have ethical implications. In an article on the physician’s

responsibility to “hopelessly ill” patients, the

authors distinguished the following levels of care:

1. emergency resuscitation;

2. intensive care and advanced life support, including mechanical ventilation;

3. general medical care, including antibiotics,

dialysis, and artificial hydration and nutrition;

and

4. general nursing care, including pain relief,

hydration, and nutrition for patient comfort

(43).

The five technologies that are the subject of this

report —resuscitation, mechanical ventilation, dialysis, nutritional support, and life-sustaining antibiotics—are at different levels in this hierarchy.

The application of distinctions between levels

of care in withholding or withdrawing treatment

is illustrated in the following cases, each involving a severely ill elderly patient.

maintain fluid and nutritional intake for this

elderly patient who had made no recovery from

a massive stroke and who was largely unaware

and unresponsive. After much mental anguish and

discussion with the nurses on the floor and with

the patient’s family, the physicians in charge

decided not to provide further IVs or a feeding

tube, and to allow Mrs. X to die. She had minimal

oral intake and died quietly the following week.

In Case 3, the family and staff decided to let

Mrs. X die even though they could have prolonged

her life for some time through artificial nutrition

and hydration. One major issue in drawing lines

is whether all medical treatments can be construed

as “heroic” or “extraordinary” if they are out of

proportion with the patient’s wishes and interests. This question has been examined in several

major court decisions and widely discussed (10, 11,

12)22) in efforts to determine:

●

●

●

If

whether nutrition and hydration by peripheral or central intravenous lines, nasogastric

tubes, or gastrostomy tubes are more similar to other medical treatments, such as mechanical ventilation, or more similar to the

provision of food and water by mouth;

whether they are needed for comfort and dignity even when they are morally optional for

the prolongation of life; and

whether they so symbolize care and compassion that to withhold or withdraw them

would threaten the foundation of humane

and respectful medical care and, ultimately,

social interaction.

nutrition and hydration through medical

means are similar to other medical treatments,

then their use can be decided according to the

criteria used for these other treatments. Critics

of this position make several arguments. One argument is that medical nutrition and hydration are

significantly different from other medical treatments because they are essential for comfort and

dignity. However, some methods, such as central

intravenous lines involve risks, and some may require that the patient be physically restrained.

Another argument is that in withdrawing medical nutrition and hydration, the agent intends or

aims at the patient’s death (25). However, this intention may be present in other cases, such as
148 ● Life-Sustaining Technologies and the Elderly

removing the mechanical ventilator, and may not

be inappropriate in all cases.

Probably the major criticism of failing to distinguish medical nutrition and hydration from other

medical treatments stresses the symbolic significance of these activities, contending that the similarities among all acts of providing nutrition and

hydration are so great that it is impossible to distinguish their methods (e.g., a gastrostomy from

normal feeding). These acts are not only means

to the ends of sustaining life and providing comfort; they also express the values of care and compassion.

Finally, concern about symbolic actions also

leads several critics to believe that to accept the

withholding or withdrawing of nutritional support and hydration, in any case, could lead to undesirable consequences for society as a whole.

First, they believe even compassionate calls for

withdrawing fluids in a few selected cases bear

the seeds of great potential abuse. This fear arises

if the act of withholding fluids is seen as a first

step along a “slippery slope)” where the standard

of care shifts from actions in accord with the patient’s interests to actions in accord with the society’s interests, from the patient’s quality of life

to the patient’s value for society, from dying patients to nondying patients, from letting die to killing, from cessation of artificial feeding to cessation of natural feeding, etc.

While these fears may be exaggerated, they have

to be taken seriously, especially because of possible new threats of undertreatment as a result of

cost-containment measures. This is a stark contrast to earlier threats of overtreatment, Simply

stated, there is a danger that the “right to die”

may become the “duty to die)” even against the

patient’s wishes and interests (10). Although it is

not clear that this danger can be avoided by mandating artificial nutrition and hydration in all cases,

continuing fluids, even to dying patients, provides

an important clinical, psychological, and social

limit to acceptable withdrawals that some people

believe should be retained (38).

Policies regarding cardiopulmonary resuscitation (CPR) have emerged separately and in some

independence from policies about other life-sustaining technologies, such as mechanical ventila-
Ch. 4—Ethical Issues ● 149

vasopressor therapy. The physicians judged that

no reversible disease was present. With the concurrence of her son, treatment with vasopressor

agents was discontinued, a DNR order was written, and she was allowed to die (21).

When a patient’s wishes and interests are considered, important distinctions can be drawn regarding levels and types of care, pertaining both

to the range of CPR procedures and to other treatments. However, these distinctions cannot be assumed to hold in all cases because, as Case 4 indicates, medical treatments as such are not always

obligatory. Whether they are obligatory or optional in a particular case is a judgment call based

on the patient’s wishes and interests in the context of a just allocation of societal and hospital

resources and social rules to prevent unacceptable consequences.

Major Considerations in a Typology

of Withdrawing and Withholding

Life-Sustaining Medical Treatment

In proposed topologies of withholding and withdrawing life-sustaining medical treatment, the following issues are among the most important (14):

● How is death brought about?

● Who brings it about?

● Who decides?

● Why is death brought about?

The major distinctions discussed so far have focused primarily on how death is brought about.

Although “euthanasia” is sometimes defined by

its etymological roots (from the Greek, eu +thanatos =good or easy death), its more common, contemporary usage denotes “mercy killing.” The

terms “active euthanasia” and “passive euthanasia” are sometimes used. The distinctions between

direct and indirect effects and ordinary and extraordinary means are also relevant to possible topologies of withholding or withdrawing life-sustaining technologies.

Despite some overlap, there is an important distinction between who acts and who decides. Some

analysts ignore the distinction between agents

who act and concentrate on agents who decide;

thus, Mayo (24) insists that “voluntary active euthanasia is assisted suicide,” and Tonne (39) suggests that the term “suicide” should be replaced

by the term “autoeuthanasia.” However, it is as

important to preserve the distinction regarding

who acts as it is to preserve the distinction in decisionmaking; who acts is important in distinguishing suicide from other actions. The line between

“assisted suicide” and ‘(voluntary, active euthanasia,” which both involve killing, is determined by

who is the final actor, the patient or someone else.

However, the question of who decides remains

important in cases of “euthanasia” or “mercy killing,” which may be voluntary or involuntary from

the standpoint of the patient.

Finally, it is also important to consider the

grounds of the decision–the why of the

decision—regardless of who makes it and carries

it out. The major distinction is between reasons

based on the patient’s interests and reasons based

on the interests of others, such as the family or

society. These reasons are not always incompatible, but possible tensions should be noted, particularly when a decision is made by someone

other than the patient for the interests of parties

other than the patient. Thus, it maybe necessary

to develop procedures to protect patient decisionmaking and patient wishes and interests (as discussed in several places in this report).

Too many variables are involved in decisions

about withholding or withdrawing life-sustaining

treatments to permit tight and illuminating typologies. But important themes can be used to describe and evaluate various acts, some of which

will also appear in the discussion of suicide and

its relation to the refusal of life-sustaining

treatments.

Defining Suicide and Its Application

to Cases of Elderly People Receiving

Life-Sustaining Technologies

Growing attention is being paid to the idea that

individuals may want to exert direct control over

the timing of their deaths by withdrawing lifesustaining technologies or by taking specific medications in lethal amounts (13). The empirical relationship between the use of the life-sustaining

technologies and deliberate deaths cannot be

quantitatively described because no data are avail-
150 . Life-Sustaining Technologies and the Elderly

able. In addition, important conceptual problems

need to be considered in order to talk about suicide and assisted death in meaningful ways.

There is no clear, neutral, widely accepted definition of “suicide.” Suicide is always defined within

traditions that make normative as well as conceptual points—the definitions are intended to guide

behavior. For example, some traditions hold that

suicide is always wrong and then sharply distinguish acts of suicide from other acts that lead to

one’s own death. Other traditions hold that suicide can be justified under some circumstances

and thus do not worry as much about the line

between suicide and other acts that cause one’s

own death. Justified exceptions to a rule prohibiting suicide within one tradition may be built into

the definition of the rule in another tradition. For

example, one tradition might justify acts of suicide to save others, while another tradition might

hold that acts that are intended to help others

rather than to bring about one’s own death (such

as falling on a grenade to save one’s comrades)

are not really acts of suicide and thus do not violate the rule against suicide.

At the very least, the concept of suicide involves:

1) a person’s death, and 2) that person’s involvement in his/her death. For an act to be considered a suicide it is necessary for a person to have

intentionally brought about his or her own death,

but these criteria are not sufficient to define

suicide.

The questions and distinctions developed in the

previous section suggest some key points: who

decides? In suicide, the one whose death is brought

about makes the decision for death. Who acts?

In suicide, the final actor, however much assistance is involved, is the one whose death is brought

about.

As these metaphors suggest, in suicide the person whose death is brought about both decides

and acts. If the agent did not decide and act voluntarily, that is, apart from coercion by others, the

act of killing oneself would not be an act of suicide (5). Nevertheless, disputes arise, particularly

about determining the intentionality of the act.

At the very least, knowledge that an action will

probably bring about one’s own death is usually

sufficient for suicide.

How is death brought about? In some religious

traditions, when death is brought about by letting nature takes its course rather than by killing, by indirect rather than by direct means, and

by forgoing extraordinary rather than ordinary

procedures, the act is not considered suicide, especially if death from disease is inevitable and imminent whatever is done. In general, the more

active the means of bringing about death and the

closer the temporal association between the action and the death, the more likely the death is

to be considered a suicide. Thus, several factors

distinguish refusals of treatment from acts of suicide. These factors are:

. whether the person is already terminally ill

so that death is imminent regardless of what

is done;

● whether the means of death is active rather

than passive and involves action rather than

omission; and

. whether the death results fairly quickly after the action or omission.

Judgments about the role of these factors affect

whether an act is considered negative (suicide)

or neutral (refusal of life-sustaining treatment).

For example, one commentator notes, “to the extent that we have unmistakable cases of actions

by an agent that involve an intentionally caused

death using an active means where there is a nonfatal condition, the more inclined we are to clas-
Ch. 4—Ethical issues “ 151

sify such acts as suicides; whereas to the extent

such conditions are absent, the less inclined we

are to call the acts suicides” (5).

Case 6: When Barney Clark at age 62 became

the first human to receive a permanent artifical

heart on December 2, 1982; he also was given a

key that he could use to turn off the compressor

if he wanted to die. As Dr. Willem Kolff noted,

“If the man suffers and feels it isn’t worth it anymore, he has a key that he can apply ...I think

it is entirely legitimate that this man whose life

has been extended should have the right to at

it off if he doesnt want it, if life ceases to be enjoy

able . . .” (32).

Although Clark’s actions would have been

vigorously debated if he had used the key to end

his life, according to most of the criteria identified it appears that his act should have been characterized as a suicide without necessarily prejudging its morality. In some traditions, however, it

is not possible to call an act suicide without simultaneously judging it negatively. Within such traditions, those who viewed the action as morally

acceptable probably would take the position that

the artificial heart was experimental and extraordinary and that Clark simply acted to end an

experiment or to terminate an extraordinary

treatment.

Why is death brought about? It is useful to distinguish two types of suicide or attempted suicide (a similar distinction would apply to refusals

of treatment). In goal-oriented conduct, an agent

attempts to realize some goal and bring about

some effect or consequence. In suicides of this

type, the language of cause and effect is very important; for example, an agent may attempt or

commit suicide because of a belief that death is

better than a life of pain and suffering or disability. In expressive acts of suicide-often attempted

rather than actual—an agent conveys a meaning

or makes a statement, such as a lack of hope or

contempt for life or an appeal for help or attention. Some acts of attempted or successful suicide

may be both instrumental and expressive.

Case 7: A 62-year-old artist committed suicide

on June 9, 1979. Having learned in March 1978

that she had beast cancer which had spread to

her lymph nodes, she underwent 10 months of

chemotherapybefore deciding to commit suicide.

With the help of her family and frbnds, she fashioned her "life sculpture”-a pine coffin-like box

filled with personal mementos, and then she

wrote a farewell letter to 60 friends, said goodbye toher family and swallowed 35 sleeping pills,

washed down with champagne. Her family and

friends cooperated.

This suicide illustrates both instrumental reasons (she believed that death was better than

suffering from cancer and chemotherapy) and expressive reasons (she wanted to express her beliefs about “self-termination” and her conviction

tha"life can be transformed into art”). An autopsy

indicated tath her cancer had not spread beyond

the lymph nodes to any vital organ (27).

Some traditions tend not to characterize sacrificial acts as suicide. However, there are limits; in

Case 2, even if the patient had been able to secure and take the lethal medication himself, rather

than having it administered by his physicians, his

act would have been a suicide despite his other

reason of not wanting to deplete his family’s resources. Motives may be and usually are mixed.

ETHICAL IMPLICATIONS OF DISTRIBUTING

LIFE-SUSTAINING TECHNOLOGIES

In addition to the ethical distinctions involved shared, or distributed. The distribution of lifein treating individual patients, there are signifi- sustaining technologies is important because 1)

cant ethical issues associated with the way in such technologies may be scarce or expensive; and

which life-sustaining technologies are allocated, 2) the use of age as a criterion in allocation deci-

~his section is based in part on a paper prepared for OTA by sions has important implications for the hetergeneRobert Nl, t’catch, 1985 (41). ous group of people called the “elderly”.
152 ● Life-Sustaining Technologies and the Elderly

The problem of how to allocate resources ethically is usually referred to as a problem of justice. Justice is, however, a deceptively ambiguous

term. In a general sense, justice means “the right.”

Thus, one might say that it is unjust to tell a lie.

Justice in a narrower sense refers to fair distribution. It is in this second, narrower sense that

justice can be examined in terms of the distribution of scarce life-sustaining technologies. Two important questions arise:

1. What are the major theories of a just distribution?

2. What are their implications for the use of age

as a basis for allocating life-sustaining technologies?

The Interface Between the Ethics and

Economics of Distributive Justice

The ethical issues raised by the use of lifesustaining technologies for elderly persons are

closely related to the economics of their use. Economics, however, often only provides data about

dollar costs per unit of benefit. It can, by extension, provide data about some other costs such

as, social, psychological, and cultural costs. But

economic analysis generally does not indicate how

cost data ought to be assessed.

Theories of distributive justice are based on

underlying sets of ethical suppositions. One might

emphasize liberty and the rights that accrue with

ownership of private property; another might emphasize the goal of maximizing aggregate net benefit, maximizing the position of the least well off

groups, or striving for greater equality. Thus, even

if there were complete agreement on the relative

costs and benefits of alternative policy options,

it would not necessarily be clear which policy

should be adopted.

Increasingly, however, the critical ethical problems in health care will be distributive justice problems. Under most economic systems, persons

ought to be permitted to refuse care that they do

not find beneficial, provided that the refusal does

not generate extra costs for society (and normally,

it would not). The life-sustaining technologies that

are the focus of this study sometimes offer only

marginal benefit, but at great costs to third parties (insurers, hospitals, and governments). In

these cases, the societal costs of care become a

critical, ethical problem. Only by choosing a theory of distributive justice and integrating that theory into the calculations and analyses done to compare policy alternatives is it possible to decide how

to respond to cases in which care is marginally

beneficial and very expensive to third-party payers.

How can goods be fairly distributed? Four major

positions are responsive to this question: the libertarian, utilitarian, maximin, and egalitarian positions.

Major Theories of Distributive Justice

Libertarianism is one of a group of theories”

that spells out what persons are entitled to possess. These are sometimes referred to as entitlement theories. Libertarianism holds that persons

are entitled to what they possess provided that

they acquired it fairly (29). Fair acquisition includes

gifts, exchange (including purchase), or original

appropriation of previously unowned property.

Heavily influenced by John Locke and the image

of original appropriation from a state of nature,

the libertarian position places great emphasis on

individual liberty. Persons are permitted to do

whatever they want with what they possess provided that they do not violate the holdings of

others.

Utilitarianism, a second major position, holds

beneficence or the maximizing of utility as dominant. The ‘(right” pattern of distribution is one

that produces the most good. That is the moral

logic behind many policy analyses such as those

using cost-benefit and cost-effectiveness analyses.

These are economic methods for calculating the

benefits and harms of alternative policies to determine which one will produce the greatest good

overall. Thus, when a straightforward cost-benefit

analysis is conducted it shows an implicit commitment to utilitarianism.

The libertarian and utilitarian patterns of distribution are obviously very different. What is

striking, however, is that neither necessarily involves any redistribution to meet the needs of the

poor, the sick, or the least well off, including the

elderly (who may be poor, sick, and/or least well

off). Libertarianism would permit such redistri-
Ch. 4—Ethical Issues ● 153

bution as a matter of charity. Utilitarianism would

be open to redistributions to the poor if, and only

if, redistributing resources increased the total

amount of good in society. Such redistributions

often increase the total amount of good because

the harm that is likely to be done to the wealthy

person is less than the good that could be done

for poor persons. But there is no inherent moral

principle that favors equality or redistribution on

the basis of need.

Maximin theorists are concerned about those

special cases where distributing things more

equally or distributing in proportion to need will

benefit the least well off. The most important maximin theorist is John Rawls, whose book, A Theory of Justice (34) has reoriented 20th century

philosophical and public policy analysis of the

problems of distribution. Rawls states that a group

of rational, disinterested people would agree on

two basic principles to guide the allocation of resources in a just society. These principles are:

1) Each person is to have an equal right to the most

extensive basic liberty compatible with a similar system of liberty for others.

2) Social and economic inequalities are to be arranged so that they are both:

a) to the greatest benefit of the least advantaged, consistent with the just savings principle, and

b) attached to offices and positions open to all

under conditions of fair equality of opportunity (34).

Since Rawls’ second principle is designed to maximize the position of the least well off group, this

theory of distribution is often referred to as the

“maximin” theory. It holds that there is something

ethically compelling about arranging resources

so that the group on the bottom is as well off as

possible, even if the result is that the amount of

good per person is not as great as it could have

been with some other distribution. The maximin

position provides a powerful intellectual framework that overcomes some of the most severe

problems with utilitarianism. Maximin theory, for

example, squares with many people’s moral intuition that slavery is wrong regardless of whether

it may do more good than harm.

Egalitarianism is a coherent theory of justice

as well as a theme within maximin theory. Maximin theory is one example of a theory of justice

that places special emphasis on equality as a check

against individual liberty and aggregate social welfare. It seems to be consistent with important religious and secular strands of Western thought.

Some observers, however, have pointed out that

maximizing the position of the least well off group

does not necessarily require moving toward

greater equality. In fact, maximin theory provides

a framework for deciding precisely when inequalities are morally appropriate.

Several commentators distinguish between

Rawls and other maximin theorists, on the one

hand, and ‘(true” or “radical” egalitarians on the

other (3,4,28). True or radical egalitarians are committed in a straightforward manner to the goal

of equality per se.

The important test case for separating maximin

theorists and egalitarians is how they handle situations where the best way to improve the lot

of the least well off is to devote substantial resources to talented elites to give them an incentive to use their skills to benefit those on the bottom (trickle down theory). Maximin theorists hold

that in these circumstances, justice requires that

the resources be given to the well off elites even

though inequalities will actually increase. True

egalitarians are distressed at the increases of inequality because they see great moral importance

attached to equality as well as to increasing

welfare.

Implications of Theories of Justice

For the Use of Life-Sustaining

Technologies With the III Elderly

The concept of “terminal illness” was defined

in chapter 1 as an illness that has a predictabily

fatal progression that cannot be stopped by any

known treatment. Terminal illness is distinguished

from “critical illness” by the certainty of outcome.

Many of the ethical dilemmas surrounding the use

of life-sustaining technologies with elderly individuals arise from situations in which the patient

is seriously ill and death is a possible outcome.

The great uncertainty attached to the course of

critical illness creates a crisis situation where decisionmaking is difficult and complex.
154 ● Life-Sustaining Technologies and the Elderly

The libertarian perspective asks who would

want and be able to receive life-sustaining treatment if free market forces and charity were the

principal bases of access. Most life-sustaining technologies are sufficiently expensive that few people would have access to them, under a libertarian distribution scheme, unless they had personal

financial resources or insurance coverage. Thus,

a line would be drawn between elderly persons

who either set aside money or purchased health

insurance (presumably to supplement Medicare)

to guarantee their access to treatment. Additional

divisions could be seen among those elderly persons who buy health insurance, according to the

level and type of coverage they choose. For example, some persons would choose a health insurance policy that provides coverage during terminal illness, while others would not want such

coverage. Some would choose coverage for longterm care, while others would view as sufficient

coverage for hospital care. Some would consider

their benefits under Medicare sufficient.

There are problems with this position, however.

Most people would at least want life-sustaining

technologies if they relieved pain and suffering

and relieved it at a relatively low cost. Some might

also desire more aggressive treatment, but the

libertarian approach would require them to compare the benefits of having the insurance coverage with the benefits of having the money needed

to buy that coverage to spend on something else.

It is likely that a great many people would forgo

the coverage, especially coverage beyond that necessary to provide comfort. They would probably

be more willing to buy coverage for life-sustaining

technologies that were relatively inexpensive. In

addition, while failure to purchase health insurance is sometimes a fair statement of an individual’s evaluation of the benefits, it frequently is

not, Many people who would opt for life-sustaining

treatment may end up without it because they

do not understand the details of their Medicare

benefits and lack the information needed to supplement those benefits.

Utilitarianism would provide a very different

analysis of the use of life-sustaining technologies

during terminal illness. It would ask what the benefits are in comparison to the costs (economic and

social) and compare the net benefits from the use

of these technologies with the net benefits of other

uses of the resources.

Given that some people consider some uses of

life-sustaining technologies during terminal illness

a net loss, the case for their use will be a difficult

one to make. The calculation will have to involve

benefits to the patient as well as benefits to society. In both cases the benefits are problematic.

Surely in some cases the patient benefits, either

because the treatments relieve pain and suffering

or because continued living is desired by the patient and/or others. Even in those cases, however,

the benefits are likely to be small in comparison

to the use of the resources in other ways.

In previous paragraphs, a distinction was made

between persons who are inevitably dying and

those who will die if they are not treated with

a life-sustaining technology, but could probably

live if treated. A distinction was also made between

life-sustaining technologies that are used once to

meet acute needs and those that must be used

on a continuing basis. For the utilitarian, who is

especially concerned about anticipated benefit,

whether the illness is reversible or irreversible

and whether use of the technology is acute or

chronic will be very important.

Utilitarian analysis would also require taking

into account the net benefits to society of the use

of these technologies as well as alternative uses

of the funds. Their use might be supported on

grounds of societal benefits in rare cases where

the terminally ill elderly person could still make

a substantial social contribution, but that is likely

to be uncommon, When compared with the use

of the resources in other ways, the societal benefits are likely to be small.

The societal benefit that a more sophisticated

utilitarian is likely to identify is the benefit for

family members who will get positive value out

of having a loved one remain alive even a short

time longer. In some cases, these benefits could

be significant such as when a relative is traveling

from out of town and desires to see the dying person one last time. A strict utilitarian would insist

that these benefits be included in the calculation.

These social benefits, however, are extremely subjective and hard to quantify. Moreover, their inclusion has some unsettling implications. An ill

elderly person with no relatives or friends would
Ch. 4–Ethical Issues • 155

have no claim based on these benefits. This could

lead to policies of using life-sustaining technologies

for the terminally ill only in cases where there

are relatives. Extending the argument one step

further, their use might be reserved for those cases

where relatives will be made happy by the dying

person’s continued existence.

There is one final issue raised by a utilitarian

calculation. Different life-sustaining technologies

may have different subjective impacts on the population. In some cases the decision to prohibit their

use is likely to be very distressing to the sensibilities of some of the population. In other cases, the

decision not to use the technology may produce

little distress at all. For example, the level of psychological distress at the decision not to provide

basic nutrition and hydration is probably much

greater than that of deciding not to implant an

artificial heart in a person who will inevitably die

without one.

How should a utilitarian respond to these different subjective feelings on the part of members

of the society? Should they be considered as benefits and harms of the treatment decision? It seems

odd to decide whether to provide nasogastric tube

feeding on the basis of whether it makes other

people uncomfortable if such feeding is not provided. Decisions about what treatments should

be provided are not normally made by determining whether citizens would be upset by their lack

of provision. A utilitarian approach to allocating

life-sustaining technologies will have to determine

whether these subjective benefits and harms of

providing life-sustaining technologies are relevant

or whether a more objective measure such as

years of life added should be used instead.

Maximin theorists and egalitarians would be

much less concerned about whether the patient

is terminally or critically ill and the frequency of

treatment because aggregate benefit is not considered critical. Their major question is whether

terminally ill elderly people constitute a least well

off group or have the greatest needs and, if so,

whether the technologies provide any benefit. Terminally ill elderly persons might well be considered a least well off group. From the slice-of-time

perspective, they are in very bad shape. Yet from

the over-a-lifetime perspective they are plausibly

better off than persons who are terminally ill and

young.

If terminally ill elderly people are viewed as a

least well off group, they have claims to the resources that would benefit them. In the case

where life-sustaining treatment is perceived as

beneficial, maximin and egalitarian theorists who

conclude that the terminally ill elderly are a least

well off group would support treatment even if

the benefits were minor.

There is room for dispute among these theorists

when there is good reason to believe that the treatment would not be beneficial. What should happen, for example, when a dying elderly patient

insists that an antibiotic be used for an infection

and the consensus of medical opinion is that the

antibiotic is extremely unlikely to overcome the

infection and is very likely to produce undesirable side effects? Withholding the antibiotic is likely

to produce distress for the patient, but supplying

it is likely to produce harmful side effects. Maximin and egalitarian analysts will need to decide

whether their theories require providing subjective benefit from the patient perspective or only

benefits measured in some more objective manner.

If terminally ill elderly people are viewed as a

group that is not least well off, a different set of

issues arises. presumably maximin theorists and

egalitarians would reach the conclusion that the

life-sustaining technologies should be withheld on

grounds of justice, Consider a dialysis patient who

has a few days to live and those days will be lived

in a state of semi-conscious stupor. It maybe tragic

to have to withhold dialysis or CPR from such a

patient on resource allocation grounds, but if, by

hypothesis, others are in greater need, then that

is the decision a maximin theorist or egalitarian

would support.

For life-sustaining technologies that also provide

comfort and do so relatively inexpensively, the

problem is more complex if terminally ill elderly

people are not considered a least well off group.

Consider a terminally ill elderly patient whose life

will be sustained through hydration and nasogastric tube feeding. What should happen if withdrawing those treatments produces discomfort

for the patient?
156 ● Life-Sustaining Technologies and the Elderly

The egalitarian or maximin approach is that, if

these are not least well off patients, they have no

claim to the resource even if the suffering prevented is quite great and the cost of the treatment

is quite small. For a terminally ill elderly person

who has previously had a good life, the burden

would probably have to be severe to outweigh

the lifetime of wellbeing. And finally, for another

terminally ill patient who needs nutritional support for comfort, but who has had a miserable

existence throughout his life, his claim for benefit would be much greater, For these reasons, some

egalitarians argue that for providing the basics

of comfort care, the slice-of-time perspective must

be used but decisions pertaining to research, development, and experimental and high-technology

treatment require an over-a-lifetime perspective.

Consideration of Age as a Criterion

in the Allocation of Technological

Resources

Many criteria are relevant to decisions about

the allocation of technological resources. First, it

is possible to distribute resources according to

each theory of justice or some combination

thereof. The health care delivery system in the

United States, for instance, is based on an amalgam of competing points of view about what is

fair and equitable. Second, it is possible to distribute resources in a discriminating way in terms

of kinds of care (e.g., prevention, diagnosis, treatment, and rehabilitation), relative costs, merit,

need, or age group. Because this report focuses

on the use of life-sustaining technologies and

elderly people, a discussion of the ethical implications of the use of age as a criterion for the distribution of resources is particularly relevant.

Age as a Direct and Indirect Measure

It is important to distinguish between two possible ways of using chronological age as a criterion

in the allocation of technological resources. Age

can be used in a direct way as the basis for allocating resources or, more commonly and probably more plausibly, age can be used as an indirect

measure of some other variable that is thought

to be the legitimate basis for allocating resources.

Age can be an indirect measure of many different variables but the most obvious is as a predictor of medical benefit.

It has been common to use age as a basis for

excluding patients from some procedures such

as heart transplants. Both very old and very young

patients were believed to be poor medical risks.

Exclusion from dialysis on the basis of age was

largely due to the belief that dialysis would not

work well for older patients. This is of course an

empirical argument that needs to be based on evidence about whether age really correlates with

expected outcomes. (Note that exclusion from dialysis based on chronological age is not a practice

under the current Medicare End Stage Renal Disease Program.)

The medical benefit criterion is attractive because it appears to be objective but in reality, it

often is not. The reasoning is that, if two people

are candidates for an organ transplant and one

will live more years than the other, then the person who will live longer becomes the correct recipient of care. That may well be the case, but

if it is, it is not without evaluative judgment. The

notion of medical benefit often includes not only

years of survival but the likelihood of complications, the amount of effort necessary to make the

procedure successful, the likelihood of success,

and many other factors. The complex combination of these that leads to the conclusion that one

patient can benefit more than another is highly

subjective.

Age can be an indirect measure not only of expected medical benefit, but of a number of other

factors that are significant in various theories of

justice. The most obvious is that age is an imperfect predictor of years of life potentially added

by a life-sustaining intervention. This is true especially for acute interventions such as antibiotics.

Other things being equal, a 70-year-old person can

be expected to gain more years of life from an

antibiotic for pneumonia than an 80-year-old person. If the policy were to allocate to the person

who would get the most life-years from the treatment, then age would be an important factor in

deciding who gets treatment.

In addition, age is an inadequate measure of the

amount of well-being or quality of life one has

had over a lifetime. For those who work with an
Ch. 4—Ethical Issues ● 157

over-a-lifetime concept of equality, age is an important predictor of how much well-being has

been accumulated, other things being equal. The

problem, of course, is that other things are not

usually equal. Age is a predictor of medical success, years of life potentially added, or cumulated

well being, but it is an imperfect predictor. So even

if one accepts age as a legitimate basis for allocating technologies, it does not follow that chronological age can be used as the sole basis for allocation,

Arguments in Support of the Use of

Age as a Criterion

At least four ethical arguments can be employed

to defend the use of age as a criterion in allocating health care resources. They are: 1) the “age

demands respect” argument; 2) the “age as a

predictor of accrued benefit” argument; 3) the

“over-a-lifetime well-being” argument; and 4) the

argument from contract.

The “Age Demands Respect" Argument.—It

is striking that in traditional societies age was without question a legitimate basis for allocating certain resources. The elderly commanded a special

place as people deserving respect. Some vestiges

of this remain in our society. Older persons are

still occasionally given courtesies of title. They still

sometimes expect higher salaries for work similar to that done by a younger person. These practices reflect the conviction that age brings wisdom. Even in an era of orientation to youth, it

is important to realize that using age as a criterion

of allocation does not necessarily mean that elderly

people will be less likely to receive life-sustaining

technologies. For instance, if there were a choice

between a 65-year-old and a newborn infant, some

people might opt for the elderly person on the

grounds that a person whose character is fully

developed demands respect over an infant.

The “Age as a Predictor of Accrued Benefit)’

Argument.—A second argument for the use of

age as a criterion is more likely to lead to decisions limiting access to life-sustaining technologies.

This argument uses age as a predictor of the benefit that will accrue from intervention. The benefit includes the medical factors considered above,

but also, especially for one-time interventions, the

years of life added, the useful contribution of the

individual to the society in the future, and other

factors.

Utilitarians would defend the use of age even

if it is only an imperfect predictor of utility. The

utilitarian, driven to maximize net benefit, would

concede that it would be best to use life-sustaining

resources in the way that maximizes their benefit. They would concede that occasionally older

people get great benefit out of life-sustaining technologies and that they might continue to live and

contribute to society if such technologies were

used. They also concede that some younger people ought to be disqualified if usefulness to the

patient and to society were the criteria. They

might argue, however, that there would be great

disutility in setting up complex procedures for determining which elderly persons of a particular

age were the exceptions that justified special consideration. The labor and psychological stresses

involved might make it such that the most efficient way to maximize utility is simply to include

or exclude all persons of a particular age, ignoring the fact that some persons would thereby be

wrongly classified.

The Argument for Over-a-Lifetime WellBeing.—A third argument for the use of age as

a criterion leads to a similar conclusion—limiting

access to life-sustaining technologies—but on very

different grounds. This argument works from the

maximin or egalitarian theory of justice and uses

the over-a-lifetime perspective for determining

who is least well off. However, attempting to assess individual variations in lifetime well-being for

two persons of similar age would be an overwhelmingly complicated task. For policy purposes,

so the defenders of this argument would claim,

it is better to have a crude, simple basis for decisionmaking that will provide at least an approximation of cumulated well-being.

If this position is adopted, the older a person

is, the less claim he or she has to resources. Diseases of infancy would appear to get very high

priority, then diseases of children, etc. Those who

have lived to old age would perhaps have a claim

to the basics of care—safe, simple treatments of

basic problems, comfort care, and standard medicine, but not expensive, high technology or ex-
158 ● Life-Sustaining Technologies and the Elderly

perimental treatments. Instead of delivering these

complex, expensive treatments to the elderly, more

work should be done for those who otherwise

will never have the opportunity to see old age.

The Argument From Contract.–A final argument can be offered that may lead to the conclusion that age can legitimately be a criterion for

allocating health care (15). It draws on certain

egalitarian premises, but also incorporates many

of the ideas of those committed to individual liberty. This approach struggles with the problem

of what constitutes a fair transfer of resources

for health care from the younger generation, who

have the ability to pay for care, to the older generation, who have great need for care. It helps

to think of the problem as more of an intrapersonal problem rather than an interpersonal one.

Then the issue becomes one of how much of the

resources available to the younger generation

would prudently be saved for health care in old

age.

This view argues that rational persons would

allocate funds in a manner that does not necessarily provide the same health care services at all

ages during their lives. Individuals in the population have a range of opportunities that vary from

one age to another. What is normal functioning

for one age is not for another. Prudence would

dictate that persons would allocate their health

care dollars with an eye to those “age relativized

opportunity ranges” (15). The result would be

different patterns of health care for different age

groups, but comparable levels of satisfaction for

individuals. “Justice requires that we allocate

health care in a manner that assures individuals

a fair chance at enjoying the normal opportunity

range, and prudence suggests that it is equally

important to protect an individual’s opportunity

range for each stage of life” (15).

The over-a-lifetime perspective seems to imply

that the younger a person is, the greater the claim

to societal resources. As a practical policy matter

this perspective could create some serious problems–say of choosing between a 33- and a 34-

year-old person on the basis of age. Since the primary area of controversy is over the use of expensive, marginally beneficial resources for those

who have met many of their life goals, it is possible that some cut off point would be adopted in

using age as a criterion. Here use might be made

of the newer distinctions among subgroups of

elderly people. It is possible that an age criterion

could be used for limiting certain life-sustaining

technologies only for the older subgroups. It is

also possible that if age criteria are generally

adopted, different age ranges would be adopted

for different subgroups of elderly people.

Arguments Against the Use of

Age as a Criterion

The arguments favoring the use of age as a criterion for allocating health care resources clearly

depend on which theory of justice one adopts.

The counterarguments will also follow the patterns established in the theories of justice debate.

Any argument against the premises of the particular theory of justice will turn out to be a reason to oppose the use of age as a criterion. For

example, anyone who rejects utilitarianism will

likewise reject the utilitarian reasons why age

might be used as a criterion.

Egalitarianism With the Slice-of-Time Perspective.—Perhaps the most common argument

on both sides of the debate over the use of age

as a criterion in allocating resources is the argument that people should be treated equally and

that that means equal needs should have an equal

chance of being met regardless of age. In other

words, people equally sick at a given point in time

have an equal claim.

Libertarianism.-—An argument against the use

of age as a criterion for allocating life-sustaining

technologies is rooted in the libertarian theory

of distribution. It emphasizes that life-sustaining

technologies, like other goods and services, should

be available to those who want to purchase them

or to those who are the recipients of gifts or exchanges from others who control these services.

Under this view, anyone who has the resources

(either direct funds or insurance coverage) should

have access regardless of age.

Age might enter into individual choices about

whether to make use of life-sustaining technologies for instance, some elderly people might reason that they would rather have their resources
Ch. 4—Ethical Issues • 159

used for other purposes. Age might also influence

the distribution of resources, thereby determining who has the funds to purchase life-sustaining

technologies. But age per se would not, according to the libertarian perspective, determine who

should have access to any resource including lifesustaining technologies. If some people are unable to gain access because of lack of resources

that is unfortunate, but not unfair.

The Utility Arguments About Using Age as

a Criterion.—Utilitarians would argue that since

age is an indirect indicator of other factors that

correlate highly with the amount of benefit produced by life-sustaining technologies-factors such

as predicted medical success, years of life added,

and social usefulness of the life saved—it is most

efficient to operate under some general rules that

allocate life-sustaining technologies strictly on the

basis of age.

Other utilitarians might push this reasoning one

step further. They might be concerned about the

disutilities of having some persons in the society

receive life-sustaining technologies while others—

equally sick and equally at risk—do not. They

might argue that to minimize the social friction

created by age cutoffs, everyone, regardless of

age, should have the same access to life-sustaining

technologies. That rule, even with the inefficiencies that result from delivering care to elderly persons who are likely to gain very little benefit and

add very little to society, may end up producing

more good than trying to institutionalize age-based

discrimination.

The Life-is-Sacred Argument.—Still another

argument against the use of age as a criterion is

specific to life-sustaining technologies, Some people in certain religious and cultural traditions believe that life in all of its moments is sacred. They

hold that life should never be shortened by the

withdrawal or withholding of medical technologies under any circumstances. They consistently

oppose withholding mechanical ventilators, the

writing of DNR orders, and the refusal of any other

life-sustaining treatments such as nutritional support and antibiotics. Anyone taking this position

would necessarily oppose the use of age as a criterion for determining who should get life-sustaining technologies.

The Use-of-Sociological Categories Argument.—A final argument against the use of age

as a criterion draws on parallel debates from the

civil rights and women’s rights movements. In the

early phases of these debates, some who would

defend discrimination on the basis of age or sex

did so using the argument that sociological categories (e.g., race or sex) can be used to predict

performance or success in the workplace and

other settings. This generated substantial argument. Members of minority groups took strong

exception. They argued that it was unfair to assume that they, as individuals, would perform

poorly, that they would follow the stereotypes of

a particular sociological group.

The critics of the use of ascribed sociological

categories have now largely won the debates

regarding sex and race. These factors now can

legally be used as selection criteria only in very

special circumstances where sex or race are inherently linked to a job.

The implications for the use of age as a selection criterion are apparent. Age, as has been indicated, is almost always used as an indirect, imperfect indicator for some other factor thought

to be relevant in selection. Furthermore, chronological age is an ascribed category. There is nothing anyone can do by hard work to change it anymore than one can (with very special exceptions)

change race or sex. If race and sex cannot be used

for allocation without being unfair, does it not follow, so these critics argue, that age likewise cannot be used? This leads to the conclusion that anyone who wants to exclude a particular patient on

the basis of medical benefit, utility calculations,

or accumulated well being over a lifetime would

need to find direct evidence that these factors

justify exclusion in the particular patient. Age per

se could not be used as a sociological short cut

to these factors.

Mixed Arguments Regarding Age

as a Criterion

It is possible to accept the use of age as a criterion in certain circumstances and reject it in

others. Some egalitarians are experimenting with

a differentiated approach whereby age is legitimately used in allocating research and develop-
160 ● Life-Sustaining Technologies and the Elderly

ment funds, experimental treatments, expensive

treatments, and those with low likelihood of success while everyone would have equal access on

the basis of need to inexpensive, safe, and effective treatments and to comfort care regardless

of age. Other formulas for mixed policies where

age is sometimes used as a criterion and other

times is not are likely to emerge in the future.

Intergenerational Responsibilitie s

and Conflicts

Considering the use of age as a criterion for allocating life-sustaining technologies poses the

problem of intergenerational responsibility and

conflict among generations. Thinking of the use

of life-sustaining technologies for the terminally

ill elderly, many elderly individuals have come to

the conclusion that such uses, even if they are

desired, consume large amounts of personal resources that could better be used by one’s children and grandchildren. On that basis, some individuals wish to forgo the use of life-sustaining

technologies during life-threatening illness. If individuals make such decisions with their own resources, the question arises whether at the public policy level decisions should be made such that

society’s resources are not used excessively for

the older generation.

If many people consider the benefits of using

their resources for life-sustaining technologies

small or even nonexistent, the utilitarian perspective would reasonably support preservation of the

resources for future generations. In fact, it is not

clear that this preservation of resources would

be limited to existing generations. The calculation

of benefits and harms could include all future persons, whether presently living or not. However,

some people have argued that those more than

two or three generations in the future will be so

different from us that it will be virtually impossible to predict their interests and that, therefore,

they do not need to be taken into account (18).

Others are not as convinced of the radical discontinuity between our generation and future ones

(9). At least when it comes to the desire of future

generations to avoid end-stage kidney disease, infections, dehydration, nutritional deficit, and sudden cardiac or respiratory arrest, it seems reasonable that those in the future are likely to want

these problems solved.

Similar problems of intergenerational responsibility arise for maximin theorists and egalitarians. They must determine whether the present

terminally ill elderly are among the worst off

groups, taking into account the existing younger

generation and possibly future generations as well.

In fact, some ethicists and economists have worried a great deal about justice between generations (34). Because no one knows into which generation he will be born, the result will be what

is called the “just savings principle” where there

is “an understanding between generations to carry

their fair share of the burden of realizing and preserving a just society” (34).

The intergenerational responsibility problem is

critical for what is called the prudent saver model

of resource allocation (15). Health coverage for

the elderly is essentially a scheme whereby each

older generation is the beneficiary of the resources

of the younger generation. If a plan providing agerelativized opportunities for health care is once

in place, even if elderly persons did not get the

same levels of coverage for life-sustaining technologies, everyone would be treated fairly-at least

if every generation were of the same size and contributed equally. The intergenerational transfers

would theoretically cancel out with each younger generation contributing to the support of the

older generation.

However, all generations may not be equally

equipped to pay for care of the elderly. Some paying generations may be quite small yet have to

pay for care for an elderly generation that is large.

Other generations may face the opposite demographics. Some generations may face long periods

where economic conditions make it difficult to

pay for care for the older generation. From the

point of view of a distribution system emphasizing equality, adjustments would need to be made

to even out the ratio of burdens to benefits. In

any case, if a plan using age as a criterion for allocating life-sustaining technologies were suddenly

institutionalized, adjustments would have to be

made to deal with intergenerational responsibilities during the transition generations and between

generations that had unequal abilities to support

health care.
Ch. 4—Ethical Issues ● 161

One of the key problems of intergenerational

responsibility is the extent to which children bear

responsibility for their parents in a direct way.

Both recognize that the parental generation transfers resources to the younger generation during

early years and that some reciprocal responsibility is borne by children for their parents during

their old age. At the same time, both place substantial limits on the obligation of the younger generation for the older, Some thinkers express this

in terms of the obligation of each generation to

save for its immediate descendants (34). Others

look at it in terms of the way a prudent saver

would allocate a life’s resources (15). In both cases,

it is clear that limits exist on what would be transferred from the younger generation to the older.

Taking a somewhat different perspective, government programs to meet the needs of the elderly

can be seen as a way of easing tensions between

generations: the younger generation would not

bear a responsibility for providing care for the

older, but would nevertheless remain in contact

with them through family ties.

FINDINGS AND

The ethical issues associated with the use of the

five identified life-sustaining technologies on behalf of life-threatened elderly individuals are many

and varied. This chapter is just a sampling of significant ethical arguments and does not treat all

of the relevant ethical issues. Nonetheless, important findings emerge:

● Categorical distinctions can be helpful in

clarifying the specific points at which ethical

dilemmas exist but do not lend themselves

readily to clear criteria for decisionmaking.

● According to several ethical traditions, the

relevant considerations in decisionmaking are

the patient’s wishes and interests, in light of

his or her condition; societal allocation of resources; and the necessity for some societal

rules, such as the prohibition of killing.

● Each of the life-sustaining technologies discussed in this assessment raises a heterogeneous, though not necessarily a unique,

combination of ethical issues and questions.

● There is insufficient data from which to draw

any conclusions about a possible relationship

between suicide among the elderly and the

use of life-sustaining technologies.

Photo credit. Foster Medical Corp.

Intergenerational needs and life-sustaining technology.

IMPLICATIONS

●

●

●

●

●

Whether or not an individual act of withdrawing a life-sustaining technology constitutes suicide or assisted death depends directly on

how these terms are defined.

The way in which health care services should

be distributed to elderly persons depends

directly on the theory (or theories) of justice

that one holds and that can be effectively

translated into public policies.

The way in which life-sustaining technologies

should be distributed to terminally ill elderly

persons will depend in part on whether age

is adopted as an appropriate criterion for allocation and on the availability of a particular technology.

There are important arguments, both pro and

con, for using chronological age as a criterion

in the allocation of technological resources.

An important factor in the alternative arguments about the use of chronological age in

the allocation of resources is whether one

adopts an “over-a-lifetime” or “slice-of-time”

perspective concerning individual quality of

life and human welfare.
162 ● Life-Sustaining Technologies and the Elderly

CHAPTER 4 REFERENCES

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the Dying Patient,” 1973. Available on request from

AMA, Chicago, IL.

2. Angell, M., “Respecting the Autonomy of Competent Patients,” New Engkmd Journal of Medicine

310:1115-1116, 1984.

3. Barry, B., “On Social Justice,” Oxford Review

(Trinity Term), pp. 33-43, 1967.

4. Barry, B., The Liberal Theory of Justice: A Critical

Examination of the Principle Doctrines in A Theory of Jusfi.ce by John l?awls (Oxford: Clarendon

Press, 1973).

5. Beauchamp, T. L., “Suicide,” Matters of Life and

Death, T. Regan (cd.) (New York, NY: Random

House, 1980).

6. Beauchamp, T. L., and Childress, J. F., Principles of

Biomedical Ethics (New York, NY: Oxford University Press, 1983).

7. Bedell, S. E., and Delbanco, T. L., “Choices About

Cardiopulmonary Resuscitation in the Hospital,”

New England Journal of Medicine 310:1089-1093,

1984.

8. Boyle, J. M., Jr., “Toward Understanding the Principle of Double Effect,” Ethics 90:527-538, July

1980.

9. Callahan, D., “What Obligations Do We Have to Future Generations?” American Ecclesiastical Review

164:265-280, 1971.

10. Callahan, D., “On Feeding the Dying, ’’Hastings Center Report 13:22, 1983.

11. Capron, A. M., “Ironies and Tensions in Feeding the

Dying,” Hastings Center Report, 14:32-34, 1984.

12. Cassell, E., “The Nature of Suffering and the Goals

of Medicine, ” New England Journal of Medicine

306:639-645, 1982.

13. CBS, 60 Minutes episode, Jan. 5 & 12, 1986.

14. Childress, J. F,, “An Ethical Analysis of Withdrawal

From Life-Sustaining Technologies and Assisted

Death,” prepared for the Office of Technology

Assessment, U.S. Congress, Washington, DC, September 1985.

15. Daniels, N., “Am I My Parents’ Keeper?” Midwest

Studies in Philosophy 7:517-520, 1982.

16. Evans, A. L,, and Brody, B. A., “The Do-NotResuscitate Order in Teaching Hospitals,” Journal

of the American Medical Association 253(15):2236-

2239, 1985.

17. Fost, N., and Cranford, R. E., “Hospital Ethics Committees)” Journal of the American Medical Association 253(18), 1985.

18. Gelding, M., “Obligations to Future Generations, ”

The Monist 56:85-89, 1972.

19. Kelly, G., “The Duty To Preserve Life,” Theolo#”cal

Studies 12, December 1951.

20. Lo, B., and Jensen, A. R., “Ethical Decisions in the

Care of a Patient Terminally 111 With Metastatic

Cancer)” Annals of Internal Medicine 92:107-111,

1980.

21. Lo, B., and Steinbrook, R, L., “Deciding Whether

To Resuscitate, ” Archives of Internal Medicine

143:1561-1563, 1983.

22. Lynn, J., and Childress, J. F., “Must Patients Always

Be Given Food and Water?” Hastings Center Report 13:17-21, 1983.

23. Mangan, J. T., “An Historical Analysis of the Principle of Double Effect,” Theological Studies 10:41-

61, 1949.

24. Mayo, D.J., “Contemporary Philosophical Literature on Suicide: A Review,” Suicide and Ethics, M.P.

Battin and R.W. Maris (eds.) (New York, NY: Human Science Press, 1983).

25. Meilander, G., “On Removing Food and Water:

Against the Stream, ’’Hastings Center Report 14:11-

13, 1984.

26. National Commission for the Protection of Human

Subjects in Biomedical and Behavioral Research,

The Belmont Report: Eth”cal Guidelines for the Protection of Human Subjects of Research, DHEW Publication No. 1 (OS) 78-0012 (1978).

27. The New York Times, Gosnell, Mariana, “Rational

Suicide?” June 17, 1979.

28. Nielsen, K. “Radical Egalitarian Justice: Justice as

Equality,” Social T’heozy and Practice 5(2):209-226,

1979,

29. Nozick, R., Anarchy, State and Utopia (New York,

NY: Basic Books, 1974).

30. President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Be-
Ch. 4—Ethical Issues ● 163

havioral Research, Deciding To Forego Life-Sustaining Treatment (Washington, DC: U.S. Government

Printing Office, March 1983).

31. Rachels, J., “Active and Passive Euthanasia, ” Nelt’

England .Tournal of Medicine 292:78-80, 1975.

32. Rachels, J., “Barney Clark’s Key)” Hastings Center

Report 13:17-19, 1983.

33. Ramsey, P., Ethics at the Edges of Life; Medical and

34

35

36

37

Legal Intersections (New Ha\ren, CT: Yale University Press, 1978).

Rawls, J., A Theoruv of Justice (Cambridge, MA:

Belknap Press of Harvard University Press, 1971).

Redleaf, D. L., Schmitt, S. B., and Thompson, W. C.,

“The California Natural Death Act: An Empirical

Study of Physicians’ Practices, ” Stanford Law’ Re-

~~je}~ 31:913-945, 1979.

Rollin, B., Last Wish (New York, NY: Linden/Simon

& Schuster, 1985).

Sacred Congregation of the Doctrine of the Faith,

Declaration on Euthanasia, \’atican City, May 5,

1980.

38. Siegler, M., and Weisbard, A.J., “Against the Emerging Stream: Should Fluids and Nutritional Support

Be Discontinued?” Archhres of Internal l[edicine

145:129-131, 1985.

39. Tonne, H., ‘(Suicide: Is It Autoeuthanasia?” Humanist 39;44-45, 1979.

40. ~’catch, R. M., Death, Dying, and the Biological Re\-

o)ution (New Haven, CT: Yale Uni\rersituv Press,

1976).

41. Veatch, R. M., “Distributive Justice and the Allocation of Technological Resources to the Elderly, ” contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC,

December 1985.

42. Veatch, R. M., A Theory of Medical Ethics (New

43

York, NY: Basic Books, 1981).

Wanzer, S. H., Adelstein, S. J., Cranford, R. E., et al.,

“The Physician’s Responsibility Toward Hopelessly

111 Patients, ” Newr England .lournal of Aledicine

310:955-959, 1984.
Chapter 5

Resuscitation
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........ . ...,........167

Description of Resuscitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..168

Cardiac Arrest: The Need for Resuscitation. . . . . . . . . . . . . . . . . . . . . . . .......168

History of Resuscitation . . . . . . . . . . . . . . . . . . . . . . . .......................169

Procedures Involved in Resuscitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...169

When To Discontinue CAR. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...174

Special Considerations in the Use of CPR for Elderly Patients . .............174

Treatment Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .....,175

Utilization and Cost of Resuscitation . . . . . . . . . . . . . . . . . . . . . . . ..............175

Utilization of Resuscitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........175

Cost of Resuscitation. . . . . . . . . . . . , . . . . . . . . . . . . . . . . . . . . . ...............177

Reimbursement for Resuscitation . . . . . . . . . . . . . . . . . . . . . .................177

Outcomes of Resuscitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............178

Clinical Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....178

Psychological Outcomes of Resuscitation . . . . . . . . . . . . . . . . . . . . . ...........181

Making Decisions About Resuscitation . . . . . . . . . . . . . . . . . . . . . ...............183

Factors That Affect Physicians’ Decisions About Resuscitation . .............183

The Decisionmaking Process . . . . . . . . . . . . . . . . . . . . . . . ...................185

Physicians’ Directives About Resuscitation . . . . . . . . . . . . . . . . . . . . . . . ........189

Resuscitation of Patients With DNR Orders by Emergency Medical Services ..193

DNR Orders and Other Life-Sustaining Treatments . . . . . . . . . . . . . . . . . .. ....193

Resuscitation Policies in Hospitals and Other Institutions . ...................195

Findings and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....197

Chapter 5 References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...198

Box

Box Page

5-A. Majority Opinion of OTA Advisory Panel Members Regarding Informed

Consent for Resuscitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .189

Figures

Figure No. Page

5-l. Administration of Basic Life Support . . . . . . . . . . . . . . . . . . . . . ............171

5-2. Examples of Airway Devices Used in Advanced Cardiac Life Support ... ...l72

5-3. information About CPR Provided to Residents of One Nursing Home .. ....190

5-4. Form Used by One Nursing Home To Obtain Resident Preferences

About CPR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........................191

5-5. Resuscitation Policy Adopted by One Hospital . . . . . . . . . .................196

Table

Table No. Page

5-1. Potential Complications Associated With Specific Resuscitation

Procedures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............182
Chapter 5

Resuscitation

INTRODUCTION

In a person whose heart is healthy, the functioning of the heart is intricately timed and orchestrated to supply the brain, lungs, body tissues, and organs with blood. When a person’s

heart stops beating, or beats so ineffectively that

blood circulation is not sufficient to supply the

brain with oxygen and nutrients, the brain is irreversibly damaged within minutes, spontaneous

breathing cannot be recovered, and death ensues

quickly. Cardiopulmonary resuscitation (CPR)

offers a way to reverse the imminent threat to life,

Developed only 25 years ago, CPR is a widely

applicable means of restoring and maintaining

blood circulation and breathing in a person who

has experienced a cardiac arrest. Basic CPR, that

is, external cardiac massage and mouth-to-mouth

ventilation, is familiar to most Americans, and

many people have been trained to perform it. Advanced resuscitative techniques, such as the use

of drugs and electrical shock to the heart, are less

familiar to most people and are almost always performed by trained professionals.

CPR can be applied to anyone whose heart stops

beating. Hence, all of the roughly 2 million people who die in the United States each year—70

percent of whom are elderly–are potential recipients. Because the alternative for a patient in

cardiac arrest is death, ensuring access to CPR

for all who need it is a vital public concern. Government agencies and nonprofit organizations,

such as the American Red Cross and the American Heart Association, have developed large-scale

educational programs to teach the basics of CPR

to laypersons in local communities. Nevertheless,

some elderly and other people who might benefit from CPR do not receive it. There are concerns

that elderly people may be less likely than younger people to receive CPR because of a widespread

perception that elderly people are less likely to

benefit from it.

Somewhat paradoxically, given concerns about

the underuse of CPR, many observers are also concerned about the possible overuse of CPR. Poor

long-term survival rates, the risk of injuries and

complications associated with the procedures, and

the possibility of survival with severe physical and

neurological impairment have prompted some observers to question the appropriateness of this

technology for certain patients, especially those

who are terminally ill and severely debilitated.

Because of the suddenness of cardiac arrest and

the urgency of initiating treatment quickly if at

all, decisions about CPR must be made momentarily after the arrest or at some time before an

arrest occurs. In the community, cardiac arrest

is usually unexpected. Paramedics, emergency

medical technicians, and trained laypersons who

perform CPR in this setting often know nothing

of the patient background and are not qualified

to assess the patient’s medical condition. In the

community, therefore, the presumption is generally that efforts to resuscitate victims of a cardiac

or respiratory arrest should be initiated automatically, as quickly as possible, and continued until

effective spontaneous circulation and breathing

are restored, the patient is transferred to a hospital, or the rescuer is exhausted and unable to

continue.

CPR is also usually initiated automatically in hospitals. For some patients, however, the possibility of cardiac arrest is anticipated, and a decision

about whether to administer CPR is reached in

advance. For some of these patients, a decision

is made to withhold CPR.

There are many problems in arriving at and implementing decisions to withhold CPR. In some

cases, physicians, nurses, and other caregivers disagree about whether a particular patient should

be resuscitated. Many physicians do not discuss

decisions about resuscitation or the possibility of

a Do-Not-Resuscitate (DNR) order with their patients (5). DNR orders are sometimes inadequately

documented or not documented at all in the patient’s medical chart. Some health care facilities

167
168 ● Life-Sustaining Technologies and the Elderly

do not allow physicians to write DNR orders, and a formal policy about how such decisions should

some physicians avoid writing such orders for fear be made in order to be accredited by JCAH (67).

of legal liability (43,9 o). This chapter discusses resuscitation techniques,

their use for elderly patients, and the processes

These problems have prompted many observers by which decisions about CPR are made. CPR into encourage adoption of clearly formulated in- cludes a range of techniques that vary in their

stitutional policies to define procedures for mak- technological sophistication and invasiveness.

ing decisions about resuscitation (14,69,71). In re- Since decisions about resuscitation also involve

sponse, the Joint Commission on Accreditation of decisions about which of these techniques should

Hospitals (JCAH) has developed a standard that be used, the chapter includes some information

will require hospitals and nursing homes to have about the various techniques.

DESCRIPTION OF RESUSCITATION

Cardiac Arrest: The Need for

Resuscitation

People need resuscitation as a result of either

cardiac or respiratory arrest. Cardiac arrest is the

sudden unexpected cessation of heartbeat and

blood pressure. It leads to loss of consciousness

within seconds, irreversible brain damage in as

little as 3 minutes, and death within 4 to 15 minutes (14)87).

Respiratory arrest is the sudden cessation of effective breathing (see ch. 6). Without effective

breathing, the blood is unable to supply adequate

oxygen to the heart and brain or eliminate carbon dioxide from body tissues. Consequently, respiratory arrest will be followed within minutes

by gradual loss of consciousness and then by

cardiac arrest. Ascertaining whether a cardiac arrest was caused by a respiratory arrest is often

impossible, and virtually all cardiac arrests are

accompanied within minutes by cessation of

breathing (14).

Although the majority of people who suffer

cardiac arrest are elderly, the nature and underlying causes of their arrest vary widely. Cardiac

arrest frequently results from a myocardial infarction (loss of blood supply to the heart, commonly known as a heart attack), but can result

from a variety of other conditions, including kidney failure, hemorrhage, and metabolic disorders.

The frequencies of various causes of cardiac arrest cannot be precisely ascertained, because the

underlying medical conditions that result in arrest are often not known or not reported, and

an autopsy is usually not performed (13).

In the vast majority of patients, cardiac arrest

is the end point in the course of coronary artery

disease. Atherosclerosis—the accumulation of

fatty substances and growth of fibrous coronary

tissue in the walls of arteries underlies most coronary artery disease and is a distinctly age-related

disorder.

Many patients who experience cardiac arrest

also have other physiological problems that contribute to their arrest by placing strain on the

heart. The most common problems are renal failure, diabetes, pneumonia, and cancer—conditions

that are more prevalent among elderly than younger people (6).

Any one of various heart disturbances—arrhythmias, asystole, or electromechanical dissociation—

may precede or initiate cardiac arrest. The most

serious of the cardiac arrhythmias (abnormal

heartbeats) is ventricular fibrillation, in which the

ventricles of the heart twitch or beat in an uncoordinated pattern without effective contraction

and cardiac output. Ventricular fibrillation occurs

in approximately 60 to 90 percent of cardiac arrests taking place in the community and in 33 to

40 percent of those taking place in the hospital

(14). It is also the most frequent cause of death

prior to hospital admission (66). Other arrhythmias associated with cardiac arrest are ventricular tachycardia, which is characterized by rapid

regular or only slightly irregular beats; and

bradycardia, or abnormally slow heartbeats.

Asystole (the absence of electrical activity in the

heart) and electromechanical dissociation (the failure of a normal electrical impulse to cause con-

+
Ch. 5—Ressucitation • 169

traction of the heart) cause a smaller proportion

of cardiac arrests than arrhythmias (26). Arrhythmias, asystole, and electromechanical dissociation

can be diagnosed with the aid of an electrocardiograph (EKG) machine, that measures the electrical activity of the heart and graphically depicts

the heartbeat by a series of waves.

History of Resuscitation

Attempts to resuscitate people with cardiac or

respiratory arrest began almost as early as recorded history. Modern closed-chest cardiac massage, however, was not developed until 1960,

when W.B. Kouwenhoven and his associates first

applied it (45). Prior to that time, cardiac arrest

was sometimes treated by surgically opening the

patient’s chest and directly massaging the heart.

With the method developed in 1960, however, a

rescuer rhythmically applies pressure to the patient’s sternum (breastbone); this pressure compresses the heart and restores circulation without opening the patient’s chest.

Successful application of closed-chest cardiac

massage and the increased technological capability to monitor heart rhythm and to safely apply

electrical shock all contributed to the rapid and

widespread acceptance of CPR in hospitals during the 1960s and shortly thereafter by emergency

rescue teams.

It was soon discovered that the outcome of CPR

depended largely on how quickly it was initiated.

In many cases where people collapsed outside a

hospital, brain damage or death occurred before

an ambulance arrived. In an attempt to minimize

this time lag and to bring the ability to resuscitate

out of the hospital and into the community, public agencies and nonprofit organizations developed

programs to teach the basics of CPR to community laypersons, high school students, and others

(14).

Procedures Involved in

Resuscitation

Many people think of resuscitation as it is portrayed on television—a bystander, a paramedic,

or an emergency room physician pumping on a

person’s chest until the person either dies or is

revived. In fact, however, resuscitation consists

of a wide array of procedures, often involving

sophisticated and specialized techniques and

equipment.

It was a Thursday morning, rounds were done,

and the intern and medical student sat down for

a quick breakfast. Suddenly, from overhead, “Code

blue . . . Code blue . . . Code blue . . . Code blue . . .!”

They leapt up and ran.

. . . When they arrived, resuscitation was already

in progress. Another medical student was rhythmically pushing on Mr. H’s chest, and having difficulty with the position, climbed onto the bed to

continue. A large cart loaded with drugs was near

the door to the room, manned by two nurses.

Another nurse was giving him oxygen with a mask

and a bag, and an anesthesiologist was standing

by, ready to put a breathing tube in Mr. H’s trachea. The intern periodically drew blood from the

groin and a medical student ran the blood samples to the lab to measure oxygen and acid.

Above the confused chatter, shouts of “atropine!”, “more bicarb!”, “epinephrine!”, and other

names of drugs could be heard from the resident

who took charge of the code. The EKG machine

spewed out yards of paper strips showing no heart

beat. The resident took the defibrillator paddles

several times, applied them to the reddened, raw

chest, shouted “All clear!”) and everyone momentarily moved back. The lifeless body jerked with

each shock (14).

In describing the spectrum of procedures involved in resuscitation, it is helpful to divide the

process into two stages: basic and advanced life

support. Basic life support is administered to a

person in cardiac arrest by a “rescuer,” either a

trained bystander, an emergency medical technician, a paramedic, a nurse (especially if initiated

in a hospital), or any other health professional.

Advanced cardiac life support includes basic

cardiac life support and other specialized equipment and techniques and is administered by paramedics or other medical personnel. In the hospital, advanced cardiac life support is usually

initiated by nurses and continued within minutes

by a team of physicians.

Basic Life Support

Basic life support consists of what are referred

to as the ABCs of resuscitation: Airway, Breath-
170 . Life-Sustaining Technologies and the Elderly

ing, and Circulation (see fig. 5-1).1 When a rescuer arrives at the scene of a collapsed victim,

he or she determines that the person is unresponsive and immediately calls for help. After positioning the victim and ensuring that the victim’s airway is open, the rescuer determines whether he

or she is breathing by looking for chest movement

and listening and feeling over the mouth for

airflow.

If no breath is detected, the rescuer performs

mouth-to-mouth ventilation. This involves blowing air into the victim’s mouth and determining

whether the victim’s lungs are being ventilated

by watching for chest movement and hearing or

feeling the air escape during exhalation.

If a carotid pulse at the victim’s neck is absent,

the rescuer begins external chest compressions.

Rhythmic compressions of the sternum provide

circulation to the heart, lung, brain, and other

organs. Blood circulated to the lungs by external

chest compressions will receive enough oxygen

to maintain life when accompanied by properly

performed mouth-to-mouth ventilation (64).

Advanced Cardiac Life Support

Advanced cardiac life support consists of basic

life support and the techniques and machinery

that sustain life after the immediate, manual steps

are taken. It frequently involves the use of special equipment and procedures for establishing

an airway and maintaining effective ventilation

and circulation.

Depending on the setting, condition of the victim, and skill of the available personnel, an airway device may be inserted through the victim’s

nose or mouth into the throat to keep open a path

for air behind the tongue (see fig. 5-2). The airway of an unconscious victim is most effectively

secured with an endotracheal tube (a tube inserted

through a person’s nose or mouth into the trachea), An endotracheal tube can protect the patient’s esophagus during artificial ventilation (14).

To maintain ventilation, a bag-valve unit (a mask

attached to a bag) can be used to deliver either

*Although ABC stands for Airway, Breathing, and Circulation, the

American Heart Association agreed in 1985 that ABC should stand

for Assess, Breathe, and Circulate, as this was a more accurate

description of what the rescuer must do (28).

room air (when the mask is placed over the mouth

and nose and the bag is squeezed) or oxygen (when

a source of supplemental oxygen source is attached to the bag-valve device). A bag-valve unit

or a mechanical ventilator can be attached to an

esophageal obturator airway (see fig. 5-2), or an

endotracheal tube. The efficacy of ventilation is

determined by monitoring the patient’s pulse, pupil reaction and size, and spontaneous respirations, and by periodically testing the blood for oxygen and carbon dioxide levels.

Supplemental oxygen is used as soon as it becomes available. This is necessary to correct low

levels of oxygen in a patient’s bloodstream.

Several devices can help to maintain circulation.

A cardiac arrest board, placed under the patient’s

back, provides a firm surface to aid in compression of the chest and heart. Gas- or oxygen-powered mechanical devices for external chest compression may be used to allow consistency in the

depth and length of compressions. These devices

are found in some emergency rooms and intensive care units (ICUs) and maybe used in addition

to manual chest compression for cases where

prolonged resuscitative efforts are necessary.

An electrical defibrillator is used to convert ventricular fibrillation to a normal heart rhythm. A

defibrillator produces a high-voltage current averaging 4,000 volts, which is delivered over 4 to 12

milliseconds via two paddles placed externally on

the patient’s chest, on either side of the heart,

When left in place, the paddles can also detect

the patient’s heart rhythm and display it on a monitor (14). An electrical defibrillator can also be used

to convert ventricular tachycardia to a normal

heart rhythm, a process called cardioversion. Like

defibrillation, cardioversion involves a brief electrical shock to the heart, delivered through two

paddle electrodes placed on the patient’s chest;

cardioversion differs from defibrillation in that

it is timed to the heart’s electrical activity.

In adult patients who experience cardiac arrest

while being monitored, a precordial thump (a

sharp, quick, blow administered over the midportion of the sternum within the first minute

after cardiac arrest) may be effective in converting ventricular fibrillation or ventricular tachycardia to a normal rhythm. Recent studies indicate that precordial thump should not be used
Ch. 5—Resuscitation ● 171

Figure 5-1 .—Administration of Basic Life Support

A: Initial steps of cardiopulmonary resuscitation. Top, Determining unresponsiveness; center, calling for help; bottom, positioning the victim.

B: Opening the airway. Top, airway obstruction produced by tongue and epiglottis;

bottom, relief by head-tilt/chin-lift.

C: Determining breathlessness.

D: Rescue breathing. Top, mouth-to-mouth; bottom, mouth-to-nose,

E: Determining pulselessness.

F: External chest compression. Left, locating the correct hand position on the

lower half of the body; right, proper position of the rescuer with shoulders directly

over the victim’s sternum and elbows locked.

D

SOURCE: National Conference on Cardiopulmonary Resuscitation (CPR) and Emergency Cardiac Care (ECC). “standards and Guidelines for Cardiolmlmonary Resuscitation (CPR) and Emergency Cardiac Care (ECC), ” Journal of the American Medical Association 255(21 

63-216 0 - 87 - 5 : QL 3
172 ● Life-Sustaining Technologies and the Elderly

Figure 5-2.—Examples of Airway Devices Used in Advanced Cardiac Life Support

A nasopharyngeal airway may be inserted through the

nose to the back of the throat to keep a path for air open.

An oropharyngeal airway may be inserted through the

mouth to keep a path for air open.

An endotracheal tube with an inflatable cuff may be in- . . . . . serted through the nose or mouth (as pictured here) into

the trachea. It is the most effective means of securing the

airway of an unconscious patient.

An esophageal obdurator airway consists of a cuffed

tube that is inserted through the mouth into the esophagus. Airholes in the portion that is in the throat allow

passage of air into the trachea. A sealed mask prevents

air leakage from the patient’s mouth and nose. When the

cuff in the esophagus is inflated, air is prevented from

entering the stomach, stomach contents are prevented

from entering the trachea and an open airway exists that

can be used with a bag-valve device (shown) or a mechanical ventilator.

SOURCE: C.K. Cassel, M. Silverstein, J. La Puma, et al., “Cardiopulmonary Resuscitation in the Elderly,” prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, November 1985.
Ch. 5—Resuscitation ● 173

Photo credit: Hewlett Packard Co.

A mechanical device for external chest compression,

demonstrated on a mannikin here, is sometimes used

instead of manual chest compression, especially when

prolonged resuscitative efforts are needed.

in out-of-hospital resuscitation because of the risk

that it may thump the victim into a more malignant rhythm (13).

Drugs, administered either intravenously, by direct injections to the heart, or via endotracheal

tube, play an essential role in advanced cardiac

life support. Some drugs (e.g., sodium bicarbonate)

can treat life-threatening accumulations of acid

caused by lack of oxygen and retention of carbon

dioxide. Many drugs (e.g., epinephrine and atropine) influence heart rate and contractility, as well

as blood pressure. Some drugs (e.g., low doses of

dopamine) dilate blood vessels, and others (e.g.,

methoxamine, phenylephrine, and high doses of

dopamine) constrict them. Other drugs (e.g., lidocaine, procainamide, and bretyllium) can correct

arrhythmias in some cases. Finally, some drugs

can also make a patient with ventricular fibrillation more responsive to electrical shock (14).

Although not a common part of the resuscitation procedure itself, temporary cardiac pacing

is sometimes used to regulate a patient’s heart

rhythm. Temporary pacemakers are ineffective

for some heart rhythm disturbances and tend to

be used late in resuscitation, after other therapies

prove inadequate to establish stable circulation

(22). There are three basic approaches to cardiac

Photo credit: Hewlett Packard Co,

An electrical defibrillator can be used to deliver a shock

to a patient’s chest to restore normal heart rhythm.

pacing during CPR: external, transthoracic, and

transvenous. External pacing uses skin electrodes

to pass repetitive electrical impulses through the

chest wall, to electrically stimulate the heart. In

transthoracic pacing, the physician inserts the pacing electrode through the patient’s chest and into

the heart muscle. In transvenous pacing, the physician inserts the pacing electrode through a large

vein near the patient’s collarbone and into the

heart. In all three cases, the pacing electrode is

connected to an external temporary pacemaker.

Open-chest cardiac massage is the most drastic

means of attempting to restore circulation. This

procedure involves surgically opening the patient

chest and breaking the ribs so that the heart can

be directly massaged. It is sometimes used for patients who fail to respond to standard, closed-chest

methods of resuscitation. The American Heart

Association currently recommends using openchest cardiac massage for patients with penetrating chest injuries, severe hypothermia, cardiac

tamponade (where the sac surrounding the heart

fills with blood or fluid), or anatomical deformity

that precludes closed-chest compression, and in

patients who suffer a cardiac arrest in the operating room when their chest is already open (64).

An in-hospital resuscitation attempt may include

one, all, or any combination of the various meas-
174 ● Life-Sustaining Technologies and the Elderly

ures described above, applied once, repeatedly,

or continuously. There is no theoretical limit to

the number of times a patient can be resuscitated,

although the chance of complications and injuries increases with every attempt. In a hospital,

it is not uncommon for a patient with multiple

cardiac arrests to be resuscitated repeatedly, A

review of 13,266 hospital CPR cases reported in

the medical literature from 1960 to 1980 found

that 11 percent of CPR patients were resuscitated

twice in one hospital stay; 2 percent were resuscitated three times; and about 1 percent were

resuscitated four times (23). One terminally ill patient was reportedly resuscitated 70 times in a

24-hour period (2).

For patients who survive a cardiac arrest, recovery is rarely a simple matter of “waking up”

after the resuscitation is completed. A patient’s

heart rhythm may continue to be abnormal and

may require continuous monitoring, intravenous

medication, or a pacemaker. A patient may also

require continuous infusion of medicine to support his or her blood pressure and maintain effective blood flow (14).

Successfully resuscitated patients are critically

ill due to serious underlying disease, cardiac arrest, and the risk of recurrent cardiac arrest. They

typically require intensive medical care and are

frequently admitted to the hospital’s ICU or coronary care unit (CCU) (14).

When To Discontinue CPR

There is no theoretical limit on the duration of

a resuscitation attempt. Resuscitation attempts

may extend anywhere from a few minutes to

hours, although they usually last 30 to 60 minutes (14). Patients whose hearts begin to beat spontaneously within 15 minutes are more likely to

survive than patients requiring CPR for a longer

time (6).

The 1980 American Heart Association Standards

for Cardiopulmonary Resuscitation and Emergency

Cardiac Care (ECC) state that CPR should be continued until a patient recovers or “is found to be

unresuscitable and is pronounced dead.” In general, death may be determined on the basis of:

1) irreversible cessation of circulatory and respiratory functions, or 2) irreversible cessation of

all functions of the entire brain, including the brain

stem, i.e., brain death (see ch. 2). Brain death cannot be determined before or during resuscitation,

however, because 6 to 24 hours of observation

are needed, along with more than one flatline EKG.

Other indicators of brain death, such as lack of

pupil response and reflexes, are unreliable–

particularly in elderly patients, who may have unreactive pupils due to cataract surgery or who

are taking medications that may affect neurological responses (64). Thus, according to experts,

a decision to discontinue CPR should be based on

a finding of irreversible cessation of cardiovascular function after basic and advanced life support have been properly applied (56,63,64).

Specific clinical criteria for when CPR should

be discontinued have been proposed, but examples of the complete recovery of patients whose

resuscitation would have been terminated under

some of the proposed criteria can be cited (14).

Some observers argue that no criteria would be

appropriate in all cases and that the decision about

when to discontinue CPR must be made on a caseby-case basis (16).

Special Considerations in the Use of

CPR for Elderly Patients

The use of some resuscitative procedures for

elderly patients may be complicated by age-associated illness or physiological changes. Arthritis

of the vertebrae in the neck, a condition that is

common in elderly people can create difficulty

in some of the airway maneuvers. Rheumatoid

arthritis, which frequently affects the joint where

the jaw joins the skull, can interfere with CPR by

making the mouth difficult to open fully. Moreover, age-associated illness or physiological changes

may increase the risk of resuscitation-related injuries (see “Complications and Injuries Associated

With CPR” below). These age-associated problems

are not known to affect short- or long-term survival following CPR (14).

In comparison to younger people, elderly people tend to have less muscle mass, more fatty tissue, and reduced blood flow to the liver and kidneys (two main organs of drug elimination and

metabolism). These age-related physiological changes

may affect the way an elderly person’s body ab-
Ch. 5—Resuscitation ● 175

sorbs, metabolizes, distributes, and eliminates

drugs (see ch. 9). How the drugs used in resuscitation are affected by these changes is not known,

although anecdotal evidence suggests that there

may be increased variability in response among

elderly patients. No guidelines exist for dosages

of these drugs for elderly patients.

Other age-associated problems may impede

monitoring an elderly patient’s response to a resuscitation attempt. Many elderly people have stiffer

arteries than younger people, making their pulse

more difficult to detect (14). Furthermore, some

elderly people take medications that affect their

reflexes and other necrologic responses. Detecting symptoms or changes in neurological status

in such individuals can be difficult.

Although age-associated factors may complicate

resuscitative procedures for some elderly patients,

impede monitoring of their response to treatment,

and increase the risk of resuscitation-related injuries, there is no evidence that CPR is performed

differently on elderly people than on younger people. Many of the procedures must be applied in

full force in order for maximum benefit to be

achieved. Thus, although a patient’s age may affect the decision to resuscitate (see section below

on “Making Decisions About Resuscitation”), once

the decision to resuscitate has been made, the procedures that are used are the same regardless of

the patient’s age, and little is done to reduce any

additional risks associated with advanced age (13).

Treatment Settings

Most large hospitals have the necessary equipment and trained personnel for both basic and

advanced cardiac life support. Some small hospitals do not have an ICU or CCU, and unstable resuscitated patients maybe transferred by ambulance

or helicopter to a larger facility (14).

In nursing homes, the specialized equipment and

the personnel necessary for advanced cardiac life

support are frequently not available. Most nursing homes do not have equipment for defibrillation. Thus, nursing home residents in cardiac

arrest must be transferred to a hospital by ambulance after basic life support measures have

been initiated. Some nursing home personnel are

not even trained in basic CPR (14,41).

In the community, resuscitation is frequently

performed by emergency medical technicians or

paramedics attached to an ambulance rescue

team. Even if basic CPR has been started by laypersons or medical personnel who happened to

be present at the time of a cardiac arrest, it is often

continued by an ambulance rescue team or occasionally a helicopter rescue team.

Emergency medical technicians and paramedics

are trained in basic life support techniques. Since

the 1970s, paramedics have also been trained to

recognize various arrhythmias and use a defibrillator. Apart from the initial, standard treatment

with external cardiac massage, incubation, intravenous line insertion, and defibrillation, however,

all medications and treatment given by paramedics

must be given on the orders of a physician based

in an emergency room and in contact with the

paramedics by radio (26).

CPR skills deteriorate rapidly if not practiced.

With the exception of trained personnel who work

in emergency rooms, ICUs, and CCUs, ambulance

and helicopter rescue teams, and some interns

and residents, few people use CPR often enough

to maintain their skills. There are no data on how

deterioration of CPR skills affects patient survival

in any treatment setting (14).

UTILIZATION AND COST OF RESUSCITATION

Utilization of Resuscitation times the only record of a resuscitation attempt,

and these notes may be difficult to discern and

For several reasons, accurate information on quantify. No government or private agency keeps

the utilization of CPR is difficult to obtain. Exist- records of CPR attempts per se. Furthermore,

ing medical records systems do not necessarily reports of CPR administered in individual hospicode CPR. Thus, the progress notes made in the tals fail to provide information on the number of

patient’s chart by a nurse or physician are some- admissions per year or the number of bed-days
176 • Life-Sustaining Technologies and the Elderly

(days per year in which available hospital beds

are occupied by a patient) associated with CPR (14).

Nursing homes seldom have comprehensive

records of CPR attempts, because many nursing

home residents who are resuscitated are transferred by ambulance to a hospital either before

the arrest occurs or immediately after basic life

support is initiated. Records of CPR attempts in

the community are neither readily available nor

necessarily comparable. Moreover, the records of

emergency ambulance and helicopter rescue

teams often do not include the number of people

in the referral area, the number of ambulance

calls, or the number of emergency room visits (14).

Several other problems limit the availability of

accurate utilization data. In many reports, the patients receiving CPR are inadequately described,

followup information is incomplete, and the population at risk for CPR or from which patients

were obtained is not described or adequately reported. In addition, many reports of CPR include

patients with trauma, hypothermia, or cold water

drowning—groups of patients in whom the indications for CPR, utilization, and outcomes may

differ from other groups. Elderly patients experiencing CPR may not be uniformly distributed in

these groups (14).

As a result of these problems, there are no accurate figures on the number of persons who receive CPR in this country. Data from the 1984

National Hospital Discharge Survey, based on information from the medical records of a national

sample of patients discharged from short-stay nonFederal hospitals, indicate that 120)

000 persons

of all ages received one or more of five specified

CPR procedures; about 73)000 (61 percent) of

these persons were over age 65 (82). These numbers from the National Hospital Discharge Survey are much lower than estimates based on other

sources on information, and they probably significantly underestimate the number of persons

who receive CPR in hospitals.3

Data from other sources suggest that 370,000

to 750,000 or more persons of all ages may receive CPR in hospitals each year. One basis for

this estimate is the observation that approximately

700,000 persons discharged from U.S. hospitals

in 1984 had a diagnosis of acute myocardial infarction (81); although how many of these persons received CPR is unknown, it is likely that

many of them did, Moreover, many patients with

diagnoses other than myocardial infarction also

receive CPR. In addition, data from several studies

in individual hospitals suggest that 1 to 2 percent

of patients in those hospitals received CPR (6,47).

Applying this percentage to the approximately

37,200)000 patients discharged from short-term

non-Federal hospitals in 1984 (81) yields a rough

estimate that 372,000 to 744,000 patients may have

received CPR in hospitals nationally.

The best available data suggest that cardiac arrest occurs in the community in 58 to 71 persons

per 100,000 nationally (14). Yet, how many persons who experience cardiac arrest in the community receive CPR or how many are included

in the hospital figures cited above is not known.

No information about the number of persons who

receive CPR in nursing homes or hospices is

available.

Data compiled for OTA indicate that approximately 55 percent of hospitalized patients who

receive CPR are elderly (14). Studies in some hospitals have found an even higher percentage of

elderly persons among patients who received CPR.

Of 294 patients who received CPR in a Boston hospital from 1981 to 1982, for example, only 20 percent were under 60 years old; 23 percent were

%lne reason the National Hospital Discharge Sumey data may un.

derestimate the number of people receiving CPR in hospitals is that

the survey collects information on up to four medical procedures

for each patient, and CPR may not be included as one of the four

~he five procedures are conversion of cardiac rhythm; cardi- in some cases. This is especially likely since the survey form requests

opulmonary resuscitation, not otherwise specified; other electric four “surgical and diagnostic procedures” (80). Moreover, CPR atcountershock of the heart; closed-chest cardiac massage; and open- tempts may only be noted in the physician’s or nurses’ progress

chest cardiac massage (80). notes and thus not easily extracted in the survey process.
Ch. 5—Resuscitation ● 177

60 to 70; 34 percent were 70 to 80; and 23 percent were over 80 (6).

If an average of 55 percent of patients who receive CPR in hospitals are elderly, and 370,000

to 750,000 or more persons of all ages receive CPR

in hospitals, then 204,000 to 413,000 or more

elderly persons may receive CPR in hospitals. Although very rough, this range corresponds to

other estimates based on the finding that CPR is

performed in about one-third of all hospital deaths

(14). In 1984,689,000 elderly persons died in shortstay non-Federal hospitals (81); if CPR was performed in one-third of these hospitalizations (or

about 230,000 cases) and if death occurs in 75 to

90 percent of hospital CPR attempts (as discussed

below), then it can be estimated that 255,000 to

307,000 elderly patients received CPR in hospitals.

Studies of patients receiving CPR in the community indicate that their mean age is 62. Detailed

age distributions are rarely reported (14), but it

is likely that most of the patients receiving CPR

in both settings are over age 65. More than 75

percent of patients resuscitated in the community

and 70 percent of those for whom resuscitation

is attempted in the hospital are men (14), probably because men are more susceptible to atherosclerosis than women.

Cost of Resuscitation

Costs associated with resuscitation include the

direct costs of procedures, equipment, and staff

for a resuscitation attempt in the community or

hospital; the cost of intensive care following resuscitation; and the cost of hospitalization following

intensive care.

Some studies have analyzed the cost of community CPR by comparing program costs of establishing and maintaining an emergency medical

service with the number of lives saved. OTA is

not aware of any studies that measure the direct

cost of procedures, equipment, and staff for a community CPR attempt. It is likely that the costs vary

greatly from program to program, depending on

the range of procedures performed and equipment available, the proportion of volunteer to paid

staff, and the size of the service area.

In-hospital CPR may include any of several combinations of procedures (incubation, ventilation,

defibrillation, pacemaker insertion, laboratory

tests, drugs), and the costs of particular resuscitation attempts vary, depending on which procedures are used, the duration of each procedure,

the number and type of personnel involved, and

the costs associated with each. OTA is not aware

of any studies that have observed and measured

these components during actual CPR and then

ascertained their costs.

To determine the charges associated with inhospital CPR, one would need to observe the event,

record the components, determine from the hospital bill which of the components had, in fact,

generated charges, and total these charges. OTA

is not aware of any study that has done this.

Patients alive at the conclusion of a resuscitation attempt are in almost all cases cared for in

an ICU or CCU. One published report examined

the charges for 2,693 patients admitted to a medical ICU between 1977 and 1979 (78). The mean

hospital bill for 41 resuscitated patients with discharge diagnoses of cardiopulmonary arrest who

required active interventions was $7,235; the

mean stay in the ICU for these patients was 4.3

days (out of a total average stay in the hospital

of 12.2 days). The hospital charges for these patients generally reflected the patient’s length of

stay in the ICU, the length of the patient’s total

stay in the hospital, and the degree of intervention needed.

Reimbursement for Resuscitation

The Federal Government bears a large share

of the costs generated by resuscitation of elderly

people. The reason is that virtually all individuals

who are successfully resuscitated are admitted

to a hospital, and hospital care for most elderly

patients is reimbursed by Medicare. Under Medicare’s Part A (Hospital Insurance) prospective payment system (PPS), each hospitalized patient is

assigned to a diagnosis-related group (DRG) on admission to the hospital (see ch. 2). Patients admitted

in cardiac arrest maybe assigned to the DRG category for cardiac arrest (DRG 129); patients who

suffer an arrest while in the hospital, however,
178 ● Life-Sustaining Technologies and the Elderly

have typically been assigned to a DRG other than

DRG 129 at the time of hospital admission (14).

Medicare’s hospital payment rates are higher

for some DRGs than for others, depending on the

average cost of care associated with each diagnosis. Anecdotal evidence suggests that hospitals try

not to assign patients to DRG 129 because the

Medicare payment rate for DRG 129 is less than

for other DRGs to which these patients may reasonably be assigned (14).

The Federal Government also pays for care

administered in Veterans Administration (VA) hospitals. OTA has not determined the number or

proportion of elderly patients resuscitated in these

hospitals or the costs of their care.

Emergency medical services that administer CPR

in the community are funded from a variety of

sources, including Federal, State, and local governments and private insurers. Some communities have emergency medical services that are run

on a volunteer basis, without government subsidies, and these services usually do not charge patients. Medicare Part B (Supplementary Medical

Insurance) covers some charges associated with

CPR in the community.

OUTCOMES OF RESUSCITATION

Clinical Outcomes

Resuscitation can deliver a person from the

brink of death. It can restore a patient to his or

her prior lifestyle within a few weeks, with only

bruises and soreness as reminders of the ordeal.

Fortunate patients can resume their everyday

activities, as the following case illustrates.

charged to the ward.
Ch. 5—Resuscitation • 179

turn to a small waiting room where four famiIy

members were sitting.

After 2 hours, the doctors and nurses stopped

trying. The chaplain reported that a daughter

wanted to see her father.

Reluctantly, she was allowed in. As perople slowly

filed out and started cleaning up, the daughter

desperately pleaded, "Dad! Come back! Come

back, Dad! It’s me, . . . come back for me, Dad!’)

After she saw no response, the chaplain took her

back to her family. A nurse firmly pulled the curtain around the bed (14).

Some patients die despite repeated resuscitation

over a period of hours. A “spiraling down” effect

is often seen in these patients, as they arrest and

are resuscitated again and again, growing continually weaker (74).

If resuscitation is unsuccessful in a hospital,

death is generally accompanied by chest compression, a tube in the throat, needles stuck in the groin

and elsewhere, and possibly several high-energy

electrical shocks. In extreme cases, a needle is inserted directly into the heart or the chest is opened

and ribs broken to directly massage the heart. It

is not known how the dying person perceives this

process, if at all, or whether the process increases

the suffering associated with death. Most patients

who die during CPR are unconscious (4). In the

very few studies asking survivors about their

memories, most have no memory of any part of

the resuscitation process, although, as discussed

below, some say they would not want it done again

(6,30).

Long lingering death after CPR appears to be

the publicized exception rather than the common

occurrence (6). Most patients who die following

resuscitation do so within the first few days.

The medical literature on outcomes of resuscitation exhibits several methodologic problems in

addition to the limitations already described for

utilization data. The greatest problem in comparing available studies is that different studies use

different definitions of success (e.g., restoration

of a spontaneous pulse, restoration of circulation,

or remaining alive for 24 hours) and different definitions of survival (e.g., living until discharge from

hospital, for 1 month, for 6 months, for a year,

or more). The way these terms are defined determines, to a large extent, the outcomes that are

reported (14).

Although widely varying success rates have

been reported, on average, one-third to one-half

of CPR attempts in hospitals are initially successful. For patients with cardiac arrhythmias, the initial success rate is better-about two thirds of CPR

attempts with these patients initially succeed. Not

all patients who are successfully resuscitated recover enough to be discharged from the hospital,

however. Only about one-third to one-half of those

who are successfully resuscitated (approximately

10 to 25 percent of those for whom CPR is attempted) survive long enough to be discharged

from the hospital.’

Very little information is available about the outcomes of CPR in nursing homes. One study of

1,918 persons admitted to a New York State nursing home over an 8-year period found that only

32 persons (2 percent) received CPR in the facility. Of these, 9 persons (28 percent) survived more

than 24 hours, and 5 of the 9 (16 percent of all

those who received CPR) were still alive 30 days

later (42).

The hospital admission rate for patients resuscitated in the community is a practical measure

of the initial success rate of community CPR. Using

this measure, several studies indicate an average

success rate of 35 percent (range 23 to 44 percent) for community CPR (14). Among persons

who are successfully resuscitated in the community and hospitalized, the percentage who recover

enough to be discharged from the hospital varies

greatly, depending on the cause of their cardiac

arrest, whether the cardiac arrests were witnessed, how soon after cardiac arrest CPR was

initiated, and whether paramedic care or only

basic life support was provided (21).

Long-term survival of patients resuscitated in

any setting is rare (14,69). Recurrent sudden

cardiac death is the most likely eventual cause of

death in those initially surviving cardiac arrest.

4These overall averages are based on reviews of the literature by

the President’s Commission for the Study of Ethical Problems in

Medicine and Biomedical and Behavioral Research (69) and by Cassel, et al. (14).
180 ● Life-Sustaining Technologies and the Elderly

Factors That Affect the Clinical

Outcome of Resuscitation

A patient’s underlying diagnosis and severity of

illness are major determinants of resuscitation outcome (6,15,30). One study of 294 patients resuscitated in a Boston hospital found, for example,

that although 14 percent of the patients survived

to leave the hospital, no patients who had metastatic cancer or pneumonia and only 2 percent of

patients with renal failure survived to leave the

hospital (6). Patients with multiple diseases usually fail to recover from cardiac arrest despite

prolonged CPR and eventually die through failure of one organ system or another (57).

A patient’s level of functioning prior to cardiac

arrest is a predictor of outcome of resuscitation

(6,15). One study found that only 4 percent of patients who had been homebound prior to their

cardiac arrest survived cardiac arrest and CPR,

compared to 27 percent of patients who had been

active outside the home before their cardiac arrest (6).

The nature of a patient’s cardiac arrest is another

strong predictor of outcome. Patients with ventricular fibrillation are more likely to survive than

patients with asystole or electromechanical dissociation (6,21). Patients with ventricular tachycardia have intermediate success rates (89).

Some CPR procedures are not effective when

certain heart irregularities are present. Defibrillation, for example, is an effective means of restoring heartbeat for patients with ventricular fibrillation but not for patients with asystole (37).

Likewise, pacing can be effective for asystole but

is ineffective in treating ventricular fibrillation and

electromechanical dissociation (72).

The time between occurrence of the cardiac arrest and initiation of resuscitative measures—

“down time”–greatly influences the patient’s

chance of recovery. In the past decade, at least

nine studies have found that survival following

cardiac arrest is related to early initiation of CPR

(21).

Long-term survival in patients resuscitated after a delay of more than 5 minutes has been documented, but the chance of brain damage increases

(16,21). The 1974 American Heart Association

standards stated:

The technique of CPR is most effective when

started immediately after cardiac arrest. If cardiac

arrest has persisted for more than 10 minutes,

CPR is unlikely to restore the victim to his prearrest central nervous system status (62).5

Duration of the resuscitative effort is also a

strong predictor of outcome. As duration increases, survival rates decrease. Resuscitation efforts lasting longer than 30 minutes are usually

unsuccessful (6,16,57), Some patients have recovered completely following 2 to 3 hours of resuscitative effort, but such cases are usually associated with hypothermia in drowning or with drug

overdose (14).

The relationship of outcome to the number of

resuscitative attempts that a patient receives during a single episode has not been determined. The

poorer outcomes observed with more resuscitation attempts in some studies may be due to the

longer total duration that naturally accompanies

a greater number of attempts.

A patient’s age is not a good predictor of the

outcome of resuscitation (6,14,15,30,31,32,48,68).

Some studies show no significant difference between success rates for elderly and younger patients (see, e.g., references 6 and 15). Other studies

(e.g., reference 30) show that elderly patients as

a group have somewhat poorer outcomes than

younger patients but that the poorer outcomes

in elderly patients reflect the higher prevalence

of multiple diseases in these patients. Although

the likelihood of multiple diseases increases with

age, any particular older individual may not be

affected. Thus, ail these studies support the conclusion that a patient’s age alone is not a good

predictor of resuscitation outcome.

Within the elderly population, the initial success rate for CPR does not decrease significantly

in older age groups (12,14)32). One study of 1,345

persons who received CPR in the community

found no significant difference in the percentage

5The brain may be viable for a longer period of time in special

cases of barbiturate and sedative overdose, hypothermia, and

drownings.
Ch. 5—Resuscitation ● 181

of patients in four age groups over 65 (ages 65

to 69; 70 to 74; 75 to 79; and 80 to 99) who were

resuscitated and hospitalized. The percentage of

successfully resuscitated patients who recovered

enough to be discharged from the hospital, however, decreased significantly with age—from 15

percent of patients aged 65 to 69 to only 8 percent of those aged 80 to 99 (79). Thus although

patients in the very old age groups were successfully resuscitated as often as patients aged 65 to

69, patients in the very old age groups were less

likely to survive to be discharged from the hospital.

The same study (79) found that cardiac arrest

was witnessed more often for elderly patients.

Yet bystanders provided CPR prior to the arrival

of paramedics more often for younger patients.

Use of Other Life-Sustaining

Technologies Following CPR

Following resuscitation, many patients require

not only admission to an ICU or CCU and extended

hospitalization but also invasive hemodynamic

monitoring, prolonged mechanical ventilation, or

dialysis. In one study, 78 percent of the patients

admitted to hospital ICUs for a cardiac arrest required such a major intervention (18).

The life-sustaining technology most likely to be

required for patients who survive resuscitation

is mechanical ventilation (14). Respiratory function is often inadequate immediately after successful resuscitation, and recovery to independent

breathing may take days or weeks. There is some

evidence that outcome for patients receiving ventilatory assistance following CPR is not as good

as that of other patients (88), probably because

patients requiring such assistance tend to be more

ill in general than patients who do not need such

assistance.

Complications and Injuries

Associated With CPR

Resuscitation can be accompanied by a wide array of complications and potential injuries that

may be long-lasting and even life-threatening, particularly for individuals who are already seriously

ill.

Brain damage is the result of cardiac arrest and

the consequent interruption in the supply of oxygen to the patient’s brain. Some people think of

it as a complication of resuscitation, and, in fact,

delayed initiation of CPR and inadequately performed CPR increase the risk of brain damage in

persons who are successfully resuscitated.

Each of the various basic and advanced life support procedures carries its own set of risks and

potential complications. The major problems that

may be encountered as a result of procedures used

during resuscitation are summarized in table 5-1.

The most common resuscitation-related injuries

include rib fracture, collapsed lung, ruptured

stomach, and broken teeth. In survivors of resuscitation, these problems can cause pain, make

breathing difficult, impede weaning from a mechanical ventilator, or produce other problems

that complicate postresuscitative care.

Little information is available about the incidence of resuscitation-related injuries, but one

study of 63 survivors of cardiopulmonary arrest

found such injuries in over 25 percent of the patients (10). Elderly patients, because they are more

likely to have osteoporosis (brittle bones), are at

an increased risk of fractures, but no age-specific

data are available to indicate whether such injuries are more common in elderly survivors of

resuscitation than younger ones (14).

Psychological Outcomes of

Resuscitation

In the aftermath of a cardiac arrest, many survivors experience psychological repercussions.

Several of the resuscitated patients in a study at

Beth Israel Hospital in Boston reported that the

hardest part of their subsequent hospitalization

was adjusting to “feeling sick” and dealing with

their new loss of independence (6). Depression

was present in most of these patients at the time

of their discharge, although it tended to resolve

itself within 6 months. Every resuscitated patient

in this study, regardless of age, reported some decrease in daily activities. In many cases, the fear

of another arrest led patients to regulate their daily

lives and limit their activities to ensure immediate access to medical care.

Surveys of patients’ attitudes towards resuscitation indicate that some survivors do not wish

to be resuscitated again, although they had not
182 . Life-Sustaining Technologies and the Elder/y

Table 5=1.-Potential Complications Associated

With Specific Resuscitation Procedures

Basic life uppoti procedures:

● regurgitation

● aspiration

• gastric distension (with mouth-to-mouth)

● rib fracture

● collapsed lung

● ruptured stomach

● spinal cord compression

Tracheal Intubation:

● insertion of the tube into the esophagus

● trauma to the trachea or esophagus

● damage to the vocal cords

● narrowing of the trachea following tube removal

Defiberllation:

● myocardial necrosis (damage to heart muscle)

Pracordial thump:

● a more dangerous heart rhythm

Drugs:

● Sodium bicarbonate (in excess)

—alkalosis

—sodium and water overload

—paradoxical cerebral spinal fluid acidosis

● Atropine

—ventricular fibrillation

—tachycardia

—increased oxygen demand by the heart with increased

heart rate

● Calcium chloride

—intracellular damage

Temporary cardiac pacemakers:

● External pacers

—severe muscle contractions

—local tissue burns

● Transvenous pacers

—local trauma

—infection

—laceration of the heart muscle

—blood clots

—ventricular arrhythmias

● Transthoracic pacers

—collapsed lung

—heart injury, including laceration

—laceration of blood vessels

SOURCES: C.K. Caaael, M.D. SIlversteln, J. LaPuma, et al., “Cardiopulmona~

Resuscltatton in the Elderly,” prepared for the Office of Technology

Assessment, U.S. Congress, Washington, DC, November 1985; R.H.

Falk, L. Jacobs, A. Sinclair, et al., “External Noninvaaive Cardiac Pacing in Out-of-Hospital Cardiac Arrest,” Cr/t/ca/ Care Med/c/ne 11(10):

779-782, 1983; and J.R. Roberts and Ml. Greenberg, “Emergency

Transthoracic Pacemaker,” Anna/s of Emergency Medicine 10(11):

800-812, 1981.

been opposed to their first resuscitation and they

are content with their present quality of life. One

study found that when 38 survivors of resuscitation were asked if they would choose to be resuscitated in the future if it were necessary, 21 (55

percent) said yes, 16 (42 percent) said no, and 1

was ambivalent. At a followup 6 months later,

three patients had changed their minds: two patients no longer desired resuscitation and one said

she would choose it (6).

Resistance to a second resuscitation seems to

be found particularly among older survivors. A

study in a hospital in Nuremberg, Germany, found

that older survivors of resuscitation tended to be

more negative about resuscitation than younger

survivors (30). Eighteen 6-month survivors, all of

whom were satisfied with their current life and

state of health, were asked about their opinions

toward resuscitation. All of the nine survivors under age 60 said they would agree to another resuscitation, but seven of the nine survivors over age

60 said they would not (the other two had no opinion). Similarly, six of the nine survivors under age

60 thought it reasonable to resuscitate aged persons under all circumstances, and three thought

it reasonable only with certain indications. In contrast, seven of the nine survivors over age 60

thought it reasonable to resuscitate aged persons

only on certain indications, and two had no

opinion.
Ch. 5—Resuscitation . 183

MAKING DECISIONS ABOUT RESUSCITATION

In the first 15 years following the development

of CPR, physicians tended to implement both basic

and advanced life support measures without hesitation whenever the need arose. Over time, however, there has been a growing recognition among

physicians and others of problems associated with

resuscitation, particularly the low chance of success and the risk of debilitating or life-threatening

complications.

In 1976, the New England Journal of Medicine

published two articles on withholding life support,

particularly resuscitation, from terminally ill patients (20,70). An accompanying editorial entitled

“Terminating Life Support: Out of the Closet” (29)

praised the two articles for making public the

“open secret” that resuscitation (and other lifesustaining treatments to a lesser degree) were being withheld or withdrawn from some terminally

ill patients.

Since then, criteria and procedures for deciding to withhold CPR have been widely analyzed

and debated. Although debate about these criteria

and procedures continues, it is now generally accepted that CPR is not an appropriate treatment

for every patient in cardiac arrest. A strong presumption in favor of resuscitation remains, nevertheless. As one observer has noted:

[CPR] is the only medical intervention that can

be performed by nonphysicians without a physician’s order; a physician’s order is required only

if CPR is to be withheld, even in the patient home

(90).

In the case of persons who experience unexpected cardiac arrest in the community and in

the case of most patients in hospitals and other

health care facilities, it is assumed that CPR should

be attempted, because the alternative for the individual is certain death. For some patients, however, CPR is withheld. Withholding of CPR may

occur as the result of a unilateral decision made

by a physician at the time of the person’s cardiac

arrest. Alternatively, CPR maybe withheld on the

basis of a prior decision by the physician sometimes in consultation with other health care providers, the patient, and/or the patient’s family. In

such cases, a DNR order—a directive to withhold

CPR—may be written in the patient’s medical

chart.

This section discusses the factors that affect physicians’ decisions to withhold CPR, the usual role

of physicians, nurses, and patients and their families in the decisionmaking process, what is known

about the current use of DNR orders, and problems associated with their use. The same factors

are associated with physicians’ decisions to withhold CPR as reflected in research on: 1) their stated

attitudes about which types of patients should not

receive CPR; 2) their actual decisions to withhold

CPR, especially in hospitals; and 3) their decisions

about which patients should have a DNR order.

Data from all three sources are summarized

below.

Factors That Affect Physicians’

Decisions About Resuscitation

Many factors enter into physicians’ decisions

about whether resuscitation is appropriate for a

given patient. First and foremost are indicators

of the potential for successful outcome. Physicians

are not obliged to provide futile or useless treatment, and a decision not to resuscitate is generally considered appropriate when CPR would be

futile (51). Thus, a patient’s underlying diagnosis

and other determinants of resuscitation efficacy

(see “Outcomes of Resuscitation”) are important

considerations in physicians’ decisions to withhold

CPR.

The presence of a terminal illness in a patient

is frequently mentioned by physicians as a reason for withholding CPR. In the Portland, Oregon area, 87 percent of 78 emergency medicine

physicians surveyed said they would stop CPR on

a patient in the end stage of a terminal disease

(16). Similarly, cancer was the most common diag-
184 ● Life-Sustaining Technologies and the Elderly

nosis of patients in one Boston hospital who died

without receiving resuscitative measures (6), and

several studies have shown that patients with cancer are more likely than other patients to have

a DNR order (25,73).

Severity of illness is another frequently mentioned factor in physicians’ decisions about resuscitation. Many physicians believe that resuscitation

should be withheld from patients with multiple

or severe diseases that are chronic, progressive,

or irreversible (15,40). Some physicians argue that

although CPR is technically possible in such patients, it is right to exclude patients with chronic,

progressive, disabling diseases who are highly dependent on others (32).

Some physicians believe that it is appropriate

to withhold CPR from some patients who have

severe illnesses but who are not terminally ill. One

study of DNR orders in a medical ICU found that

a patient severity of illness was the most important predictor of his or her DNR status, but over

60 percent of patients with DNR orders did not

have a diagnosis of terminal illness (91). Likewise,

in a community hospital, 40 percent of those with

DNR orders did not have a terminal illness documented in their medical record (49).

Another factor that is considered in resuscitation decisions is “downtime.” The Portland study

of emergency medicine physicians found that 44

percent said they would cease CPR if it had been

initiated in the community more than 10 minutes

after the patient went into cardiac arrest (16).

Down time is associated with brain damage, as

discussed earlier, and one expert in resuscitation

has cautioned that “litigation is more likely to follow when the patient survives (a cardiac arrest)

with permanent brain damage than when the patient dies” (56).

In addition to factors that have been shown to

affect the medical outcome of resuscitation, such

as severity of illness and “downtime,” several other

factors that do not affect the medical outcome of

resuscitation often play an important role in physicians’ attitudes and decisions about its use. One

such factor is the patient’s mental status. When

presented with case descriptions of one demented

and one mentally retarded patient in cardiac arrest and two cognitively normal patients also in

cardiac arrest, 63 physicians in a Philadelphia internal medicine residency program said that they

would be less likely to initiate CPR on the demented and mentally retarded patients than the

cognitively normal patients (27). Likewise, the Portland study found that 54 percent of the 78 physicians stated that they would cease CPR if they

learned that a patient had a known severe mental

impairment, such as dementia or mental retardation (16).

A patient’s mental status may also influence physicians’ decisions about whether a patient should

have a DNR order. In one Boston hospital, 49 percent of patients who were given a DNR order had

abnormal mental status (i.e., they were comatose

or disoriented), compared to only 15 percent of

a control group of patients who did not have abnormal mental status (73). In another hospital, terminally ill patients who were mentally alert were

generally not given a DNR order (36).

Another factor that influences resuscitation decisions is a patient’s residence in a nursing home.

One study found that the knowledge that a patient in cardiac arrest had been admitted to the

hospital from a nursing home was enough to discourage some physicians from continuing CPR;

18 percent of 78 emergency room physicians surveyed in Oregon said they would cease CPR if the

patient had been transferred from a nursing home

(16). Another study found that patients who were

admitted from a nursing home were three times

more likely to be given a DNR order than a matched

control group of patients who were not admitted

from a nursing home (73).

Finally, although research shows that patient

age alone does not alter the outcome of resuscitation and many authors recommend against the

use of age as a factor in decisions about CPR

(40,55,59), in practice, age plays a significant role

in these decisions (15,19). Gordon and Hurowitz

described a bias against elderly patients in physicians’ decisions about whether to administer CPR:

For younger patients, a physician’s decision not

to resuscitate is usually made after conscious deliberation. This is not always so for the elderly,

and yet, most physicians do not resuscitate many

of their elderly patients. It is not clear at precisely

what level the decision to resuscitate is made, but
Ch. 5—Resuscitation . 185

in the majority of elderly deaths, CPR attempts

have not been carried out (31).

A survey of physicians in a Philadelphia internal medicine residency program found that a patient’s age influenced their attitudes about whether

to administer CPR. When presented with two

hypothetical cases, one of a 32-year-old patient

with a pulmonary embolism and the other of a

98-year-old patient with the same condition, all

of the 63 physicians responding to the survey

stated that they would be much more likely to

resuscitate the younger patient than the older one.

The physicians’ disinclination to resuscitate older

patients was also evident, although less strongly,

when the age of the older patient was changed

to 64 (27).

There is some evidence that the patient’s age

is a predictor of DNR designation. A study of ICU

patients in a Cleveland hospital found the average age of the 71 patients with such orders was

66 years, while the average age of the 435 patients

without DNR orders was less than 58 years (91).

This difference could not be solely attributed to

the facts that DNR patients are usually seriously

ill and that the incidence of serious illness increases

with age, because 166 seriously ill patients without DNR orders had an average age of less than

61 years.

The rationale for the use of a patient’s age as

a factor in decisions about administering CPR is

not clear. Some physicians may not resuscitate

elderly patients particularly in instances of unobserved cardiac arrest or when the effort is not

promptly successful because of their perceptions

that CPR may simply prolong the process of dying and that many elderly patients fear death less

than prolonged dying or dependence on others.

According to one physician:

The vast majority of my patients over 65 tell

me that 1) they do not dread death, and hope that

theirs will be sudden; and 2) they do fear incarceration in a nursing home or total dependence

on others (3).

Another physician, who asked 153 decisionally

capable elderly (aged 66 to 98 years) nursing home

residents whether they wanted to receive CPR in

the event of a cardiac arrest found that 77 residents (50 percent) did not want CPR; 11 residents

(7 percent) did want it; 64 residents (42 percent)

wanted their physician to choose at the time; and

I did not respond. Considering the large number

of residents who did not want CPR, that physician concluded:

Although age alone does not preclude candidacy

for CPR, the changed attitudes and values of old

people are at least as germane to case selection

as are any other consideration. As a group, the

elderly tend to be realistic and to often recognize . . . that sometimes “death is the best life has

to offer” (86).

The Decisionmaking Process

A patient’s physician has the authority to make

a decision about initiating or withholding CPR, but

he or she may not be available at the time the decision must be made. Many other individuals may

also be involved in the decisionmaking process.

The urgency of the event and the involvement

of many people with different points of view and

different information about the patient can create a complex and sometimes chaotic situation,

as illustrated in the following case:

old, is brought into the emer-

‘that he suffered a heart attack

and was not breathing for an unknown period

of t_tated by paramedics .

 . . .

Approximately 1 hour later a "Code blue” is

called. Mr. R has suffered a cardiac arrest. By the

time Ms. C responds to the code, the code team
186 . Life-Sustaining Technologies and the Elderly

Potential Participants in Decisions

About Resuscitation

In general, only a physician may decide to withhold CPR. Emergency rescue teams have standing orders to initiate CPR as quickly as possible.

In hospitals, staff members are generally required

to initiate CPR unless there is a physician’s order

not to resuscitate a particular patient.

In hospitals that have staff physicians, residents,

and interns, these individuals frequently make decisions about resuscitation. A study in one hospital found, for example, that the patient’s physician was involved in decisions to withhold CPR

in only 39 percent of cases, and residents and interns made the decision in the other cases (80).

Nurses cannot legally make decisions about

resuscitation, yet research indicates that they

often have strong feelings about whether their

patients should be resuscitated. It is not known

how often nurses are involved in such decisions.

One study found that nursing involvement in decisions about DNR orders had been documented

in only 10 percent of cases; however, nurses had

played an active role in assessing the patient’s and

family’s attitudes about the patient’s condition and

treatment and encouraging open discussion between the patient and the physician about the patient’s resuscitation status (7).

In the event of a sudden and unexpected cardiac

arrest, a patient cannot participate in the decision about whether to resuscitate, and the involvement of the patient’s family is severely limited by

time constraints. In the great majority of cases,

however, advance deliberation is possible, and patients and families can be involved in decisionmaking.

Patient and Family Involvement in

Decisions About Resuscitation

Physicians once made decisions about whether

to resuscitate patients behind closed doors, paternalistically protecting their patients from what the

physician believed would be upsetting for the patient. Recent legal developments and changing attitudes of the public as well as many physicians support the rights of decisionally capable adults to

be informed about their medical condition and

to participate in decisions about their medical care,

including resuscitation (1,64).

Yet patients are not always consulted about their

desire for CPR. The findings of one study suggest

that although many physicians believe that patient

participation in resuscitation decisions is important, they often do not act accordingly (5). The

researchers interviewed 157 physicians involved

in the care of 154 patients who had been resuscitated (24 of the patients survived). Almost all the

physicians said they believed that patients should

participate in decisions about resuscitation, but

only 10 percent of the physicians had actually discussed resuscitation with their patients prior to

the patient’s cardiac arrest (s).

Almost all the physicians interviewed thought

they knew what their patients would want, but

their opinions correlated only weakly with the

preferences expressed by the 24 surviving patients, particularly the patients who did not want
Ch. 5—Resuscitation • 187

to be resuscitated. For example, although 8 of the

24 patients stated that they had not wanted CPR,

only 1 of the 16 physicians caring for these 8 patients was aware of this preference; 10 of the physicians thought their patients wanted CPR; 3

thought their patients were ambivalent, and 2 had

no opinion (5).

Other studies indicate that patients are usually

not involved in decisions about DNR orders. A

study of 95 patients with DNR orders in a Boston

hospital found that consent for the DNR order

had been given by the patient in only 18 percent

of the cases. The family had given consent in 66

percent of the cases (73). A study of DNR orders

in one ICU found that patients’ wishes were listed

as a reason for the decision in only 15 percent

of the cases. There were no written justifications

for the DNR orders in 42 percent of the cases,

but in cases where there was documentation, it

more commonly included poor prognosis (59 percent) or the perception of poor quality of life (24

percent) than patient preferences (9 I).

At the time decisions about DNR orders are

made for them, many patients of all ages are not

decisionally capable. In one ICU, 55 percent of

patients with DNR orders were unable to participate in decisionmaking because of coma or reduced consciousness (92). In another hospital, 76

percent of patients for whom a DNR order was

written were unable to participate in the decision

as a result of preexisting dementia, newly acquired

coma, or other conditions that caused reduced

consciousness or cognitive impairment. Only 11

percent of the patients, however, had been too

cognitively impaired to participate in decisionmaking at the time of their admission to the hospital (7).

Even for patients who are decisionally capable,

physicians may consult the family rather than the

patient. A study of DNR orders in three Texas

teaching hospitals found that the patient and/or

family was involved in 83 percent of decisions not

to resuscitate; in at least 20 percent of these cases,

the decision was discussed with the family, not

the patient, even though the patient was considered decisionally capable (25). As one ethicist has

noted, failure to involve decisionally capable patients in a decision to withhold CPR in the event

of a cardiac arrest is a serious ethical problem (85).

Decisions to resuscitate maybe discussed with

patients and families even less often than decisions not to resuscitate (90). In the three Texas

teaching hospitals mentioned above, researchers

found that physicians’ decisions that patients

should be resuscitated in the event of cardiac arrest had been discussed with only 22 percent of

the affected patients or their families (25).

Some physicians refrain from discussing resuscitation with their patients in order to protect

them or because they feel it is unnecessary to

bring up the issue (5). Some physicians also believe that patients will initiate a discussion about

resuscitation if they wish. Many patients, however, believe that physicians would rather not discuss treatment options, particularly if the discussion might lead to an emotional scene, might take

a lot of time, or could be interpreted as implying

lack of trust (l). In addition, many physicians have

difficulty discussing issues related to death or dying (see ch. 10). As one physician has noted, finding the “right time” for such discussions is also

difficult:

Despite all arguments favoring open discussion,

it is difficult to broach the issues of death and

treatment limitation with a patient or family. No

time seems like the right time. When patients are

relatively healthy, we do not want to upset them

needlessly; when they are terribly sick, we do not

want to upset them further. If we wait too long,

they may become incompetent. There is no simple answer to this question of timing. In general,

it is easier if discussions about these issues have

been part of the ongoing physician/patient relationship, instead of being precipitated for the first

time by a crisis (90).

Some physicians and other health care providers

are more reluctant to discuss treatment options

with older patients than younger ones. This may

be because they assume that older patients prefer to have treatment decisions made for them;

because they assume that older patients will not

understand the discussion; or because older patients are more likely than younger ones to have

hearing or speech impairments that may interfere with communication. Thus, elderly people

may be less likely than younger people to be involved in decisions about their treatment.
188 ● Life-Sustaining Technologies and the Elder/y

Disagreement Among Participants in

Decisions About Resuscitation

Even when patients and their families are consulted, decisions about resuscitation are not easily made. A consensual decisionmaking process

that involves many people may remove the full

burden of the decision from the shoulders of the

physician, but can also make the process even

more difficult.

Family members may disagree about the appropriate treatment, as the following case illustrates:

A patient’s physician and staff physicians, residents, and interns may also disagree about whether

the patient should be resuscitated. OTA is not

aware of any research on the frequency of such

disagreements when a decision about resuscitation is made without advance deliberation at the

time of a patient’s cardiac arrest. One study of

DNR orders at three Texas hospitals, however,

found that staff physicians disagreed with the decisions about DNR made by patients’ physicians

for 43 (6 percent) of the 758 patients: only 1 of

the 43 disagreements involved a patient who had

a DNR order; the remainder involved patients

whom staff physicians thought should have a DNR

order but did not (25).

Sometimes nurses disagree with patients’ physicians and with staff physicians, residents, and

interns about the appropriate treatment decision

for a particular patient. Although the patient’s physician is ultimately responsible for the decision,

several observers argue that physicians should

carefully consider decisions about a patient’s DNR

status that meet with persistent, thoughtful disagreement from staff nurses. They point out that

nurses sometimes have a greater awareness of

patient and family emotional responses and treatment preferences than the physician (50,90).

In some instances, a physician may disagree with

the patient or family about whether resuscitation

should be provided. Some physicians who disagree

with a patient’s or family’s directive not to resuscitate override that directive. A physician may do

this when a patient is not terminally ill or has few

serious conditions. In such cases, the physician

acts in what he or she considers the patient’s “best

interest,” reasoning, for example, that “resuscitation is not what the patient meant when she said

that she wanted no extraordinary measures taken,”

or that “the patient was just depressed when he

signed the DNR order and will be thankful later”

(4,11).

Conversely, some physicians override a patient’s

or family’s wishes for treatment when they believe that their demands for resuscitation are unreasonable or that treatment will not benefit the

patient (51). unilateral decisions by physicians not

to provide CPR when the patient or family has

requested it are controversial, however, and increase risk of litigation. To avoid these problems,

some physicians may give a verbal order not to

resuscitate the patient but fail to document the

order in the patient’s medical record (52).

Obtaining Informed Consent

for Resuscitation

Informed consent for resuscitation is usually not

obtained in any treatment setting, partly because

of the strong general presumption that all patients

who experience cardiac arrest should be resuscitated unless there is a physician’s order to withhold CPR. Some observers have noted that the lack

of a requirement for informed consent for resuscitation supports a lack of communication between physicians and patients (75). At least minimal discussion about many other invasive medical

procedures is ensured because informed consent

is required. Resuscitation differs from these procedures in that its need is sudden and often unanticipated. Yet advance deliberation is theoretically possible in virtually all cases.

There is currently much debate about the

desirability of requiring informed consent for

resuscitation at some point during a patient’s hospitalization. Some observers favor such a requirement as a means of ensuring prior discussion of

the resuscitation decision. According to one physician:
Ch. 5—Resuscitation ● 189

It would seem that the time has arrived when

all patients should have an opportunity to express

their desire for or against resuscitation on routine admission to the hospital. The use of a standard written form for patients to consider on admission might force a more thorough discussion

of the issue between patient and physician (75).

In a meeting of the advisory panel for this OTA

assessment, the majority of panelists favored requiring informed consent for resuscitation after

the first 24 hours of hospitalization for patients

for whom the issue is appropriate (see box 5-A).

Other observers believe that requiring informed

consent for resuscitation is unrealistic and inadvisable. They argue that requiring physicians to

discuss resuscitation with all hospitalized patients

who may die “would provoke unnecessary anxiety” (15).

Trying to ascertain a patient’s preference about

resuscitation at the time of hospital admission may

be inappropriate for several reasons. At the time

they enter the hospital, patients are often under

emotional stress and may not be able to fully and

properly consider a resuscitation decision. They

•

medical team

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may fail to fully understand the consequences of

their decision or to anticipate all circumstances

in which cardiac arrest might occur. Temporary

depression at the time of admission to a hospital

might color some patients’ decisions. Finally, the

vitally important decision about whether or not

to resuscitate might get buried amidst the numerous questions patients must answer and forms

they must sign on hospital admission.

Some nursing homes solicit residents’ preferences about resuscitation at the time of admission or during their stay in the facility. The written information about CPR provided to residents

by one such facility and the form used to obtain

residents’ responses are illustrated in figures 5-3

and 5-4. The blank spaces at the bottom of the

form used to obtain residents’ responses are for

changes in residents’ previously expressed wishes.

When a resident of the nursing home is hospitalized, a photocopy of the form expressing his

or her preference about resuscitation is sent to

the hospital with other medical information (86).

physicians ) Directives About

Resuscitation

The Use of DNR Orders

The use of DNR orders has at least two widely

understood goals: 1) to ensure that physicians who

are most familiar with a particular patient decide

on the appropriateness of resuscitation attempts

before such attempts are needed and without the

stress induced by a sudden arrest; and 2) to encourage physicians to consult with patients, or

with the families of decisionally incapable patients,

to determine their wishes concerning further

treatment (25).

Some observers suggest that the following procedures should be followed by physicians issuing DNR orders (59):

●

●

●

The physician fully evaluates the patient’s

medical condition.

The physician, with the rest of the health care

team, determines the appropriateness of a

DNR order for the patient.

When the patient is decisionally capable, the

DNR decision is reached between the patient

and physician.
190 ● Life-Sustaining Technologies and the Elderly

● When the patient is decisionally incapable,

the physician consults family members or

other surrogate decisionmakers.

● If the patient or family members disagree with

the DNR order, it is not implemented.

● Once the DNR decision is made, the physician discusses its meaning with the other

health care personnel involved in the patient’s

care (59).

There are no national data on the percentage

of patients with DNR orders. Data from individual hospitals indicate the percentage varies among

different hospitals. Recent studies in hospitals in

San Francisco and Boston have found that 3 to

4 percent of all patients have DNR orders (7,49,

52)73), whereas 9 percent of patients in three

Texas hospitals had DNR orders (25).

Figure 5.3.—information About CPR Provided to Residents of One Nursing Home

THE MATHER HOME

1615 Hinman Avenue

Evanston, Illinois, 60201

To Our Residents:

In all procedures, whether performed on our Health Center or in the Evanston

Hospital, you--the patient--will have final governance over what is done for you and you

will be given full disclosure of all facts involved to enable you to make the right decision.

The objective of all examinations and treatments is your well being and comfort.

Therefore, we do not subscribe to heroic measures to sustain life if such measures would

cause great suffering and if life would be of poor quality afterwards. Neither, on the

other hand, can we do less than support you humanely in a lingering illness.

This brings us to the final consideration: cardiac arrest. It happens in infinitely

varied circumstances: inappropriately, in the young, with all other systems intact;

appropriately, in our own age group, as a result of general failure of interdependent

systems. Since cardiac arrest stops all pumping action of the heart, cardio-pulmonary

resuscitation is instituted at once in all hospitalized patients because the brain will not

tolerate more than four minutes of no circulation without permanent damage. Cardiopulmonary resuscitation, or CPR, is a manual maneuver which rhythmically compresses

the heart between the front and back of the chest by pushing the breast bone down. [n

this way, circulation can be maintained until electroshock can be arranged to start the

heart up again.

The problem in age is that the ribs are no longer elastic, but brittle, so that the

pushing required to squeeze the heart effectively regularly breaks ribs. These sometimes

lacerate the lung as well. Only rarely, at this predictable cost, can we actually achieve

our objective of happy survival.

Our request that you give the attached statement careful consideration follows

established policies. You may wish to discuss the issue with your family and/or with the

Home’s physician. Please complete the form, insert it in the enclosed envelope, seal the

envelope and place it in the slot box in our Mail Room.

Administration

SOURCE: The Mather Home, Evanston, IL.
Ch. 5—Resuscitation . 191

Figure 5-4.— Form Used by One Nursing Home To Obtain Resident Preferences About CPR

THE MATHER HOME

1615 Hinman Avenue

Evanston, Illinois, 60201

To: The Mather Medical Department

Subject: PATIENT’S WISH REGARDING CARDIO-PULMONARY RESUSCITATION

(supplemental form)

I have been fully informed about Cardio-Pulmonary Resuscitation, its techniques,

its objectives, its successes and failures.

I further understand that in the event of cardiac arrest from any cause in the

hospital, I will automatically and immediately be given CPR unless this has been ruled

out in advance by my attending physician, who must be guided by my prior informed

decision.

Based upon my consideration of this information, I elect the option indicated below:

1.

2.

3.

I do not wish CPR under any circumstance.

I do wish CPR to be performed in any situation of cardiac arrest regardless of

the attendant circumstances.

I wish my physician to make the decision regarding the propriety of CPR at

whatever time it may become a contingency, and give the force of my wish to

his decision.

Date Option Signature

SOURCE: The Mather Home, Evanston, IL.
192 ● Life-Sustaining Technologies and the Elderly

Studies in 14 ICUs across the country found that

the frequency of DNR orders varied from less than

1 percent to 14 percent of all patients (91,92).

These variations were not explained by differences in patient characteristics in the different

ICUs and may instead reflect differences in physician attitudes toward aggressive treatment (92).

The use of DNR orders is beginning in a few

nursing homes (see “Resuscitation Policies in Hospitals and Other Institutions”) but is not as common in nursing homes as in hospitals. For many

nursing home residents, the critical decision with

regard to resuscitation is often a decision not to

hospitalize the resident, thus limiting treatment

to that available in the nursing home (8).

Agreement between physicians and family members about a patient’s DNR status maybe difficult

to reach because many family members fear that

a patient with DNR orders will be neglected by

the medical staff, DNR policies commonly state

that the administration of other forms of care

should be independent of the decision to withhold resuscitation. The withdrawal of caregivers

from patients with DNR orders has been clinically

observed, however, and may be a particular problem for elderly patients (46).

Disaggregating Decisions About

Treatment: DNI and DNT Orders

Patients and their families often come into contact with the health care system during periods

of personal crisis. At such times, they may request

that “no heroics” be provided or, conversely, that

“everything possible” be done. These broad directives are open to a variety of interpretations by

health care providers, and patients and families

sometimes fail to consider or to understand the

implications of their requests.

Resuscitation can be the starting point for prolonged dependence on other technologies such

as mechanical ventilation. The patient and/or family members who request “no heroics” may feel

quite differently about a fairly simple procedure

like external cardiac massage than they feel about

more invasive techniques like open-chest massage,

defibrillation, and pacing. Yet there is no way to

distinguish among life-sustaining technologies

when wishes are expressed in global terms such

as those just noted. This ambiguity demonstrates

the need for clear definition of terms.

A DNR directive can itself be made clearer by

the disaggregation into a variety of more specific

directives. With partial codes, CPR is initiated, but

drugs are not administered, incubation is not performed, or resuscitation is stopped after a predetermined period of time (51). Do-Not-Treat

(DNT) orders prohibit all active treatment, while

Do-Not -Incubate (DNI) orders state that the range

of resuscitative efforts short of incubation may

be performed. The decision of whether or not to

intubate may in the mind of the patient or family

be separate from the decision to administer external chest compressions (25), and some patients

may desire a partial code.

“Show Codes)) and “Slow Codes))

Sometimes, rather than issue a written DNR order, a physician may verbally direct staff to perform a few resuscitative procedures to reassure

the patient’s family that “everything was done”

(51, but with the intention of letting the patient

die. This has been called a “show code.” A similar

method that is used to reassure the family is a

“slow code”—the physician may direct health care

personnel on call to “Walk, not run, if the patient

arrests.” Or the physician may ask the nurses to

page him or her personally rather than alert the

CPR team over the loudspeaker, A slow code increases the chances of permanent brain damage,

because in order to be effective, CPR must be instituted with all possible speed (14).

Slow and show codes are considered by many

to be dishonest and entirely inconsistent with

established ethical principles. Moreover, they can

place caregivers in legal jeopardy (43). Yet they

are frequently applied when an explicit DNR order cannot be written, either because it has not

yet been discussed with the family or because

there is disagreement among the family, the patient, and the physician. For patients who are not

terminally ill, for example, a DNR decision is often

difficult to make. The phenomena of slow and

show codes has prompted some observers to call

for continuing education of caregivers and other

strategies to discourage these practices (65,71,90).

Legal Concerns About Physicians’

Directives To Withhold Resuscitation

No caregiver has ever been found liable for a

properly derived and documented DNR order, and

caregivers can be held liable for battery if they
Ch. 5—Resuscitation ● 193

resuscitate a patient against the patient’s wishes.

Yet there remains a wide range of beliefs regarding what the law requires (43).

Some health care professionals are reluctant to

withhold resuscitation even with a DNR order because of fear of legal liability—especially if there

is not unanimous agreement with the DNR order

among all the concerned parties. This fear exists

despite one court’s ruling that the appropriateness of a DNR order is a question “to be answered

in accordance with sound medical practice in consideration of the individual patient’s conditions

and prognosis” (38).

Caregivers are also uncertain about withholding CPR from decisionalIy incapable patients with

no available guardian to authorize a DNR order.

In rare cases, they seek recourse in the courts,

but they more commonly resuscitate or perform

a “slow code.”

In some cases, physicians who have issued DNR

orders without the knowledge of patients or their

families have tried to protect themselves from liability by leaving no record of the DNR order. In

1984, a special grand jury investigating a death

in a Queens, New York hospital found that the

hospital had been using an informal “purple dot”

system to denote which of the patients were not

to be resuscitated in the event of a cardiac arrest.

Nurses recorded DNR orders for hospital staff by

affixing purple decals, available in the hospital gift

shop, to their index cards. The nursing cards including the purple decals were destroyed after

the patients died. The system insured both secrecy,

since neither the patients nor their families were

aware of the DNR decision, and lack of accountability for the decision (76).

In recent years, nurses have become increasingly concerned about their own legal responsibility and liability, and nurses may be particularly

afraid of legal repercussions in decisions about

resuscitation when all parties to the decision do

not agree. Nurses are often first to respond to a

cardiac arrest. If a DNR order has been written

without the knowledge of or against the wishes

of the patient or family, the nurse may bear

responsibility for withholding CPR. Conversely,

if a nurse knows the patient does not want resuscitation but the physician has not written a DNR

order, the nurse could still be in legal jeopardy

for initiating resuscitation. An even more difficult situation occurs when the physician gives an

oral order not to resuscitate the patient, but does

not write a formal order in the chart. Nurses who

follow such oral orders have no documentation

that the physician told them not to resuscitate and

hence they risk legal liability. For these reasons,

many nurses favor the establishment of explicit

institutional policies for decisions about resuscitation (43,44).

Resuscitation of Patients With DNR

Orders by Emergency Medical

Services

The use of CPR by ambulance and other emergency medical personnel for nursing home and

hospice patients who have DNR orders is an issue of growing concern. Emergency medical personnel are usually unfamiliar with a particular

patient’s medical background and treatment plan

and usually have standing orders to resuscitate

all patients in cardiac arrest (58).

In order to avoid resuscitation of patients with

DNR orders, many hospices now instruct their

clients not to activate the emergency medical services system (i.e., call an ambulance) for an apparently terminal event. This approach denies patients relief from severe, potentially reversible

symptoms, however, and denies families assistance

with difficult events (35).

One county in Minnesota has developed a policy allowing paramedics and emergency physicians to honor orders in nursing home records

not to resuscitate or intubate residents (58). The

patient’s physician is required to document the

directive in the medical record and to update it

periodically. The patient with a DNR or DNI order remains eligible for hospitalization and other

emergency care.

DNR Orders and Other LifeSustaining Treatments

Many experts agree that a DNR order should

not imply that other treatments will be withheld

or withdrawn, and they point out that patients

with DNR orders may still be appropriate candi-
194 . Life-Sustaining Technologies and the Elderly

dates for mechanical ventilation, dialysis, and even

surgery and chemotherapy (24,40,59,64,69,91).

Research and anecdotal evidence suggest, however, that such treatments are frequently withheld or withdrawn from patients with DNR orders.

The type of care provided to patients with DNR

orders varies in different hospitals. A study in one

ICU found that treatments such as blood transfusions, dialysis, and mechanical ventilation were

withheld from 68 percent of patients with DNR

orders and withdrawn from 40 percent of patients

with DNR orders (92). A study in another ICU

found, however, that life-sustaining treatments

were not routinely withheld or withdrawn after

a DNR order was written. Ninety-eight percent

of patients receiving mechanical ventilation prior

to the DNR order continued to receive it afterwards. Likewise, vasoactive drugs and intravenous

antibiotics were withheld from less than 25 percent of patients after a DNR order was written (91).

Another study that was not restricted to ICU

patients found that life-sustaining treatments were

withheld or withdrawn from 28 percent of patients after DNR orders were written. Within this

group, mechanical ventilation was withdrawn

from all the patients who had been receiving it

before the DNR order was written; dialysis was

withdrawn from 40 percent of patients who had

been receiving it and withheld from 60 percent

of patients for whom it would otherwise have been

provided; and intravenous fluids and antibiotics

were withheld or withdrawn from about half of

the patients. These changes in level of care were

discussed with the family in 71 percent of the

cases, the patient in 8 percent of the cases, and

neither in 21 percent (7).

Finally, a study of patients in a community hospital (49) found that resource use, as measured

by hospital charges, was reduced significantly after DNR orders were written. On average, charges

for patients with DNR orders dropped $97 on the

day after the DNR order was written. On subsequent days, hospital charges were, on average,

$100 less per day for patients with DNR orders

than for patients without DNR orders—a difference of 40 percent of median daily charges (excluding room rate) for all patients. The level of

care provided for patients with DNR orders varied widely however:

Six percent received no medical care after DNR

orders, that is, they died immediately after DNR

designation, Twenty-five percent received hospicetype care, including pain control, counseling from

the hospital’s Human Support Team, and/or psychosocial support from the nursing staff. Moderate levels of care were given to 27 percent of the

patients; this type of care included the administration of antibiotics for sepsis, fever, or pneumonia and medication for a chronic condition. High

levels of care characterized the treatment given

to 29 percent of patients; patients with multiple

medical problems receiving numerous medications were likely to fall into this group. Finally,

12 percent of patients received maximal levels of

therapy after DNR designation, including renal dialysis, ventilator assistance, hyperalimentation,

major surgical procedures, and/or invasive cardiac

monitoring (49).

There was no relationship between patient age

and the type of care provided after the DNR designation (49).

Although the kinds of treatment provided following DNR designation vary greatly among patients, several studies indicate that the kinds of

care to be provided or withheld are not usually

documented by the physician in the patient’s medical record. As a result, nurses and others who

are caring for such patients may be confused

about what treatments are to be provided (7,

25,49).

In addition, anecdotal evidence suggests that

Medicare payment for hospitalization and some

medical treatments is sometimes denied for patients with DNR orders. The Association of Community Cancer Centers is currently surveying its

member institutions concerning any experience

with Medicare payment denials for terminal patients, particularly those with DNR orders (77)

Finally, although most experts agree that other

life-sustaining treatments should not be automatically withheld or withdrawn when a DNR order

is written, some have questioned the meaning of

a DNR order when other aggressive life-sustaining

treatments are continued (49,91). In this context,

it is interesting to note that data from three studies

show that many hospital patients with DNR orders

(27, 39, and 51 percent, respectively) left the hospital alive (7,49,73).
Ch.. 5—Resuscitation ● 195

RESUSCITATION POLICIES IN HOSPITALS AND

OTHER INSTITUTIONS

With varied and often conflicting attitudes about

the role and responsibilities of the patient’s physician, staff physicians, nurses, patients, and families, and, overall, about the goal of treatment itself, there has developed a need for mechanisms

by which decisions about resuscitation can be

made. In response to this need, some hospitals,

nursing homes, and hospices have developed institutional guidelines and policies governing decisions about resuscitation. One hospital’s guidelines for decisions about resuscitation are shown

in figure 5-5.

One survey of hospitals in five Midwestern

States found that over 60 percent either had or

were in the process of developing a formal resuscitation policy. Two variables—institutional size

and the presence of an ethics committee—were

associated with the presence of resuscitation policies in the responding hospitals (61).

A 1986 survey conducted by the Joint Commission on Accreditation of Hospitals (JCAH) found

that 57 percent of hospitals, 20 percent of nursing homes, and 43 percent of hospices responding to the survey had formal resuscitatation policies

(39). Larger institutions, institutions accredited by

JCAH, and institutions with an ethics committee

were more likely than other institutions to have

a formal resuscitation policy. One resuscition policy identified in the survey was instituted in 1969,

but the great majority had been put into effect

since 1983 (53).

Hospital, nursing home, and hospice resuscitation policies have become more sophisticated and

systematic in the past few years. Terms such as

“competent patient,“ “incompetent patient,” and

“guardian” are defined. The responsibilities of the

patient, family members, physicians, nurses, and

other medical personnel are clearly delineated.

Even the meaning of resuscitation itself has been

more specifically defined (14).

Many institutional resuscitation policies include

statements about the following:

. resuscitation as a standing order, to be initiated unless there is a physician’s order to the

contrary;

●

●

●

●

●

●

●

●

●

who may write DNR orders;

the medical conditions that justify a DNR

order;

procedures for determining the patient’s decisionmaking capacity;

procedures for ascertaining the patient’s

wishes;

the role of the family, close associates, and

other persons in the decisionmaking process;

the scope of the DNR order (e.g., a DNR order does not limit other forms of medical intervention);

documentation of the DNR order in the patient’s record;

discussion of the DNR order with involved

staff; and

procedures for periodic review (e.g., subject

to daily review, maybe revoked at any time)

(14,53).

Beyond the common elements listed above, existing resuscitation policies show considerable diversity, reflecting the characteristics of different institutions.

According to the JCAH survey, the most common problems encountered by institutions in implementing resuscitation policies were conflicts

between physicians and nurses about DNR orders

and the need for continuing education of staff

about the policy (53). A third problem reported

by the institutions was the difficulty of defining

the relationship between DNR orders and other

treatments. This problem has been identified by

many observers (25,33)60) (see also previous section on “DNR Oders and Other Life-Sustaining

Treatments”). Although some facilities have developed policies to define what treatments should

be provided for patients with DNR orders, most

have not. The JCAH survey found that among institutions with formal resuscitation policies, only

17 percent of hospitals, 7 percent of nursing

homes, and 12 percent of hospices had policies

addressing the withholding or withdrawing of

other treatments (53).

In general, national medical, hospital, nursing

home, and hospice associations have not developed specific guidelines for institutional resusci-
196 . Life-Sustaining Technologies and the Elderly

tation policies. Some have issued general state- Cardiopulmonary resuscitation is not indicated in

ments on the use of CPR, however. The following certain situations, such as in cases of terminal,

statement by the 1973 National Conference on irreversible illness where death is not unexpected

Standards for Cardiopulmonary Resuscitation and or where prolonged cardiac arrest dictates the

Emergency Cardiac Care is an example. futility of resuscitation efforts. Resuscitation in

these circumstances may represent a positive vioThe purpose of cardiopulmonary resuscitation lation of an individual’s right to die with dignity

is the prevention of sudden, unexpected death. (62).

Figure 5-5.—Resuscitation Policy Adopted by One Hospital

SOURCE: Beth Israel Hospital, Boston, MA, Jan. 1, 1984.
Ch. 5—/?esuscitation ● 797

In addition, many national associations support

their member institutions by providing information or facilitating communication among institutions about resuscitation policies.

The VA has developed standards to guide VA

facilities in formulating resuscitation policies tailored to the population they serve. The standards

acknowledge that:

. . . there will be those cases where, in the exercise of sound medical judgment, a licensed physician who knows the patient may appropriately

give an instruction not to institute resuscitation

at the bedside of a patient who has just experienced an arrest” (83).

The most recent VA statement recognizes the variation among States in statutory and case law relevant to decisions about life-sustaining treatment

and requires VA facilities to develop resuscitation

policies that are consistent with both existing State

law and applicable VA standards (84).

In 1983, the President’s

Study of Ethical Problems

Commission for the

in Medicine and BioFINDINGS AND

CPR involves various procedures that can be

classified as either basic or advanced cardiac life

support. The basic procedures, external cardiac

massage and mouth-to-mouth ventilation, can be

administered anywhere, by any person trained

in the techniques. The more advanced procedures

must be performed by trained health professionals,

usually in a hospital where the equipment is readily available.

Since its development in 1960, the tremendous

life-saving potential of this technology has become

widely recognized, for at some point in the dying

process of every person, the heart stops beating

and resuscitation can be applied. Indeed, resuscitation is used for thousands of people each year,

the majority of whom are elderly.

Specific data for utilization or cost of resuscitation are not available. Rough estimates indicate

that 204,000 to 413,000 elderly persons may receive CPR in hospitals annually, and an additional

but unknown number receive CPR in the commedical and Behavioral Research recommended

that “in order to be accredited, hospitals should

be required to have a general policy regarding

resuscitation” (69). In response to this recommendation and widespread agreement about the need

for such policies, JCAH has developed a new standard for accreditation of hospitals and nursing

homes that will require each institution to have

a policy for decisions about resuscitation. The new

JCAH standard will be implemented in 1988 (67).

The proposed JCAH standard does not require

hospitals and nursing homes to address the relationship between DNR orders and other life-sustaining treatments that might be provided for the

patient. Such a requirement could be a logical next

step. In the meantime, national hospital and nursing home associations might encourage their member facilities to adopt institutional policies that require explicit consideration and documentation

of what other treatments are to be provided or

withheld once a DNR order has been written.

IMPLICATIONS

munity. Research is needed to develop accurate

utilization and cost figures.

In contrast, the outcomes of resuscitation have

been extensively studied. On average, one-third

to one-half of resuscitation attempts in hospitals

are initially successful. Among those patients who

are successfully resuscitated in the hospital, onethird to one-half (about 10 to 25 percent of all those

who receive CPR) initially recover enough to be

discharged from the hospital.

Various complications and injuries may accompany resuscitation. The most common complications are injuries such as rib fractures, collapsed

lungs, and ruptured stomachs. Some survivors suffer permanent brain damage or need mechanical

ventilation, dialysis, and/or invasive hemodynamic

monitoring.

Factors that influence resuscitation outcomes

include the patient’s underlying physical condition, the nature of the cardiac arrest, the elapsed

time between cardiac arrest and initiation of resus-
198 . Life-Sustaining Technologies and the Elderly

citative efforts, and duration of the resuscitation

attempt. The patient’s age alone is not a good

predictor of resuscitation outcomes.

Several age-related conditions, such as osteoporosis, cataracts, arthritis, and altered metabolism,

however, may increase risk of complications. Available evidence indicates that resuscitation is not

performed differently with elderly patients than

with younger ones. More research is needed to

assess any added risks associated with age.

More is known about how decisions about resuscitation are made than about how decisions about

other life-sustaining technologies are made. Although resuscitation decisions vary from individual to individual, factors that are frequently involved include the clinical indicators of the chance

of success, as well as the patient’s mental status.

The patient’s age is sometimes a factor in decisions about resuscitation, although age alone is

not a good predictor of outcome.

It is now widely accepted that resuscitation is

not appropriate for every patient. When cardiac

arrest occurs unexpectedly and/or there has been

no advance deliberation of the appropriateness

of resuscitation, CPR is almost always attempted

because the alternative for the patient is death.

For patients in hospital and other settings, decisions about whether to initiate CPR are sometimes

considered in advance of a patient’s cardiac arrest. Although the bias towards attempting resuscitation is very strong, there is increasing use in

these institutions of DNR orders-directives to

withhold CPR.

Problems with DNR orders include lack of patient and family involvement in decisions about

their use, lack of documentation of the orders,

and disagreements among physicians, nurses, and

family members about whether a particular patient should have a DNR order. In order to address these problems, some hospitals, nursing

homes, and hospices have developed formal resuscitation policies, but many have not.

JCAH has recently issued new standards that

require hospitals and nursing homes to develop

resuscitation policies in order to be accredited.

Such policies will help resolve some of the problems in existing decisionmaking procedures and

may provide some legal protection for physicians,

nurses, and others who adhere to them. At the

least, such policies will clarify for health care

professionals, patients, and families how decisions

about whether to provide CPR will be made in

each facility. National hospital, nursing home, and

hospice associations and physicians’ and nurses’

associations have a role in providing expert advice and consultation to facilities and individual

professionals involved in the development of institutional resuscitation policies.

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Chapter 6

Mechanical Ventilation
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....205

Description of Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . . . .............207

Respiratory Failure: The Need for Mechanical Ventilation . . . . . . ............207

The Ventilator Apparatus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...........209

Treatment Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......213

Caregivers . ....................... . . . . . . . . . . . . . . . . . . . . . . ..........215

Utilization and Cost of Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . ........216

Utilization of Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . . .............216

Cost of Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . ...................218

Reimbursement for Mechanical Ventilation . .............................220

Outcomes of Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......223

Clinical Outcomes of Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . ........224

Effects on Mental and Physical Functioning . ............................227

psychological Outcomes of Mechanical Ventilation . . . . . . . . . . . . . . . . . . . . . ...229

Effects on the Patient’s Family and Caregivers . . . . . . . . . . . . . . . . . . . . . ......231

Making Decisions About Starting and Stopping Mechanical Ventilation . .......232

clinical Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....233

Ethical Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .235

Legal Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........237

professional and Institutional Guidelines . . . . . . . . . . . . . . . . . . . . . . ..........239

Findings and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...240

Chapter p references. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....241

Boxes

Box Page

6-A. Chronic Obstructive Pulmonary Disease . . . . . . . . . . . . . . . . . . . . . .........208

6-B. Some Recent Legal Cases Involving Mechanical Ventilation . .............237

Figure

Figure No. Page

6-1. Patient’s ABSees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .228

Tables

Table No. Page

6-1. Diagnoses Associated With Risk of Respiratory Failure and Subsequent

Mechanical Ventilation in Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .208

6-2. Estimated Utilization of Long-Term Mechanical Ventilation Nationwide ....216

6-3. Estimated Percentage of Ventilator Patients Who Are Elderly, by Setting ...2l7

6-4. Distribution of Long-Term Ventilator Patients by Age and Setting,

for 37 States . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......................218

6-5. Reported Monthly Charges for Hospitalized Ventilator Patients . ..........219

6-6. Survival Rates for Patients Receiving Mechanical Ventilation in Acute Care

Hospitals, All Ages .. ... ... .... . . . . . . . . . . . . . . . . . . . . . ...... ....225

6-7. Survival Rates for Patients Receiving Mechanical Ventilation in the

St. Michael’s Hospital Respiratory Intensive Care Unit, by Age . ...........225
Chapter 6

Mechanical Ventilation

INTRODUCTION

Mechanical ventilation is one of the major lifesupport systems of the 1980s. For patients suffering severe impairment or even complete failure

of respiratory function, the ventilator (or “respirator,” as the device is better known) is literally

the link between life and death. Its capacity to

take over the vital role of the respiratory muscles,

inducing rhythmic inflation and emptying of the

lungs, is beyond debate. Experience with this

technology provides clear evidence that, for a substantial and diagnostically diverse patient population, mechanical ventilation can effectively assist

or replace normal spontaneous breathing. Its

wide availability and usually safe application have

enabled thousands of patients of all ages to survive life-threatening pulmonary, neuromuscular,

and necrologic disorders, as well as high-risk surgical procedures.

But, like the other life-sustaining technologies

considered in this report, mechanical ventilation

is a mixed blessing. Its technical virtuosity and

potential good are not always good enough. The

ventilator has attained notoriety as the focus of

ethical and legal dilemmas. For severely ill patients

and their families, as well as many health professionals, decisions about the use of this technology are the source of considerable anguish. while

offering hope of prolonged life, mechanical ventilation has drastic implications for the quality of

that life. Furthermore, the costs associated with

this technology are enormous, and the Federal

Government bears a large proportion of these

costs. Thus, in assessing this technology, the appropriate emphasis is not: does it work? but

rather, under what circumstances is its use appropriate?

In the care of many acutely ill patients, mechanical ventilation lasting only hours or a few days

is sufficient. For patients with reversible disease

or injury to the chest wall and for some surgical

patients, artificial ventilation can buy the time

needed for definitive therapeutic interventions to

take effect or for spontaneous improvement to

occur. In a short time, the ventilator can be removed and normal breathing resumes. Unfortunately, however, mechanical ventilation has never

been shown to improve the underlying pathology of any disease (9). Thus, acutely ill patients

whose underlying disease is chronic or irreversible can become, sometimes unexpectedly, chronically ventilator dependent. Their continuing need

for mechanical ventilation may be total, i.e., 24-

hours a day, or it may be limited, i.e., only during sleep or intermittently through the day.

For patients with chronic, irreversible, or degenerative diseases or paralysis affecting respiration, mechanical ventilation represents a last resort, a sign that preventive measures or cures

were ineffective or unavailable. At the same time,

for such patients, this technology offers a realistic possibility for prolonged life. Thousands of patients, or others acting on their behalf, have chosen ventilator dependence as the best alternative

and, with it, many have managed to develop and

maintain successful family relationships and even

careers.

Ventilator patients who are successfully “weaned’”

as well as chronically ventilator-dependent persons who remain functionally able represent important technological successes. Unfortunately,

however, not all individuals fall into these categories. Mortality among patients receiving mechanical ventilation is very high. Most reports have

found survival of the initial hospital episode to

be under 55 percent (27)75,87,98,128)129); and

mortality is usually highest for elderly patients

(75,83,85,87,88,95,129).

Furthermore, among those patients who become permanently ventilator dependent are some

whose physical and/or mental functioning is severely and irreversibly impaired. Although patients who cannot be weaned are thought to rep1Weaning is the step-by-step removal, over a period of days,

weeks, or months, of ventilator equipment that the patient is dependent on, with restoration of adequate spontaneous respiration,

205
206 ● Life-Sustaining Technologies and the Elderly
Ch. 6—Mechanical Ventilation ● 207

cus has shifted from the operating room, to longterm care, to intensive care, and, lately, back to

long-term care, including home care.

Perhaps the most significant development has

been the considerable expansion of the potential

patient population (106). Prolonged mechanical

ventilation first became a reality in the midst of

the worldwide epidemics of poliomyelitis during

the first half of this century. In Europe and the

United States, thousands of polio victims who

suffered respiratory paralysis were sustained for

months or years with “iron lungs” and other early

types of ventilators. Individuals who were part

of this cohort of patients are distinguished from

their successors by their relative good health and

their youth at the time mechanical ventilation was

instituted. These individuals and events stimulated

by their plight, including the virtual eradication

of polio in developed countries, continue to stand

out as historical examples of medical technology

at its best.

Now, however, recipients of mechanical ventilation include patients in their eighties or nineties with multiple life-threatening conditions;

patients whose presumed temporary loss of spontaneous breathing proves to be permanent; patients for whom it is known in advance that spontaneous breathing will never be restored; and

patients who are demented, unconscious, or even

brain dead. These patients are the source of new

ethical and legal issues, intensified economic

strains, and heightened public interest.

This chapter examines a variety of issues pertaining to decisions about the use of mechanical

ventilation. Because the issues are exaggerated

with longer use, the chapter generally focuses on

acute ventilation that becomes prolonged or

chronic. Definition of this concept is, however,

problematic. Some authors regard ventilation lasting 48 hours as “prolonged” (e.g., 27,98), while

others define prolonged ventilation as that which

continues for 1, 3, or even 6 months. According

to some authorities, patients who require mechanical ventilation for as long as 2 weeks are essentially the same patients who require it for a month

or longer (21). In general, the discussion that follows refers to individuals who have become ventilator dependent and who are unlikely to regain

spontaneous respiratory function.

DESCRIPTION OF MECHANICAL VENTILATION

Respiratory Failure: The Need for

Mechanical Ventilation

Respiratory failure is a life-threatening condition in which the respiratory apparatus is unable

to provide adequate oxygenation (delivery of oxygen to the blood) and/or ventilation [removal of

carbon dioxide from the blood). It is an unstable

condition, and if untreated, further deterioration

and eventual respiratory arrest (i.e., the complete

cessation of effective breathing) are more likely

than improvement (111). Respiratory failure and

arrest can occur in individuals of any age. As a

group, however, elderly people are at greater risk

because of normal age-related declines in pulmonary function, as well as the higher prevalence

of diseases associated with respiratory problems

and higher prevalence of comorbidities in general.

Clinical evidence shows that, “with a normal

aging process, the bronchopulmonary system

should be adequate for about 90 years of continuous functioning” (78). After age 25, however,

healthy individuals experience a gradual decline

in pulmonary function (72). Normal changes in

pulmonary function are due to aging per se; to

the cumulative effect of exposure to environmental pollutants; to residual effects of disease

and allergies; and to reduced levels of physical

activity. Changes may occur in lung volume and

in all aspects of respiratory function. Probably

the single most significant risk factor affecting

healthy individuals is cigarette smoking (121).

Severely impaired respiratory function and

eventual respiratory failure may result from airway obstruction, inadequacy of the ventilator

muscles, lung disease, or chest injury, as well as

from a variety of cardiac, neurological, and neuromuscular disorders. The most common causes—

asthma and COPD—are primarily diseases of older

people (see box 6-A). In addition, other conditions

associated with the risk of respiratory failure, including pneumonia, sepsis, and pulmonary edema,
208 • Life-Sustaining Technologies and the Elderly

are more likely to result in respiratory failure

when the victim is elderly (111). Diagnoses associated with respiratory failure and subsequent mechanical ventilation in adults are listed in table

6-1.

Changes in pulmonary function associated with

normal aging and changes due to disease are interrelated and difficult to distinguish. The confounding of normal and abnormal processes can

lead to generalizations about elderly patients and

to assumptions about reserve capacity that are

incorrect in individual cases.

Table 6-1.— Diagnoses Associated With Risk of

Respiratory Failure and Subsequent

Mechanical Ventilation in Adults’

Pulmonary diseases

Chronic obstructive pulmonary disease (COPD)

Asthma

Bronchitis

Emphysema

Chronic restrictive lung disease

Adult respiratory distress syndrome

Interstitial lung disease

Acute bronchial asthma

Pneumonia

Pulmonary edema

Pulmonary embolism

Tuberculosis

Lung cancer

Neuromuscular disorders

Amyotrophic lateral sclerosis (ALS)

Diaphragmatic paralysis

Guillain-Barre syndrome

Myasthenia gravis

Kyphoscoiiosis and senile kyphosis

Multiple sclerosis

Muscular dystrophy

Poliomyelitis

Tetanus

Neurological disorders

Cerebrovascular accident (stroke)

Brain trauma

Status epileptics

Drug overdose, poisoning

Coma resulting from metabolic disorders

Cardiac disorders

Cardiogenic shock

Cardiac arrest

Congestive heart failure

Severe dysrhythmias

Major surgery (with general anesthesia)

injury, trauma

Chest injuries, including trauma during cardiopulmonary

resuscitation (CPR)

Spinal cord injuries

Hypothermia

Burns, smoke inhalation

Other

Metastatic cancer

Aspiration

aD1$ea9es associated with short- as well as long-term Ventilation are Included

&cause of the potential for the former to evolve into the latter.

SOURCE: Office of Technology Assessment, 1987.
Ch. 6—Mechanical Ventilation . 209

The Ventilator Apparatus

The mechanical ventilators in use today range

from the relatively simple and relatively inexpensive variations of machines developed in the 1920s

to the highly complex and expensive state-of-theart ventilators found in intensive care units (ICUs).

The pressure gradient necessary to deliver air or

a mixture of air and other gases (especially oxygen) to a patient maybe produced either by negative pressure (i.e., below-atmospheric pressure)

applied to the chest wall or by positive pressure

(i.e., above-atmospheric pressure) applied to the

airway. Frequently, ventilators are classified along

this dimension.

Negative Pressure Ventilators

The first ventilators to receive wide use for patients requiring long-term ventilator support

Photo credit” Courtesy of Yearbook Medical Publishers

Reprinted by permission, 1981

This patient breathes with the aid of a cuirass, the most

widely used negative pressure ventilator today.

were negative pressure devices introduced during the epidemics of paralytic poliomyelitis from

1910 to the mid-1950s. Exemplified by the iron

lung, these devices were, for the most part, chambers or cabinets in which the patient was placed,

from neck to toes, and enabled to breathe by the

force of alternating negative and positive pressure. A major problem with these ‘(tank” or “body

respirators” is that they render the patient inaccessible for medical and nursing care. Another

major problem, recognized only after the technology improved, is that the ventilation provided

by negative pressure devices is inadequate for

many patients. A 1978 report estimated that only

350 tank respirators remained in use in the United

States (126).

Modern negative pressure ventilators reduce

the problem of access to the patient posed by the

iron lung and are also more portable. The most

widely used negative pressure ventilator today

is the cuirass (120). This consists of a metal or plastic shell, resembling a shield, that covers the chest

and/or abdomen, and that is connected by a flexible hose to a vacuum pump. Negative pressure

is intermittently cycled in the space between the

shell and the patient’s body, causing passive excursion of the diaphragm and expansion of the

lower rib cage.

Other negative pressure devices in use today

include the Pulmowrap (“poncho”), the pneumobelt, and the rocking bed, The Pulmowrap is

a cloth or plastic wrap that operates by the same

principal as the cuirass, cycling negative pressure

in the space created around the body. The pneumobelt is another wearable device that ventilates

mainly the lower lobes of the lungs by its alternate inflation and deflation. The motion of the

rocking bed causes passive excursion of the diaphragm and regulates both the volume of the

breath and the breathing rate.

Negative pressure ventilators are used primarily in long-term care institutions and home care

for medically stable patients who require ventilator assistance less than 24 hours per day. Most

of these patients have chronic respiratory insufficiency due to neuromuscular disorders, polio, or

spinal cord injuries. Negative pressure devices are

rarely used in acute care hospitals, but the com-
210 • Life-Sustaining Technologies and the Elderly

placations associated with positive pressure ventilation and tracheotomy tubes (see “Outcomes

of Mechanical Ventilation,” below) have created

renewed interest in negative pressure equipment

for some hospitalized patients (44). Also, preliminary reports suggest that nocturnal use of negative pressure ventilators to rest the respiratory

muscles is beneficial for some patients (68).

Positive Pressure Ventilators

Positive pressure ventilation has been regarded

since the mid-1950s as the superior technique for

acutely ill patients and for most stabilized ventilator-dependent patients. Compared with negative pressure devices, positive pressure ventilators offer several advantages. Most important, the

volume and delivery rate of the inspiratory gases

can be carefully controlled, and receipt of these

gases by the patient is rather certain. Thus, the

likelihood is greater with positive than with negative pressure devices that a patient will be optimally ventilated. In addition, the patient receiving positive pressure ventilation is completely

accessible to caregivers.

The functioning of positive pressure ventilators

involves the application of above-atmospheric

pressure to the patient’s airway. This produces

an inspiratory driving pressure. The lung and

chest wall provide elastic recoil, creating a driving pressure back up the airway. This same basic

process can be accomplished by regulation of pressure, airflow, rate, or volume, and positive pressure ventilators are usually classified according

to these parameters, any one of which can be preset to trigger the end of the inspiratory phase.

The patient’s specific condition and expected duration of need for mechanical ventilation may indicate one type of ventilator over another (71),

but volume ventilators are most often chosen for

long-term ventilator support or for complex care

(68).

“Hospital ventilators” all resemble the model

shown in the photograph on p. 212. The bulk of

the apparatus is physically removed from the patient, usually positioned at the bedside. The dials

used to set the prescribed volume, rate, breathing pattern, etc., as well as the display of monitored functions are visible and accessible to the

patient or the patient’s attendants. State-f-the art

hospital ventilators are complex, microprocessorbased units that permit continuous measurement

of about a dozen patient parameters; the results

may be displayed digitally, with lights, on CRT

monitors (74), or may even be transmitted by computer modem and telephone lines to a remote central station (21). The monitoring system on most

ventilators is tied to an alarm system. Unacceptable levels in monitored functions trigger a visible or audible alarm (74).

In the last decade, new kinds of positive pressure ventilators have been developed specifically

for use outside the hospital, where portability, ease

of use, and low cost are essential. These “home

ventilators” are smaller and lighter than hospital

ventilators, but have many of the same capabilities, including a range of volume, pressure, and

breathing rates; monitoring of patient pressure

and power supply; emergency alarms and standby

power. Under the direction of a physician, nurse,

or respiratory therapist, home ventilators can be

operated by patients themselves, by family members or other nonprofessional caregivers. Some

models of positive pressure home ventilators can

operate on a 12-volt automobile-type battery, enabling patients to travel by wheelchair, car, or

plane. Some patients can walk, carrying or pushing the ventilator on a small wagon. Stationary

(or console) ventilators are also used in home care

(21).2

Positive pressure ventilation requires a physical link between the ventilator and the patient.

This physical link is accomplished by the insertion of flexible, sterile tubing leading from the ventilator into the patient’s airway, through the nose,

mouth, or directly into the trachea. To ensure that

the patient receives the full prescribed breath and

the proper proportion of oxygen, an inflatable balloon cuff at the patient’s end of the tube maybe

used to reduce the possibility of leakage.

The method of incubation depends initially on

the urgency of the situation, expected duration

of ventilator support, whether or not the patient

is alert, medical details, and available personnel.

‘Some physicians limit the use of portable ventilators to 4- to 5-

hour periods or to daytime use, recommending the more reliable

console machines for nighttime and when caregivers may be less

available or less alert to problems (44).
Ch. 6—Mechanical Ventilation . 211

Photo credit: Corp. with permission.

This patient indicates her tracheotomy, the surgically created opening through which tubing for mechanical ventilation can be inserted.

Each method has distinct characteristics in terms

of patient comfort, needed care, and risk of complications.

Unless the need for mechanical ventilation is

certain to be prolonged, endotracheal incubation

is the preferred technique. In this method, the

tube is inserted through the natural opening of

the trachea, either through the patient’s mouth

(i.e., orotracheal incubation) or through the nose

(i.e., nasotracheal incubation). Because the duration of ventilation is usually difficult to predict,

most patients undergo endotracheal incubation

at the start of their treatment. There is some disagreement about how long endotracheal incubation can be maintained, but most sources put the

limit at 1 to 2 weeks (112).

Patients requiring ventilator support of longer

duration must undergo a surgical procedure

known as a tracheotomy, to produce an opening

into the trachea, through the neck. This opening,

the tracheotomy, allows the insertion of a

tracheotomy tube. This method of incubation

maximizes patient comfort and facilitates removal

of secretions from the airway, via suctioning (7 I).

However, tracheotomy is associated with numerous serious complications (see ‘(Outcomes of Mechanical Ventilation, ” below).

All methods of incubation interrupt important

natural functions of the upper airway, including

the natural processes of humidification, filtration,

and warming of inspired gases, and each interferes with normal cough and gag reflexes. The

ventilator support system must compensate for

these lost functions. A humidifier is used to prevent dryness of the respiratory mucous membrane. Filters prevent foreign material from reaching the lungs, and heat controls prevent loss of

body heat. Because most ventilator patients are

unable to cough effectively, suctioning is an important component of care (73).

The ventilation equipment and the patient are

literally tied into a common system that must be

adjusted to a perfect balance. The patient respiratory drive, whether normal or abnormal, and

the rhythm of the ventilator must be synchronized, so that “competition” or “interference” does

not detract from the optimal functioning of either. The ventilator’s operating mode denotes the

degree of control the machine has over the patient’s breathing. In the mode called “control ventilation,” for example, the ventilator provides total support, cycling independently of the patient

breathing effort or response. This mode is used

for unconscious patients and for those whose

spontaneous ventilation is significantly depressed.

In the acute care setting, interference from the

patient sometimes is managed by the administration of heavy sedatives or paralyzing agents to

permit optimal functioning of the ventilator (20).

Safety and Reliability of

Ventilation Equipment

Like any mechanical device, ventilators can malunction or fail. Problems maybe due to the ventilator itself; to other components of the system,

especially the tubing, oxygen supply, or power
212 . Life-Sustaining Technologies and the Elderly

source; or to human error. Appropriately scheduled and correctly performed maintenance are

essential.

Mechanical ventilators are subject to regulation

by the Food and Drug Administration (FDA). FDA’s

Medical Device Reporting regulation, implemented

in December 1984, requires manufacturers of

medical devices to report any deaths or serious

injuries associated with their products. Between

December 1984 and March 1987, FDA received

approximately 2,800 reports of problems with

positive pressure mechanical ventilators (hospital and home models).3 During the same period,

FDA also received approximately 700 reports on

positive pressure ventilators under the voluntary

Medical Device and Laboratory Product Problem

Reporting Program (100). Although fault has not

been determined in all reported incidents, concern about the safety and reliability of these ventilators is understandable.

FDA has designated positive pressure ventilators for hospital and home use as Class II medical

devices (i.e., devices for which general controls

are deemed inadequate to ensure safety and efficacy, and for which sufficient information exists or could be developed to establish performance standards). They were among the very few

Class II medical devices for which, in 1986, FDA

initiated the process of developing a regulatory

performance standard (17). However, FDA’s invitation for offers to submit or develop a standard

(51 FR 11516) brought no acceptable responses,

and the agency has since withdrawn plans to develop a regulatory standard. Instead, FDA will attempt to solve the reported problems with ventilator equipment by other, less costly means (17).

Hospital ventilators used in critical care and

anesthesia are subject to voluntary standards such

as the performance standard developed in 1976

by the American National Standards Institute (5).

That standard is currently being revised by the

American Society of Testing and Materials. A

standard developed by the International Stand3

In January 1986, FDA initiated a civil suit against one major manufacturer, whose home ventilators had been linked to 7 deaths, 9

serious injuries, and as many as 663 malfunctions (28). Equipment

problems, however, are not unique to any one manufacturer or model

(44).

ards Organization also applies to hospital ventilators (8).

The American Society of Testing and Materials, in response to numerous reported problems

with home positive pressure ventilators, is also

developing a voluntary performance standard for

these devices. (FDA is participating in the process.) In addition, a subcommittee of the American

Society of Testing and Materials has been formed

to develop standards of practice for home ventilation (8).

Because problems with ventilation equipment

may be life-threatening, whether in the hospital

or elsewhere, a backup power supply (battery or

generator) and backup ventilator are usually

needed. Emergency equipment for resuscitation

is also needed in the event that machine or power

failure leads to respiratory arrest, Even in the

home, a simple device for resuscitation, usually

an ambu-bag (see ch. 5), should be available for

Photo credit: Puritan-Bennett Corp.

The Bennett 7200a is a microprocessor-controlled

volume ventilator typical of the positive pressure

ventilators used in hospitals today.
Ch. 6—Mechanical Ventilation . 213

all ventilator-dependent patients. In some communities, power companies, police and fire departments maintain registries of individuals who

have life-support equipment in their home, providing an additional measure of safety.

Treatment Settings

Mechanical ventilation is usually initiated in an

emergency room or ICU. Many ventilator patients

who have been stabilized, however, do not need

to remain in an ICU and may not need to remain

in the acute care hospital at all. Patients requiring long-term ventilator support have been successfully treated in regular medical units of acute

care hospitals, special step-down and rehabilitation units, chronic and rehabilitation hospitals,

nursing homes, group homes, and their own

homes. The various settings in which mechanical

ventilation is provided imply widely different

levels of care, cost, and patient responsibility, and

they have considerable impact on the patient’s

quality of life.

Acute Care Hospitals

For patients who are medically unstable or at

high risk and for whom aggressive life-sustaining

treatment is desirable, the appropriate setting for

the provision of mechanical ventilation is the ICU.

The sophisticated equipment and skills available

in the ICU, and the high staff-to-patient ratio, are

needed to provide round-the-clock monitoring and

care. In addition to ventilation, nutritional support, and any other treatments that may be necessary can be rapidly initiated and simultaneously

managed. However, the ICU is by far the most restrictive and, almost always, the most expensive

setting in which mechanical ventilation is

provided.

Some ventilator patients remain in acute care

hospitals long after they are medically stabilized

(2). This situation may be due to the shortage of

options in the community, caregivers’ lack of

awareness of the options, or reimbursement considerations (see below). The inappropriate use of

ICU and other acute care beds increases costs,

reduces the patient’s quality of life, and may create a shortage of ICU beds. Moreover, some observers suggest that physicians and other health

professionals who trained and practice in acute

care hospitals lack the experience and special expertise required to provide good quality care to

patients who are chronically ventilator dependent

(21).

The feasibility of caring for a ventilatordependent patient outside an acute care hospital

depends on factors such as the patient’s physiological stability, comorbidity, and mental status;

complexity of the prescribed ventilator and regimen; extent of the patient’s need for medical attention and nursing care; the patient’s prognosis;

and minimum acceptable quality of life. Other major considerations are institutional policies; the

existence of options in the community; admission

criteria and available space in other facilities; distance of alternate facilities from family; the patient’s personal financial resources; available reimbursement; and the ability of family members to

provide social support.

Nursing Homes and Other

Institutional Settings

Historically, very few nursing homes have accepted ventilator-dependent patients or kept patients who became dependent on this technology.

The majority of physicians and institutions assumed, as many still do, that safe care of ventilatordependent persons required staff and technological resources that are neither available nor feasible to provide in a nursing home. In the last few

years, interest in containing hospital costs and in

reducing length of hospital stay has given impetus to creation of special ventilator units within

some skilled nursing facilities (14). Despite this

change, however, the number of nursing homes

that now care for ventilator-dependent patients

is still small (115).

Nursing homes that do accept ventilator-dependent patients may provide long-term placement,

transitional placement to permit training and preparation of patients who will eventually return

home, and/or short-term respite for family caregivers. one of the first such programs in a nursing home opened in January 1983 at Care Centers

of Michigan. This program offers comprehensive,

long-term care for patients of all ages. Patients

are said to enjoy improved quality of life, with
214 ● Life-Sustaining Technologies and the Elderly

a broader range of rehabilitative services and environmental options, at approximately half the cost

of hospital care (25).

Other options for some stabilized patients who

remain ventilator dependent are chronic care and

rehabilitation hospitals. Nationwide, there are a

few hospitals whose major mission is pulmonary

rehabilitation. In these special facilities, many patients, including some elderly patients who could

not be weaned in acute care hospitals, are successfully weaned from mechanical ventilation, or

their dependence is reduced (21).

Demand for skilled nursing and other kinds of

long-term care facilities for ventilator-dependent

patients appears to exceed availability, In a national

survey of hospital discharge planners, the availability of beds and need for complex services

including ventilator care was identified as the second most serious barrier to nursing home placement (119). The Goldwater Memorial Hospital in

New York City, with a respiratory rehabilitation

program for 46 ventilator patients, has a normal

waiting list of 50 to 75 ventilator-dependent patients ready to be discharged from acute care hospitals in the New York metropolitan area (21). The

oak Forest Hospital in LaGrange, Illinois, has a

25-bed ventilator ward and a waiting list of 75 (40).

The Patient’s Home

Mechanical ventilation at home is a realistic option only for a minority of patients, whatever their

age. To date, the number of elderly patients who

have been discharged to their own homes on a

ventilator is very small. However, home care is

an option that deserves consideration because the

potential benefits for patients and the potential

cost-savings are great. Care within one’s own home

can provide the highest quality of life and, for some

patients whose prognosis is bleak, improved quality of death. In their own homes, patients retain

the maximum degree of control over their health

care and other aspects of their life. Patients of

all ages have made successful adaptations to ventilator dependence at home, and some observers

believe the feasibility of home care is underestimated (70,103).

Clearly, however, home care of a ventilator patient is not a decision to be taken lightly. The patient’s readiness to go home and the family’s readiness to receive the patient must be carefully

assessed; extensive planning and education of both

patient and family are necessary. Resources for

care outside the hospital must be identified and

evaluated. Also prior to discharge from the hospital, reimbursement for home care must be assured. problems related to financial and social support for families providing home care are severe,

whatever the age of the patient. The feasibility

of home care for ventilator-dependent patients

who are elderly is reduced by the decreased likelihood that they have a spouse or other family members capable of meeting the considerable challenges home ventilator care presents.

Barriers to home ventilator care for patients of

all ages include the fact that the equipment and

techniques for management of ventilation in the

home (and alternate community sites) are relatively new; many physicians are unaware of the

home care option; and most medical centers lack

the experienced personnel and resources to coordinate the transition from hospital to home. Still,

some observers predict that the number of home

ventilator patients will increase rapidly (118), and

this prediction has led to expressions of concern

that the acquisition of necessary skills and the

establishment of support networks will not keep

pace with the expanded number of patients (51,

66).

Another alternative to institutionalization, with

benefits that parallel those of home care, is congregate housing. The goal is to provide residents

the relative independence of a private apartment

rather than the controlled environment of a bed

in a hospital or nursing home. Congregate housing can be designed to provide both personal and

medical support services to enhance independence and reduce costs (21).

Linkages Among Treatment Settings

Some ventilator patients are moved back and

forth among the various treatment settings. Such

moves are often necessitated by changes in the

patient’s medical condition. Thus, for example, a

COPD patient may be weaned from the ventilator, or partially weaned, over and over again, necessitating transfers in and out of an ICU. Or, a
Ch. 6—Mechanical Ventilation “ 215

patient who is at home maybe transferred back

to the hospital in the event of an acute episode.

In other cases, the reasons for moving a patient

are strictly non-medical. For example, a patient

cared for at home may be moved to a nursing

home or hospital because the physical, emotional,

and/or financial strain of providing care has become too great for the family.

Continuity of care requires good linkages among

the various treatment settings and service

providers. To increase the options for ventilator

patients they are ready to discharge, many hospitals are developing their own nursing homes

or contracting with existing nursing homes for

a certain number of beds (12). Hospitals that discharge ventilator-dependent patients to nursing

homes or to their own homes must be prepared

to provide ongoing and emergency service for

these patients. Other necessary community resources for nonhospital care are reliable companies to lease and maintain equipment, registries

of nurses, attendants and/or health aides, and financial assistance. Some observers believe that

the best way to ensure good care and efficient

use of resources is to provide quality-assurance

and case-management through a system of regional centers of expertise like those that existed

during the polio years4 (21).

Caregivers

Ventilator patients in ICUs are in the care of

a large and diverse group of highly skilled professionals that typically includes the attending and

various consulting physicians, registered nurses,

respiratory therapists and technicians, and dietitians. It may also include physical therapists, social workers, and others. The attending physician

(who is likely to be a specialist in pulmonary medicine, anesthesiology, or critical care) has primary

responsibility for determining whether or not mechanical ventilation is needed and prescribing the

specific regimen. Registered nurses, often special4Regional centers of expertise were established in this country

to provide comprehensive services to polio victims who required

ventilator support. As the incidence of polio fell, most of these

centers closed, In France and England, comprehensi~e, go~rernment -

funded programs currently provide a full range of serl’ices, including acute care hospitals, intermediate care facilities and organizations to pro~’ide ser~’ice, equipment, and personnel in the home,

These programs provide needed care, care-monitoring and qualit~r -

assurance, as well as cost satrings \’ia mass purchasing (2 1,42,43).

ists in respiratory care or critical care nursing,

have the most contact with the patient, If a decision about withholding or withdrawing treatment

is considered, various members of the health care

team may participate, along with the patient

and/or family members.

For acutely ill, hospitalized ventilator patients,

the staff-to-patient ratio is necessarily high. One

hospital in Pittsburgh reports that its 16-bed surgical ICU has 7 physicians and 67 registered nurses

(48). Staffing patterns vary in different institutions,

however, and a more typical case is a 16-patient

acute respiratory ward staffed by 2 physicians,

10 registered nurses, 2 practical nurses, 12 nurse

aides, and a clerk (21). In the general medical unit

of an acute care hospital, the ratio of staff (especially nurses) to patients is sharply reduced and

the roles of various personnel are changed. Respiratory and physical therapists often have expanded roles. When weaning from the ventilator

and/or discharge from the hospital can be considered, social workers, psychologists, psychiatrists, and rehabilitation experts become increasingly important.

In nursing homes and other institutions that care

for stabilized ventilator patients, staffing needs

are much simpler, though the needs of individual

patients vary greatly. Care may be coordinated

by a staff physician and the medical director, who

may not be continuously available. This is the pattern at Care Centers of Michigan, where specially

trained professional nurses, nurses aides, respiratory therapists, and rehabilitation assistants

provide ongoing care. The ventilation unit at the

nursing home has 1 professional nurse and 1 respiratory therapist for every 6 patients (24).

In the patient’s home, there is substantial reliance on the ability of family members and the patient to provide basic care and to perform routine procedures. Respiratory therapists, nurses,

aides, and attendants—under the auspices of hospitals, home care equipment companies, nursing

homes, and home health care agencies-can be

enlisted to assist the primary caregiver. Home care

of ventilator patients raises important questions

about the training and supervision of family members and other lay caregivers. Within some centers

of expertise, model programs have been developed for patient and family education (39).
216 • Life-Sustaining Technologies and the Elderly

UTILIZATION AND COST OF MECHANICAL VENTILATION

Utilization of Mechanical Ventilation

Available data on the utilization of mechanical

ventilation are highly inadequate. Health statistics maintained and published by Federal agencies, notably the Health Care Financing Administration (HCFA) and the National Center for Health

Statistics (NCHS), include no overall estimates for

this technology. Moreover, the coding systems on

which Federal data are based would make technology-specific analyses difficult to do and difficult

to interprets

Other potential sources of information regarding the utilization of mechanical ventilation are

the manufacturers and the providers of equipment and/or services for home ventilation. A survey of over 50 national organizations concerned

with health care, aging, home care, health care

financing, or respiratory diseases found that

equipment vendors and home health care providers were the only organizations that maintained

any information about the utilization or cost of

mechanical ventilation (21). Unfortunately, data

from private companies are generally regarded

as proprietary. In addition, the markets they describe are scattered and overlapping.

Table 6-2 presents estimates of long-term ventilator utilization nationwide, from all available

sources. Data from a survey conducted for OTA

5There is currently no single DRG for mechanical ventilation but,

instead, approximately 30 different DRGs that are sometimes, but

not always, associated with this technolo@. (However, creation of

two new DRGs for cases involving mechanical ventilation is proposed in HCFA’S 1988 prospective payment classification changes

(113).) Thus, one cannot use HCFA’S data for Medicare Part A (hospital insurance) to deduce either the number of patients who receive

mechanical ventilation or the associated costs. Data on procedures

pertinent to mechanical ventilation, e.g., tracheotomy, endotracheal

incubation, and continuous positive pressure ventilation, are coded

in claims for Medicare Part B (Supplementary Medical Insurance),

and these can be extracted from HCFA records. However, such data

would yield very misleading estimates of the numbers of ventilator

patients because the specificity of procedure codes and HCFA’S requirement to code only the principal procedure (with up to two

additional surgical procedures) result in a mismatch between the

number of patients who have a relevant procedure and those who

receive mechanical ventilation, To use the procedure codes for estimating utilization and cost would omit patients who do not have

Part B insurance and double+ount many who do. Similarly, procedure codes used by NCHS in its regular surveys of hospital discharges

would produce a combination of double+ ounting and undercounting that could not be sorted out.

Table 6.2.—Estimated Utilization of Long-Term

Mechanical Ventilation Nationwide

Total

number of Hospital Home care Other

patients patients patients patients

AARC . . . . . Min. 3,771a

2,379a

1,279a b1 13a

incl. 1,236 (63%) (34%) (3%)

over age 65

Mass. Thoracic

Soc. & Am.

Lung Assoc.

of Mass . 6,575C4,077 920 1,578

incl. 2,200 (62%) (14%) (24%)

over age 70

Travenol . , N.A. d N.A. 5,500 N.A.

CBO N.A. N.A. 4,000 N.A.

Sivak. N.A. N.A. 2,500 to N.A.

4,000

apatients I(tentihed m the 37 States responding to AARC survey, as reported by Care for Life (see

text for identification of 37 States)

bln thl~ $tudy, the estimate of home ventilator patients includes PatlentS in nursIn9 homes, as

well as the patient’s home.

cThi$ is a nationwide projection based on data collected In Massachusetts (We teXf for discussion)

dN A = Not available

SOURCES: AARC: AARC survey reported in Care for Life, “Prolonged Mechamcal Ventilation, ”

prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC,

1985 Mmachusatts Tlrormlc Soclaty and Anaorloan Lung Assoclatbn of Massaohuadts: reported h B. Make, S Oayno, and P. Gwtman, 4’Prwalence of Chronic

Ventilator Dependency, ” Amerkan Revbwof Resp/rafo~Dswses, part 2, April t986

Trwenol: J L Retel, Manager of Marketing, Travenol, Oeerfield, IL, personal communlcatlon, Oec 4, f985. CBO: Congressional Budget Office, U.S. Congress, Cost estlrmte for draft legislation regarding Medicare and Medicare coverage for certain

ventilator-dependent patients, communicated in letter fran R.B. Penner to Senator Ro&wf

Packwood, Committee on Finance, Washington, DC, Aug 13, 1984 Slvak: E O SIvak, “Long-Term Ventilation’ Where Are We Going?” presented at a postgraduate course

at Rancho Los Amigos Hospital, Downey, CA, May 1985

in 1985, under contract to Care for Life (21), are

the closest thing available to national primary data

on the utilization of long-term mechanical ventilation. The researchers attempted to collect data

on all individuals who were receiving mechanical ventilation during a specified week and who

had been ventilator dependent for more than 14

days. Data were obtained for 37 States,’ by their

respective representatives to the American Association for Respiratory Care (AARC).7 A total of

3,771 long-term ventilator patients of all ages were

found in these States. About one-third (1,236) of

these individuals were over the age of 65. Based

6The 37 States providing data were: Alabama, Arizona, Arkansas,

California, Connecticut, Florida, Indiana, Iowa, Kansas, Kentucky,

Massachusetts, Maryland/DC, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, New Hampshire, New Jersey, New York,

North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas,

Vermont, Virginia, Washington, West Virginia, and Wisconsin.

‘Prior to 1985, the name of this organization was American Association for Respiratory Therapy (AART).
Ch. 6—Mechanical Ventilation ● 217

on the combined elderly populations of the responding States, the researchers estimated that

nationally the prevalence of ventilator dependency

in the elderly is approximately 5.3 per 100,000

elderly persons. (However, regional differences

were also noted.)

Illustrative statewide data on ventilator use come

from a 1983 study conducted by the Massachusetts Thoracic Society and the American Lung

Association of Massachusetts. Surveying all institutions serving ventilator-dependent patients in

Massachusetts, the researchers estimated that a

total of 162 persons in the State required positive

pressure ventilation for 3 weeks or longer. This

is equivalent to a statewide prevalence rate of

2.8 ventilator-dependent persons of all ages per

100)000 population. Approximately one-third of

the 162 ventilator-dependent patients were under

age 54, one-third were age 54 to 69, and one-third

were age 70 or older. If the same total rate and

age distribution were assumed to exist nationwide,

there would be approximately 6,575 ventilatordependent persons in the United States (69), including approximately 2,200 persons over age 70.

Estimates from other sources suggest that the

utilization of long-term ventilation may be much

higher. Travenol Laboratories told OTA, based on

experience of its home respiratory program for

the first part of 1985, that there were approximately 5)500 ventilator users, of all ages, nationwide in nonhospital settings alone (i.e., nursing

homes, group homes, and patients’ homes) (93).

(The apparent discrepancy between the AARC survey and Travenol’s data is at least partially explained by the fact that Travenol’s data depict utilization over a longer data collection period.)

Similarly, the Congressional Budget Office (CBO)

estimated that in 1984 there were approximately

4,000 Americans of all ages at home on ventilators (118). CBO’S estimate is not inconsistent with

an independent estimate that there are between

2,500 and 4,000 ventilator-dependent persons at

home nationwide (101).

In interpreting data on the utilization of mechanical ventilation, it is important to recognize the

distinction between incidence data (i.e., data related to the frequency of new cases in a defined

population in a specified time period), and prevalence data (i.e., data related to the number of cases

existing in a defined population at a given time).

Each of the figures reported in table 6-2 describes

the prevalence of ventilator use at the time the

data were collected. Patients who recovered or

died previous to the data collection and those who

required ventilator support subsequent to that

time are not counted. In other words, the number of patients and other persons affected are considerably higher than these data suggest.

One point on which all available sources of data

agree is that utilization rates are higher for elderly

people than for the population as a whole. Since

the prevalence of most conditions leading to respiratory failure increases with age, this is what

one would expect.

Estimates of the proportion of ventilatordependent patients who are elderly and in various treatment settings are shown in table 6-3. Although the figures are incomplete, they suggest

that elderly individuals constitute a very large

share (43 percent) of all patients who are ventilated long-term in hospitals and a smaller proportion of patients in nonhospital settings. For home

care, estimates of the proportion of patients who

are over 65 range from 17 to 33 percent. The high

estimate is based on CBO’s report that one-third

of all home ventilator patients were eligible for

Medicare (118). The intermediate estimate that 27

percent of home ventilator patients are 65 or older

is from Travenol (93). The low estimate is from

the 37-State survey reported by Care for Life (2 1).

Only 17 percent (220) of all non-hospitalized ventilator patients in that survey were age 65 or older

(see table 6-4).

Table 6-3.—Estimated Percentage of Ventilator

Patients Who Are Elderly, by Setting

Nursing

Hospital home Home

AARC . . . . . . . . . . . . 43% N.A. a

17%a

Travenol . . . . . . . . . . N.A.b

N.A. 270/o

CBO. . . . . . . . . . . . . . N.A. N.A. 33%0

aln this study the estimate of home ventilator patients includes patients in nursing homes, as well as the patient’s home.

bN.A. = Not available.

SOURCES: AARC: AARC survey reported in Care for Life, “Prolonged Mechanical Ventilation,” prepared for the Office of Technology Assessment,

U.S. Congress, Washington, DC, 1985. Travenol: J.L. F?ete), ManaRer

of Marketing, Travenol, Deerfield, IL, personal communication, Dec.

4, 1985. CBO: Congressional Budget Office, U.S. Congress, Cost estimate for draft legislation regarding Medicare and Medicare coverage for certain ventilatordependent patients, communicated in letter

from R,B. Penner to Senator Robert Packwood, Committee on

Finance, Washington, DC, Aug. 13, 19S4.
218 . Life-Sustaining Technologies and the Elderly

Table 6-4.—Distribution of Long-Term Ventilator Patients by Age and Setting for 37 Statesa

Hospital Home Other setting All settings

Age Number Percent Number Percent Number Percent combined

Under 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 445 19% 245 19% N.A. b N.A. 690

18 to 64 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 916 38 787 62 N.A. N.A. 1,703

65 and older . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1,016 43 220 17 N.A. N.A. 1,236

Age not determined . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 ———— 0 27 2 113 100%— 142

All ages combined . . . . . . . . . . . . . . . . . . . . . . . . . . 2,379 100% 1,279 100% 113 100%0 3,771

aAlabarlla, Arizona, Arkansas, California, Gonnwticut, Florida, Indiana, Iowa, Kansas, Kentucky, Massachusetts, Maryland/DC, Michigan, Minnesota, Mi=$lwimi, MiSsouri, Montana, Nebraska, New Hampshire, New Jersey, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Caroline, South Dakota, Tennessee, Texas, Vermont, Virginia, Washington, West Virginia, and Wisconsin.

bN.A. = Not available.

SOURCE: AARC survey in 37 States, reported in Care for Life, “Prolonged Mechanical Ventilation,” prepared for the Office of Technology Assessment, U.S. Congress,

Washington, DC, 1985

Table 6-4 provides more detail about treatment

settings for ventilator patients of different ages.

While these data describe patients in only 37

States, and the age breaks are crude, they are the

most complete available data of this type. The

figures clearly show that, in contrast to children

under age 18 and adults ages 18 to 64, more older

persons receive mechanical ventilation and more

of them are treated in hospitals.

Indicators of the duration of mechanical ventilation come from a survey of institutions and two

case studies conducted for OTA by Care for Life

(21). Eleven hospitals across the United States and

Canada’ supplied data for all current elderly patients who had been treated with mechanical ventilation for at least 14 days and for at least 4 hours

per day. Almost one-third of the elderly patients

in those institutions had been ventilated for more

than 6 months, and most of those had been ventilated for more than a year. Case studies of

ventilator-dependent patients in hospitals, nursing homes, and rehabilitation institutes in Chicago

and in New York City found, similarly, that between 25 and 40 percent of the elderly patients

who required mechanical ventilation for at least

2 weeks needed treatment for 6 months or longer.

In New York, one-third of the patients had been

ventilated for 21 to 30 days and 20 percent for

30 to 90 days.

The institutions surveyed were: Boston University Hospital (Boston, MA); Gaylord Hospital (Wallingford, CT); Meriden-Wallingford

Hospital (Wallingford, CT); Goldwater Memorial Hospital (New York,

NY); Bethesda Lutheran Hospital (Minneapolis, MN); Rancho Los

Amigos (Downey, CA); Creighton University Hospital (Omaha, NE);

Texas Institute for Research and Rehabilitation (Houston, TX); Emory

University Hospital (Atlanta, GA); University of Wisconsin Hospital

(Madison, WI); and St. Michael’s Hospital (Toronto, Ontario).

Cost of Mechanical Ventilation

Information about the cost of maintaining a patient on a ventilator comes mostly from the reports

of individual hospitals and other providers describing cost experience for the patients they serve.

The dissimilar requirements of different patients,

the nonrepresentative samples, and other methodological problems account for considerable variation in reported costs. For all these reasons,

generalizations about cost and comparisons of

alternate cost estimates must be made very cautiously.

There is considerable confusion in the literature regarding how to define the cost of mechanical ventilation and, especially, whose costs are

at issue. Distinctions are seldom made among

“costs, “ “expenditures,” and “charges, ” i.e., costs

incurred by the hospital or other provider, paid

by the insurer or patient, and billed by the provider. Many studies label as “cost” whatever dollar figures were available.

For hospitalized patients, the cost of mechanical ventilation may be defined narrowly as the

costs specifically associated with ventilator care,

or it may be defined broadly to include other costs

associated with treatment (notably, the hospital

daily rate). Similarly, for home care patients, cost

may be defined narrowly as only the costs for ventilation equipment and professional services, or

it may be defined to include costs of supportive

equipment and services (e.g., backup equipment,

wheelchairs, architectural modifications, and the

services of attendants, drivers, and housekeepers).

Lost income or productivity of the ventilator patient or, more likely in the case of elderly patients,
Ch. 6—Mechanical Ventilation ● 219

family caregivers, has not been computed in any

published cost estimates, but this is often a significant component of the family’s cost experience.

Charges for Mechanical Ventilation

in the Hospital

A 1983 survey by the AARC (2) found the average annual hospital charge for a ventilatordependent patient (based on the mean daily hospital charge for respiratory plus nonrespiratory

care) to be $270,830 (equivalent to $22,569 per

month or $742 per day). Data from the AARC’s

1985 survey reported by Care for Life (21) indicate that the average annual hospital charge had

risen 11 percent to $300)760 (equivalent to $25)063

per month or $853 per day). As shown in table

6-5, published monthly hospital charges ranged

from $12,300 in 1975 to $32,800 in 1982. In the

surgical ICU of Pittsburgh’s Presbyterian-University Hospital, the charges for critically ill ventilator patients currently exceed $2,000 per day (48).

This includes all care in the surgical ICU except

fees charged by private physicians.

In addition to the major costs associated with

high staff-to-patient ratios and inpatient care in

general, hospital charges reflect the high capital

costs associated with mechanical ventilation. The

most popular ventilators in the hospital market

ranged in price, in 1984, from approximately

$15,000 to $18,000 per unit (13). Expensive accessories needed to provide mechanical ventilation in the hospital include oxygen delivery systems and concentrators, blood gas monitors, and

pulmonary analysis equipment.

Charges for Mechanical Ventilation

in the Patient’s Home

Presumed economy is one of the main reasons

for current interest in home ventilator care; however, there is considerable variation and disagreement regarding home care charges. AARC’s 1985

data indicate that charges for home ventilator care

averaged $1,853 per month ($22,236 per patient

per year) (21). Other investigators have reported

monthly bills for home ventilation as low as $350

per month (for a patient requiring a ventilator only

at night) (34) to over $16)000 per month (for patients requiring continuous ventilation, oxygen,

and round-the-clock care by registered nurses)

(108). Costs tend to be highest when the patient

is first sent home, particularly if equipment is purchased.

Whether home care for ventilator patients is

more economical than care in the hospital or nursing home, and the magnitude of potential savings,

depends on characteristics of the particular case.

The type of ventilator required, whether the

equipment is purchased or rented, the amount

of oxygen required, and method of oxygen delivery are key factors. Most important is the ability

of the patient or family members to provide care

versus the need for professional nursing services.

Table 6-5.—Reported Monthly Charges for Hospitalized Ventilator Patients

Date Location No. of patients Patient’s ages Chargesa

Davis, et al,, . . . . ., .,1975 -76 St. Louis, MO 100 Avg. 67 $12,300

Sivak, et al. . . . . . 1978 Cleveland, OH N.A. b

N.A. $15,600

Feldman & Tuteur . . . . . . . . . . . . . . . . . . .1981 St. Louis, MO 2 Avg. 57 $17,500

Splaingard, et al. ,1982 Houston, TX N.A. N.A. $15,000

Banaszak, et al. .. . . . . . . . . . . . . .N.A. Milwaukee, WI 2 Avg. 61 $15,469

Giovannoni . . . . . . . . . . . ., .. .1982 Madison, WI 5 N.A. $32,800

AARC . . . . . .1985 37 States 3,771 All $25,063

aRepOfled charges are not adjusted for inflation

bN A = Not available.

SOURCES: 1, I-I.D. Davis, 111, S.S. Lefrak, D. Miller, et al., “Prolonged Mechanically Assisted Ventilation: An Analysis of Outcome and Charges, ” Journal of the American Medical Association 243(1):43-45, 1960.

2. E.D. Sivak, E.M. Cordasco, W.T, Gipson, et al., “Clinical Considerations in the Implementation of Home Care

Ventilation Observations in 24 Patients,” C/eveiarrd Ciinic c?uarterfy 50:219-225, summer 1983.

3. J, Feldman, and P.G. Tuteur, “Mechanical Ventilation: From Hospital Intensive Care to Home,” Heart and Lung

11(2):162-165, 1982.

4. M.L, Splaingard, R,C. Frates, Jr., G.M. Harrison, et al,, “Home Positive Pressure Ventilation: Twenty Years Experience,” Chest 84:376-382, 1983.

5 E.F. Banaszak, H. Travers, M Frazier, et al., “Home Ventilator Care,” Respiratory Care 26(12):1262-1268, 1961.

6. R. Giovannoni, “Chronic Ventilator Care From Hospital to Home,” Respiratory Therapy 14:29-33, 1964.

7 AARC survey in 37 States, reported in Care for Life, “Prolonged Mechanical Ventilation,” prepared for the Office

of Technology Assessment, U.S. Congress, Washington, DC, 1985.

63-216 0 - 87 - 6 : QL 3
220 ● Life-Sustaining Technologies and the Elderly

The total cost of initial purchases necessary for

a home ventilator program, in 1984, has been estimated to range from $8,000 to $15,000 (41,77).

Prices for popular home ventilators in 1985 were

between $5,000 and $7,000. Patient circuits, hoses,

valves, filters, and other needed accessories

ranged in price from about $5 for a 4-inch tapered

flextube to $650 for a humidifier (64). Other essential supplies, such as sterilizing agents, sold for

$1.25 to $9.00 per month (79). Home ventilator

patients usually must keep on hand at least a 1-

month inventory of essential supplies and spare

parts for their equipment (68). When equipment

is rented, charges for equipment and disposable

supplies range from about $825 to almost $3)600

per month, averaging $1,500 (93).

Another major expense for home ventilator patients is for extra equipment—needed as backup

in the event of equipment failure; for portability;

and to provide the different kinds of ventilator

support that may be needed in different circumstances (55,86). For the estimated 2,500 home respiratory patients in the United States in 1978, there

were approximately 5,000 pieces of equipment

in use (126). The equipment needs of one home

ventilator patient are illustrated by the following

comment:

In 1949, when a sophomore in high school, I

was completely paralyzed from polio and placed

in an iron lung. . . . Now . . . I use, during a 24-

hour period, a rocking bed and a pneumobelt

powered by a Bantam portable respirator for sitting in a wheelchair. When in bed but not rocking, I use a Zephyr positive pressure blower, complete with cascade, via long hose and mouthpiece.

In addition, I use emergency and maintenance

frog breathing and have an extra Bantam portable for traveling (125).

For home care patients, charges for regular

maintenance and repair of ventilation equipment

may also be significant. For rented equipment, the

“Frog” or glossopharyngeal breathing is a substitute method of

breathing that can produce adequate ventilation for short periods,

even when there is total paralysis of the respiratory muscles. It uses

the tongue and pharyngeal muscles to force air by repeated swallowing into the trachea and lungs. The muscles of the tongue, soft

palate, fauces, pharynx, and larynx must be functional, and considerable instruction and practice are needed to learn this technique.

Frog breathing may be used for emergencies, transference, chest

stretching and coughing, and to permit time off the ventilator (63).

cost of maintenance and repair is included in the

monthly rental rate, and service is the responsibility of the vendor. For purchased equipment in

the home, patients are responsible for repair and

maintenance, which can amount to anywhere

from $1,500 to $2)500 per year (93). Some patients

who use negative pressure ventilators, or their

caregivers, can perform maintenance and repairs

themselves, finding that “the average [negative

pressure] home respirator is no more complicated

than a washing machine” (26). With positive pressure ventilators, however, especially as those manufactured for home use have become increasingly

sophisticated (44), self-maintenance is usually not

feasible (102).

Securing and paying for proper equipment

maintenance are significant problems for some

home ventilator patients. Reimbursement provisions (under Medicare and private insurance) generally do not consider required maintenance, some

durable medical equipment dealers are not trained

to service the devices they distribute, and most

repairs and recalls necessitate sending the ventilator to the manufacturer in order to maintain

the warranty and prevent liability (44).

Reimbursment for Mechanical

Ventilation

Reimbursement for Hospital Care

Under Medicare’s Part A prospective payment

system (see ch. 2), Medicare pays hospitals a fixed

amount that depends on the patient’s DRG, rather

than on the number or type of services he or she

receives. Since approximately 30 DRGs are potentially associated with mechanical ventilation, and

the patient may or may not qualify as an "outliner,” Medicare payments for ventilator patients

vary widely. Often, hospital costs substantially exceed Medicare’s payment for patients requiring

long-term mechanical ventilation (127). This is particularly likely if the hospital stay is very long or

if treatment includes a long stay in the ICU (18).

Medicare will not reimburse hospitals for “administratively necessary days” (i.e., days during

which inpatient care is no longer necessary but

lower level care is not immediately available) unless the patient is already an outlier based on

length of stay (53).
Ch. 6—Mechanical Ventilation . 221

At the same time, elderly patients who require

prolonged mechanical ventilation may exhaust

their Medicare hospital benefits for a given episode, and they may exhaust their lifetime benefits as well. Moreover, a patient’s personal obligation toward the cost of care (a deductible per

admission, a portion of the daily rate for days 61

through 90, and a portion of the daily rate for

each day of the 60 day maximum lifetime benefit)

may exceed his or her personal or family resources. For some ventilator patients, total bills

are lower at home than they would be in the hospital, but the patient’s out-of-pocket expenses may

remain very high and, indeed, may be higher than

the unreimbursed components of hospital care.

Elderly patients who deplete their personal resources or whose income is below specified limits

may qualify for benefits simultaneously from

Medicare and Medicaid. Medicare policy allows

hospitals to bill other payers, including Medicaid,

for services Medicare does not cover.''10

CBO (117) estimated that in fiscal year 1985, combined Federal and State Medicaid expenditures

for a hospitalized ventilator-dependent patient

(of unspecified age) averaged $98,000 per year

(equivalent to $8,167 per month or $268 per day),

not including additional payments for physician

charges (118).

Reimbursement for Nursing Home Car e

Medicare coverage in skilled nursing facilities,

for patients who qualify, is limited to 100 days.

Individual nursing homes have tried, so far unsuccessfully, to workout special agreements with

Medicare for more flexible reimbursement for

ventilator-dependent patients (24).

Some ventilator-dependent patients require

“subacute” care (i.e., care that is less intense than

that provided in a hospital but more intense than

that typically provided in a nursing home). Medicare and Federal Medicaid legislation do not provide subacute care benefits, however, approxi10For patients who are eligible for both Medicare and Medicaid,

some hospitals have sought payment for “administratively necessary days” from Medicaid, under Medicaid provisions for subacute

care. In most States, these attempts have been unsuccessful, but

they illustrate the confusion regarding responsibility for payment (53).

mately one-third of States’ Medicaid programs now

include provisions to address these higher costs.

Under Wisconsin’s “Skilled Care Reimbursement

Supplement” and Illinois’ “Exceptional Nursing

Care” provision, for example, ventilator-dependent

patients in those States are now eligible for supplemental Medicaid funds. In both, because the

number of patients applying for these benefits is

still very small, the rates have been negotiated by

nursing homes on an individual basis (40). Some

States, California for example, have provisions for

extra skilled care based on preset rates (53). Some

observers are concerned that even when this reimbursement is available, the rates maybe too low

to permit adequate staffing and quality of care (44).

Reimbursement for Home Care

Third-party reimbursement for respiratory care

in the home is partial and undependable. Medicare and major for-profit health insurance companies have approved reimbursement in individual cases, (89) but the patient’s out-of-pocket

expenses often remain high.

Many chronic ventilator-dependent patients

qualify for Medicaid, but the regular Medicaid programs of most States cover few of the expensive

services (e.g., daily nursing) many of these patients

need. The home and community-based waiver

gives States the option to offer (but most do not)

some special services to subgroups of their Medicaid patients, including ventilator-dependent patients. Under the waiver, Medicaid will cover care

in the home so long as the average per capita expenditure does not exceed that for institutional

care (92).

The 1985 Consolidated Omnibus Budget Reconciliation Act (COBRA, Sec. 9504) made respiratory

care services for ventilator-dependent individuals

an option that States can offer under their regular Medicaid programs. States can choose to extend this coverage to those patients who require

mechanical ventilation at least 6 hours per day,

were ventilated at least 30 consecutive days in a

hospital or other institution, would need to remain institutionalized if home respiratory care

were not reimbursed and would have been eligible for Medicaid inpatient benefits, want to go
222 ● Life-Sustaining Technologies and the Elderly

home, and have adequate social support services

to do SO. ”

Under the provisions of Medicare Part B (Supplementary Medical Insurance), durable medical

equipment (DME) is covered in the home when

it is supplied directly by a DME vendor. Medicare

pays 80 percent of reasonable charges, and the

remaining 20 percent is the patient’s responsibility. Prior to changes in Medicare regulations that

11There had been several earlier proposals in extend

respiratory care services to the The bills” proposed in 1985 2703 and S, 1249) would have provided mandatory coverage under both and Medicare. Supporters

of these projected annual of million to Medicaid

and no increase to Medicare (3). In contrast, estimated that

 protrusions would be cost neutral but $18

million to costs in year to the 

iected number of new patients 1 17).

went into effect in February 1985, almost all durable medical equipment for mechanical ventilation

was rented. Medicare currently requires purchase

of all items costing less than $120 and provides

a purchase option for more expensive equipment

whose expected rental cost over time would exceed the purchase price.

Effect of Reimbursement on Choice

of Treatment Setting

For at least some ventilator patients, the availability or lack of reimbursement is a major influence on the choice of treatment setting. At times,

the setting whose use is encouraged by reimbursement policy is not the most economical or the least

restrictive. According to a representative of AARC,

Photo credit: Foster Medical Corp

Some elderly patients make successful adjustment to chronic ventilator dependence.

Supportive family members and caregivers are essential.
Ch. 6—Mechanical Ventilation ● 223

“there are literally hundreds of people–young and

old—around the nation who are needlessly confined to their hospital beds by current reimbursement policy” (2). Based on their 1985 survey, AARC

reports that 34 percent (813) of all hospitalized

chronic ventilator patients identified in 37 States,

including 349 ventilator patients over age 65,

would have been able to leave the hospital if reimbursement had been available for ventilator support in the home (21). In addition, some home ventilator patients have had to return to the hospital

in order to reduce their out-of-pocket costs (21).

The hospitalization of ventilator patients who

could be safely cared for at home, AARC argues,

not only subjects patients to unnecessary institutionalization, but also wastes up to $278,524 per

patient per year, much of which is taxpayers’

money.

The availability and level of reimbursement also

affects health care institutions’ capacity to provide care. Hospitals facing high unrecoverable

costs under Medicare’s prospective payment system have strong incentives to limit access to ICUs,

to discharge patients earlier, or to transfer patients

to other facilities. Some observers fear that community, acute care hospitals will no longer be willing or able to care for Medicare patients who require prolonged mechanical ventilation (127). Also,

‘This figure represents the difference between annual hospital

charges ($300,760) and amual home care charges ($22,236). Although

this calculation probably overstates the potential savings to payers

by assuming that hospital charges are fully reimbursed, the potential savings do appear to be substantial (21).

acute care hospitals’ incentives to discharge patients earlier increase the pressure on other kinds

of facilities to admit them. Currently, available

reimbursement for nursing homes provides only

limited incentive to develop facilities for ventilatordependent patients (115).

In States where Medicaid reimbursement is

available, nursing home care is now a real alternative for ventilator-dependent patients. In some

cases, however, this development has unwanted

results. In at least one case in Illinois, a family was

forced to move a ventilator-dependent child from

home to a nursing home in order to reduce the

cost to Medicaid (44).

CBO estimated that if coverage for respiratory

therapy were available in the home, an additional

200 elderly COPD patients would be discharged

home with a ventilator each year (117). Some observers caution that extending coverage for home

care would give impetus to the use of mechanical

ventilation for new categories of patients and

could lead to a repeat of the ‘(

Pandora’s box”

phenomenon exemplified by Medicare’s End-Stage

Renal Disease program (see ch. 7). Those who dismiss this warning argue that no change in reimbursement will change the medical indications for

home mechanical ventilation. Moreover, the American College of Chest Physicians’ clinical guidelines

for home care indicate that most COPD patients,

because of the complex medical management they

require, are unlikely candidates for long-term mechanical ventilation at home (44,86,102).

OUTCOMES OF MECHANICAL VENTILATION

The outcomes of mechanical ventilation reflect

the wide variability in patients’ physiological reserve, mental capacity, social resources, and will.

Across and within each age group, patients’ life

expectancy and ability to cope with this technology vary greatly and often cannot be predicted.

The following cases illustrate the extremes of patients and outcomes:

senator Jacob Javits was told he had amyotrophic lateral sclerosis (ALS) in 1979, at age 75,

Within 2 years, the progressive muscle weakness

had confined the avid tennis player to a wheel-
224 ● Life-Sustaining Technologies and the Elderly

Because most causes of respiratory failure are

either short-term and treatable or have a rapidly

terminal course (7), most reports in the literature

measure the outcomes of mechanical ventilation

in the general terms of survival or, conversely,

mortality. Few reports differentiate survival with

successful weaning from survival with chronic

ventilator dependence. The studies that have examined age-related differences in survival are few,

and the studies that have focused on the social

and psychological impact of prolonged mechanical ventilation describe, for the most part, younger

patients or exceptional elderly patients who can

return to their own homes. Prospective, randomized, controlled studies to test the outcomes of

mechanical ventilation have not been performed,

nor would they be ethically feasible (21).

Clinical Outcomes of Mechanical

Ventilation

Survival of Respiratory Failure

There are serious problems in comparing survival data from available studies. None of the

reported studies is based on a representative sample of ventilator patients, much less a representative sample of elderly ventilator patients. Rather,

each of the available studies was conducted at a

single hospital, with a unique patient population,

resources, criteria for admission to the ICU, and

criteria for instituting mechanical ventilation. Patients in different hospital studies may not have

started with equal chances of survival.

In addition, methodological differences, such as

how “survival” is defined, abound. Studies that

measure survival of ventilator patients only in the

short term (e.g., survival of the ventilation episode

or survival until hospital discharge) probably overestimate the benefits of mechanical ventilation.

On the other hand, the benefits of this technology may be underestimated if one attributes all

mortality of ventilated patients to the ventilator.

A mechanical ventilator cannot be expected to protect a patient from myocardial infarction or any

of the numerous other dangerous conditions that

threaten all critically ill patients and many healthy

elderly individuals. Furthermore, mortality sometimes results from instituting mechanical ventilation too late (83).

OTA’s review of the literature from 1973 to 1985

found eight clinical studies that examined survival

rates among patients receiving mechanical ventilation in acute care hospitals. Despite problems

of comparability and some dissimilar results, the

available studies reveal a general consistency—

i.e., mortality among critically ill ventilator patients

is high, and it increases with increasing age, As

shown in table 6-6, the five studies that reported

survival rates for patients in ICUs, found survival

rates ranging from 36 to 89 percent, with an average of 63 percent. In five of the six studies that

reported survival of critically ill ventilator patients

to hospital discharge, the survival rates were even

lower, averaging 55 percent. In the months following hospital discharge, survival rates dropped

even further.
Ch. 6—Mechanical Ventilation ● 225

Table 6-6.—Survival Rates for Patients Receiving Mechanical Ventilation in Acute Care Hospitals, All Ages

Survival rate

Number of Patients’ Minimum To hospital

Study date patients ages ventilation In ICU discharge 1 Year

Nunn, et al. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1970-74 100 0 to 75+ 4 hr. 670/o 47 ”/0 N. A.=

Pierson, et al. . . . . . . . . . . . . . . . . . . . . . . . . . . 1971-72 113 70 to 95 1 hr N.A. 51 % N.A.

Petheram & Branthwaite . . . . . . . . . . . . . . . . . 1972-77 91 3 to 75 N.A. N.A. 54% 380/o

Zwillich, et al. . . . . . . . . . . . . . . . . . . . . . . . . . . 1972-73 314 15 to 95 1 hr. 640/o N.A. N.A.

Davis, et al. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1975-76 104 Mean 68.7 48 hr. N.A. 44% 37%

Schmidt, et al.. . . . . . . . . . . . . . . . . . . . . . . . . . 1976-77 137 N.A. 48 hr. 360/o N.A. 300/0

Witek, et al. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1980 100 17 t0 70+ N.A . 600/0 50 ”/0 330/0

McLean, et al. . . . . . . . . . . . . . . . . . . . . . . . . . . 1982-83 1,010 14 to 95 N.A. 890/o 820/o N.A.

aN.A. = Not available,

SOURCES: 1. J.F. Nunn, J.S. Milledge, and J. Singaraya, “Survival of Patients Ventilated in an Intensive Therapy Unit, ” L?rlflsh Medical Journa/ 1(6177): 1525.1527, June

9, 1979.

2. D.J. Pierson, T.A. Neff, and T.L. Petty, 4’Ventilatory Management of the Elderly,” Geriatrics 26(1 1): 66-95, 1973,

3. 1.S, Petheram and M.A. Branthwaite, “Mechanical Ventilation for Pulmonarv Disease.” Anesthesia 35:467-473, 19S0.

4. C.W. Zwillich, D.J. Pierson, C.E. Creagh, et al., “Complications of Assisted” Ventilation: A Prospective Study of 354 Consecutive Episodes, ” American

Journal of Medicine 57:161-170, 1974.

5. H D. Davis, Ill, SS. Lefrak, D. Miller, et al., “Prolonged Mechanically Assisted Ventilation: An Analysis of Outcome and Charges,” Journal of the American

Medical Association 243(1):43-45, 1960.

6. C.D. Schmidt, C.G. Elliott, D. Carmelli, et al., “Prolonged Mechanical Ventilation for Respiratory Failure: A Cost-Benefit Analysis,” Critical Care Medicine

11(6):407-41 1, 1963,

7. T.J, Wltek, Jr., E.N. Schachter, N.L. Dean, et al., “Mechanically Assisted Ventilation in a Community Hospital: Immediate Outcome, Hospital Charges,

and Follow-up of Patients,” Annals of Internal Medicine 145:235-239, 1985.

6. RF. McLean, J.D. McIntosh, G.Y. Kung, et al., “Outcome of Respiratory Intensive Care for the Elderly,” Critical Care Medicine 13(8):625-629, 1965, It by

Williams & Wilkins, 1965.

Published studies from Denver (85,87,88,129);

Philadelphia (95); Toronto (75); and London (83)

have consistently reported that mortality is highest for ventilator patients who are elderly. While

noting that advanced age is an important predictor of survival, however, almost every author is

quick to point out that age alone is not a good

predictor. Other factors that bear on survival include primary disease process (21,81,98)128); number of failed systems (27,59); time to reversal of

organ failure (21); and specific physiological values

(98).

OTA found only two studies that specifically examined survival among elderly patients receiving

mechanical ventilation in the hospital. The first

study, by Pierson and colleagues (88), followed all

113 patients over age 70 who were treated with

mechanical ventilation at either of two Denver

hospitals between January 1971 and December

1972. The investigators found that survival to hospital discharge–51 percent overall-declined with

increased patient age, but that differences among

subgroups of elderly patients (i.e., 70 to 74, 75

to 79, and 80 to 95) were not statistically significant. The researchers concluded:

These data do not support the contention that

mechanical ventilation in the elderly is inappropriate or usually unsuccessful. On the contrary, they

suggest that the potential gains from such treatment may be as great in this age group as in any

other . . . (88).

The second study of elderly ventilator patients,

by McLean and colleagues, was conducted in the

respiratory ICU (RICU) of St. Michael’s Hospital,

an affiliate of the University of Toronto (75), Results of this study are displayed in tables 6-6 and

6-7. The first observation is that survival rates for

each age group in this study are high relative to

the survival rates in the other studies summarized

in table 6-6. (This is explained by the RICU’s polTable 6-7.—Survival Rates for Patients Receiving

Mechanical Ventilation in the St. Michael’s Hospital

Respiratory Intensive Care Unit, by Age

Survival rate

Number of To ICU To hospital

Age admissions =discharge discharge

14-19 . . . . . . . . . . . . . 4 1000/0 75%0

20-34 . . . . . . . . . . . . . 50 94 88

35-44 . . . . . . . . . . . . . 102 93 91

45-54 . . . . . . . . . . . . . 213 95 92

55-64 . . . . . . . . . . . . . 377 91 86

65-74 . . . . . . . . . . . . . 213 80 69

75-95 . . . . . . . . . . . . . 54 76 54

Total . . . . . . . . . . . 1,013 890/o 82%

aThere were eight repeat admissions and five patients Of unknown age amon9

1,010 patients.

SOURCE: Adapted from R.F. McLean, J.D. McIntosh, G.Y. Kung, et al., “Outcome

of Respiratory Intensive Care for the Elderly, ” Critical Care Medicine

13(6):625-629, 1965, ~1 by Williams & Wilkins, 1965.
226 ● Life-Sustaining Technologies and the Elderly

icy to admit only those patients with cardiorespiratory failure due to “potentially reversible causes”).

Equally clear from the figures in table 6-7 is the

decline in survival rates with increasing patient

age. The researchers attributed this in part to the

fact that more of the younger patients were in

the RICU following elective cardiovascular surgery (19). Survival rates were significantly lower

for patients over age 75 than for younger patients.

However, no difference was found in survival rates

between subgroups of patients 65 to 74 versus

75 and older. On followup of the St. Michael’s patients conducted between 12 and 24 months after

hospitalization, 18 of the 49 patients over age 75

were alive, and 14 of them were living in their

own homes. The researchers concluded that some

elderly patients can benefit from mechanical ventilation and that a patient’s age alone does not have

good prognostic value.

Chronic Ventilator Dependenc e

For many patients, especially those with chronic

or degenerative diseases (e.g., muscular dystrophy,

spinal cord injury or disease), medical stability with

chronic ventilator dependence is the best realistic outcome. For others, chronic ventilator dependence is an unexpected, devastating outcome. For

individual patients with irreversible disease processes, “failure to wean” is often impossible to predict prior to instituting mechanical ventilation (21).

Some observers regard inability to wean as a

“feared but rare complication” (34).

Although the risk of failure to wean is probably greatest for patients with conditions associated with advanced age (e.g., COPD), the patient’s

age is not the critical factor. Experience with 355

ventilator-dependent patients treated between

1980 and 1985 at the Prolonged Respiratory Care

Unit of Minneapolis’ Bethesda Lutheran Medical

Center led investigators there to conclude that “age

is not a deterrent to attempting the weaning process” (21). Difficult weaning and failure to wean

are associated with a variety of factors that originate either in the patient, the ventilator system,

or the artificial airway (50).

Physicians working in pulmonary rehabilitation

hospitals have provided OTA the following information about patients at their institutions requiring prolonged ventilator support. At New York

City’s Goldwater Memorial Hospital, most of the

patients who require long-term mechanical ventilation are elderly persons with chronic lung

disease or neuro-muscular-skeletal diseases. Although they must remain in the hospital with mechanical ventilation indefinitely, most of these

patients are judged to have “quite favorable” prognoses. Most of them are said to remain mentally

competent and to lead satisfying lives within the

rehabilitation milieu of the hospital, for from 1

to 10 years (21).

The Prolonged Respiratory Care Unit at Minneapolis’ Bethesda Lutheran Hospital is a regional

center, serving ventilator-dependent patients from

the entire upper Midwest. The majority of patients

are over 60 years old, and nearly half of those

individuals are over 70. Between August 1979 and

April 1983, patients had lengths of stay ranging

from 2 to 831 days, with an average stay of 148

days (52). Of the 86 patients admitted during the

first 9 months of 1985, 73 percent survived and

71 percent of them were completely weaned (21).

Complications Associated With

Positive Pressure Ventilation

The incidence of complications associated with

positive pressure mechanical ventilation and incubation, especially in acute care, is high. Complications range from relatively minor conditions,

such as elevated body temperature, to severe and

potentially fatal complications including obstruction or displacement of the tracheotomy tube,

pneumothorax, pulmonary emboli, and nosocomial pulmonary infections.

Above-atmospheric pressure during inspiration,

never present in a spontaneously breathing individual, frequently results in decreased arterial

blood pressure and decreased cardiac output, potentially causing inadequate blood return to the

heart (99).

Controlled mandatory ventilation produces a

“clinically important” decrease in renal function

(110). In one study of 100 patients ventilated for

a minimum of 48 hours, 18 suffered associated

renal failure (27). Impaired renal function, in turn,

often leads to increased retention of water and

salt, which sometimes is associated with, among

other things, respiratory problems.
Ch. 6—Mechanical Ventilation ● 227

One study reported 400 individual complications

or potential complications in 354 episodes of acute

mechanical ventilation (129). The above-cited study

of patients who required ventilation for 48 hours

or longer reported that 11 percent experienced

life-threatening complications (27). A 1981 review

cited one study in which serious complications

were associated with long-term endotracheal incubation in 4 percent of patients and another in

which serious complications accompanied 16 percent of tracheotomies (112). For adults, the risk

of most complications is not affected by increased

age (105), but even minor complications can lead

to increased morbidity and mortality in patients

who are already critically ill or severely debilitated. When complications are identified promptly,

steps to prevent serious consequences

ally be taken (85).

Effects on Mental and

Physical Functioning

Improved Mental Functioning

can usuMany patients with even mild chronic respiratory insufficiency have chronically impaired mental function due to hypoxia (i.e., insufficient oxygen) or hypercarbia (i.e., an excess of carbon

dioxide). Even in mild degree, these conditions are

associated with fatigue, hypersomnolence, and decreased mental function (21). Patients in acute respiratory failure are frequently severely hypoxic

and their level of consciousness may, as a result,

“be grossly altered” (111). Mechanical ventilation

with or without supplemental oxygen (or, for less

serious cases, supplemental oxygen alone) can correct the exchange of oxygen and carbon dioxide

and thus may improve a patient’s mental functioning, alertness, and clarity of thought (21).

Discomfort

Positive pressure ventilation imposes numerous

stressful physical effects. These effects, which are

at their most extreme for acutely ill patients, have

been described not so much as “pain,” which can

be relieved in most cases by morphine or other

drugs, but as a multitude of relatively minor complaints that add up to what one survivor called

a condition of being “chronically uncomfortable”

or “just plain miserable. ” Contributing to the patient discomfort are such things as ‘(the raw posttonsillectomy feeling in one’s throat after a nasogastric tube has been in place for 31 straight days,”

chest tubes reminding you every time you try to

breathe or move, nausea, abdominal cramps and

hiccoughs (related to swallowing of air and distension of hollow organs), feeling dirty, having a

bad taste in your mouth, and fatigue (124). other

causes of discomfort related to the ventilator are

ability to take only shallow breaths, potential

hypoxia (resulting in restlessness, confusion,

change in blood pressure, or tachycardia), heavy

tubing, impaired ability to cough, inability to yawn

or sigh, impaired ability to swallow, and overheated air (71).

Patients who are unable to move secretions from

the lungs by an effective cough must routinely

undergo “one of the most unpleasant experiences

that a ventilator patient has’’ —suctioning (71). This

technique for removal of secretions from the airway involves passage of a catheter through the

trachea and into each mainstem bronchus, with

the application of suction for 10 to 15 seconds.

Eating Difficulties

Ventilator patients who are intubated endotracheally, i.e., through their nose or mouth, can

take no food or liquid by mouth. Those who require endotracheal incubation of more than 2 or

3 days (as well as those who are malnourished)

require tube feeding or other forms of nutritional

support (see ch. 8). Patients intubated by tracheotomy, on the other hand, can eat if they have

normal swallowing ability.

Speech/Communication Problems

Inability or severe restriction in speech is a

pervasive problem for patients receiving positive

pressure ventilation. Those who are intubated

endotracheally cannot speak. Tracheotomized patients can speak during ventilator-delivered inspirations if the tracheotomy cuff is partially deflated or if they have special “speaking-cuffed”

tracheotomy tubes (45). These options are only

feasible, however, for patients who are medicalley

stable with stable respirations (68).

Communication problems can be a major source

of frustration for ventilator patients as well as their
228 • Life-Sustaining Technologies and the Elderly

family members and caregivers. Patients’ fears regarding their prognosis and the procedures and

equipment to which they are subjected may make

the need to communicate especially intense. Patients who are sufficiently alert may try to express

themselves in writing. Computers and other much

simpler devices (e.g., the “Speak and Spell” toy)

may be used. Some patients are helped by provision of a poster or set of cards depicting things

patients frequently want to express, such as “I’m

thirsty,” “I want to go to sleep,” “I want my family)

” etc. (One communication aid of this type, “The

Patient’s ABSee,” developed by Siemens, is shown

in figure 6-1. ) Other forms of nonverbal communication include hand-squeezing and other kinds

of signals that might be established before the patient is intubated. Maximizing the patient’s ability to communicate helps restore his or her sense

of control and, sense of personal value (38). For

acutely ill patients, nonverbal communication options are reduced by sedation, medication, confusion, and limited ‘mobility.

In the nursing literature, ventilator patients’ difficulty in communicating is regarded as probably

the patients’ most pressing problem (36). Communication problems may be not merely frustrating,

but dangerous. One former ICU patient reported:

On two occasions, the janitor pulled the respirator plug out of the socket without realizing it,

leaving me on a closed system with no movement

of air. I am told that emergency alarms were supposed to go off, but my only memory was having

to detach the respiratory tube from the tracheotomy myself in order to breathe room air (124).

The inability to call out for help is a source of great

fear. Psychologists studying the matter have suggested that the inability to communicate triggers

feelings of helplessness and despair that may negatively affect the course of the illness (94). Communication problems are made still worse by the

fact that too few caregivers and visitors know how

to talk to a person who is critically ill or appreciate how much these patients crave human contact.

Figure 6-1 .—Patient’s ABSees

SOURCE: Siemens-Elema AB, Ventilator Division, The patients ABSees.
Ch. 6—Mechanical Ventilation ● 229

It becomes a matter of routine for the staff to

frequently check the ventilator and all the tubings, connections, etc. All too often this is all that

is done—that is, we check the equipment but forget about the patient who is lying there worrying

if everything is working correctly. A simple statement to the patient such as, “Everything checks

out fine, ” could go a long way to reassure the patient that not only is the equipment functioning,

but that the staff is concerned enough to check

the ventilator frequently and verify that it is working (36).

Decreased Mobility

Patients tethered to a stationary mechanical ventilator are partially or totally immobilized. Limited

mobility brings physical discomfort, as well as the

risk of developing embolism, phlebitis, and pressure sores. In addition, the loss of control over

one’s physical movements is often experienced as

a constant fear of falling (out of bed). Perhaps most

serious is the physical “reconditioning” associated

with remaining relatively still for an extended time

and nonuse of the muscles of respiration (71). This

is manifested by general weakness and, after about

3 days of continuous ventilation, specific reconditioning of the respiratory muscles that makes

weaning from the ventilator more difficult after

that time.

For ventilator patients who do not need to be

confined to bed, portable ventilators allow mobility and a variety of physical activities. Even with

portable ventilators, however, logistical constraints

remain. Furthermore, portable ventilators can

only be used as the primary device for selected

patients.

Psychological Outcomes of

Mechanical Ventilation

A patient experience of severe respiratory impairment and treatment with mechanical ventilation, as with other life-threatening illness and

treatment, is a function of a variety of personal

and environmental factors. Among the most important are the patient’s personality, prognosis,

level of consciousness, social support, the quality

and sensitivity of care received, and treatment setting. Individual patients cope better or worse with

the physical, psychological, and social stresses to

which they are subjected.

These topics are addressed to some extent in

the nursing literature and in a handful of articles

by former or chronic ventilator patients; the scant

attention to these topics in the medical literature

is conspicuous except for some interest in patients’

psychological reactions to ICUs in general. In one

study of the psychological effects of ventilation,

the dissimilar perspectives of patients and their

family members, on the one hand, and nurses and

physicians, on the other, was singled out by the

researchers as their most striking finding (94).

Initial Reactions to Mechanical

Ventilation

Acutely ill ventilator patients experience many

of the significant psychological outcomes of mechanical ventilation that are characteristic of critical illness, institutionalization in general, and the

ICU environment in particular. Intense physical

problems, sleep deprivation, and medication interact to produce psychological problems that may

include depression, confusion, disorientation to

time and place, anxiety, and acute delirium, along

with fears of permanent dependency and preoccupation with death. These effects are particularly disturbing to acutely ill patients who are selfaware. One former ventilator patient described

his ‘(psychotic thinking” and loss of emotional control as frightening and embarrassing. He feared

that he might recover physically but not mentally,

and worried about his ability to resume his career, family roles, etc. (124). Difficulties in communicating, as described above, and the lack of

privacy typical in hospitals may exacerbate these

problems.

Initially, for many patients experiencing the difficult breathing that is characteristic of respiratory distress, the assistance offered by the ventilator provides a great sense of relief (71). Often,

however, this relief is subsequently replaced by

a sense of lost autonomy and lost control.

The patient . . . being mechanically ventilated

is expected to trustingly permit others to manipulate his physical and psychological self, his environment, and his significant others. A formerly

independent, self-reliant human being must

breathe artificially and be fed intravenously; he

is dressed and undressed, bathed, pulled, pushed,

and moved about without much control over his

keepers or himself. Finally, he finds his physical
230 Ž Life-Sustaining Technologies and the Elderly

and psychological nakedness exposed to strangers

who have varying levels of empathy (71).

Psychological discomfort can be minimized by

skillful caregivers and visitors. The sources of psychological distress include inadequate information

about why the ventilator is needed, its reliability

and alarm system, lack of confidence in the caregivers, difficulty communicating, lack of privacy,

loss of sleep, sensory deprivation or overstimulation, and loss of power and control.

Conscious adult patients on mechanical ventilation may experience what have been identified

as “the problem of threat)” ‘(the problem of loss)”

and “the problem of meaning” (38). According to

this analysis, in the early phases of treatment,

ventilator dependent patients exhibit a pervasive

anxiety about their survival. Feelings of being

threatened are reflected in fear of mechanical failure of the equipment and in a love-hate relationship to it. Many patients display a “hostile gratitude,” toward the ventilator and the caregivers

on whom they are dependent. According to one

formerly ventilator-dependent patient, “It was the

enemy. How dare a mass of steel and dials and

tubing take control of my life?” (38). In contrast,

another ventilator patient described the life-sustaining devices as “friends. ”

Loss of spontaneous breathing is accompanied

by loss of the ability to communicate, eat, and

move. Illness and institutionalization bring loss

of social roles within the community and family,

loss of accustomed life style, loss of positive body

image and self-image, loss of privacy, and general

loss of independence. For elderly patients, ventilator-related losses come at a time when other serious losses—retirement, income, social status,

friends, or spouse–are accumulating, Behavioral

responses to this multitude of losses are said to

resemble grief behavior, with a period of denial

followed by a period of depression. The ventilator patient’s greatest psychological problem is the

lack of control, the inability to do anything for

oneself or for anyone else.

By the same analysis, the other most serious

problem ventilator patients face is the need to reassess or reorder their basic values, “to discover

meaning in a drastically altered state of existence”

(38). This is sometimes described as a religious

crisis, focused on the struggle between living and

dying, and between meaning and despair.

Ironically, for patients who improve to the point

where weaning from the ventilator can be attempted, independence from the ventilator can

engender tremendous fear and anxiety (36), sometimes severe enough to impede the weaning process (61).

Adjustment to Chronic Ventilator

Dependenc e

Available information about the psychological

effects of chronic ventilator dependence pertains

to patients who have been able to leave the hospital. These individuals are medically stable, have

been through a period of rehabilitation designed

to help them adjust to their new lifestyle, and have

an established support system. To date, few

elderly patients have been included in this exceptional group.

Survivors of the polio epidemics of the 1940s

and 1950s constitute a special group of ventilatordependent patients. Of an estimated 300,000 persons who survived polio with some degree of disability, there were, in 1959, 1,200 who were ventilator dependent (63). Some of these people have

remained ventilator dependent ever since and now

are approaching age 65.14 Despite more than 25

years of ventilator dependence, many of these patients have managed to maintain a positive outlook, as the following cases illustrate (62):

Statement by a 52-year-old respiratory polio

quadriplegic, ventilator dependent since age 23:

“By being disabled we do miss out on many things.

Yet the kindness and consideration that we receive from others compensates in some small measure. . , , After several years at home with my husband and son, I ended up with pneumonia and

a blocked lung and moved to Pearson.15 In the

early 1970s I switched to positive pressure via

trach full-time. . . . I knit with a mouthstick and

enjoy reading and music. . . . I live one day at a

time and look forward to tomorrow. ”

14A1s0, some polio survivors are experiencing the delayed respiratory problems typical of post-polio syndrome and face the possibility that mechanical ventilation will again become necessary (63).

15A long-term respiratory rehabilitation facility in Vancouver, British Columbia.
Ch. 6—Mechanical Ventilation ● 231

Statement by a 52-year-old respiratory polio quadriplegic, ventilator dependent since age 30: “I was

living with my husband and seven children when

I contracted polio. . . . This is certainly not the kind

of life I would have chosen, but since it is the one

I’m living—I’m going to live it. ”

OTA found no information describing the polio

survivors or others whose psychological response

to ventilator dependence was poor. However, one

article, based on the author’s personal experience,

suggests that psychological problems among disabled people in general are great and that these

problems have been ignored by the mental health

professions (37). The author of that article estimates that at least one-third of spinal cord injured

persons, many of whom are ventilator dependent;

suffer serious anxiety or depression:

Morbid passivity is common. Drug and alcohol

abuse levels are high. Between 12 and 50 percent

of all deaths of spinal cord injured persons is by

their own hand (37).

A significant aspect of adjustment to chronic

ventilator dependence is actually adjustment to

institutionalization or to an otherwise changed living environment. Initiation of mechanical ventilation always necessitates a period of institutionalization and is frequently, especially for elderly

persons, the precursor to permanent institutionalization. A person who had been living in his or

her own home must be transferred to the acute

hospital and, subsequently, perhaps to a long-term

care facility. For patients already in a nursing

home, the need for ventilator support typically

requires transfer to the acute hospital and may

preclude return to the nursing home. Even home

care may involve a major adjustment—especially

if it requires the patient to move in with adult

children or vice-versa.

Effects on the Patient’s Family

and Caregivers

As is any life-threatening, lingering, and costly

illness, ventilator dependence is stressful not only

for the patient, but for those around the patient.

For the spouse and children, serious illness and

hospitalization can be physically, emotionally, and

financially exhausting. In addition to the strain

of frequent trips to and from the hospital over

an extended period, the severity of the patient’s

condition puts the family ‘(through many emotional highs and lows” (77).

In the early days or weeks of mechanical ventilation, family members typically experience the

same kinds of grief reactions that alert patients

experience. Like patients, they need understanding and communicative professionals to help them

cope with the changed situation of their relative,

its impact on their own lifestyle and, perhaps, its

spiritual meaning (38). The strain may be particularly great on the adult children of elderly ventilator patients. This “generation in the middle,”

often must, simultaneously, meet responsibilities

to their (possibly several) elderly parents and their

own children, as well as their spouse, work, etc.

(15).

The effects on the family are perhaps greatest

when a patient returns home and family members participate in their care. Certainly, home care

offers a far greater sense of normalcy and the

opportunity for the family to stay close. However,

having the patient at home means the patient’s

family “will be solely responsible for a patient’s

life.” According to one observer, the “very mention” of this fact “is overwhelming for the longterm ventilator-dependent patient and his family” (77) whose members must be responsible for

routine patient care and equipment maintenance,

recognizing signs of distress in the patient, and

knowing how to handle emergencies. Caring for

a ventilator-dependent person is a difficult, responsible, round -the dock job. Its time demands alone,

if not the economic and emotional drain, can

drastically change a family’s lifestyle; in a sense,

the whole household becomes tied to the machine.

Often, the physical and psychological load on

family caregivers is lightened if more people share

the work, Also, if financial resources permit, the

family’s workload can be lightened by employment

of nurses, attendants, and other helpers. For

elderly patients, both the number of relatives who

are available to help and the feasibility of purchasing assistance may be reduced.

Caring for critically, terminally, or chronically

ill ventilator patients also takes a toll on physicians, nurses, and other professional caregivers.

Unlike patients and family members, professional
232 ● Life-Sustaining Technologies and the Elderly

caregivers, especially physicians and special res- tients, grieving families, and their own fallibility

piratory personnel, are involved with illness and are under enormous stress, which can lead to perventilator-dependent patients by choice. Still, care- sonal problems, “burnout” and possible effects on

givers who are constantly faced with dying pa- the quality of care they can provide (see ch. 10).

MAKING DECISIONS ABOUT STARTING AND

STOPPING MECHANICAL VENTILATION

Decisions about the use of mechanical ventilation for individual patients are highly specific and

individualized, ideally focused on a comprehensive assessment of one patient’s condition and

prognosis and taking into account his or her personality and personal wishes. Such decisions occur

within the context of the laws, ethics, and customs

of the society, as well as the specific governmental,

institutional, and professional policies that limit

what is possible and what is permissible. Such decisions are also influenced by the diverse perspectives and objectives of the numerous parties involved in the decisionmaking process.

Some of the decisionmaking dilemmas that arise

in the care of individual patients are illustrated

by the following case:

The most fundamental decisions that must be

made about mechanical ventilation are: 1) whether

to initiate or withhold it, and 2) whether to continue or withdraw it. These decisions frequently

are not end-points, but rather part of a continuum

of momentous decisions. That is, decisions about

mechanical ventilation are often preceded by decisions about diagnostic tests, admitting the patient to the hospital or to the ICU, and providing

resuscitation. And, the decision to initiate mechanical ventilation is often followed by decisions concerning the transfer of a patient from one setting

to another and the provision of other life-sustaining technologies in the event of complications or

new illness. In making a decision about the use

of mechanical ventilation for a particular patient,

caregivers, patients, and family members must

be prepared to make subsequent difficult choices,

and policies must be broad enough to leave open

all suitable options.

Complicating decisions about initiation of mechanical ventilation is the fact that the need for

ventilation is sometimes unforeseen. In some situations, the diagnosis is known and the patient’s

eventual need for mechanical ventilation can be

anticipated. For patients with progressive diseases

like COPD and ALS, for example, eventual respiratory failure may be foreseen over a period of

years. There is time for collection of data pertinent to the prognosis as well as the patient’s

wishes. In other situations, however, patients experience respiratory failure without warning.

When a patient is in the throes of acute respiratory failure, there is no time to make a careful

diagnosis, to determine his or her wishes, or to
Ch. 6—Mechanical Ventilation ● 233

inform the patient and gain consent for incubation and initiation of ventilation.

Patients in respiratory failure are typically unconscious or, at best, in a severely altered mental

state due to hypercapnia, acidosis, and/or hypoxia.

Even once ventilated, some patients remain in a

compromised mental and emotional state that impairs or precludes their ability to participate in

decisions about their treatment. For decisions

about mechanical ventilation in these patients,

caregivers and family members acting as surrogates frequently play a fundamental role (see

ch. 3 and OTA background paper on surrogate

decisionmaking by A. Buchanan, M. Gilfix, and

D.W. Brock (16).

Decisions about the use of mechanical ventilation are also very difficult for the health professionals who are regularly involved in them. A recent workshop on “Withholding and Withdrawing

Mechanical Ventilator Support,” sponsored by

the National Heart, Lung, and Blood Institute

(NHLBI) and several professional organizations,”

provided valuable insights into the process of and

problems in clinical decisionmaking (see app. E).

Physicians expressed humility with respect to the

difficult clinical decisions they must frequently

make and particular trouble with the conflicts in

their joint roles as patient advocate and hospital

employee. This workshop was regarded by the

invited experts as a historic event, signifying important change in clinicians’ attitudes about mechanical ventilation and, in particular, their widely

held belief that the technology has come to be used

too frequently in cases where the patient does

not benefit. Perhaps, suggested one physician, if

more attention had been paid 10 years ago to decisionmaking about inititating mechanical ventilation,

a workshop on withholding and withdrawing

would not have been needed (107).

Physicians have different views about their role

in the decisionmaking process. Some physicians

believe that decisions about ventilator support

are entirely medical. The patient or surrogate must

16Cosponsors were the American Association of Critical-Care

Nurses, American Association for Respiratory Care, American College of Chest Physicians, American Thoracic Society, and the Puritan Bennett Foundation. The workshop was held in Washington,

DC, Sept. 30 through Oct. 2, 1985.

give permission for the physician’s decision to be

carried out; but patients should not be expected,

perhaps not even allowed, to “shoulder the burden” of such a grave decision (58). Others find

this view paternalistic and believe the physician’s

role should be mainly to educate and advise patients regarding treatment options. Ultimately, the

attending physician is responsible for the patient’s

care and is legally liable for action taken or not;

thus, the attending physician usually makes the

final decision or reviews the decision of house

staff. Increasingly, physicians view themselves as

members of a decisionmaking team, whose role

is to facilitate consensus of the, possibly disparate,

perspectives represented by the patient, family

members, consulting physicians, and other health

professionals (see ch. 10).

Clinical Considerations

Clinical evaluation of a patient’s condition is the

logical first component of the decision process.

Details of a patient’s physiological condition are

needed both for decisions about whether to initiate mechanical ventilation and about when to initiate it. Respiratory insufficiency or failure is not

always apparent by clinical observation alone, particularly in elderly patients.

The clinical manifestations of acute respiratory

failure . . . are nonspecific and seldom point

directly to the lung; in the elderly they may be

especially subtle. The most frequent signs—restlessness, confusion, and tachycardia—may be interpreted in the elderly patient as “sundowning,”

“senility,” or just “cantankerousness, ” and may not

arouse concern until respiratory arrest or other

serious complication occurs (87).

The clinical evaluation includes objective measurement and analysis of air volumes and pressures, blood gases, electrocardiogram, and

changes in heart rate. Other important clinical observations include vital capacity, breathing rate,

inspiratory capacity, tidal volume, and the degree

of physical and mental exhaustion. Because of time

limitations and variations in facilities, complete

data may not be available.

For each of the measurable parameters, levels

indicating adequate ventilation have been determined; for some parameters, however, there is
234 . Life-Sustaining Technologies and the Elderly

a range of acceptable values. The patient’s

precipitating conditions and previous state must

be taken into account; “absolute blood gas levels”

are “difficult to assign” (1 11). Inpatients with established chronic respiratory insufficiency, interpretation of blood gases is particularly difficult (1 11).

Thus, moving from physiological assessment to

treatment decisions may still be very difficult.

“Laboratory and clinical findings,” according to

the American Association of Critical-Care Nurses

Procedure Manual, “aid [emphasis added] the decisionmaking process” (74).

Other clinical considerations focus on the patient’s prognosis and judgments about whether

or not mechanical ventilation will improve it. Prognostic uncertainty is the nemesis of clinical decisionmaking. Will the patient live or die? Will weaning be possible or will the patient be permanently

ventilator dependent? What will be the quality of

the life saved? For elderly patients, as any others,

clinicians must be able to incorporate their knowledge and experience of previous patients into decisions without making unjustified generalizations

about likely outcomes. Clinicians at the NHLBI

workshop rejected chronological age as an independent predictor of the outcomes of mechanical ventilation and expressed great interest in prognostic tools currently being developed. The need

for better means of predicting the outcome of mechanical ventilation is clearly reflected in the following comment:

We should accept that we really are only slightly

wiser than the apes in regard to the science of

living and dying and that we know very little about

quality of life or the balance between a life of terror or a death of peace. When making an irrevocable decision for someone else, our actions should

be guided by a notion of our fallibility and a surge

of humility. . . . I have witnessed many instances

where nature, in its greater wisdom, has taken

the final step out of my hands and made my puny

efforts at life-support impotent. In other words,

when the end has come, it has come, and often

there is not much for us to decide. The opposite

may occur when, with great solemnity, we switch

off the respirator, and the patient goes on living

and may perhaps do even better than he had previously. . . . (11).

In deciding whether it is appropriate to continue

or discontinue ventilation, caregivers consider

many of the same physiological parameters that

were used to determine the need to initiate ventilation, Clinical evaluation of the appropriateness

of continuing ventilation includes determination

of the patient’s basic condition, acute or chronic

disease; whether the patient’s need is for a breathing aid, for oxygen, or for airway patency;17 and

the likelihood of the patient’s ability to sustain

spontaneous breathing.

Decisions to stop mechanical ventilation may

take one of two dramatically different forms. On

the one hand, there may be a decision to wean

the patient from the equipment he or she has become dependent on, with the goal of restoring

normal spontaneous breathing. Ventilator patients

who are stabilized and able to breathe spontaneously for 10 minutes out of an hour are widely

regarded as ready for weaning. The clinical evaluation of a patient’s readiness for weaning also includes assessment of possible psychological dependency. For patients who are terminally ill,

complete weaning from the ventilator is usually

not feasible, but the possibility of temporary or

partial weaning should still be considered. Since

restoration of ventilator independence is the best

possible outcome for the patient and, since it represents therapeutic success for caregivers, the decision to attempt weaning is relatively unproblematic.

In almost every case where the patient is ventilator dependent, the need eventually arises to determine whether continued ventilation is indicated

or whether further treatment is futile. If the patient is terminally ill, and especially if the patient

is in a permanent noncognitive state or brain dead,

clinicians might recommend that ventilation be

discontinued or withdrawn. In contrast to weaning, a decision to discontinue or withdraw mechanical ventilation signifies the removal of equipment without which the patient is not expected

to survive. In such cases, some physicians advocate what they call “terminal weaning, ” i.e., the

deliberate, gradual withdrawal of ventilation from

a patient for whom further treatment is deemed

17Patients who have been successfully weaned from a ventilator

may be unable to maintain a patent airway. Therefore, removal of

the artificial airway may have to be delayed. Readiness for extubation is indicated by a vigorous cough capable of clearing secretions

from the airway. Also, many patients who no longer require mechanical ventilation cannot be weaned from supplemental oxygen.
Ch. 6—Mechanical Ventilation ● 235

to be futile. Whereas simply “pulling the plug” can

cause abrupt and painful dying, withdrawal of

the ventilator over a period of hours usually permits the inevitable death to proceed peacefully

(46).

Many of the physicians, nurses, and respiratory

therapists at the NHLBI workshop expressed

strong opinions that despite lawyers’ and ethicists’

claims to the contrary, (90) at-the-bedside decisions

to withdraw mechanical ventilation are entirely

different from decisions to withhold it. For professional caregivers, the decision to withdraw a ventilator is an admission of failure or an admission

that the initial decision to ventilate was wrong (80).

Moreover, while patients sometimes participate

in decisions to withhold treatment, the decision

to withdraw a ventilator is almost always made

by people other than the patient. All parties, i.e.,

family members, and the numerous caregivers

who have become involved with the patient, must

be prepared for this event. Workshop participants

indicated that withdrawal of ventilators occurs

much more frequently now than it did 5 years

ago (some of this increase results from more frequent initiation) and that families are now more

involved in the decision to stop treatment.

Ethical Considerations

The prolonged use of mechanical ventilation

with patients of any age raises important ethical

issues. These issues have to do primarily with how

decisions should be made to initiate, withdraw,

or withhold mechanical ventilation for a specific

patient, with the balance of benefits and burdens

this treatment brings, and with the distribution

of technological resources. In the words of one

leading pulmonologist:

. . . all who are seriously involved in respiratory

care or intensive care in general recognize that

a great deal of harm and suffering can be caused

by the inappropriate or irresponsible use of mechanical ventilators in hopeless situations (84).

Some of the ethical quandaries involved in defining what constitutes “harm,” “suffering,” or a

“hopeless” situation, and what is “appropriate” and

“responsible” use of this technology are illustrated

by the case of the 79-year-old widow outlined here

(and detailed in ch. 4).

After short-term treatment with mechanical

ventilation for her congestive heart failure and

COPD, the patient said she “absolutely refused”

to be intubated ever again. Upon subsequent reAdmission the hospital, she initially repeated

this wish, but said she would accept basic CPR

is shesuffered cardiac arrest. Over a hospital stay

of approximately 40 days, her condition worsened; her lucidity, and her conviction about what

treament she wanted wavered. When she was

eventually reintubated, she made it clear that she

wanted mechanical ventilation and maximal care.

However, in a few days she had lapsed into a coma,

and her physicians judged that her condition was

irrversible. With the concurrence of her son, a

DNR order was written, and she was allowed to

die (65).

The ethical principles that are features of the

decisions taken in this case are: respect for the

patient as a person, yielding to the patient’s autonomous wishes, being of benefit to the patient,

and avoiding harm through the extension of suffering. This case also illustrates some of the moral

and practical difficulties in respecting patients’

wishes. By her wish to receive basic CPR but not

to be intubated, the patient put her caregivers in

a position that some people find illogical, i.e., to

restore her circulation but not support her breathing. This indicates some of the difficulties in drawing lines between treatments that are part of a

logical continuum, for example, between a full

resuscitation code and a limited code (see ch. 5),

or between mechanical ventilation and other lifesustaining treatments (23). The significant changes

in this patient’s medical condition, in her wishes

regarding treatment, and in her ability to express

those wishes illustrate how, even if physicians are

determined to carry out the patient’s wishes, it

is not always possible for them to do so.

A case in which the patient family demanded

maximum care provides an interesting contrast.

A 75-year-old married man was admitted to the

a university hospital in acut e

and gasping for help. A retired laborer, Mr. Watkins had been suffering from a chronic pulmonary disease for the past 15 years. For the past

5 years he had become progressively debilitated.
236 s Life-Sustaining Technologies and the Elderly

The possibility of permanent ventilator dependence and the patient’s view of this must be included in any comparisons of harms versus benefits in the decision to initiate ventilation in the

first place. In the view of Mr. Watkins, dependence

on a ventilator 24 hours per day had an overwhelming impact on his quality of life. He concluded that his quality of life on the ventilator was

so unsatisfactory that death would be preferable.

(The constancy of treatment also seems to put mechanical ventilation in a class by itself from the

standpoint of caregivers and other observers.

“Physicians seem to find it easier,” for example,

“to decide not to continue hemodialysis” (47).)

Mr. Watkin’s expressed wish “to die” could be

interpreted either as suicidal or the more neutral

wish to avoid mechanical ventilation. The former

interpretation raises additional ethical questions

which are of both philosophical and practical concern. Does, for example, the use of a life-sustaining

technology sometimes actually facilitate suicide?

If caregivers accede to a patient’s wish to withdraw treatment, are they assisting suicide? (see

ch. 4). Some observers have noted that before caregivers accede to a patient’s request to disconnect

a ventilator, they must determine whether this

request results from conditions that are reversible, such as temporary depression, fear based on

misperceptions or misinformation, or underlying

problems between the family and patient.

The above case also highlights questions about

the role of family members and the proper weight

of their wishes. When, as in this case, the patient

is alert and able to participate in treatment decisions, there is wide agreement that the family’s

wishes should always be secondary to the patient’s. The family, after all, is not the physician’s

patient; nor in a case like this is a family member

the patient’s proxy (96).

The physician must remember that he has only

one client—the patient. He is the advocate of the

patient—not the family, nor the welfare agency,

nor the kindly clergyman, squeamish at the sight

of tracheotomy (32).

Finally, there is an important ethical issue related to when obligations to patients end. The initiation of mechanical ventilation for acute care

often creates many long-term needs (e.g., for continuing professional services, reimbursement, social support). Indeed, mechanical ventilation itself

(and not merely the disease or condition originally

leading to its use) maybe the cause of a person’s

loss of spontaneous breathing. Prolonged use of

mechanical ventilation can irreversibly suppress

spontaneous breathing in some cases in which it

might have resumed. Patients and professionals

closely involved with this technology suggest there

is a need to reconsider how the boundaries of this

treatment have been defined (21). Do obligations

to a patient end with discharge from an ICU or

hospital, or do obligations stand as long as the

patient is ventilator dependent? If the latter, reimbursement policies and inadequate community resources that commit some medically stable venti-
Ch. 6—Mechanical Ventilation ● 237

lator-dependent patients to ICUs and

poverty are in clear need of revision.

Legal Considerations

some to court actions (see ch. 3 and OTA background paper on court decisions and legislative approaches,

by G.J. Annas and L.H. Glantz (6)) but also by patients’ and caregivers’ perceptions and misperceptions of these (see OTA background paper on legal perceptions and medical decisionmaking, by

Mechanical ventilation, as an arbiter of life and M.B. Kapp and B. Lo (56)). Of the life-sustaining

death, raises legal questions concerning suicide, technologies that OTA studied, mechanical ventiassisted suicide, homicide, and medical malprac- lation was the first to draw legal attention. Some

tice. Decisions regarding the use of this technol- of the recent court cases involving this technology are greatly influenced not only by laws and ogy are summarized in box 6-B.
238 • Life-Sustaining Technologies and the Elderly

Informed Consent

A patient’s legal right to make decisions about

his or her health care is well established. Under

the doctrine of informed consent, patients have

the right to acceptor to refuse treatment, as well

as the right to request that treatment be withdrawn. Moreover, there are available legal provisions to specify treatment preferences in advance

(see ch. 3). Highly publicized court cases have consistently upheld the right of decisionally capable

patients to have mechanical ventilation withdrawn,

However, in practice, patient’s choices regarding mechanical ventilation are not always known,

knowable, or carried out. Exercising the right to

direct one’s own care requires a patient who is

mentally competent, alert, and informed. In the

case of respiratory insufficiency or failure, these

conditions frequently do not obtain. Disease, medications, pain, and the urgency of the situation may

render the patient incapable of participating in

treatment decisions.

Informed consent for instituting mechanical

ventilation is, at best, difficult to obtain. Participants at the NHLBI workshop emphasized the importance of ascertaining the patient’s preferences

early and documenting them in the medical record. (They also emphasized the difficulty for both

physicians and patients in discussing these sensitive subjects.) Even if time, the patient condition,

and the relationship between the patient and physician permit careful discussion, it maybe impossible to fully inform a patient about mechanical

ventilation. In fact, some physicians believe that

no one can recognize the impact of being on a

ventilator in advance (67). In a life-threatening

emergency, consent is often “implied. ” When consent is explicitly obtained, it is most often verbal.

Often, a patient silence is interpreted as consent.

If the patient is not decisionally capable, a surrogate decisionmaker or legal guardian, or a court

order regarding treatment may be sought. (These

mechanisms are reviewed in ch. 3 and analyzed

in detail in a background paper to this report (16)).

Other legal problems arise from the variation State

to State, institution to institution, and physician

to physician in how directives by patients or their

surrogates are handled.

Because some caregivers are willing to override

the patient’s wish and because practice and theory are not the same, one respiratory therapist

reported:

Elderly patients are often not active participants

and . . . their preference is not an issue in the decision. Many patients are (or are perceived to be)

unable to understand, poor communicators or

historians, not “responsible” or capable of making decisions, and difficult to deal with. There is

usually more involvement by the patient when

the care is more long-term. . . . The goals of longterm ventilator management could never be accomplished in a patient who is not desirous of this

form of therapy (21).

Advance Directives

By means of a formal advance directive—a living will or durable power of attorney for health

care-or informal means, a patient attempts to

ensure his or her participation in decisions regarding life-sustaining treatment in general or mechanical ventilation in particular. In some instances,

advance directives specify particular treatments

an individual does or does not wish ever to receive. A patient may, for example, indicate that

he or she does want to receive nutritional support, but not mechanical ventilation.

In practice, caregivers do not always comply

with a patient’s advance directive to withhold lifesustaining treatment. Often there is simply no

mechanism or time for discovering that a directive exists or to produce it. In an emergency, or

with a decisionally incapable patient, even if the

patient has an advance directive, it is unlikely the

physician on the scene will know of it. Another

reason caregivers sometimes do not comply with

a patient’s advance directive is that they feel that

the directive is not sufficiently clear or that it does

not serve the patient’s best interest, Some people

are skeptical about patients’ ability in general to

specify treatment preferences in advance. And,

some are particularly skeptical about directives

made prior to the—terrifying-experience of severe breathing difficulty. According to one physician, “patients who think they don’t want to be

ventilated change their mind when they are choking to death” (22).
Ch. 6—Mechanical Ventilation ● 239

Fear of the Law

The fear of legal liability remains a major issue

for caregivers —especially when a patient is not

decisionally capable, when the patient’s wishes

are not known, and when there is disagreement

among the patient and family, caregivers, or between caregivers and their employing institution

about what to do. Differences in State laws and

precedents add to the confusion.

The fear of being sued for malpractice may at

once encourage physicians to use all available lifesustaining technologies and discourage them from

taking any action that is contrary to the patient’s

wishes. In practice, these two objectives may conflict, thus adding to caregivers’ uncertainty about

legally correct action. There has been no successful suit against any physician who followed the

wishes of the patient, but there has been at least

one case (Barber v. Superior Court of Los Angeles

(10)) in which physicians were accused of criminal intent and murder despite carrying out the

family’s wishes. Physicians and other health

professionals are acutely aware of the possibility

of malpractice claims and fearful of what appear

to be uncertain and shifting legal boundaries (56).

(Malpractice and other legal questions are more

fully discussed in ch. 3.)

professional and Institutional

Guidelines

Standards and guidelines developed and promulgated by professional associations and institutions

are other important factors in decisions about the

use of life-sustaining technologies in general and

mechanical ventilation in particular. They help to

guide treatment decisions as well as procedures

for making those decisions. Although these do not

have the force of law, and their intent is usually

to solve clinical and ethical dilemmas more than

legal ones, they may be used in legal proceedings

to determine whether or not acceptable care was

provided. They may address a variety of issues,

including who should make the treatment decision, where or by whom care should be provided,

and when it should not be.

Standards of care (or standards of practice), as

established formally or informally by professional

associations provide some, limited, guidance in

decisions about mechanical ventilation. Although

voluntary professional standards serve primarily to assure quality of care (and to protect professional interests), over time, they become the expected norm. In legal proceedings, particularly

malpractice cases, health professionals and institutions may be held accountable to the standards

of care in their community. Knowing this, health

professionals have a keen interest in observing

these voluntary guidelines,

One example of professional standards relevant

to mechanical ventilation is the “Guidelines for

Management in the Home and at Alternate Community Sites,” published in 1986 by the American

College of Chest Physicians (82). These guidelines

identify factors that should be considered in the

selection of ventilator-dependent patients for care

at home or in other community settings. Another

example is the standards of care for providing mechanical ventilation in nursing homes, developed

jointly by the American Association for Respiratory Care and the American Health Care Association (1). Among other things, these standards address staffing, quality assurance, infection control,

safety, and continuing education.

Such policies and standards may assist in legal

proceedings or they may, at times, be the focus

of the legal debate. For example, the point of contention in the 1986 case of Tune v. Walter Reed

Army Medical Hospital was a policy of the Department of the Army precluding the withdrawal from

any patient in an Army medical facility of lifesupport systems that have been put in place.

Many institutions now have policies that specify

categories of patients who should not be resuscitated. DNR policies (see ch. 5), although usually

meant to address only the question of resuscitation, may directly or indirectly resolve or preclude

questions about the use of mechanical ventilation.

The DNR policy of the Veterans Administration

(VA), for example, explicitly states, “a DNR order

is compatible with maximal therapeutic efforts

short of resuscitation” (122). Patients for whom

a DNR order has been written might still receive

nutritional support, antibiotics, or mechanical ventilation that had been started; subsequently, however, withholding of resuscitation almost always

precludes initiation of mechanical ventilation. In

addition, some institutions have “disaggregated
240 ● Life-Sustaining Technologies and the Elderly

DNR policies,” i.e., policies that distinguish Do Not

Resuscitate from “Do Not Intubate” (DNI) (e.g., (76)).

Patients coded DNI might be resuscitated but not

receive mechanical ventilation. Disaggregation of

the DNR order is thought by some observers to

reduce uncertainty or the possibility that the directive will seem unclear. However, others argue that

specifying what treatments should or should not

be provided raises new questions about potential

treatments that remain unspecified.

In addition to addressing substantive issues,

standards of care and institutional policies may

address decisionmaking procedures-e.g., documentation in patients’ charts, the role of surrogates, ethics committees, etc. In 1976, for example,

the Joint Commission for the Accreditation of Hospitals published standards for hospital respiratory

therapy departments. These standards require

that a physician’s order for services indicate the

criteria for continuing or ending each therapeutic procedure prescribed. Another example is the

VA’s requirement of written consent for a tracheotomy (123).

The level of activity surrounding the development of standards and guidelines suggests an

awareness within the professions associated with

mechanical ventilation that guidance is needed to

improve treatment decisions and decisionmaking

procedures. It also suggests that professionals are

interested in developing these guidelines themselves.

FINDINGS AND IMPLICATIONS

A large proportion of patients who become candidates for mechanical ventilation–and a large

proportion of patients whose need for ventilation

becomes prolonged—are elderly. Some elderly individuals, although permanently ventilator dependent, manage an active life and maintain a strong

will to live. Senator Jacob Javits was an example.

Other individuals are severely debilitated and severely brain damaged with no prospect of recovery or rehabilitation. Clinical studies consistently

show that mortality, which is high for mechanically ventilated patients in general, is highest for

elderly patients. Advanced age alone, however,

is an inadequate predictor of the outcomes of mechanical ventilation.

Survival, functional capacity, and an individual’s

ability to cope with prolonged ventilator dependence are often difficult to predict at the time the

decision to initiate mechanical ventilation is made.

Many physicians and other health professionals

involved in mechanical ventilation believe that this

technology is frequently used when it should not

be. The lack of definitive prognostic measures for

patients with respiratory failure subjects some patients to needless suffering and precludes efficient

use of health care resources. Research is needed

to reduce prognostic uncertainties and to support

improved decisionmaking. There has been practically no research focused on the clinical and behavioral aspects of mechanical ventilation with

elderly patients.

In patients with chronic or progressive diseases

affecting respiration, eventual respiratory failure

can be anticipated. When a patient is in acute respiratory failure or unconscious, he or she cannot

give informed consent to mechanical ventilation.

This observation suggests the special importance

of early and frank conversations between physicians and patients and between family members

and patients regarding the potential need for

mechanical ventilation, and the importance of

advance directives that are clear and welldocumented.

The decision to initiate mechanical ventilation

is frequently only one of several very difficult decisions regarding this technology. As the patient’s

condition and circumstances change, choices must

be made about other medical treatments, and the

benefits of continuing ventilation must be reevaluated.

Despite ethical and legal pronouncements to the

contrary, caregivers involved in providing mechanical ventilation argue that, at the patient’s bedside, the difference between withholding and

withdrawing this life-sustaining treatment is vast.

Needless suffering and expense could be reduced

if there were provisions to make withdrawal of
Ch. 6—Mechanical Ventilation Ž 241

ventilation less difficult when the treatment has

proved to be futile or no longer wanted by the

patient.

Mechanical ventilation is an extraordinarily expensive treatment, with a large share of the cost

borne by Medicare and Medicaid. For hospitals,

the cost of treating patients who require this technology sometimes far exceeds Medicare’s current

DRG-based payments. Thus, hospitals have financial incentives not to treat some seriously ill Medicare patients. In most States, however, limited

Medicaid payments for ventilator-dependent patients favor the use of acute care hospitals over

other treatment settings.

Interest in providing ventilator care for patients

in their own homes and in skilled nursing facilities is strong, To date, however, few elderly ventilator patients have been discharged home, and

few nursing homes are able to admit ventilator

patients. Some observers warn that extension of

Medicare and Medicaid coverage for home care

of ventilator-dependent patients would stimulate

an explosion of utilization and cost. Those who

dismiss this warning argue that no change in reimbursement will change the medical indications for

long-term ventilation, and that more liberal reimbursement for home ventilation would permit

more efficient use of resources.

There is significant potential for prevention of

the need for mechanical ventilation. The Surgeon

General reports that COPD, the single greatest

cause of respiratory failure, would almost disappear if Americans quit smoking. Moreover, the

benefits of stopping smoking are significant,

regardless of the individual’s age and years of

smoking.

Ventilator-dependent persons have ongoing

needs for resources and services. These needs may

be unforeseen or unavailable. In addition to medical care and equipment-related resources, many

patients and families need facilities and services

to help them cope with the social, emotional, and

financial costs of ventilator dependence.

While the burden as well as the promise of mechanical ventilation for individual patients, family members, and caregivers are identifiable, it remains very difficult to assess the magnitude or

urgency of societal problems associated with this

technology. Data on utilization and cost are very

inadequate, and there is no consensus on what

constitutes appropriate usage or public expenditure.

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Chapter 7

Dialysis for

Chronic Renal Failure
CONTENTS

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ....249

Description of Dialysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..................250

Renal Failure: The Need for Treatment . . . . . . . . . . . . . . . . . . . . . . . . .........250

Dialysis procedures. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..................251

Treatment Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...................255

Choice of SRD Treatment Modality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...255

Utilization and Cost of Dialysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......256

Utilization of Dialysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...256

Cost of Medicare’s ESRD Program . . . . . . . . . . . . . . . . . . . . . . . . . . ...........257

Outcomes of Dialysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...................259

Clinical Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...259

Psychosocial Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . ......................261

Making Decisions About Dialysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......262

Decisions About Initiating Dialysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......264

Decisions About Stopping Dialysis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......264

Decisionmaking procedures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..266

Ethical ssues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......266

Legal Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......................268

Findings and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........ .. ....268

Chapter p references. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...............269

Boxes

Box Page

7-A. Treatment for ESRD in the United Kingdom. . . . . . . . . . . . . . . . . . . . . . .. ...263

7-B. The Earle Spring Case .

Figure No.

7-1. Hemodialysis . . . . . . . . .

7-2. Arteriovenous Fistula in

7-3. Continuous Ambulatory

Table No.

7-1. Functions of the Kidney

Chronic Renal Failure . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 267

Figures

Page

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253

the Arm of a Hemodialysis Patient . .............253

Peritoneal Dialysis . ...........................25 4

Tables

Page

and Their Alteration in

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

7-2. Medicare ESRD Program Enrollment by Age, 1978-84 . . . . . . . . . . . . . . . ....256

7-3. ESRD Population by Type and Place of Dialysis, 1980-85 . ...............257

7-4, Medicare Reimbursements by Enrollees and Per Capita Reimbursements

for People With ESRD, 1974-84 . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..........258

7-5. Medicare ESRD Dialysis Patient Survival by Age and Cause

of Renal Failure, 1980-84 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..............259
Chapter 7

Dialysis for Chronic Renal Failure1

INTRODUCTION

Individuals with end-stage renal disease (ESRD)

would die within a few weeks or months if not

sustained by some form of dialysis therapy or a

kidney transplant. Nearly 91,000 Americans currently receive some form of dialysis (43). As recently as the 1960s, the scarcity and high cost of

resources made treatment of chronic renal failure largely unavailable and inaccessible. Treatment was limited to the affluent and the handpicked. So-called ‘(God committees” composed of

health professionals and community leaders selected patients on the basis of criteria that included

age, race, sex, family responsibilities, employment

and financial status, and “social worth. ” Patients

younger than 15 or older than 45 were routinely

disqualified for treatment.

The Federal Government’s commitment in 1972

to cover the catastrophic cost of treatment for

ESRD through Medicare was a pivotal event that

has remained a touchstone in subsequent debates

about providing expensive medical care for specific groups of patients. Medicare’s ESRD program,

enacted into law (Public Law 92-603, Sec. 2991)

in 1972 and initiated in 1973, is the only Federal

program that provides almost complete coverage

for a catastrophic illness (5). It is at once a forceful reminder of the problems that may exist without Federal intervention and of the problems that

may arise as a result of intervention.

Largely as a result of the ESRD program, dialysis and renal transplantation are now available

to virtually all Americans in need, without regard

to age, social status, or ability to pay. Following

the program’s implementation, there occurred

rapid expansion of treatment facilities and personnel and significant advances in dialysis and

transplantation technologies (25). Not surprisingly,

the number of patients being treated for ESRD

1OTA acknowledges the important contribution in the preparation of this chapter of Nancy B. Cummings, M. D., Associate Director for Research and Assessment, National Institute of Diabetes, Digestive and Kidney Diseases.

increased dramatically. Today, the old problem

of access to ESRD treatment has been replaced

by one of tremendous public cost. The current

cost of providing benefits to ESRD Medicare beneficiaries is about $2.1 billion per year and growing (41).

People over age 65 are now the fastest growing

segment of the dialysis population served by Medicare’s ESRD program, with an average annual

growth rate of 15 percent in recent years (40).

In 1974, people over 65 who were eligible for ESRD

benefits by virture of Medicare enrollment made

up less than 5 percent of the average annual enrollment (5); by 1979, patients over 65 accounted

for over 20 percent and by 1984, patients over

65 accounted for over 25 percent of Medicare’s

ESRD program enrollees (40).

The unanticipated growth in ESRD program expenditures and the shifting demographic composition of the dialysis population have heightened

concerns among some people that dialysis is being overused, that is, public resources are being

misallocated, and/or dialysis treatment is being

wasted on some patients for whom the benefits

are questionable. The U.S. experience with dialysis is frequently cited by those who wish to warn

against excessive growth in other disease-specific

benefit programs or overuse of other life-sustaining technologies.

Because dialysis is usually life-sustaining, available, and currently reimbursed through Medicare’s ESRD program, the dilemmas about

whether to use dialysis in individual patients often

center around the impact treatment would have

on the patient’s quality of life. Chronic dialysis imposes a strict regimen that demands time, limits

travel, and imposes strict dietary requirements.

Complications and frequent periods of illness and

hospitalization are common. Still, most patients

who accept chronic dialysis adjust successfully

and are able to carry on their family and work

249
250 ● Life-Sustaining Technologies and the Elderly

roles. Some dialysis patients have survived for

more than 20 years.

Only limited information is available about how

elderly patients adjust to chronic dialysis. However, the greater likelihood that elderly people will

have comorbidities or reduced social responsibilities, compared with younger people, suggests that

there may be important age-related differences

in elderly patients’ physiological and psychosocial

responses to chronic dialysis. One study found

that older patients generally reported a high degree of life satisfaction while undergoing chronic

dialysis (49). Another study found, however, that

withdrawal from dialysis was the most common

cause of death in elderly dialysis patients, accounting for 40 percent of all deaths (compared with

22 percent for all ages) (16). The high rate of discontinuance may occur because the factors that

trigger the decision, such as multiple underlying

diseases, are more common and occur earlier in

older dialysis patients than in younger ones (16).

While problems of access to ESRD treatment

and personal financial hardship have been addressed to a very great extent through Medicare’s

ESRD program, fundamental problems related to

decisionmaking for individual patients and related

concerns remain. This chapter examines ESRD in

the elderly population, the use, cost, and efficacy

of various types of dialysis, the patients’ experience, and how treatment decisions are made. It

also discusses patient selection criteria and the

influence of reimbursement on treatment patterns

and quality of care for elderly patients.

DESCRIPTION OF DIALYSIS

Renal Failure: The Need for Treatment

Healthy kidneys regulate the body’s internal

environment of water and salts and excrete the

end products of the body’s metabolic activities and

excess water (as urine). They also produce and

release into the bloodstream hormones that regulate vital functions including blood pressure, red

blood cell production, and calcium and phosphorus metabolism.

Impaired renal function, depending on its cause

and severity, may affect any or all of these processes (see table 7-l). Impaired renal function may

be due to problems in the kidney or to disease

in other organs. It may be caused by pathological

problems or normal, age-related processes.’ It

may be acute or chronic and either minor or lifethreatening. All these distinctions are important

‘Normal aging, in the absence of disease, is associated with a

progressive loss of renal function beginning early in adulthood. On

average, adults lose 7 to 8 percent of renal function per decade,

but the individual variability in age-associated loss of renal function

is very great. Some people lose as much as 60 to 70 percent between

the ages of 30 and 80, and others experience little or no age-associated

loss of renal function. Even when extreme, the normal changes in

kidney function associated with aging do not significantly interfere

with the normal volume and composition of body fluids or normal

levels of waste products. Normal, age-related changes in renal function are significant, in general, because elderly individuals have lower

reserve and are at heightened risk for developing renal failure as

a result of disease or injury.

determinants of prognosis and appropriate

treatment.

When a person’s loss of renal function is so severe as to be incompatible with life, the patient

is said to be in renal failure. Renal failure may

be either acute or chronic.

Acute renal failure is the sudden, potentially reversible loss of renal function. It may be caused

by any of several hundred diseases, by drugs that

are toxic to the kidneys, surgery, trauma, reduction or cessation of blood flow (i.e., ischemia) to

the kidneys, or by obstruction of urine flow (13,

22). Many patients in acute renal failure regain

natural function of the kidney after temporary

support by dialysis. Others die from the underlying disorder that caused the kidney to fail. In

some patients, acute renal failure is the precursor to chronic renal failure.

Chronic renal failure is irreversible, often

progressive loss of kidney function. It can be

caused by any of a large number of known and

unknown factors, including immunological, congenital, or infectious diseases, or trauma to the

kidneys. By far the most common cause of chronic

renal failure among elderly dialysis patients in

Medicare’s ESRD program is hypertension (with

heart and renal diseases). other less common
Ch. 7—Dialysis for Chronic Renal Failure • 251

Table 7-1.— Functions of the Kidney and Their Alteration in Chronic Renal Failure

Function Change in chronic renal failure

Excretion of water . . . . . . . . . . . . . . . . . . . . . . . . Well-preserved in early chronic renal failure, progressively reduced in late chronic

renal failure.

Excretion of water-soluble compounds . . . . . . Varies with the compound; in general, progressively reduced as chronic renal

failure progresses.

Production of erythropoietin (stimulates red

blood cell formation). . . . . . . . . . . . . . . . . . . . Progressively reduced but not usually to zero; moderate to severe anemia.

Production of 1.25- and 24.25-hydroxycholecalciferol, the active forms of vitamin D . . . Reduced in moderate to severe chronic renal failure—reduced blood calcium

and tendency to bone disease.

Production of renin —hormone which helps

to maintain blood pressure and conserve

sodium. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Often increased—contributes to high blood pressure of chronic kidney disease;

removal of both kidneys (to cure this) may cause low blood pressure,

Production of prostaglandins and intrarenal

hormones . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Uncertain what part changes in secretion of such hormones play in producing

the symptoms of acute and chronic renal failure.

SOURCE, D N S. Kerr, “Renal Dlalvsis: Techniques and Cllnical Applications,” The Oxford Companion to Medic/ne, J. Walton, P.B. Beeson, and R.B. Scott feds ) (Oxford,

England: Oxford University Press, c 1986)

causes of chronic renal failure in elderly people

are glomerulonephritis, diabetic nephropathy,

polycystic kidney disease, and pyelonephritis (1).

As defined in Medicare regulations, ESRD is the

“stage of chronic renal impairment that appears

irreversible and permanent, and requires a regular course of dialysis or kidney transplantation

to maintain life” (4). ESRD, with an accompanying syndrome called uremia (i.e., the symptomatic

phase of renal failure), affects almost every system of the body, including the cardiovascular, respiratory, endocrine, central and peripheral nervous systems, the gastrointestinal tract, blood cells,

skin, and bones. The symptoms often are so general that a diagnosis of kidney disease may not

be clear. People experience an overall sense of feeling poorly, and they may have difficulty pinpointing the source of their malaise. The scientific

understanding of all the ramifications of disorders

of the kidneys is limited.

Disordered kidney function may be detected by

simple laboratory tests such as urinalysis, measurement of blood chemistries (urea, creatinine,

electrolytes, calcium, and phosphorus), and by determining the kidney’s ability to clear standard

substances from the blood.

Dialysis Procedures

ESRD can be managed by renal dialysis or

reversed by a successful kidney transplant from

a living or cadaveric donor (23). In special cases,

other newer technologies such as hemoperfusion,

hemofiltration, hemodiafiltration, and plasmapheresis may be used (1) (also see app. C, “Future Developments in Life-Sustaining Technologies”).

For some patients, kidney transplantation is the

preferred treatment. A successful kidney transplant can restore a patient to good health and a

nearly normal lifestyle. The best results are obtained when the organ donor is a living, related

donor, although good success is also achieved with

cadaver kidneys.

Unfortunately, while transplantation is an attractive solution in principle, there are many

difficulties in its implementation, especially the

severe shortage of appropriately matched donor

Photo credit Edmund G Lowrie, National Medical Care, Inc

This 83-year-old woman has been on dialysis

for 5 years.
252 Ž Life-Sustaining Technologies and the Elderly

kidneys (25). In addition, life-long immunosuppressive therapy, necessary to prevent rejection of the

donor organ, has many deleterious effects. Because of these and other problems, kidney transplantation is not at present a realistic option for

most ESRD patients. In 1985, only 9 percent of

all ESRD patients received a transplant (42).

Kidney transplants are seldom performed in

elderly people. In 1985, only 56 (1 percent) of the

6,938 kidney transplants performed in the United

States were performed in patients aged 65 to 74

years, and only 3 were performed in patients 75

years and older (46). This apparent age-based rationing of kidney transplantation is usually explained on medical grounds. In particular, persons

with vascular diseases (e.g., arteriosclerosis) are

considered poor candidates for transplant surgery,

and vascular diseases are common among elderly

persons (13). Another medical factor that weighs

against performing kidney transplants in some

elderly persons is that they have multiple illnesses,

which increase the risk of serious complications.

Another serious problem is that age-related and

other decreases in immune function heighten the

risk of infection, especially with the administration of immunosuppressive agents that must be

used to prevent rejection of the transplanted

kidney.

How many elderly people might benefit from

kidney transplantation if more donor kidneys

were available is not known. At present, however,

renal dialysis is the only widely used ESRD treatment for elderly persons. Therefore, renal dialysis is the focus of this chapter.

The term dialysis refers to any process in which

the components of a liquid or solution are separated on the basis of the selective movement of

different kinds of molecules through a semipermeable membrane. In the case of renal dialysis, impurities are separated from the blood and passed

into a special fluid called the “dialysate” (or dialysis fluid) through a natural or artificial membrane.

The movement of molecules through the membrane is caused by differences in concentrations

of salts and toxic waste products in the blood and

in the dialysate. Contact between the blood and

dialysate is repeated many times, and the transfer continues until the two solutions have identical concentrations of the affected substances.

Other components of the blood, like proteins and

cells, cannot pass through the membrane and are

retained in the blood.

The effectiveness of dialysis depends on both

its duration and efficiency. The dialysis fluid,

which is made up of the physiologically normal

electrolytes found in blood plasma, is selected

according to the approximate eventual composition desired in the plasma. When dialysis proceeds

too rapidly, it may cause symptoms such as painful cramps or problems with blood volume. Because the specific treatment is determined based

on experimentation, rather than theoretical knowledge, dialysis is said to be an “empirical” therapy.

Dialysis offers an effective artificial mechanism

for performing kidney functions. Two main types

of dialysis are available: 1) hemodialysis, and 2)

peritoneal dialysis (including several variants of

the latter).

Hemodialysi s

Hemodialysis is the oldest, most prevalent method of dialysis, and it is used today by the vast

majority of ESRD patients in this country. It is the

standard against which newer methods are judged,

The first hemodialysis machine was developed in

the Netherlands by Wilhelm Kolff during World

War II, This “artificial kidney” and modifications

of it permitted the first successful attempts to sustain patients with acute renal failure (l). Not until

the 1960s, however, were there hemodialysis procedures to allow long-term maintenance dialysis

of patients with chronic renal failure (l).

The process of hemodialysis involves pumping

blood out of a patient’s body into a dialyzer where

impurities are removed, then returning the blood

to the patient’s body (see figure 7-1). For most

ESRD patients using hemodialysis, treatments are

carried out three times weekly for a duration of

3 to 5 hours each time. Some patients require more

frequent hemodialysis, while some patients with

significant residual kidney function can manage

on fewer treatments per week. Hemodialysis may

be conducted in a hospital, freestanding dialysis

center, or in the patient’s home.

Originally, hemodialysis required a new arterial

and venous cut-down to obtain access to the patient’s bloodstream for each dialysis treatment.
Ch. 7—Dialysis for Chronic Renal Failure . 253

Figure 7-1.- Hemodialysis

— \

from proportioning system patient

Blood is taken from the arterial tube and pumped through

the hollow-fiber disposable dialyzer before returning through

an air trap to the patient. Dialysis fluid flows in the opposite

direction from a proportionating system, which makes it from

water and concentrate. A number of safety devices (not

shown) monitor the temperature, flow, and pressure of the

dialysis fluid and the presence of air bubbles in the blood

stream.

SOURCE: D N.S. Kerr, “Renal Dialysis: Techniques and Clinical Applications, ”

The Oxford Companion to Medicine, J. Walton, P.B. Beeson, and R.B.

Scott (eds,) (Oxford, England: Oxford University Press, @ 1988).

The use of maintenance hemodialysis for patients

with chronic renal failure was not possible until

a Teflon arteriovenous shunt was developed by

Scribner and his coworkers at the University of

Washington in the early 1960s (l). Today, the

standard blood access system for hemodialysis involves a surgically created connection between

an artery and vein known as an arteriovenous

fistula (see figure 7-2). Access to the fistula, which

is usually in the forearm, is obtained by needle

puncture. Developed in 1966, the arteriovenous

fistula resolved problems that plagued patients

with the arteriovenous shunt (i.e., clotting and infection) and offers a more permanent solution.

Subsequent developments and refinements in the

fistula have resulted in shorter dialysis time, increased safety, greater comfort, and economy. For

patients whose veins do not permit the creation

of a fistula, a variety of grafts are now possible;

however, the “native” arteriovenous fistula is conFigure 7-2.—Arteriovenous Fistula in the Arm of

a Hemodialysis Patient

Arterial blood flows through the surgically created fistula into

a superficial vein into which needles are inserted in the approximate direction of the arrow, identifying the cephalic vein.

SOURCE: D.N.S, Kerr, “Renal Dialysis: Techniques and Clinical Applications,”

The Oxford Comparrlon to Medicine, J. Walton, P B. Beeson, and R.B.

Scott (eds.) (Oxford, England: Oxford University Press, ? 19S6)

sidered “the gold standard of blood access” (1).

Consequently, one of the most important measures in the management of patients with chronic

renal failure before they require dialysis is to preserve the forearm vessels so these can be used

to develop a fistula when required (32).

Dialyzers consist of three parts: a compartment

for the blood, a compartment for the dialysate,

and a semipermeable membrane separating the

two (30). The three principal types of dialyzers—

hollow fiber, coil, and parallel plate-differ essentially in how these basic parts are arranged (30).

All three types are described by manufacturers

as “single-use disposable, ” but in fact are often

reused (30). This practice of reprocessing and reuse, possible since the 1960s, has become widespread, but it remains controversial.3

Dialysate is usually prepared by diluting a commercially available concentrate with treated tap

water. The specific composition of the dialysate

reflects the needs of the individual patient and

the choice of the physician.

3

In the late 1970s, there was a strong patient movement against

dialyzer reuse in the United States, and the Senate Special Committee on Aging held hearings on the subject and produced a staff report on the subject (38). The effect of Federal policies on the practice of dialyzer reuse was reviewed in an OTA case study (30~. Reuse

is now very widely practiced worldwide (l). Under the 1987 budget

reconciliation, the U.S, Department of Health and Human Services

must establish, by Oct. 1, 1987, standards and conditions for safe

and effective reuse and reprocessing of dialyzers (37).
254 ● Life-Sustaining Technologies and the Elderly

Peritoneal Dialysis

The second major form of renal dialysis is peritoneal dialysis. First applied successfully in the

treatment of acute renal failure in the late 1940s,

peritoneal dialysis is a relatively simple technique

whose use has increased for both chronic and

acute care since the mid-1960s (l).

Peritoneal dialysis uses the patient’s peritoneum

(the semipermeable membrane surrounding the

abdominal organs and lining of the abdominal

cavity) to perform dialysis inside the patient’s

body. The standard blood access device is a permanent indwelling catheter with a long subcutaneous tract placed in the patient’s abdomen.

Sterile, warmed dialysis fluid is infused via the

catheter into the patient’s peritoneal cavity, allowed to remain there the prescribed length of

time, then drained out along with the dissolved

waste products, discarded, and replaced with

fresh fluid. This cyclical process is continued for

the appropriate number of instillations and

removals. Solute removal occurs by diffusion

from the blood in the peritoneal capillaries to the

dialyzing solution. Solute removal depends on factors such as the dialysate flow rate, temperature,

and pH. Fluid removal is by osmosis (l). Although

peritoneal dialysis is much slower than hemodialysis, the same degree of correction occurs provided that longer peritoneal treatments are used.

Depending on the locale and timing of the procedure, chronic peritoneal dialysis may be intermittent (IPD); continuous cycling (CCPD); or continuous ambulatory (CAPD). Continuous peritoneal

dialysis methods are typically used in the patient’s

home, while intermittent peritoneal dialysis is usually performed in a center or hospital.

Intermittent peritoneal dialysis involves the use

of a machine to deliver sterile dialysate to the patient’s peritoneal cavity and, after the prescribed

dwell time, to remove the spent dialysate. The

equipment is based on either a cycler that operates by gravity, a pump, or, in older equipment,

a reverse osmosis process. Intermittent peritoneal

dialysis is usually carried out for 10 to 12 hours,

3 nights weekly. The main problem with this technique is that as a patient’s residual renal function

declines, he or she require’s longer treatment

times.

CAPD, a technique of portable self dialysis introduced in 1976, affords patients relative freedom and control over their own care, because it

requires no machine and, often, no assistance (see

figure 7-3). Self-care CAPD patients empty a 2-liter

bag of dialysate into their peritoneal cavity and

then proceed with their usual activities for the

next 4 to 8 hours or overnight. At the end of the

dwell time, the dialysate is drained into the empty

bag, detached, and replaced by a fresh bag. The

Figure 7-3.—Continuous Ambulatory

Peritoneal Dialysis (CAPD)

A sealed bag containing 2 liters of dialysis fluid is first

emptied into the peritoneal cavity, then wrapped up and

stowed in a pouch while the patient walks around, and finally

hung below the abdomen to drain out the used fluid. The old

bag is then changed for a full new one.

SOURCE: D.NS, Kerr, “Renal Dialysis: Techniques and Clinical Applications, ”

The Oxford Companion to Medicine, J. Walton, P.B. Beeson, and R.B.

Scott (eds.) (Oxford, England: Oxford University Press, C 19S6).
Ch. 7—Dialysis for Chronic Renal Failure ● 255

process of drainage, disconnection, connection,

and infusion takes 30 to 45 minutes. The process is repeated three to five times daily, 7 days

a week. Sterile technique must be maintained.

CAPD has undergone an astonishingly rapid increase in use worldwide. It is now the most popular form of peritoneal dialysis and the most common form of home dialysis, accounting for over

13 percent of all dialysis patients in the United

States (46). Apart from possible complications, one

main problem with CAPD is that the patient has

little or no respite from continuous treatment,

CCPD is a combination of intermittent peritoneal

dialysis and CAPD that involves the use of a machine to cycle dialysate in and out of the peritoneal

cavity automatically overnight and ambulatory

peritoneal dialysis during the day (6). Typically,

the dialysate is instilled into the peritoneal cavity

in the morning and remains there until connection to the dialysis machine in the evening. CCPD

reduces the need to make bag changes during the

day and, by reducing the number of connections

to a machine, may also lessen the risk of peritonitis (inflammation of the peritoneum).

Treatment Settings

The choice of treatment setting is closely related

to the type of renal dialysis to be used. Both setting and type of dialysis depend on the patient’s

medical condition, ability to participate in care,

level of support that the patient has available at

home, resources in the community, and patient

and caregiver preferences. Patients in acute renal failure are treated in hospital inpatient facil-

‘ ities, often in an intensive care unit (lCU). Patients

with chronic renal failure can be treated in an

ICU or a hospital inpatient facility, but if they are

medically stable, they can receive dialysis in an

outpatient facility (either a hospital-based outpatient unit or a freestanding dialysis center) or

at home (1).

Institutions that provide outpatient dialysis for

patients with chronic renal failure are divided by

Medicare’s ESRD program into two categories:

hospital outpatient units and freestanding dialysis centers (l). Hospital outpatient dialysis units

use the existing administrative structure of the

hospital and are able to offer the usual range of

hospital services, including diagnostic, therapeutic, and rehabilitative services. Freestanding dialysis centers provide staff-assisted outpatient dialysis but do not provide inpatient services (such

centers usually contract with hospitals for necessary inpatient hospital services). More than 58 percent of the 1)558 institutions approved to provide

outpatient chronic dialysis services in the United

States are freestanding facilities (45).

Home dialysis involves training the patient and

a family member, or in some cases a paid dialysis

helper when a family member is not available, in

order to assist the patient with dialysis at home

(3). Home hemodialysis training takes from 3

weeks to 3 months, and home peritoneal dialysis

training takes 1 to 2 weeks (1). Home dialysis gives

patients with chronic renal failure a measure of

independence and often reduces the cost of personnel (l). In general, however, home dialysis requires more patient initiative, responsibility, and

better health. Home dialysis patients, because they

are relatively healthy, have fewer hospitalizations

than other dialysis patients and their annual total costs tend to be lower (39).

Home dialysis requires a range of support services on an ongoing basis. The patient should receive regular medical followup from a physician

(usually monthly). Arrangements must be made

for provision of supplies and maintenance and repair of equipment. Ongoing social work support,

vocational rehabilitation services, and nutrition

counseling are also important. The patient also

must have contacts with appropriate members of

a dialysis unit in case of an emergency. A nurse

should be available on call at all times to answer

questions or to respond in an emergency. In addition, self-care patients and their family members

must be prepared for medical or mechanical emergencies.

Choice of ESRD Treatment Modality

In general, the least restrictive ESRD treatment

modality that is medically appropriate should be

the first choice. Thus, a chronic renal failure patient who is medically stable, instead of being confined to the hospital as an inpatient, should probably receive maintenance dialysis at a freestanding

dialysis center or hospital outpatient unit. Simi-
256 • Life-Sustaining Technologies and the Elderly

larly, a patient capable of home dialysis should Sometimes decisions about ESRD treatment mobe allowed that option because of the greater free- dalities are limited by the availability of resources.

dom it permits. Home dialysis places great respon- Kidney transplantation, for example, depends on

sibility on the patient. This is especially true for the availability of a living, related donor or caCAPD, which requires that the patient perform daver kidney. Given the present shortage of donor

four or five treatments daily with meticulous at- kidneys, transplantation is not always an availtention to sterile technique (34). able option.

UTILIZATION AND COST OF DIALYSIS

Utilization of Dialysis

Medicare’s ESRD program covers 93 percent of

all patients with chronic renal failure in the United

States (9))

4 and has made treatment for ESRD

available to an increasing number of elderly and

other Americans (see table 7-2).

In 1985, Medicare’s ESRD program served a total of 90)621 dialysis patients and there were 6,938

transplants (46). 56 Almost 31 percent of all dialysis patients in the Medicare ESRD program were

over the age of 65 (46). Virtually all ESRD patients

who are elderly when treatment is initiated are

on dialysis.

The percentage of new dialysis patients who are

elderly has increased faster than any other age

group, with annual percentage increases from

4

Persons covered by the armed services or by certain State or

private insurance programs are exceptions (35).

The total number of ESRD patients is not equal to the number

of transplant patients plus the number of dialysis patients because

dialysis patients may receive a transplant, a patient may receive more

than one transplant, and a transplant patient may be returned to

dialysis if the graft fails.

6The Veterans Administration, which has a high proportion of

elderly male patients, had 3,327 dialysis patients in 1985 (40).

1980 to 1984 of 11.7 percent for patients age 65

to 74 and 20.7 percent for patients over 75 (40).

As evidence has accumulated that many elderly

patients tolerate dialysis well and have a reasonable quality of life, more physicians recommend

the therapy and more patients are willing to try it.

While elderly patients are undergoing dialysis

in increasing numbers, they have not received

treatment at the same rate as younger people. In

1979, while 80 percent of the patients age 25 to

45 at risk to die of uremia entered dialysis, only

30 percent of patients at risk over age 65 and just

6 percent of patients over age 75 did so (16).

The proportion of elderly ESRD dialysis patients

will probably continue to increase for sometime.

This prediction is based on the aging of the U.S.

population and the expectation that cadaver kidneys will become more readily available to younger ESRD patients (l).

One important implication of the increased enrollment of elderly persons in Medicare’s ESRD

program is an increasing proportion of patients

with vascular and other comorbid conditions.

Such conditions increase morbidity and reduce

Table 7=2.–Medicare ESRD Program Enrollment by Age, 1979-84

Average

annual 1983-84

percent percent

1979 1980 1981 1982 1983 1984 increase increase

Total. . . . . . . . . . . . ..54,428 61,899 70,435 77,886 86,499 92,770 11.3 7.2

Age:

Under 25 years. . . . . 4,145 4,552 5,023 5,406 5,817 6,025 7.8 3.6

25 to 44 years. . . . . . 15,325 17,108 19,745 21,694 24,070 26,070 11.2 8.3

45 to 64 years. . . . ..23,561 26,351 29,844 32,773 35,330 36,991 9.4 4.7

65 years or over. . . . 11,397 13,688 15,823 18,013 21,282 23,684 15.8 11.3

SOURCE: U.S. Department of Health and Human Services, Health Care Financing Administration, Bureau of Data Management and Strategy, Research Report: End-Stage Renal Disease, 1985 (Washington, DC: U.S. Government Printing

Office, in press, 1987).
Ch. 7—Dialysis for Chronic Renal Failure . 257

survival among patients receiving dialysis. Furthermore, since patients with such conditions are

more likely to be hospitalized than patients without such conditions, their per capita costs are likely

to be higher. It is uncertain whether all the patients with diabetic ESRD and all the elderly patients who might benefit from dialysis are being

referred.

Growth in the overall U.S. ESRD dialysis population between 1980 and 1984, is shown in table

7-3. Growth in the overall population averaged

approximately 10 percent per year. Growth in the

number of patients using CAPD averaged almost

37 percent per year.

Cost of Medicare’s ESRD Program

The economic burden of dialysis and kidney

transplantation is great for the U.S. health care

system and for patients and their families.

Through Medicare, the Federal Government bears

about 80 percent of the costs of treatment for

ESRD. In 1984, ESRD beneficiaries represented

less than one-third of a percent of all Medicare

beneficiaries, and accounted for almost 3.2 percent of total Medicare expenditures (Parts A and

B) (47)40). The costs of ESRD treatments not borne

by Medicare are paid by private insurance, Medicaid, Federal programs such as those of the Veterans Administration, and/or personal resources.

The rapidly escalating expenditures of Medicare’s ESRD program have been well documented

(see table 7-4). In 1974, Medicare’s ESRD program

expenditures were $229 million for 16,000 beneficiaries. By 1984, there were 92)770 beneficiaries

and annual program expenditures had reached

almost $2 billion (40).7 This escalation in aggregate Medicare expenditures for ESRD was not anticipated when Congress established the ESRD program in 1972, According to some observers, the

cost figures Congress was given in 1972 were unreasonably low and quite misleading (25,29).

Because of the extraordinary costs of the ESRD

program, Congress has sought to limit the expenditures through two laws: 1) the ESRD Program

Amendment of 1978 (Public Law 95-292), and 2)

the omnibus Budget Reconciliation Act of 1981

(Public Law 97-35). These laws contained, among

other things, provisions designed to encourage

home dialysis, which is less expensive than center dialysis, to encourage kidney transplantation,

which, when successful, is less expensive over the

succeeding years, and to establish composite reimbursement rates for ESRD services.’

7HCFA data on reimbursements in the End-Stage Renal Disease

Program include all Medicare reimbursements that pay for services used by this population, not only the cost of dialysis and transplantation.

‘Provisions to encourage home dialysis in the ESRD Program

Amendments of 1978 included a waiver of the usual 3-month waiting period for entitlement for patients in self dialysis training programs, full coverage for home dialysis supplies, loo-percent reimbursement for home dialysis equipment, and authorization to

establish target-rate reimbursements to encourage home dialysis.

Provisions in the 1978 law to encourage transplantation included

(continued on next page)

Table 7-3.—End-Stage Renal Disease (ESRD) Dialysis Population

by Type and Place of Dialysis, 1980=85°

Dialysis type/place 1980

Total . . . . ...........52,364

In-unit hemodialysis ..43,271

In-unit peritoneal . . . . . 911

Home hemodialysis . . 4,715

Home peritoneal . . . . 612

CAPD c . . . . . . . . . . . . . . 2,334

CCPD d 

. . . . . . . . . . . . . . –

Self training . . . . . . . . . 521

1981 1982 1983 1984 1985

58,924 65,765 71,987 78,483 84,797

48,011 52,559 57,029 62,462 67,559

944 885 745 603 588

4,481 4,394 4,323 4,125 3,983

646 816 790 259 231

4,347 6,523 8,532 9,995 11,236

— — — 859 953

495 588 568 481 569

Average

annual Percent

percent change

change 1984-85

10.1 8.0

9.3 8.2

–8.4 –3.0

–3.3 –3.4

–17.7 –13.1

37.0 14.7

10.9 14.4

1.8 –48.6

%ounts are as of Dec. 31 of each year from ESRD Facility Surveys.

%his figure decreased significantly in 1984, partiaiiy due to CCPD patients being counted in this category in previous years.

A CCPD category was added to the ESRD Facility Survey in 1984,

CCAPD, Ccmtlnuoljg ambulatory peritoneal dialysis.

dCCpD, continuous cyciing peritoneal dialysis. CCPD rate of growth is calculated from 19~.

SOURCE: US. Department of Health and Human Services, Health Care Financing Administration, Bureau of Data Management

and Strategy, Research Repoti:Errd-Sfage Rena/ Disease, 1985 (Washington, DC: U.S. Government Printing Office,

in press, 1987),
258 ● Life-Sustaining Technologies and the Elderly

Table 7-4.—Medicare Reimbursements by Enrollees and Per Capita Reimbursements

for Persons With End-Stage Renal Disease, 1974-84

Reimbursement

Reimbursements Enrollment per enrollee

Amount in Percent Number in Percent Percent

Year millions change thousands change Amount change

1974 ..., . . . . . . . . . . . . . . . . . $ 228.5 — 16.0 — $14,300 —

1975 ......., . . . . . . . . . . . . . 361.1 58.0 22,7 41.9 15,900 11.2

1976 . . . . . . . . . . . . . . . . . . . . . 512.2 41.8 28.9 27.3 17,720 11.4

1977 . . . . . . . . . . . . . . . . . . . . . 641.3 25.2 34.8 20.4 18,420 3.9

1978 . . . . . . . . . . . . . . . . . . . . . 800.0 24.7 43.5 25,0 18,390 –0.2

1979 . . . . . . . . . . . . . . . . . . . . . 1,010.7 26.3 54.4 25.1 18,579 1.0

1980 . . . . . . . . . . . . . . . . . . . . . 1,252.2 23.8 61.9 13.8 20,229 8.9

1981 . . . . . . . . . . . . . . . . . . . . . 1,476,2 17.9 70.4 13.7 20,969 3.7

1982 . . . . . . . . . . . . . . . . . . . . . 1,660.9 12.5 77.9 10.7 21,321 1.7

1983 . . . . . . . . . . . . . . . . . . . . . 1,893.6 14.0 86.5 11.0 21,891 2.7

1984 . . . . . . . . . . . . . . . . . . . . . 1,953.5 3.2 92.8 7.3 21,051 –3.8

NOTE: Data are incomplete for most recent years due to continual updating of the payment files.

SOURCE: U.S. Department of Health and Human Senfices, Health Care Financing Administration, Bureau of Data Management and Strategy, Research Report: %%Stage Rena/Disease, 1985 (VVashin@on, DC: U.S. Government Printing

Office, in press,1987)

Even though Medicare’s aggregate and per capita expenditures for ESRD have risen annually,

when adjusted for inflation in medical care, the

per capita expenditure rates have remained almost

constant. As shown in table 7-4, average Medicare ESRD expenditures per capita rose from

$14,300 in 1974 to $21,051 by 1984; when corrected for inflation, however, figures for the two

years were virtually equivalent (29). Data from

1974 to 1979 show that while per patient costs

for the ESRD program rose 30.8 percent, during

the same period, national per capita health expenditures rose by 74,9 percent and the cost per day

in community hospitals rose 91.4 percent (24). The

average annual rate of growth in per enrollee

reimbursement levels was less than 4 percent from

1974 to 1984 (40).

Treatment for patients on chronic renal dialysis includes the dialysis treatments themselves,

(continued from previous page)

extension of the post-transplant Medicare entitlement from 1 to 3

years, clarification of coverage for living-related donor costs, and

of the reimbursement principles for cadaveric organ procurement.

The Omnibus Budget Reconciliation Act of 1981 directed the Health

Care Financing Administration to develop reimbursement rates for

dialysis treatment based on a composite of facility and home dialysis costs in order to provide an incentive for home dialysis. The

new rates implemented in 1983 were $131 per dialysis treatment

in hospital-based facilities, and $127 per dialysis treatment for freestanding facilities. These rates replaced the $128 previously applicable to both types of facilities. The act also had a further provision

which made Medicare payment secondary to other insurance coverage for the first year following onset of chronic renal failure.

physician services both for the supervision of dialysis and the treatment of other medical problems, any required hospitalizations, and ancillary

services such as laboratory tests and medications

(34). Reasonable estimates of the average annual

costs of treatment of a patient on chronic dialysis

range from $20,000 to $30,000 (1982 dollars) (34).

Dialysis treatments themselves account for about

70 percent of this total.

The growth in aggregate Medicare expenditures

for ESRD from 1974 to 1983 is primarily attributable to growth in the number of ESRD beneficiaries. From 1974 to 1981, about 76 percent of the

growth in ESRD reimbursements was due to an

increase in the number of beneficiaries (8).

Hemodialysis in hospital dialysis centers is the

most expensive form of dialysis treatment (34).

Differences in the cost of treatment by hemodialysis performed in independent centers, by hemodialysis performed at home, and by CAPD are

sufficiently small that they can be accounted for

by variations in methods used in available cost

estimates and by case-mix differences (34).

Medicare approval of CAPD and the use of cyclosporin as an immunosuppressive agent for

transplant patients may have a significant impact

on the total costs of Medicare’s ESRD program

in the years ahead, Also, Medicare’s Part A prospective payment system may shift some costs by

encouraging transplantation and outpatient dialysis.
Ch. 7—Dialysis for Chronic Renal Failure ● 259

OUTCOMES

Both the clinical and psychosocial outcomes of

ESRD treatment are influenced by the cause of

the kidney failure, comorbidity, type of treatment,

and the willingness and ability of the patient to

cooperate with the rigorous treatment regimen

that dialysis entails. Specific information about the

outcomes of dialysis in the elderly population is

limited.

Clinical Outcomes

Survival

Survival rates among chronic dialysis patients

appear to be related to a number of factors: age

at the time of starting treatment, cause of renal

disease, and presence of preexisting disease at the

time of starting dialysis (l).

In general, survivalrates are lower among

elderly patients receiving chronic dialysis than

among younger patients (2)33,49). In 1984, the 1-

year survival rate for patients of all ages in Medicare’s ESRD program was 84.8 percent. For U.S.

dialysis patients between the ages of 65 and 74,

the l-year survival rate was 77.4 percent; for patients age 75 and over, it was 68.9 percent (table

7-5), For ESRD patients over age 65 treated with

OF DIALYSIS

dialysis or transplant at the Northwest Kidney Center in Seattle, 5-year survival is 25 percent (l).’

The probability of survival while on ESRD treatment is closely associated with the primary cause

of kidney failure. Patients with kidney failure

caused by diabetic nephropathy 10 primar y

hypertensive disease have worse survival than patients with other disorders (1). For dialysis patients

in Medicare’s ESRD program whose primary cause

for kidney failure was diabetes mellitus, the 1-

year survival rate was 74.6 percent in 1984; when

hypertension was the primary cause of renal failure, the survival rate was 82.7 percent (see table

7-5).

9The fact that survival rates for elderly dialysis patients are lower

than those achieved in younger dialysis patients should not be used

to argue against offering dialysis to elderly people. Older people

in general are expected to die sooner than younger people. Infact,

mortality data show that while older people on dialysis for ESRD

have double the average projected 5-year mortality rate for their

age group (7o percent compared with 32 percent), young people

on dialysis for ESRD ha~’e 100 times the a~’erage projected 5-year

mortality rate for their age group (25 percent compared \iith .25

percent) (15,21).

‘(’Diabetic nephropathy is one of the most serious complications

of diabetes mellitus, a multisystem disease that ad~’ersely affects

the cardiovascular system with consequent complications of the heart

and the blood vessels of the brain, the eLyes, and the kidne~rs.

Table 7-5.— Medicare ESRD Dialysis Patient Survival by Age and Cause of Renal Failure, 1980-84a

1980 1981 1982 1983 1984

Survival Survival Survival Survival Survival

rate rate rate rate

Characteristic

rate

(percent) Number (percent) Number (percent) Number (percent) Number (percent) Number

Total. ., ., ., ., ... 86.0 33,206 85.5 38,345 85.7 43,324 85.1 47,708 84.8 51,788

Age adjusted total . . . . 86.0 85.9 86.5 86.3 86.3

Age:

0 to 14 years. . . . . . . 96.3 286 96,8 334 97.7 379 98.9 394 96.6 419

15 to 24 years. 96.0 1,729 96.9 1,878 97.7 1,941 97.1 1,975 97.4 1,828

25 to 34 years. . . . .. . . . . . . .. . 95.0 3,776 94.4 4,240 94.7 4,665 95.1 4,878 94.9 4,919

35 to 44 years, ., ., . . 91.3 4,823 91.3 5,330 92.2 5,865 92.7 6,343 91.7 6,820

45 to 54 years, ., ., ., 89.1 6,863 89.0 7,590 90.0 8,346 88.8 8,910 89.1 9,255

55 to 64 years, ... 83.7 8,582 83.4 10,020 83.6 11,496 83.2 12,807 83.6 14,037

65 to 74 years. ... ., ., 77,0 5,769 76.6 7,040 77.0 8,169 76,8 9,383 77.4 10,795

75+ years ., . . ., 67.0 1,378 68.1 1,913 68.1 2,463 69.6 3,018 68.9 3,715

Cause of renal failure:

Diabetes ... ., . . 76.4 1,800 73.9 2,248 76.6 2,880 73.4 4,149 74.6 5,616

Glomerulonephritis ., 90,5 5,228 89.8 5,893 89.9 6,458 89.2 7,646 87.6 9,379

Hypertension . , 85.2 3,765 84,2 4,541 84.0 5,388 83.4 6,972 82.7 9,074

Other/unknown . , 85.8 22,413 85,7 25,663 86.0 28,598 86.2 28,941 86.6 27,719

al”~lu@S OnIy persons who have surwved for at least one year prior tO January 1 of reference year

SOURCE U S Department of Health and Human Serwces, Health Care Flnanclng Admmlstratlon Bureau of Data Management and Strafegy, Research Report End-Stage Rena/ Dsease, 1985 (Washington

DC U S Government Prmtmg Off Ice m press 1987)
260 ● Life-Sustaining Technologies and th Elderly

In 1985, the most common primary renal diagnosis for elderly dialysis patients who died was

hypertension with heart and renal disease (in 35.7

percent of patients who died at ages 65 to 74 and

in 35.7 percent who died at age 75 and over) (46).

Diabetes mellitus with other complications was

the second most common kidney diagnosis of

ESRD patients dying between ages 65 to 74. Glomerulonephritis was the second most frequent

diagnosis for those dying at age 75 and over.

The presence of preexisting disease is another

factor that affects survival. Severe hypertension,

cerebrovascular disease, cancer, and coronary artery disease have an adverse affect on survival

rates (l).

In 1985, the leading cause of death among Medicare ESRD patients age 65 to 74 and age 75 and

over was listed as “cardiac,” accounting for 25 and

27 percent of deaths in the two age groups respectively (46). Myocardial infarction was the next

most common cause of death for patients age 65

to 74, accounting for almost 15 percent of deaths.

In the 75 and over age group, withdrawal from

dialysis was the second most common cause of

death, followed closely by myocardial infarction,

with each accounting for about 12 percent of the

deaths in that age group (46).

Complications and Morbidity

Patients receiving dialysis for chronic renal failure can experience problems ranging from lifethreatening cardiovascular and cerebrovascular

diseases to debilitating diseases of the bones or

central nervous system, discomforts associated

with local infections, and the need to replace

catheters. These conditions can be caused by infections, metabolic changes, or mechanical problems with the dialysis equipment. Since elderly

patients are more likely than younger patients to

suffer from multiple health problems, they face

an increased risk of developing complications.

Some problems are associated with particular

forms of dialysis or dialysis settings. Problems associated with peritoneal dialysis, for example, include mechanical problems such as perforation

of the bowel (1). Peritoneal dialysis is also associated with a high risk of peritonitis (i.e., inflammation of the peritoneum). The latest U.S. data on

CAPD show an infection rate of slightly more than

one episode per year of treatment (35). If detected

and treated early, peritonitis often can be treated

at home and rarely causes death. If peritonitis

recurs, however, it can eventually force the patient to change to hemodialysis.

Problems associated with hemodialysis include

complications related to the vascular access site.

These include prolapse or obstruction of the catheter or shunt and thrombosis of the arteriovenous

fistula. Replacement or transfer of the fistula to

another site may be required, and eventual depletion of convenient anatomical sites may necessitate changing to another mode of treatment. Access problems are especially likely in older patients

with arteriosclerotic vessels and in diabetics (34).

In dialysis centers, outbreaks of viral hepatitis are

a serious threat to both patients and staff. Use

of the recently developed hepatitis-B vaccine is

beginning to affect the rate of hepatitis B infection, but other forms of hepatitis still occur (l).

The development of cardiovascular morbidity including myocardial infarctions, cerebrovascular

accidents, and advanced peripheral vascular disease may result from preexisting disease, but the

pace of these disorders may be accelerated by

hemodialysis (34).

Chronic renal failure is almost always associated with anemia, and this is a major factor in

a lack of well-being felt by many dialysis patients

(1). Inmost patients, anemia is due to reduced production of erythropoietin by the kidney causing

a reduction in red blood cell production (10).

Erythropoietin can now be made with recombinant DNA techniques, and clinical trials with synthetic erythropoietin have reduced patients’ anemia. (See app. C, “Future Developments in

Life-Sustaining Technologies.) Patients who have

normal iron stores when they begin dialysis typically develop iron deficiency within 6 months to

2 years (I). Once this occurs, it may be treated

by oral iron supplements or other methods.

Other conditions associated with dialysis include

bone diseases, which occur because of derangement in the metabolism of calcium and phosphorus, and peripheral and central nervous system

problems. A syndrome known as dialysis encephalopathy which includes personality changes and
Ch. 7—Dialysis for Chronic Renal Failure ● 261

an abnormal electroencephalogram and progresses

to death within a few months, has been linked

to the accumulation of aluminum in the blood and

tissues (l).

The major problem affecting long-term survival

among dialysis patients is cardiovascular disease

(l). Plasma lipid abnormalities and hypertension

can contribute to cardiovascular diseases. Parathyroid gland disorders and sexual dysfunction

also can occur.

Various measures can be taken to prevent and

reduce the complications and morbidity associated with dialysis. Among these measures are controlling hypertension, screening and vaccinating

for hepatitis, rigorously controlling diet and fluid

intake, and meticulously caring for the shunt or

catheter site.

Elderly patients as a group tend to have more

chronic diseases than younger patients, and these

can affect the outcome of dialysis. Diabetes mellitus, for example, is not only a cause of kidney disease, but may be accompanied by many complications other than those related to the kidney.

Degenerative joint disease poses difficulties in mobility, which can interfere with a patient’s commuting to the dialysis center or his ability to manage self dialysis. Varying degrees of cognitive

impairment, from mild changes related to cerebral arteriosclerosis to major problems caused by

Alzheimer’s disease, can interfere with a patient’s

ability to cooperate with the necessary therapeutic regimen including diet, control of fluid intake,

as well as the dialysis. When lethal diseases such

as metastatic cancer are present in tandem with

ESRD, they raise difficult ethical questions about

the value of continued dialysis.

Psychosocial Outcomes

Maintenance dialysis introduces major difficulties into the lives of patients with ESRD. The commitment to time-consuming, regular treatments

demands that patients order their lives around

a rigid schedule. Dietary and fluid restrictions

must be carefully followed and travel must be

carefully planned. In addition to the more serious complications associated with dialysis, wide

swings in blood pressure, weakness, and nausea

are common discomforts.

ESRD patients on dialysis must adjust to the idea

of continued treatment for the remainder of their

lives and the ever-present risk of complications

related both to their renal failure and to dialysis

itself. For those patients who are dialyzed in any

type of center, there is the additional problem of

commuting to and from the center. Transportation may pose a great burden for some elderly

persons.

Some of the chronic stresses associated with

ESRD include dependency on medical machinery

and personnel, the constant threat of death and

of reduced life expectancy, and decreased physical strength and stamina. Some researchers have

reported feelings of helplessness and depression

among some dialysis and transplant patients (7).

A variety of losses frequently accompany ESRD

treatment and can add to the emotional strain.

These include the loss of participation in valued

activities such as work, family and household

responsibilities, and leisure activities. These intrusions threaten the individual’s security and enjoyment of life and may contribute to a sense of

loss of control and reduced self-esteem.

Adjusting to a technology dependent lifestyle

can be very difficult. Information about the psychosocial effects of dialysis, especially for elderly

patients, is limited, but some evidence suggests

that elderly patients tolerate dialysis as well as,

or better than, many younger dialysis patients

(16,49).

A national survey completed in 1985 collected

data on, among other things, how dialysis and kidney transplant patients perceived the quality of

their lives (12). The data represented a balance

of geographic locations, type of facility, ownership, size, academic affiliation, availability of a

home training program, number of patients by

type (home, in-center, CAPD/CCPD, transplant),

and service area. Although the data are not representative of the entire population of dialysis and

transplant patients in the United States, the information provides insights not available from

other sources.

Special analyses done for OTA provide some agegroup comparisons (11). Of the 859 patients responding to the survey, about 13 percent were
262 ● Life-Sustaining Technologies and the Elderly

age 65 or older. More than half of these elderly

patients were between the ages of 65 and 69; half

as many were patients age 70 to 74; and the rest

were age 75 or older, Elderly patients (age 65 and

over) represented approximately 21 percent of

in-center hemodialysis patients, 10 percent of

home hemodialysis patients, and 15 percent of

CAPD patients. None of these elderly patients had

received a transplant.

In comparison with younger patients, ESRD patients age 65 or over had a higher well-being index, more positive feelings, less negative feelings,

and a feeling that their life was easier (11). They

had greater satisfaction with life in general and,

in particular, with their marriages, family life, savings and investments, and standard of living. On

the other hand, elderly respondents assessed their

own health as poorer than that of others their

age. They reported greater functional impairment,

markedly less ability to work, and a much lower

current employment rate than younger patients.

Respondents under and over age 65 revealed generally small differences in the “total sickness impact profile.” Elderly respondents reported a

reasonable degree of ability to perform normal

activities. A detailed analysis of overall functional

status, using the Karnofsky Index (18), showed

that almost half (47 percent) of the elderly patients

fell in the top three categories: “normal” (2.7 percent), “normal activity” (24.3 percent), and “normal activity with effort” (23.4 percent).

Two smaller studies also provide some information on patients’ satisfaction with their lives

on dialysis (26)31). One study focused on ESRD

patients as a whole and the other compared patients between the ages of 55 and 65 with patients

who were 65 or older. In both studies, the vast

majority of respondents said their lives were

worth living, dialysis was worthwhile, and the future would be better than the present or the past.

Ten percent of respondents age 55 to 65 and 20

percent of those over age 65 reported that they

had considered withdrawing from dialysis treatment. Also, respondents’ self-assessments of their

overall health, the number of hospital admissions,

and effectiveness of treatment (as measured by

blood chemistries) were very similar for these two

age groups.

Another measure of the psychosocial impacts

of dialysis is the extent to which patients decide

to discontinue treatment. National data indicate

that in 1985, 8.5 percent of patients age 65 to 74

and 12 percent of patients over age 75 died as

a result of “withdrawal from dialysis” (46). Withdrawal from treatment was the third most common cause of death among elderly dialysis patients.

A retrospective study of 1)766 patients in the

dialysis program of the Regional Kidney Disease

Center in Minnesota found that in 155 cases, dialysis was stopped before a biologic cause of death

supervened (27). In one study that asked questions about the quality of life, 10 percent of respondents age 55 to 65 and 20 percent of those

over age 65 reported that they had considered

withdrawing from dialysis treatment (31). While

suicide among dialysis patients is thought to be

high, statistics on actual or contemplated ‘(withdrawal” cannot be equated with suicide. Some of

these cases involve patients whose will to live may

be great, but for whom further treatment would

be futile. Others are no longer mentally capable

and the decision to withdraw dialysis is made by

a surrogate.

MAKING DECISIONS ABOUT DIALYSIS

Decisions about starting and stopping dialysis

exemplify many of the dilemmas that attend decisions about the use of life-sustaining technologies for elderly people. Among the criteria considered in these decisions are those that pertain

to the patient and those that relate to the availability of resources. These two types of criteria

are sometimes interdependent. When resources

are scarce, it may be that only those patients for

whom significant medical benefit is most certain

will receive treatment. In times of greater abundance, the pool of treatment recipients may expand to include patients for whom the chance of

significant improvement is smaller. Sometimes in

fact, the pool may expand to include patients for

whom treatment offers no real hope of benefit.
Ch. 7—Dialysis for Chronic Renal Failure ● 263

For over a decade after it was technically possible to provide chronic dialysis and/or kidney transplantation for ESRD patients, the scarcity of resources and high cost of the treatment placed it

out of reach for most Americans. Patient selection committees were burdened with weighty decisions about who should live. The criteria they

used to select patients for treatment included, in

addition to medical and psychological criteria, the

criterion of social worth. Discussions might focus on factors such as the social value of the patient to the community, the family responsibilities of the patient, and the patient’s employability.

In 1972, however, Congress acted to include payment for ESRD treatment under Medicare, and

these agonizing deliberations over patient selection were ended,

Policymakers in the United Kingdom have taken

a dramatically different approach to the allocation of ESRD treatment resources (see box 7-A).

In the United Kingdom, “the fear of treating too

many inspires greater passion than the fear of

treating too few” (14).

In both the United States and the United Kingdom, how ESRD patients are chosen for treatment

and which treatments they receive are determined

at least as much by social priorities as by medical

appropriateness. The difference in the two countries, representing two extremes of the range of

patient enrollment, are accounted for at least

partly by their difference in ability and willingness to make or avoid “tragic choices. ” As long

as funding is available for ESRD treatment through

Box 7-A—Treatment for ESRD in the United Kingdom
264 • Life-Sustaining Technologies and the Elderly

Medicare’s ESRD program, at least some tragic

choices can be avoided.

Decisions About Initiating Dialysis

With payment for ESRD treatment widely available through Medicare’s ESRD program, decisions

about initiating dialysis in the United States can

focus on considerations pertaining to the individual patient. one potential consideration is whether

dialysis will provide medical benefit to the patient.

Determining the likelihood of medical benefit from

dialysis involves assessing a patient’s medical status and prognosis. This involves the assessment

of systems involved in the patient’s renal disease,

as well as any concomitant medical problems.

Another potential consideration in decisions about

initiating dialysis is the patient’s ability and willingness to cope with strict treatment regimens.

In some cases, the presence of a condition such

as cancer may lead to a decision not to initiate

dialysis. The following case describes an elderly

man who was unwilling to undertake chronic dialysis treatment:

Decisions About Stopping Dialysis

In some cases, a point may be reached where

dialysis appears to be of no further medical benefit, where a patient does not wish to continue,

or when a surrogate decision is needed. This point

may come in a matter of weeks or after many

years of dialysis treatment.

Decisions to discontinue dialysis are often more

difficult than decisions to start dialysis. The following case illustrates some of the decisionmaking dilemmas that can arise:

Strong Memorial hospital, the tertiary care center for the Rochester, New York area, deals with

decisionmaking dilemmas for some dialysis patients by offering patients a trial treatment period
Ch. 7—Dialysis for Chronic Renal Failure ● 265

at the end of which the decision to withdraw dialysis may be considered (13). A trial treatment

period allows a patient (and family) an opportunity to ‘(try out” dialysis without making an irreversible decision. It also gives physicians time to

establish a more precise diagnosis, adjust therapy to an optimal level, and better assess

prognosis.
266 ● Life-Sustaining Technologies and the Elderly

diabetes. In all age groups except the oldest, dialysis was stopped three to five times more often

among diabetic patients. Among nondiabetic patients, degenerative diseases such as heart and

vascular disease, cancer, and chronic pulmonary

disease were significantly more common in patients from whom dialysis was withdrawn than

in patients who remained on dialysis.

The site of residence could be ascertained for

98 of the 155 patients. At the time a decision to

discontinue dialysis therapy was made, 81 percent of these patients lived at home. At the time

of death, however, most of the patients who discontinued dialysis were in hospitals. A small percentage died at home (13 percent) or in hospices

(4 percent).

Decisionmaking Procedures

Initially, ESRD therapy is considered by a patient’s physician, either a family physician who

refers the patient to a nephrologist or a nephrologist who has followed the patient with renal disease for a long time and recognizes that the disease has reached the stage where dialysis and/or

renal transplantation should be considered. In

some centers, especially the larger ones, a review

committee meets regularly to consider the treatment to be recommended for each new ESRD

patient–the different types of dialysis, a kidney

transplant, as well as a recommendation not to

treat at ail. Such committees usually include representatives from among the following fields:

nephrology, transplantation, urology, nursing, social work, clergy, law, hospital administration, nutrition, and the dialysis center staff. Often, the

patient and/or patient’s family are asked to attend

so they can understand and participate in the decisionmaking process and ask questions of the health

team.

There is almost nothing in print about the criteria dialysis centers use to select patients for dialysis. In January 1984, the Section on Renal Disease, Department of Internal Medicine, University

of Arizona Health Sciences Center, prepared a

written policy in preparation for a site visit by

the Joint Commission on Accreditation of Hospitals. This policy, outlined below, is representative

of the approach described to OTA by many nephrologists responsible for dialysis patients. Chronic

dialysis therapy is provided to every patient,

regardless of age, who:

1. grants fully informed consent;

2. has chronic, irreversible ESRD;

3. has a reasonable expectation of a quality of

life acceptable to himself or herself; and

4. desires and can cooperate with such therapy

(48).

One study of the criteria used by physicians to

select patients for ESRD treatment at 373 dialysis

centers and 80 transplantation hospitals (20) rated

potential patient selection criteria along a 5-point

scale to indicate their importance in decisionmaking. Virtually all respondents considered the following criteria important: prognosis, psychological stability, and likelihood of medical benefit. A

very large majority (nearly 90 percent) of respondents said they would consider the patient’s willingness to participate in treatment and/or consider

the patient’s age indecisions about treatment. Only

10 percent of responding dialysis facilities said

they currently excluded patients because of advanced age, but 85 percent of dialysis centers reported that “under conditions of significant scarcity,” they would do so.

There is no uniform mechanism for making decisions to withdraw dialysis. Although most physicians consider it their responsibility to make recommendations about appropriate medical care for

patients, the ultimate decision about discontinuing treatment usually rests with the patient or patient’s family (27). The case of 78-year-old Earle

Spring highlights the legal, ethical, and medical

issues that can surround decisions about the termination of dialysis for patients who are no longer

decisionally capable (see box 7-B).

Ethical Issues

According to some people, because the ESRD

program covers treatment costs for virtually all

ESRD patients regardless of age, diagnosis, or any

other factor, there is a strong financial incentive

to provide treatment for all patients who reach

ESRD, and to continue that treatment as long as

it is able to sustain life (25). In some cases, however, the initiation or continuation of dialysis (or
Ch. 7—Dialysis for Chronic Renal Failure . 267

other life-prolonging treatment) may be a burden

to the patient.

Any analysis of ethical issues surrounding decisions about initiating and terminating dialysis

treatment must recognize that Western culture

and the United States place great weight on the

Box 7-B.-The

importance of the individual and the right of self -

determination or autonomy. When possible, the

patient must be allowed to decide if a commitment to long-term dialysis is worth the trade-off,

As discussed throughout this report, medical staff

and patients often will differ significantly in what

they perceive about quality of life. Some patients

with ESRD are incapable of making their own deEarle Spring Case

dialysis treatments would have rested where it had 14 months previously-with the court.

SOURCE: JJ. Paria, ~th,_ and the Courta: TIM Travesty and Tragedy of tha EM% Spring CWW,” LhMXW @8~49:2~1, 1%W.

63-216 0 - 87 - 7 ; QL 3
268 . Life-Sustaining Technologies and the Elderly

cisions about dialysis treatment, and the decisions

have to be made by a surrogate.

Legal Issues

A 66-year-old widow had been on maintenance

dialysis for 8 years. In 1978, she had a stroke that

left her left side paralyzed. In 1983, she had

another stroke that left her with a right-sided

paralysis, unable to communicate or to perform

the simplest task. Her heart was unstable and she

required monitors and other resources available

only in the medical ICU. All medical professionals

involved in caring for the patient agreed that the

patient’s outlook for recovery and return to a

meaningful existence was hopeless, but three of

her sons were adamant that every possible treatment be provided. Without the consent of the legal next of kin, no one felt that it was ethically

or legally right to discontinue treatment. The patient remained hospitalized, mostly in the ICU for

FINDINGS AND

An increasing number of elderly patients with

ESRD are being treated by dialysis. Almost half

the new patients starting treatment in the United

States are age 55 or older, and almost half the patients enrolled in Medicare’s ESRD program are

55 or older (1). These numbers will probably continue to increase (1). Experience has shown that

elderly patients tolerate dialysis reasonably well,

and with resources and payment now available

through Medicare’s ESRD program, age is not a

prominently used criterion in the selection of patients.

The American experience with dialysis for ESRD

presents two major concerns: 1) the high costs

of dialysis borne by the Federal Government, patients, and their families; and 2) ethical problems

accompanying the decisionmaking process involved with starting and stopping dialysis

treatment.

Through Medicare, the Federal Government

bears about 80 percent of the cost of treatment

for ESRD for about 103,000 patients (44). As noted

earlier, the cost of Medicare’s ESRD program is

now well over $2. I billion annually, and aggregate

expenditures have been increasing each year. In69 days. She died of overwhelming infection, dialyzed until the day before her death (13).

Few legal cases have arisen as a result of ESRD

treatment or decisions. One reason for this may

be that dialysis centers are particularly cautious

not to deny treatment if the patient and/or family

insist on receiving dialysis, even though the kidney team recommends against it. The University

of Rochester kidney team has commented that if

there is a potential for litigation, patients will continue to receive dialysis even if the kidney health

care team believes treatment should be stopped

(13). Similar statements have been made by dialysis team leaders across the country. Leroy Shear,

Director of the Western Massachusetts Kidney

Center noted, “The way I practice medicine is very

much determined by what the courts tell me to

do” (17)28).

IMPLICATIONS

creases in aggregate expenditures are due largely

to growth in the ESRD population. Despite the fact

that Medicare’s ESRD population includes a higher

percentage of older and sicker patients, per capita expenditures (when adjusted for inflation) have

remained fairly constant or even decreased over

the life of the program (25).

In part because there are Medicare funds available to cover treatment, dialysis for ESRD is currently available to Americans of all ages. Although

elderly people as a group tend to have more complications and lower survival rates than younger

people, a patient’s age alone is not a good predictor of the outcome of dialysis. Other important

considerations include the cause of a patient’s renal failure and the presence of comorbidities.

Typically, a decision to initiate dialysis involves

a recommendation from the health care providers

involved in a patient’s care. Increasing emphasis

is placed on the importance of patient autonomy,

however, and major efforts are made to inform

patients and their families about all aspects of their

disease and treatment. In some cases, patients may

decide that they do not want dialysis treatment

even if it may prolong their lives.
Ch. 7—Dialysis for Chronic Renal Failure ● 269

For some patients, a point may be reached

where dialysis is no longer beneficial. When a recommendation is made to discontinue dialysis therapy, agreement is sought from the patient or, if

the patient is incapable of participating, from the

patient’s next of kin. In the absence of clear permission from either the patient or surrogate, fear

of litigation sometimes keeps kidney care teams

from discontinuing dialysis even when it is no

longer medically beneficial.

Many elderly patients with ESRD have been restored to productive and meaningful lives through

dialysis treatment. others are able to enjoy a quality of life that they find acceptable. Some elderly

patients, however, choose to discontinue dialysis.

Clearly, the ethical decisions associated with dialysis and its dilemmas must be approached individually. The solutions to the critical dilemmas

associated with ESRD and dialysis, however, may

have important implications for other catastrophic

illnesses and life-sustaining technologies.

CHAPTER 7 REFERENCES

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Related Therapies for Renal Dialysis and the

Elderly /Technology,” prepared for the Office of

Technology Assessment, U.S. Congress, Washington, DC, 1986.

2. Carlson, D., Stevens, G., and Ahlquist, J., “End-Stage

Renal Disease Network 7, 1985 Annual Report,”

Minneapolis, MN, 1986.

3. Clark, M. F., “Experience With Paid Dialysis Helpers,”

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4. Commerce Clearinghouse, “Medicare Regulations.

Subpart U. Conditions for Coverage of Suppliers

of End-Stage Renal Disease (ESRD) Services. Reg.

405.2102; 20,866B,” Medicare and Medicaid Guide

(Chicago, IL: Commerce Clearinghouse, Inc., 1986).

5. Cummings, N.B., “Renal Dialysis,” prepared for the

Office of Technology Assessment, U.S. Congress,

Washington, DC, January 1986.

6. Diaz-Buxo, J.A., “Continuous Cyclic Peritoneal Dialysis,” Peritoneal Dialysis, K.D. Nolph (cd.) (Boston, MA: Martinus Nijhoff, 1985).

7. Devins, G.M., Binik, Y. M., Hollomby, D.J., et al.,

“Helplessness and Depression in End-Stage Renal

Disease, ’’Journal of Abnorma] Psychology 90:531-

545, 1981.

8. Eggers, P. W., “Trends in Medicare Reimbursement

for End-Stage Renal Disease, 1974-1979,” Health

Care Financing Review 6:31-38, 1984.

9. Eggers, P. W., Connerton, R., and McMul]an, M.,

“The Medicare Experience With End-Stage Renal

Disease: Trends in Incidence, Prevalence, and Survival)’’Heahh CamlO”nancingRew”ew 5:69-88, 1984.

10. Eschbach, J.W., and Adamson, J.W., “Anemia of

End-Stage Renal Disease (ESRD),” Kidney International 28:1, 1985.

11. Evans, R.W., Project Director, National Kidney Dialysis and Transplantation Study, Battel]e Human

Affairs Research Centers, Seattle, WA, special data

analyses prepared for the Office of Technology

Assessment, U.S. Congress, Washington, DC, 1985.

12. Evans, R. W., Manninen, D. L., Garrison, L. P., et al.,

The Treatment of End-Stage Renal Disease in the

U.S.: Selected R“ndings From the National Kidney

DiaJysis and Kidney Transplantation Study (Seattle, WA: Battelle Human Affairs Research Centers,

1985).

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prepared by contract to the University of Rochester for the Office of Technology Assessment, U.S.

Congress, Washington, DC, March 1986.

14. Halper, T., “Life and Death in a Welfare State: EndStage Renal Disease in the United Kingdom,” Health

and Society 63:52-93, 1985.

15. Hellerstedt, W .L., Johnson, W .J., Ascher, N., et al.,

“Survival Rates of 2,728 Patients With End-Stage

Renal Disease,” Mayo Clinic Proceedings 59:776-

783, 1984.

16. Husebye, D.G., and Kjellstrand, C. M., “Old Patients

Uremia: Rates of Acceptance to and Withdrawal

From Dialysis,” presented in part of the meeting

of the Central Society for Clinical Research, Chicago, IL, October 1986; accepted for publication

by the International Journal of Artificial Organs,

December 1986.

17. Zn re Spring, 380 Mass. 629,405 N.E.2d 115 (1980).

18. Karnofsky, D.A., and Burchenal, J. H. K., “The Clinical Evaluation of Chemotherapeutic Agents in Cancer,” Evaluation of Chemotherapeutic Agents, C.M.

MacLeod (cd.) (New York, NY: Columbia University Press, 1949).

19. Kerr, D. N. S., “Renal Dialysis: Techniques and Clin-
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ical Applications,” The Oxford Compam”on to Medicine, J. Walton, P.B. Beeson, and R.B. Scott (eds.)

(Oxford, England: oxford University Press, 1986).

20. Kilner, J.F., “Selecting Patients When Resources Are

Limited: A Study of U.S. Renal Directors,” American Journal of Public Health (in press).

21. Kjellstrand, C., Koppy, K., Umen, A., et al., “Hemodialysis of the Elderly,” Proceedings of the international Sjvnposium of Geriatn”c Nephrofogy, Toronto

1985, D.G. Oreopolous (cd.) (The Hague: Martinus

Nijhoff, 1986).

22. Kjellstrand, C. M., Pru, C. E., Jahnke, W. R., et al.,

“Acute Renal Railure,” Replacement of Rena] Function by Dialysis, W. Drukker, F.M. Parsons, and J.F.

Maher (eds.) (Boston, MA: Martinus Nijhoff, 1983).

23. Kunin, C. M., “Renal Disease,” Maxy-l?osenau Public Health and Preventive Medicine, J.M Last (cd.)

(Norwalk, CT: Appleton-Century-Crofts, 1986).

24. Lowrie, E. G., and Hampers, C. L., “The Success of

Medicare’s End-Stage Renal Disease Program,” New

England Journal of Medicine 305(8):434-438, 1981.

25. Moskop, J. C., “The Moral Limits to Federal Funding for Kidney Disease, ” Hastings Center Report

17(2):11-15, 1987.

26. Murphy, S.P., “Factors Influencing Adjustment and

Quality of Life of Hemodialysis Patients: A Multivariate Approach,” Doctoral Dissertation, University

of Illinois, Chicago, IL, 1982.

27. Neu, S.C., and Kjellstrand, C., “Stopping Long-Term

Dialysis: An Empirical Study of Withdrawal of LifeSupporting Treatment,” New England Journal of

Medicine 314:14-20, 1986.

28. Paris, J.J., “Death, Dying, and the Courts: The Travesty and Tragedy of the Earle Spring Case, ” h“nacre

Quarterly 49:26-41, 1982.

29. Rettig, R., and Marks, E. L., Implementing the EndStage Renal Disease Program of Medicare, HCFA

Pub. No. 03085, Office of Research, Demonstrations

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Office, March 1981).

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Assessment, U.S. Congress (Washington, DC: U.S.

Government Printing Office, December 1984).

31. Schultz, K.O., and Powers, M.J., “Adjustment of

Older Patients to Hemodialysis,” Dialysis and Transplantation 16(5):234-241, 1987.

32. Scribner, B.H., “Circulatory Access—Still a Major

Concern,” Proceedings of the European Dialysis

and Transplant Association 19(95):7-9, 1982.

33. Shapiro, F.L., and Umen, A., “Risk Factors in Hemo34,

35<

36,

37,

38<

39,

40!

dialysis Patient Survival, ’’American Society of Artificial Internal Organs Journal 6:176-189, 1983.

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U.S. Congress (Washington, DC: U.S. Government

Printing Office, September 1985).

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Institutes of Heahh: Characteristics of Participants

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MD: EMMES Corp., 1985).

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Under Final Reconciliation Bill,” Technology Reimbursement Reports, p. 3, Oct. 24, 1986.

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Data Management and Strategy, Research Report:

End-Stage Rena] Disease, 1984 (Washington DC:

U.S. Government Printing Office, 1986).

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Data Management and Strategy, Research Report:

End-Stage Renal Disease, 1985 (Washington, DC:

US. Government Printing Office, in press, 1987).

41. U.S. Department of Health and Human Services,

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Data Management and Strategy, HCFA Weekly

Health Insurance Merge Record, 1987.

42. U.S. Department of Health and Human Services,

Health Care Financing Administration, Bureau of

Data Management and Strategy, Office of Statistics and Management, Data from ESRD Facility Survey 1980-85.

43. U.S. Department of Health and Human Services,

Health Care Financing Administration, Bureau of

Data Management and Strategy, Office of Statistics and Management, ESRD Facility Survey, (preliminary figures), 1987.

44. U.S. Department of Health and Human Services,

Health Care Financing Administration, Bureau of

Data Management and Strategy, personal communication, June 1987.

45. U.S. Department of Health and Human Services,

Health Care Financing Administration, Bureau of
Ch. 7—Dialysis for Chronic Renal Failure . 271

Data Management and Strategy, Program Management and Medical Information System data, 1987.

46. U.S. Department of Health and Human Services, 48

Health Care Financing Administration, Bureau of

Data Management and Strategy, Office of Statistics and Management, Division of Information AnalActuary, Annual Report of the Board of Trustees,

1987.

University of Arizona Health Sciences Center, Department of Internal Medicine, Section on Renal

Disease, Policy on Criteria for Patient Selection, January 1984.

ysis, ESRD Systems Branch, End-Stage Renal Dis- 49. Westhe, L., Umen, A., Nestrud, S., et al., “Mortalease Patient Profile Tables, Baltimore, MD, 1985. ity, Morbidity, and Life Satisfaction in the Very Old

47. U.S. Department of Health and Human Services, Dialysis Patient ,“ Transactions of the American SoHealth Care Financing Administration, Office of the ciety of Artificial Interna] Organs 30:21-30, 1984.
Chapter 8

Nutritional Support

and Hydration
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . .. ....275

Perspectives on Nutritional Support

and Hydration . . . . . . . . . . . . . . . . . . . . .275

The Debate About Withholding and

Withdrawing Nutritional Support

and Hydration . . . . . . . . . . . . . . . . . . . . .275

The Perspective of Nutritional Support

Specialists . . . . . . ...................277

Special Considerations in the Use of

Nutritional Support for Elderly

Patients . . . . . . .....................277

Description of Nutritional Support and

Hydration. . .......................27 8

The Need for Nutritional Support and

Hydration. . . . . . . . . . . . . . . . . . . . . ....278

Techniques for Nutritional Support and

Hydration . . . . . . . . . . . . . . . . . . . . . . . . .280

Clinical Research Issues Related to the

Use of Nutritional Support and

Hydration for Elderly Patients . . . . . . ..287

Federal Funding for Research on

Nutritional Support for Elderly

People. . . . . . . . . . . . . . . . . . . . . . . .. ...292

Professional Training and Expertise in

Nutritional Support. . ...............292

Utilization and Cost of Nutritional Support

and Hydration . . . . . . . . . . . . . . . . . . . . .293

Utilization and Cost of Nutritional

Support and Hydration in Hospitals ...293

Utilization and Cost of Nutritional

Support and Hydration in Nursing

Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . .297

Utilization and Cost of Nutritional

Support and Hydration in the Patient’s

Home . . . . . . . . . . . . . . . . . . . . . .......300

Making Decisions About Nutritional

Support and Hydration. . . ...........305

Legal and Ethical Considerations in

Decisions About Nutritional Support

and Hydration . . . . . . . . . . . . . . . . . . . . .305

Page

Making Decisions About Nutritional

Support and Hydration in Hospitals ...311

Making Decisions About Nutritional

Support and Hydration in Nursing

Homes. . . . . . . . . . . . . . . . . . . . . . . .. ...312

Making Decisions About Nutritional

Support and Hydration for Patients

at Home . . . . . . . . . . . . . . . . . . . . . . . . . .316

Findings and Implications. . . ............318

Chapter preferences . .................32 1

Box

BOX NO. Page

8-A. Court Cases Involving Withholding or

Withdrawal of Nutritional Support

and Hydration . . . . . . . . . . . . . . . . . . . .306

Figures

Fig. No. Page

8-1. Tube Feeding Routes . ..............281

8-2. A Typical TPN Catheter Placement .. .285

8-3. Survival of Albany Medical Center

Patients on Home TPN With Malignant

and Nonmalignant Disease. . . . . . . . . . .302

Tables

Table No. Page

8-1. Tube Feeding Techniques: Placement,

Indications for Use, and Associated

Risks. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282

8-2. Standard TPN Formula for a 70-kg

Adult . . . . . . . . . . . . . . . . . . . . . .......284

8-3. Persons Receiving Nutritional Support

by Location and Type of Therapy,

All Ages, 1984 . . . . . . . . . . . . . . . . .. ...294

8-4. Source of Payment for Parenteral

and Enteral Nutrition, All Ages, All

Settings, United States, 1984.........296
Chapter 8

Nutritional Support and Hydration

INTRODUCTION

Nutritional support and hydration are the most

controversial of the life-sustaining technologies

discussed in this report. Most recent court cases

concerning life-sustaining technologies involve nutritional support and hydration, and decisions

about withholding or withdrawing these technologies evoke a strong response in many people.

Nutritional support can be provided by either

of two methods:

●

●

For

enteral or tube feeding procedures in which

nutrients and water are infused into the patient’s stomach or intestine via tubes, ] or

parenteral feeding procedures that include

any method other than enteral but are primarily intravenous procedures in which nutrients and water are infused into the patient’s

veins via catheters.

people who are unable to swallow, digest, or

absorb adequate amounts of food and fluids taken

by mouth, these procedures can be life-sustaining.

Total parenteral nutrition (TPN)-an intravenous

procedure that supplies sufficient nutrients to

maintain a person’s normal weight and growth

for a prolonged period—was first demonstrated

in the late 1960s, and its use has increased dramatically in the past decade. The use of tube feeding has also increased as a result of improvements

in materials and formulas and increased interest

1Enteral nutrition is sometimes defined to include oral nutritional

supplements, but in this report, the term “enteral” refers only to

tube feeding.

in nutritional support in general due to the development of TPN (54).

Without questioning the value of nutritional support procedures in general, this chapter addresses

four questions about their use for some elderly

people:

●

●

●

●

Are they used inappropriately for some terminally ill or severely debilitated elderly people for whom they may simply prolong suffering?

Are they denied to elderly people who would

benefit from them?

How are decisions made about their use, and

what role do the patient and family have in

the decisionmaking process?

What is the quality of nutritional support

treatments for elderly patients?

Answers to these questions require a synthesis

of information from three perspectives that are

described below: 1) the ongoing debate about withholding and withdrawing nutritional support and

hydration that has been the province of legal and

ethical scholars but increasingly involves health

care providers and the public; 2) the medical specialty, clinical nutrition, that is the province of nutritional support specialists-physicians, dietitians,

nurses, and pharmacists who provide nutritional

support; and 3) the growing field of aging and nutrition that is primarily the province of research

clinicians. This chapter draws from all three perspectives as they relate to treatment decisions for

elderly people.

PERSPECTIVES ON NUTRITIONAL SUPPORT AND HYDRATION

The Debate About Withholding and cal issues involved in withholding and withdrawWithdrawing Nutritional Support ing these procedures have been publicly debated

and Hydration only in the past few years. Several factors may

account for this change. Increased use of the proAlthough physicians have made decisions about cedures has resulted in greater public awareness

withholding and withdrawing nutritional support of the decisionmaking dilemmas they sometimes

and hydration for many years, the legal and ethi- raise. Since the procedures are covered by Medi275
276 . Life-Sustaining Technologies and the Elderly

care and Medicaid for many patients, their increased use has also led to concerns about increased public expenditures. Media coverage of

court cases involving nutritional support has also

resulted in greater public awareness of decisionmaking dilemmas. In recent years, there has been

increasing debate about withholding and withdrawing other life-sustaining technologies, such

as dialysis, resuscitation, and mechanical ventilation, and some people think that the current focus on nutritional support is just the next step

in this progression. Finally, it has been suggested

that since nutritional support and hydration are

the only procedures keeping some comatose and

severely debilitated patients alive, the current debate may reflect a realization that stopping them

is perhaps the only way to allow these patients

to die (42,205).

People tend to have intense and divergent beliefs about the appropriateness of withholding and

withdrawing nutritional support and hydration.

Some people believe that these procedures should

almost never be withheld or withdrawn from any

patient. Others believe equally strongly that they

can and should be withheld from some terminally

ill, comatose, and/or severely debilitated patients.

Although such patients are often elderly, the debate about withholding and withdrawing nutritional support and hydration is by no means restricted to elderly people.

One point of disagreement in the debate is

whether tube and intravenous nutrition and

hydration should be considered medical interventions (like the other life-sustaining technologies

discussed in this report) or basic supportive or

nursing care. People who consider them medical

interventions usually argue that they can be withheld or withdrawn in some cases. People who consider them basic supportive or nursing care often

argue that they should be withheld or withdrawn

only from patients whose death is imminent or

for whom it is not medically possible to provide

them.

Another point of disagreement in the debate is

whether withholding or withdrawing nutritional

support and hydration from a terminally ill or severely debilitated patient is killing or merely allowing the patient to die. Some people argue that

since all human beings must have food and water

to survive, withholding or withdrawing tube or

intravenous nutrition and hydration is tantamount

to killing the patient. Others argue that withholding or withdrawing them simply allows death to

occur as a result of the patient’s underlying illness.

A third point of disagreement concerns patient

suffering. Some people emphasize patient suffering caused by malnutrition, starvation, and dehydration.’ Others emphasize patient suffering

associated with aspects of tube or intravenous

feeding procedures (e.g., insertion of the tube or

catheter or physical restraints that may be used

to keep the patient from pulling it out) and suffering related to the continuation of life for patients

with intractable pain, severe disability, or very

poor quality of life.

A confounding factor in the debate about withholding and withdrawal is the symbolic nature

of nutritional support and hydration. Giving food

and water is a fundamental aspect of caring for

another person, as reflected in the cultural, religious, and moral traditions of our society and the

earliest relationship of parent and child. Failure

to provide food and water-even when it requires

tube or intravenous procedures—is deeply troubling for many people (45).

For this and other reasons, some ethicists who

believe that it is sometimes permissible to withhold or withdraw other life-sustaining interventions are hesitant or opposed to ever withdrawing nutritional support and hydration (42,131,192).

Some health care professionals share these attitudes. A study of physicians, nurses, and social

workers who care for elderly patients (231) found

that, on average, individuals in each profession

were more uncomfortable about withholding tube

feeding and intravenous hydration than resuscitation, antibiotics, and other life-sustaining treatments.

The debate about withholding and withdrawing nutritional support and hydration is not over.

It remains a difficult dilemma with important clin-

‘Malnutrition is any disorder of nutrition due to unbalanced or

insufficient diet or defective assimilation or utilization of nutrients.

Starvation is long, continuous deprivation of food. Dehydration is

the loss of body water in excess of intake and may be due to decreased intake or increased loss (25).
Ch. 8.–Nutritional Support and Hydration • 277

ical, legal, ethical, financial, and political aspects.

This chapter does not attempt to resolve the debate but rather presents information about the

procedures and the factors that affect decisions

about their use.

The Perspective of Nutritional

Support Specialists

Nutritional support specialists focus on clinical

aspects of the procedures. They emphasize the

positive, therapeutic, and sometimes life-saving

effects of nutritional support and hydration and

point out that treatment decisions for most patients do not involve complex legal and ethical considerations. In the view of some nutritional support specialists, the most serious concern about

the procedures is not questions about withholding and withdrawal but rather problems that restrict their use, including lack of awareness of

their therapeutic potential and limited third-party

reimbursement.

The debate about withholding and withdrawal

focuses on patients who are terminally ill, comatose, or severely debilitated. In contrast, nutritional support specialists focus primarily on patients who are critically ill or physically unable

to swallow, digest, or absorb food or fluids taken

by mouth. This difference in focus partially explains differences in attitudes toward the procedures. It is important to note, however, that the

two groups of patients are not mutually exclusive, and some patients-e.g., severely debilitated

patients who are also critically ill and terminally

ill patients who cannot swallow, digest, or absorb

food or fluids taken by mouth-can correctly be

placed in both groups. In fact, some of the most

difficult decisions about nutritional support and

hydration concern precisely those patients.

The difficulty of determining which patients are

terminally ill—a problem that is noted throughout this report—may be of particular concern in

decisions about the use of nutritional support and

hydration. Health care providers and others differ in their awareness of the potential therapeutic effects of these procedures. Thus, nutritional

support specialists, who are particularly aware

of the relationship between disease, nutritional

status, and treatment outcome, may sometimes

correctly classify patients as critically ill but potentially responsive to treatment, when other

health care providers, families, and others may

incorrectly believe that the same patients are terminally ill.

The meaning of the term “responsive to treatment” is often unclear in discussions about nutritional support and hydration. While some people

consider all patients who are kept alive by nutritional support as responsive to treatment, others

say that some comatose, terminally ill, and severely

debilitated patients are not responsive to treatment and that their dying has merely been prolonged. Depending on the viewpoint of the observer, therefore, the same patients could be

considered either responsive or not responsive

to treatment.

Careful use of the terms “responsive to treatment,”” critically ill, ““terminally ill)” “comatose)”

and “severely debilitated,” is particularly important, though frequently lacking, in debate about

nutritional support and hydration (88,111). The

uncertainties involved in defining the terms and

classifying individuals in these categories, however, must be recognized.

Special Considerations in the Use of

Nutritional Support for Elderly

Patients

A large proportion of the people receiving nutritional support and hydration are elderly, but

there has been relatively little attention to the special needs of elderly patients. Changes in body

composition, metabolism, and nutritional requirements associated with normal aging are documented

in a growing volume of research (55,140,213). Yet

little is known about adjustments in nutritional

formulas or techniques that may be needed for

elderly people and possible differences in the efficacy of these procedures for younger v. older

people.

Assessment of nutritional status of elderly people may be difficult because many assessment

techniques used with younger people rely on physiological characteristics that are affected by aging.

Yet nutritional standards for the elderly have not

been established. Without agreed upon standards,
278 Ž Life-Sustaining Technologies and the Elderly

it is difficult in some cases to determine whether

nutritional support is needed.

Several other problems complicate decisions

about nutritional support and hydration for elderly patients. A significant but unspecified number of elderly people on nutritional support are

confused. Such patients may be unable to participate in decisionmaking. Moreover, because confused patients often try to pull out feeding tubes

or catheters, a decision to use nutritional support

may imply that physical restraints will also be required, It is also particularly difficult to determine

whether severely confused patients are suffering as a result of treatment or, conversely, lack

of treatment.

Some elderly patients who receive nutritional

support, including many of the confused individuals described above, are nursing home residents.

Treatment decisions for these patients are complicated by the fact that some nursing homes are

not adequately staffed to provide the skilled care

that nutritional support patients need. Each of

these problems is discussed at greater length in

this chapter.

DESCRIPTION OF NUTRITIONAL SUPPORT AND HYDRATION

The Need for Nutritional Support

and Hydration

People who do not take in adequate amounts

of food and fluids will eventually die of malnutrition and dehydration or complications of these

conditions. Malnutrition is a disorder caused by

inadequate intake of calories, protein, carbohydrates, fats, vitamins, minerals, trace elements,

or any combination thereof. The effects of malnutrition depend on its severity and duration and

which specific nutrients are lacking. In general,

however, the effects include weight loss, listlessness, and depression; decreased ability to resist

infection, to recover from illness, and to withstand

surgery or other treatments; impaired wound

healing; decreased cardiac and respiratory muscle strength, confusion, coma, and eventual death

(115,139,143,203).

Dehydration, the loss of body water in excess

of intake, is caused by decreased fluid intake or

inability to conserve fluids as a result, for example, of renal disease or severe diarrhea. Dehydration results in dry mucous membranes; decreased

sweat, saliva, and tears; muscle weakness, rigidity, or tremors; confusion, hallucinations, and

delerium; abnormal respiration; coma; and eventual death, Reduced body water also alters the

concentration of electrolytes such as sodium and

potassium, with severe and sometimes life-threatening consequences (210).

People with a variety of conditions are at risk

of malnutrition and dehydration. Although some

conditions that cause malnutrition or dehydration

occur more often in elderly people than younger

people, none is unique to elderly people,

People who are physically unable to swallow,

digest, or absorb food and fluids taken by mouth

are at obvious risk of malnutrition and dehydration. This group includes:

● people who are comatose;

• people who are physically unable to swallow;

● people who have an obstruction of the gastrointestinal tract;

● people who are unable to eat following gastrointestinal surgery; and

● people with acute or chronic diseases that

cause inability to digest or absorb nutrients.

Without tube or intravenous feeding and hydration, such people will become increasingly malnourished and dehydrated. As their immune function is reduced, they may die from infections

before death can occur from malnutrition or dehydration.

Critically ill patients who are physically able to

swallow, digest, and absorb at least some food and

fluids taken by mouth may also be at risk of malnutrition and dehydration. Malnutrition in some

critically ill patients is caused by anorexia (decreased appetite) associated with certain diseases,

such as cancer. In addition, many acute and

chronic diseases and treatments such as surgery

increase the body’s requirements for nutrients;

if intake is not increased correspondingly, malnutrition can develop rapidly (115).
Ch. 8.—Nutritional Support and Hydration . 279

Some people are malnourished and dehydrated

prior to becoming critically ill. Their malnutrition

and dehydration may be due to physical, psychological, or social factors that affect their eating

habits, i.e., poor dental status, decreased mobility, social isolation, confusion, poverty, or depression (53,75,137). Moreover, it is likely though not

proven, that nutritional reserve capacity decreases

as people age. As a result, elderly people may be

more susceptible than younger people to malnutrition when their dietary intake is decreased (115).

Critically ill patients who are malnourished can

be given oral nutritional supplements if they are

able to swallow, digest, and absorb adequate

amounts of food and fluids taken by mouth. If

not, such patients require tube or intravenous

feeding.

People who are too weak to feed themselves or

who have neurological diseases that make them

unable or unwilling to feed themselves are also

at risk of malnutrition and dehydration. Most of

these people can be hand fed. Hand feeding is timeconsuming, however, and it has been alleged that

some hospitals and nursing homes use tube feeding because sufficient staff time cannot be allocated to hand feeding. The use of tube feeding

for this reason is generally frowned on, and there

are no data to indicate whether or how often it

occurs.

Photo credit: Gretchen Kolsrud

A nursing assistant hand feeds a severely debilitated

elderly patient

Little is known about elderly people who do not

feed themselves and refuse hand feeding or about

people who eat too little to live. For the woman

in the case just cited, encouragement, supportive

listening, and a comprehensive medical examination may provide some clues about a solution to

the problem. If that fails, there are only two

choices—tube or intravenous feeding against the

patient’s will or gradually worsening nutritional

status and eventual death.
280 ● Life-Sustaining Technologies and the Elderly

Techniques for Nutritional Support

and Hydration

All nutritional support specialists that OTA consulted in the preparation of this report stressed

that tube and intravenous procedures are only

part of a range of nutritional support options that

also includes well-planned meals and oral nutritional supplements. The following discussion focuses on tube and intravenous procedures because they are the subject of clinical, legal, and

ethical debate and raise the most difficult treatment questions.

In general, tube feeding is used when the patient’s gastrointestinal tract is capable of digesting and absorbing food normally. Intravenous

techniques are used when the gastrointestinal

tract is blocked or when disease interferes with

digestion and absorption of food and fluids.’ The

nutritional support techniques described below

are used for patients of all ages. Few adjustments

have been made in devices, techniques, or formulas for elderly people. The procedures are described in some detail, because debate about their

use often centers on questions about whether they

are medical interventions or basic supportive or

nursing care and whether their use entails patient suffering.

Tube Feeding Technicpes and

Associated Risks

Feeding tubes are placed through the patient’s

nose or a surgical opening into the gastrointestinal tract. Different tube feeding routes are illustrated in figure 8-1. Table 8-1 describes placement

procedures, indications for use, and associated

risks of each.

Rapid infusion of enteral formulas into the gastrointestinal tract can cause regurgitation, aspiration, vomiting, or diarrhea. Conversely, very

slow infusion can result in inadequate nutrition

and hydration. In the past, the usual method of

infusion was bolus feeding in which the formula

is administered in a single dose using a large syr3Both tube and intravenous techniques are sometimes referred

to as hyperdhnentation, a term that is not used in this report.

inge. For many patients, this method causes diarrhea and other symptoms associated with too

rapid infusion (44)176). Another method is gravity drip, in which the formula container is hung

above the patient and a regulator clamp controls

the flow rate. With gravity drip, hourly monitoring of the flow rate by a nursing attendant, family member, or the patient is necessary (155). Even

hourly monitoring may be insufficient, however,

since flow rate using the gravity drip method can

change by as much as 50 percent in an hour (92).

Enteral feeding pumps assure a uniform infusion rate and lessen the problems associated with

too rapid or too slow infusion. Pumps are not always used, however, sometimes because of lack

of third-party reimbursement.

Most enteral formulas are bought premixed, although slenderized table food is sometimes used.

Premixed formulas vary from those with standard ingredients to those with a defined chemical

composition tailored to a specific metabolic disorder. No enteral formulas have been developed

specifically for elderly people, although some nutritional support specialists and formula manufacturers are considering developing such formulas (58).

Special formulas for patients with kidney, liver,

and respiratory diseases are used for some elderly

patients with these diseases. Clinicians disagree,

however, about the merits of special formulas (33).

Industry representatives have told OTA that some

hospitals that were buying special formulas prior

to 1983 are now buying more of the standard formulas that are significantly cheaper, probably as

a result of cost~ontainment measures imposed

by Medicare and other third-party payers (113).

Recently developed modular formulas allow the

combination of individual nutrients to meet the

specific needs of each patient and offer an alternative to premixed formulas. Some experts are

optimistic about the use of these formulas for critically ill patients (33). others believe that they will

not be widely used because of the staff time required for mixing them and because of the availability of a large variety of premixed formulas (92).

Enteral formulas provide an excellent medium

for proliferation of bacteria that can cause diar-
Ch. 8.—Nutritional Support and Hydration ● 281

Figure 8-1.—Tube Feeding Routes

Nasogastric tubes are placed through

the nose, down the esophagus, and

into the stomach.

Nasoenteral tubes are placed through

the nose, down the esophagus, through

the stomach, and into the duodenum

(first loop of the small intestine) or jejunum (second loop of the small intestine).

Pharyngostomy and esophagostomy

tubes are placed through the neck, into

the throat or upper esophagus, and

into the stomach.

Gastrostomy tubes are placed through

the abdomen into the stomach. -

Jejunostomy tubes are placed through

the abdomen into the small intestine.

SOURCE: Adapted from Ross Laboratories, Tube (Columbus, Ohio, 1980) reprinted with permission.

rhea, enteritis, and bacteremia (3,15,47,76,183). manufacture or marketing of enteral formulas.

Enteral infusion times range from 1 to 24 hours

a day. If the formula is infused over many hours,

special equipment must be used to protect it from

airborne contaminants and to keep it cool in order to limit the growth of any organisms (155).

Beyond the Food and Drug Administration’s

basic “food manufacturing procedure” requirements, there are no Federal regulations for the

The number of companies that manufacture these

formulas has increased greatly in the past few

years. Claims made for specific formulas by manufacturers are frequently not documented, and

there are no regulatory mechanisms to ensure the

safety, quality, or suitability of formulas for their

intended use, In contrast, infant formulas are

highly regulated. Although beyond the scope of

this report, a thorough review of the safety and
282 ● Life-Sustaining Technologies and the Elderly

quality concerns related to these products is

needed.

Nasogastric tubes are used much more often

than any other enteral procedure, In one New Jersey hospital, for example, 89 percent of tube-fed

Table 8-1.-Tube Feeding Techniques:

Placement, Indications for Use, and Associated Risks

Nasogastric tubes may be placed by a physician, another

health care professional, the patient, or a trained family member. The position of the tube must be tested before each feeding, because the tube can be mistakenly placed in the patient’s

lungs; if food or fluids are put in the tube while it is in the

patient’s lungs, severe respiratory distress will occur, potentially causing death. Other risks of nasogastric tube feeding

include irritation of the nose, throat, and esophagus, and aspiration, a condition caused by regurgitation of the stomach

contents into the lungs.

Nasoenteral tubes are usually placed by a physician or a specially trained nurse and must be tested every few days by

a trained health care professional or by X-ray. These tubes

are recommended for short-term use in patients for whom

regurgitation and aspiration are likely or whose stomach or

upper intestinal functions are impaired.

Potential problems include the difficulty of passing the tube

through the pylorus (the small opening at the lower end of

the stomach) and laceration of the pylorus or other parts of

the gastrointestinal tract if the tube is removed too rapidly.

In addition, feeding into the duodenum and jejunum tends

to cause diarrhea.

Pharyngostomy and esophgostomy tubes must be surgically

placed by a physician. Esophagostomy tubes are seldom

used now. Pharyngostomy tubes are recommended for longterm use because they do not irritate the nose and throat like

nasogastric and nasoenteral tubes. Potential problems include aspiration, scarring of the insertion site, and swallowing difficulty.

Gastrostomy tubes are placed by one of two methods. Surgical placement, that is always by a physician, is done with

a local, spinal, or general anesthetic. A newer method, percutaneous endoscopic placement, does not require surgery

or general anesthetic. Gastrostomy tubes are recommended for long-term use and when swallowing is impaired as a

result of obstruction or neurological disease.

Potential problems include aspiration, skin irritation around

the tube site, and displacement of the tube into the abdominal cavity. In addition, the small balloon that is sometimes

used to hold the gastrostomy tube in place can obstruct the

pylorus and interfere with gastric emptying.

JeJunostomy tubes are surgically placed. These tubes are

recommended for long-term use or when there is a problem

with gastric emptying or regurgitation. Potential risks include

skin irritation around the tube site, clogging, displacement

of the tube, and diarrhea.

SOURCE: Adapted from Oley Foundation, “Nutritional Support and Hydration for

Critically and Terminally Ill Elderly,” prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, November 1985.

patients had nasogastric tubes (185). One reason

for the relatively wide use of nasogastric tubes

is that physicians generally consider such tubes

“noninvasive,” meaning they do not require surgery and can be inserted by a person with little

training. Often in the context of ethical and legal

debate, nasogastric tubes are similarly referred

to as “noninvasive.” In this context, the term noninvasive often seems to suggest that nasogastric

tubes are not burdensome. From the patient’s

point of view, however, they can be burdensome,

as discussed below.

Nasogastric tubes are recommended for shortterm use. Yet many elderly patients, especially

those in nursing homes, are fed through nasogastric tubes for prolonged periods, up to several

years. Alternatives to nasogastric tubes for longterm use are pharyngostomy, gastrostomy, and

jejunostomy tubes. Although use of these tubes

is “invasive” in the sense that at least minimal surgery is required, and each entails risks for the

patient, many physicians suggest that they are

more comfortable for long-term use than nasogastric tubes and that confused patients are less likely

to try to pull them out (39,123,125,129,202). Research is needed to evaluate these alternatives in

terms of patient comfort and potential risks, especially for confused patients who need long-term

nutritional support.

Photo credit: Robert B. Gilsldorf, M.D.

For long-term use, a pharyngostomy tube, as shown

here, may be more comfortable than a feeding tube that

passes through the patient’s nose.
Ch. 8.—Nutritional Support and Hydration . 283

The Patient’s Experience

of Tube Feeding

The patient experience of tube feeding varies

greatly depending on the type of tube and the patient’s physical and mental condition. Insertion

of a nasogastric or nasoenteral tube is uncomfortable for many conscious patients who gag as the

tube is put down the throat. For confused patients,

insertion of the tube can be frightening and frequently requires that the patient be physically restrained (121)125). Insertion of pharyngostomy,

esophagostomy, gastrostomy, and jejunostomy

tubes generally requires surgery that is frightening for some patients and entails some postsurgical discomfort.

Nasogastric and nasoenteral tubes can cause irritation of the nose and throat and difficulty swallowing (125,129,137,187,223). Some patients and

families object to the appearance of the tube in

the nose. However, patients are able to talk, and

some can eat or drink small amounts by mouth

depending on their physical condition (176). Feeding tubes are generally left in place between feedings, but some patients learn to insert a nasogastric tube themselves, and they may insert and

remove it for each feeding.

Many patients who require short-term tube

feeding are critically ill and are undergoing concurrent medical treatments, all of which cause

varying degrees of discomfort. For them tube feeding may be no more burdensome than the other

interventions. Some patients may be so sick that

they are only partially aware (if at all) of the feeding tube.

Many elderly patients who receive long-term

tube feeding are confused, so it is difficult to determine how they feel about the treatment. Confused patients often try to pull out feeding tubes,

especially nasogastric tubes. Some observers believe this behavior indicates that the tube is irritating. Others believe that these patients are too

confused to notice the tube and that pulling at

it is just restless, meaningless behavior that is characteristic of some confused patients. In many hospitals and nursing homes, patients who pull out

their feeding tubes have their hands put in mittens and tied to the sides of their bed or chair

to prevent the behavior (118,121,125). Although

anecdotal evidence suggests that this practice is

widespread, there are no data on the percentage

of tube fed patients who are physically restrained.

Intravenous Feeding Techniques

and Associated Risks

The most commonly used intravenous feeding

techniques are: 1) total parenteral nutrition (TPN),

in which a formula capable of maintaining the patient nutritionally for a prolonged period is infused into a vein—usually a large, central vein in

the patient’s chest; and 2) the well-known intravenous procedure in which water, saline or glucose solutions, and medications are infused into

Photo credit: Oley Foundation

This hospital patient who is receiving nasogastric tube

feeding is also able to eat small amounts of

food normally.
284 ● Life-Sustaining Technologies and the Elderly

a small, peripheral vein—usually in the patient’s

arm. The nutrients that can be provided by the

latter method are inadequate to sustain life for

prolonged periods, although the procedure is frequently used to maintain hydration in critically

and terminally ill patients and others. The following discussion refers only to TPN.

TPN catheters are usually placed in large, central veins, because most TPN formulas are highly

concentrated and can cause inflammation, occlusion, or clotting in small veins with low blood flow.

In high-flow, central veins, the TPN formula is rapidly diluted (72). Figure 8-2 shows a typical TPN

placement.

For TPN, a constant and accurate infusion rate

is critical, and a variety of pumps are currently

available with special features including a battery

to ensure that power failure does not interrupt

infusion and alarm devices to warn nursing attendants or patients about air in the catheter or

occlusions (i.e., resistance to flow that could mean

a kink in tubing or a clot) (155).

TPN formulas are individually mixed to match

the nutrient and fluid requirements of the patient

and modified as the patient’s needs change. Laboratory tests are used to monitor the accuracy

of the formula. Table 8-2 presents a standard formula. This formula would be modified, for example, for a patient with renal failure to restrict sodium, potassium, magnesium, and phosphorus—

minerals whose excretion is defective in renal impairment (155). For most elderly patients, the volume of fluid, 3 liters in table 8-2, should be decreased (50).

TPN patients of all ages are highly susceptible

to infection because of malnutrition and acute and

chronic diseases. In addition, some TPN formulas

provide an ideal growth medium for certain contaminating organisms, and TPN catheters are often

left in place for a prolonged period. These factors create a serious risk of catheter-related infection (26,111,155). Some research indicates that

such infections occur more often among TPN patients over 60 than those under 60, but one prospective study found no relationship between patient age and incidence of such infections (26,196).

Sterile techniques for mixing the formula, setting up the infusion system, and maintaining the

catheter are essential (26,57,111,155). Incidence

of catheter-related infections has decreased in the

past 15 years because of the use of sterile techniques (61). Nevertheless, these infections have

been the primary reason for rehospitalization of

patients on TPN at home in each year for which

information is available (1979 to 1983) (149,150,

151)152,153),

Other potential complications of TPN are mechanical problems with insertion and maintenance

of the catheter and metabolic problems related

to the formula. Isolated cases of death due to air

entering the veins via a TPN catheter have also

been reported (134). For long-term TPN patients,

micronutrient deficiencies are frequently a problem (155).

Table 8.2.—Standard TPN Formula (24 hours)

for a 70-kg Adult

Fluid ... , . . . . . . . . . . . . . . . . . . . . 3 liters

Protein (amino acids) . . . . . . . . 0.2 to 0.3 g nitrogen/kg

Calories a 

. . . . . . . . . . . . . . . . . . . 25 to 40 kcal/kg

Essential fatty acids (lipids) . . 2°/0 of total calories

Electrolytes:

Sodium . . . . . . . . . . . . . . . . . . . . 100 mEq

Potassium . . . . . . . . . . . . . . . . . . 100 mEq

Chloride. . . . . . . . . . . . . . . . . . . . 130 mEq

Acetate/gluconate . . . . . . . . . . . 90 mEq

Calcium . . . . . . . . . . . . . . . . . . . . 15 mEq

Magnesium . . . . . . . . . . . . . . . . . 20 mEq

Phosphorus . . . . . . . . . . . . . . . . 300 mg

Trace Elementsb

:

Zinc . . . . . . . . . . . . . . . . . . . . . . . 5 mg

Copper. . . . . . . . . . . . . . . . . . . . . 1.5 mg

Iodine . . . . . . . . . . . . . . . . . . . . . 120 μg

Selenium . . . . . . . . . . . . . . . . . . . 100 μg

Chromium . . . . . . . . . . . . . . . . . . 15 μg

Manganese . . . . . . . . . . . . . . . . . 2 mg

Vitamins:

Ascorbic acid . . . . . . . . . . . . . . . 100 mg

Thiamine . . . . . . . . . . . . . . . . . . . 3 mg

Riboflavin . . . . . . . . . . . . . . . . . . 3.6 mg

Niacin . . . . . . . . . . . . . . . . . . . . . 40 mg

Pantothenic acid . . . . . . . . . . . . 15 mg

Pyridoxine. . . . . . . . . . . . . . . . . . 4 mg

Biotin . . . . . . . . . . . . . . . . . . . . . . 60 μg

Folic acid . . . . . . . . . . . . . . . . . . 400 μg

Cobalamin. . . . . . . . . . . . . . . . . . 5 μg

Vitamin A . . . . . . . . . . . . . . . . . . 4,000 I.U.

Vitamin D . . . . . . . . . . . . . . . . . . 400 I.U.

Vitamin E . . . . . . . . . . . . . . . . . . 15 mg

Vitamin K . . . . . . . . . . . . . . . . . . 200 μg

aprovldetj principally as dextrose.

blron may be added to the formula at 1 to 3 mg per day or 91ven by mouth or

Intermuscularfy.

SOURCE: Oley Foundation, “Nutritional Support and Hydration for Critically and

Terminally Ill Elderly,” prepared for the Office of Technology Assessment, U.S. Congress, Washington DC, November 19S5.
Ch. 8.—Nutritional Support and Hydration • 285

Figure 8-2.—A Typical TPN Catheter Placement

tubing

Concentrated nutrient solution is infused through a catheter into the superior vena cava, the l-inch vein that returns blood

to the heart from the upper part of the body. The catheter is inserted into the right subclavian vein and pushed along until

its tip is in the superior vena cava. The catheter can also be inserted through the left subclavian vein or one of the jugular veins (72).

SOURCE: S.J. Dudrick and J.E. Rhoads, “Total Intravenous Feeding, ” Scientific American 226(5):73-8O, 1972.
286 . Life-Sustaining Technologies and the Elderly

In hospitals, metabolic complications including

alterations in blood glucose and phosphorus are

the most common complication of TPN (230). Although such complications can reflect errors in

the TPN formula, they also occur as the patient’s

metabolism and nutrient requirements change in

response to TPN. They can usually be anticipated

and minimized with careful monitoring by professionals trained in the use of TPN (57,111,137).

The Patient’s Experience of TPN

As it does with tube feeding, the patient’s experience of TPN varies depending on his or her

Photo credit: Oley Foundation

The TPN catheter that remains in the patient’s chest

can be both annoying and frightening, but many patients

on long-term TPN adjust well to the treatment.

general physical and mental condition. Critically

ill patients on short-term TPN may be no more

bothered by intravenous feeding than by other

treatments. Those who require long-term TPN,

however, face significant physical and psychological obstacles to acceptance of the treatment. The

catheter that remains in the chest can be both

annoying and frightening. In addition, patients

must cope with the feeling of dependency on the

treatment, fears about life-threatening complications, and anxiety about the cost of treatment. Despite these problems, many patients on long-term

TPN at home lead active and satisfying lives (155).

Anecdotal evidence indicates that TPN, unlike

tube feeding, is seldom used for long-term treatment of confused patients. When it is used for

confused patients who may try to pull out the catheter, physical restraints are necessary because

pulling out, disconnecting, or tearing a central venous cathether is dangerous, although not usually life-threatening.

Tube Feeding v. TPN

Tube feeding is often perceived as inexpensive

and relatively simple (44,132), whereas TPN is perceived as expensive, “high-tech” medical care that

requires the involvement of skilled professionals.

This dichotomy obscures important similarities

between these procedures. In fact, both procedures are used for acute and long-term treatment,

and while TPN is generally more complex and hazardous, tube feeding also entails risks and requires

the involvement of skilled professionals, at least

for clinically complex patients (90,125).

The primary determinant of which feeding

method is used is the patient’s physical condition.

Nutritional support specialists agree that tube

feeding should be used if the patient is capable

of digesting and absorbing food and fluids normally; if not, TPN is required. In the vernacular

of the field, “If the gut works, use it. ” Yet TPN

is sometimes used when tube feeding is possible

and might be more effective (90)126)170)175)210).

This use of TPN may occur because of staff training and preferences or because third-party reimbursement may be easier to obtain for TPN than

for tube feeding.
Ch. 8.—Nutritional Support and Hydration ● 287

Clinical Research Issues Related to

the Use of Nutritional Support and

Hydration for Elderly Patients

Although tube and intravenous nutrition and

hydration procedures are widely used, many clinical questions about the procedures, particularly

their use for elderly patients, remain unanswered.

Some of the most important questions are summarized below. Research on each of these questions is needed to improve clinical decisionmaking and quality of care for elderly patients.

Efficacy of Nutritional Support

Tube and intravenous nutritional support and

hydration are clearly effective in sustaining life

for patients of all ages who are physically unable

to swallow, digest, or absorb food and fluids taken

by mouth and for patients who do not take in food

or fluids for whatever reason. Efficacy has been

more difficult to demonstrate for critically ill patients who are physically able to eat but cannot

eat enough to maintain normal nutritional status.

Nutritional support improves the indices of nutritional status in these patients (116), but efficacy

in terms of outcome measures such as mortality,

morbidity, or length of hospital stay has been more

difficult to demonstrate (14,60,79).

Some nutritional support specialists argue that

“there are no illnesses that do better when the

patient is starved” and that efficacy has been demonstrated as definitively for nutritional support

as for most other medical treatments (9 I). Others

believe that efficacy in terms of outcome measures has been established for some diseases but

not others, for which it is, nevertheless, frequently

used.

Among patients with the same disease, nutritional support may be essential for those who are

more severely ill and unnecessary for those who

are less severely ill (14). In this case, the difficulty

of measuring severity of illness may complicate

the process of establishing efficacy.

Clearly, there are some severely ill, malnourished

patients who will die even with nutritional support. Predicting outcome is difficult, but one study

of patients of all ages in an intensive care unit (48)

used APACHE II, a clinical assessment instrument

developed to classify severity of illness, to predict outcome in the patients who received TPN.

The system predicted death with 10()-percent specificity—that is, all eight TPN patients who were

predicted to die in the hospital did die. (Seven other

patients who were predicted to live also died in

the hospital.) withholding TPN from patients who

were predicted to die and then did die would have

reduced the annual cost of TPN to the hospital

by 28 percent. The researchers conclude:

The disparity between demand and available

health care resources is a universal problem. Political and bureaucratic measures are increasingly

being imposed on the medical profession to reduce health care costs. These measures are often

viewed by the medical profession as being harmful to patient care and clinical freedom.

One way to improve cost-effectiveness is to examine critically the way we prescribe expensive

therapies . . . . By not treating patients who will

not benefit, cost-effectiveness is increased, with

a simultaneous reduction in the total cost. The

ethical problem is to identify these patients accurately (48).

The American Society for Parenteral and Enteral Nutrition recently issued guidelines for use

of TPN for hospitalized adult patients (12). These

guidelines define conditions for which TPN should

be a part of routine care, conditions for which

it is usually helpful, conditions for which it is of

limited value, and conditions for which it should

not be used. The last category includes cases

where the patient or legal guardian does not want

TPN. No similar guidelines are available for tube

feeding.

Several factors suggest that nutritional support

might be less effective, on average, for older than

younger patients. Physiological changes associated

with normal aging might limit the capacity of a

patient’s body to respond to tube or intravenous

feeding. In addition, the greater prevalence of

acute and chronic conditions among elderly people might increase the risks of treatment for them,

It should by noted, however, that these considerations apply to elderly people as a group, and, because of the heterogeneity of the elderly population, do not apply equally to all elderly persons.

Moreover, since many elderly patients with acute

and chronic diseases are malnourished, nutritional
288 ● Life-Sustaining Technologies and the Elderly

support might have a greater positive impact on

outcome for elderly patients as a group than for

younger patients.

Despite the relevance of these considerations

to treatment decisions, OTA is aware of only one

study (104) comparing efficacy for older versus

younger patients. A comparison of responses to

tube and intravenous feeding for 37 patients under age 65 and 65 patients over age 65 found no

statistically significant differences between the

groups in nutritional status indicators, although

the direction of the findings indicated consistently

poorer response among elderly patients. Mortality was significantly higher in the older group.

More information about the efficacy of nutritional

support for older patients is needed to support

clinical decisionmaking.

Assessment of Nutritional Status

in Elderly People

Determining an individual’s need for nutritional

support, selecting the appropriate feeding method

and formula, monitoring the patient’s response

to treatment, and determining efficacy require

a method for collecting information about a patient’s nutritional status and standards with which

to compare this information.

Various methods are used to assess nutritional

status in individuals of all ages:

Dietary histories that provide a record of

calories, protein, fat, carbohydrates, vitamins,

and minerals and sometimes alcohol and drugs

consumed by the individual over a designated

time period.

Anthropometric measurements such as weight

and measures of lean body mass and fat stores

(e.g., skinfold thickness and arm circumference).

Biochemical measurements such as levels of

serum albumin and serum transferring.

Hematologic measurements that can be used

to identify anemia related to lack of specific

nutrients.

Measurement of immune responses such as

total lymphocyte count and cell-mediated immunity.

Measurement of vitamin and mineral status.

Changes in body composition and metabolism

associated with normal aging are known to affect

the indices of nutritional status used in these

assessment methods. Many of the effects are not

fully understood, however, and nutritional standards that take these effects into account have not

been developed. The lack of standards makes it

difficult to interpret findings for individual elderly

patients.

For example, dietary requirements for elderly

people are unknown or controversial for many

nutrients. On average, caloric needs are reduced

in elderly people because of decreased physical

activity and decreased metabolic rates associated

with smaller lean body mass. It is unclear, however, whether protein requirements are generally increased or decreased in elderly people. Requirements for fats, carbohydrates, and many

vitamins and minerals are also unknown. The need

for some nutrients may be increased because of

reduced absorption of these nutrients associated

with normal aging (51,115)142)181).

Recommended Dietary Allowances (RDAs) formulated by the National Research Council are

available for the age group 51 +. The use of a single set of RDAs for the age group 51+ fails to

account for important physiological differences

between people who are under age 60, for example, and people over age 80 or 90. A new edition

of the RDAs was scheduled for release in 1985

but has been delayed, partly because of the difficulty of establishing RDAs for elderly people (141,

181).

Anthropometric measures such as fat stores and

lean body mass are used to determine nutritional

status in patients of all ages, but lack of standards for interpreting findings for elderly patients

complicate their use for these patients. For example, skinfold thickness is used as a measure of

fat stores, but alterations in fat distribution, skin

elasticity, and other characteristics of aging skin

make skinfold measurements difficult to interpret

after age 60 (34,60,80). Similar problems limit the

usefulness for older persons of each of the assessment methods listed above. These problems are

discussed further in appendix F.
Ch. 8.—Nutritional Support and Hydration ● 289

In addition to being affected by normal aging,

nutritional status is affected by acute and chronic

diseases, and accurate assessment of a patient’s

nutritional status requires an understanding of

their effects. Many of the diseases that affect nutritional status-e.g., acute and chronic infections,

cerebrovascular and cardiovascular disorders,

cancer, and chronic renal, pulmonary, and liver

diseases-occur in patients of all ages but are more

common in elderly people than in younger people. Decreased food and fluid intake is extremely

common in patients with many of these diseases.

Yet the same diseases often increase nutritional

requirements. Gastrointestinal absorptive capacity is also altered by many diseases (115). In addition, treatments that cause nausea or lessen appetite and diagnostic procedures that require the

patient to be without food or water for short

periods affect nutritional status.

Acute and chronic diseases affect some of the

commonly used indices of nutritional status. Cancer, congestive heart failure, and kidney and liver

disease, for example, decrease the level of serum

albumin, a frequently used biochemical measure

of nutritional status, but lower serum albumin

levels do not necessarily indicate malnutrition in

patients with these diseases. Conversely, dehydration increases the level of serum albumin, but

higher serum albumin levels in dehydrated patients may not indicate normal nutritional status

(51).

Drug-nutrient interactions are common in elderly

patients and must also be considered in assessing

nutritional status. Elderly persons with acute and

chronic diseases often take large numbers of

drugs, some of which interfere with metabolism

and can cause specific nutritional deficiencies.

Many drugs also cause nausea or a reduction in

appetite that can decrease food and fluid intake.

Mood altering drugs can cause changes in cognitive function that markedly affect food and fluid

intake (115)128)172).

The complexity of the relationship between nutritional status, normal aging, acute and chronic

disease, and drug-nutrient interactions suggests

that a thorough assessment is needed before treatment is initiated. According to many nutritional

support specialists, however, simple, inexpensive

assessment procedures can be used to screen people at risk for nutritional deficiencies (56,90)166)

184,210). Loss of 10 percent of usual body weight

in 6 months or less is one such screening measure (53). At one hospital, surgical patients who

had lost 10 pounds or more in the preceding 6

months were more likely to die following surgery

than those who had not experienced a weight loss

of this magnitude. Among those age 60 and over,

the death rate was 11 times higher for those who

had lost 10 pounds or more than for those who

had not (184).

Simple indicators like weight loss are useful for

initial screening, but a thorough nutritional assessment is needed to select an appropriate formula

or monitor response to treatment, For elderly people, research is needed to develop valid nutritional

assessment procedures, including accurate nutritional standards for different age groups within

the elderly population.

The Adequacy of Nutritional Formulas

for Elderly People

Changes in body composition and metabolism

associated with aging may necessitate adjustments

in nutritional formulas for some or most elderly

patients. Relevant age-related changes include decreased metabolic rate; decreased glucose tolerance; and changes in cardiac and kidney function

that limit the patient’s tolerance of the large volume of fluids required for TPN (51,55).

TPN formulas and modular enteral formulas are

individually mixed and can be adjusted for elderly

patients if the health care professionals treating

these patients are aware of the necessary changes.

To some nutritional support specialists, the necessary changes may be obvious. To health care

professionals who are managing TPN and tube

feeding for elderly patients but are not trained

in clinical nutrition, however, the necessary changes

may not be so clear.

Many, and perhaps most, elderly patients on

tube feeding receive premixed formulas that are

used exactly as they are received from the manufacturer. Lack of information about the dietary

needs of elderly people—particularly very old people and those who are bedridden or otherwise

extremely inactive—raises the possibility that some
290 . Life-Sustaining Technologies and the Elderly

elderly patients on tube feeding receive formulas

that are inappropriate for their needs.

Another clinical issue is the adequacy of nutritional formulas for long-term use by patients of

all ages. Insufficient or excessive amounts of specific nutrients may not affect patients on shortterm treatment but can have a significant effect

over time. Even if the correct amounts of certain

nutrients are known and included in the solution,

tube and intravenous feeding procedures can prevent their absorption and utilization. Infusion of

nutrients directly into a person’s veins, for example, results in immediate excretion of some nutrients that are normally stored in the liver. Nighttime infusion of nutritional formulas also affects

absorption and utilization. As a result, some longterm nutritional support patients develop obscure

deficiency syndromes (77,155). Clinical research

on formulas for long-term use is needed.

The Effects of Withholding and

Withdrawing Nutritional Support

and Hydration

Clinical observation suggests that terminally ill

people often reduce their intake of food and water

as death approaches. For patients who are only

hours or a few days away from death, dehydration can lessen nausea, vomiting, abdominal pain,

and pulmonary secretions that cause gagging and

choking and decrease the patient’s level of consciousness and thus his or her perception of pain

(29,180,234). For this specific group of patients,

withdrawal of nutritional support may improve

the quality of the individual’s last hours or days.

Some of these patients may suffer from thrist or

dry mouth when treatment is withdrawn, but

these symptoms can usually be alleviated with frequent mouth care, ice chips, small amounts of

water, vaseline, and a room humidifier.

Little is known about the effects of withdrawing nutritional support and hydration and the

course of dying without treatment for people who

are terminally ill, comatose, or severely debilitated

but for whom death is not imminent (122). Yet

some discussions about withdrawing treatment

from these patients are based on what is known

about withdrawing treatment from patients for

whom death is imminent. Caregivers point out,

however, that some comatose, severely debilitated,

and even terminally ill patients live a long time

after nutritional support has been withdrawn and

that malnutrition increases their susceptibility to

infections and can cause deep decubitus ulcers

that are painful for the patient and demoralizing

for caregivers (130)163), Furthermore, although

it is assumed that comatose patients do not experience hunger and thirst, it is not known to what

extent severely debilitated and terminally ill patients for whom death is not imminent experience

these feelings. More information is needed about

the physiological effects of withholding and withdrawal for such patients.

A related clinical question pertains to the use

of intravenous fluids when nutritional support has

been withdrawn. Many caregivers are more reluctant to withdraw intravenous fluids than to withdraw tube feeding or TPN (133,155,192). On the

other hand, continuing intravenous fluids after

withdrawing feeding may prolong a patient’s dying. Some terminally ill cancer patients are tube

fed modified formulas that are not intended to

meet their caloric or protein needs, but only to

keep them hydrated and presumably more comfortable (155). Clinical research on the effects of

these partial treatments is needed.

Ethicists and clinicians emphasize that a decision to withhold tube or intravenous nutrition and

hydration should not mean abandonment of the

patient and that palliative care should always be

provided (35,121,228). Some of the nursing care

measures described above, such as the use of ice

chips to alleviate thirst, may lessen suffering for

some dying patients. Other patients may be able

to eat or drink small amounts of food or fluids

that are insufficient to maintain life but nevertheless physically and emotionally satisfying. Tube

and intravenous feeding are impersonal treatments,

and in some cases, the decision to stop them and

offer food and fluids by mouth instead may be

comforting for the patient. For some families, the

opportunity to bring in special foods or help with

hand feeding is comforting (35,106,121,228). Clinical evaluation of these treatment approaches is

needed.
Ch. 8.—Nutritional Support and Hydration ● 291

The Relationship Between Dementia

and Eating Disorders

An unknown number of patients on long-term

nutritional support, especially tube feeding, have

neurological diseases that cause dementia, but little

is known about the relationship between these

diseases and eating disorders. Parkinson’s disease

and stroke are known to cause physical difficulty

with swallowing (46), and some patients with these

diseases have dementia. Alzheimer’s disease–the

most frequent cause of dementia in elderly people—

can also cause swallowing difficulty, at least in

some patients (215). However, little is known about

the prevalence of swallowing difficulties in persons with Alzheimer’s disease or how often such

conditions necessitate tube feeding. It is not known

why some people with Alzheimer’s disease or other

dementing disorders stop eating while others do

not, why some refuse hand feeding, and whether

or how often these behaviors are related to swallowing disorders.

One study (190) found that 32 percent of the

residents of one nursing home could not eat without physical assistance of some kind. The need

for assistance was not correlated with a diagnosis of dementia or stroke, but it was highly correlated with swallowing disorders. The need for

assistance was also correlated with low scores on

a measure of cognitive ability—the Mini-Mental

State Exam (MMSE) (78). None of the nursing home

residents with an MMSE score indicating normal

cognitive ability required assistance with eating,

but 25 percent of those with scores indicating

moderate cognitive impairment and 75 percent

of those with scores indicating severe cognitive

impairment required such assistance. Seven (9 percent) of the residents at this nursing home were

tube fed. Of these seven, the researchers were

able to examine four, all of whom had severe cognitive impairment (189).

Although cognitive impairment was correlated

in this study with need for assistance in eating,

cognitive impairment did not predict the need for

assistance independent of swallowing difficulties.

The researchers suggest that swallowing difficulties may be associated with only a specific type

of dementia or only particularly severe dementia.

In this context, it is important to note that 25 percent of residents with severe cognitive impairment

were able to eat independently (190).

Another study (226) indicates that swallowing

difficulties may not be common among Alzheimer’s disease patients, even in the late stages of

the disease. Some research suggests that eating

disorders among these patients tend to develop

when the patients have an infection, such as bronchial pneumonia, that decreases appetite (179,225).

Some people may believe that persons with dementia who do not eat should be tube fed regardless of the reason they do not eat; others may conclude that such persons should not be tube fed,

again regardless of the reason they do not eat.

A third group of people, however, may consider

the reason for a dementia patient’s eating problem a relevant factor in treatment decisions, and

conclude, for example, that the decision to tube

feed a dementia patient who has swallowing difficulty is less problematic than the decision to tube

feed a dementia patient who does not eat for other

reasons. In any case, good medical care requires

greater understanding than now exists about the

relationship between dementia and eating disorders.

Another problem in decisions about nutritional

support for dementia patients is lack of information about the course of diseases that cause dementia (215) that makes it difficult to determine

when such patients are terminally ill and how long

they may live with and without treatment. Claire

Conroy, a severely confused elderly woman who

was the subject of intense legal debate about withdrawal of tube feeding, for example, died during

early court proceedings even though it had not

been expected that she would die imminently and

tube feeding had not been withdrawn. If it had

been clear that she was terminally ill and would

die imminently with or without treatment, it is

unlikely that her case would have been so controversial.
292 • Life-Sustaining Technologies and the Elderly

Federal Funding for Research on

Nutritional Support for Elderly People

Federal funding for research on nutritional support is provided primarily by the National Institutes of Health, but none of the projects currently

funded by the National Institutes of Health focus

on use of these procedures for elderly people (193).

The National Institute on Aging and the Department of Agriculture are funding research on nutrition and normal aging and the dietary requirements of healthy elderly people (81). The VA is

funding several studies on nutritional support,

most of which are not focused on elderly patients.

However, the VA Geriatric Research, Education,

and Clinical Center at Little Rock, Arkansas, conducts an ongoing research program on nutritional

support for elderly patients. The VA Geriatric Research, Education, and Clinical Center at Bedford,

Massachusetts, is conducting research on eating

disorders in persons with dementia.

Some of the research that is needed to improve

clinical decisionmaking and the quality of nutritional support procedures for elderly persons is

basic biomedical research on human nutrition, nutrition and normal aging, and the relationship between nutrition and disease. Applied research to

identify, develop, and evaluate products that meet

the nutritional needs of elderly people is also

needed. Some of the most important research

questions, however-questions about the impact

on patient comfort of withholding or withdrawing nutritional support and hydration from severely debilitated, comatose, and terminally ill persons who are not expected to die imminently;

about the relationship between dementia and eating disorders; about reasons for patient refusal

of tube or intravenous feeding; and about palliative care for persons who refuse the procedures

or for whom they are futile-are primarily nursing issues. They may be best defined and addressed through the newly established National

Center for Nursing Research at the National Institutes of Health. Other important questions, particularly questions about efficacy and patient comfort associated with different nutritional support

procedures, are best addressed by nutritional support specialists, who are familiar with the range

of treatment options and their pros and cons for

different types of patients.

Professional Training and Expertise

in Nutritional Support

Given the gaps in knowledge cited above, appropriate treatment decisions and ongoing care for

elderly patients require the involvement of personnel who are trained to recognize malnutrition

and eating disorders, to interpret assessment findings, to provide tube and intravenous nutrition

and hydration, and to monitor patient response

to treatment. Although some health care professionals who treat critically and terminally ill and

severely debilitated elderly people have the requisite training in these areas, many do not.

In general, physicians and dietitians are responsible for nutritional assessment and treatment, although in many settings, nurses maybe the first

to notice eating disorders and symptoms of malnutrition and are often the direct caregivers. Pharmacists are responsible for preparing TPN and,

in some cases, enteral formulas (see ch. 10).

Physician training in basic human nutrition has

been very limited (66,74,119,147,233). A recent

survey by the National Research Council’s Food

and Nutrition Board found that only 27 percent

of medical schools in the United States have required courses in nutrition. The National Research

Council’s report, Nutrition Education in U.S. Medical Schools, notes in particular the lack of medical training in enteral and parenteral nutrition

and nutritional aspects of chronic disease, and it

points out that medical board examinations now

include no questions on enteral or parenteral nutrition or nutrition and the elderly (145).

All dietitians are trained in basic human nutrition and procedures for nutritional assessment.

Dietitians also receive training in nutritional care

of elderly people, but there is disagreement about

the adequacy of this training. Most dietitians do

not receive extensive training in assessment of critically ill patients. Dietetic training has changed

with advances in nutritional support technology,

so that dietitians trained recently are more familiar with current TPN and tube feeding techniques

(49)194).

Pharmacists receive some training in nutrition

throughout the pharmacy curriculum, although

separate required courses on nutrition in the basic

pharmacy program are unusual. The primary fo-
Ch. 8.—Nutritional Support and Hydration ● 293

cus of their training in nutrition is the effects of

malnutrition on drug therapy. Pharmacy students

are usually introduced to parenteral and enteral

nutrition in courses related to the selection and

mixing of nutrient solutions (83,222).

Nurses receive training in basic nutrition and

the importance of food and fluid intake in acute

and chronic diseases. This training is often interspersed through the nursing curriculum, but a

1983 survey of nursing schools found that about

half had separate required courses on nutrition

(83). Yet many nurses have little training in nutritional support procedures, especially TPN.

Despite these generalizations about lack of training in clinical nutrition, some physicians, dietitians, pharmacists, and nurses have gained expertise in this field, partly through formal training

but more often through experience in providing

TPN and tube feeding, particularly in critical care

settings. These nutritional support specialists work

primarily in hospitals and are often members of

nutritional support teams. Some have specific

credentials in nutritional support, but many do

not. There is currently no agreement about what

credentials are needed and which organization

or organizations should be responsible for certifying nutritional support specialists (195).4 (See

also ch. 10).

4The American Society for Parenteral and Enteral Nutrition has

published standards of practice for nutritional support nurses (10)

and nutritional support dietitians (11), and standards have been

drafted for pharmacists involved in the care of patients on nutritional support (13).

Some patients in hospitals and at home receive

care from hospital-based nutritional support teams.

Such teams, that usually include a physician, a

nurse, a dietitian, and a pharmacist, assist hospital staff with assessment and nutritional support

of patients. In addition, some patients in hospitals, nursing homes, and at home, receive nutritional support services from individual professionals

who have the necessary training and experience

in clinical nutrition. However, as discussed in the

following sections of this chapter, patients in some

settings do not have the benefit of staff trained

in nutritional assessment, tube feeding, or TPN.

As a result, some elderly patients who might benefit from nutritional support may not be identified,

and others may receive inappropriate treatment.

It has been noted that treatment options for

elderly people are often limited by lack of knowledge about their special needs, a shortage of

trained health care professionals to treat them,

and other factors. As a result, the “best choice”

for treatment is frequently not available (27). This

observation accurately describes the current status of nutritional support and hydration for elderly patients in many treatment settings. Development of nutritional standards for elderly people,

simple screening measures, and increased training for physicians, dietitians, pharmacists, and

nurses in enteral and parenteral procedures and

special considerations in their use with elderly

patients could help to alleviate this problem.

UTILIZATION AND COST OF NUTRITIONAL SUPPORT

AND HYDRATION

Industry data indicate that in 1984 about 1.4 Utilization and Cost of Nutritional

million patients of all ages received nutritional sup- Support and Hydration in Hospitals

port, 96 percent of them in hospitals (7) (see table

8-3). Although nutritional support techniques are Utilization of Nutritional Support

basically the same in different settings, there are in Hospitals

significant differences across settings in patient Industry sources estimate that more than 500,000

characteristics, health care personnel, cost of care, individuals of all ages received TPN in hospitals

and reimbursement. Therefore, each setting is dis- in 1984 and about 780,000 received tube feeding

cussed separately. (7). Precise figures are not available because nei-
zg4 . Life-Sustaining Technologies and the Elderly

Table 8.3.–Persons Receiving Nutritional Support by

Location and Type of Therapy, All Ages, 19848

Location Parenteral feeding Enteral feeding Total

Hospital . .“. . . .536,200 (96%) 780,300 (92%) 1,316,500 (94%)

Nursing home. 15,600 (3%) 53,400 (6%) 69,000 (5%)

At home. . . . . . 4,600 (l%) 14,400 (2% ) 19,000 (l% )

Total. . . . . . .556,400 (100%) 848,100 (100%) 1,404,500 (100%)

a

There figures are from a marketing survey by Charles H. Kline CO , Fairfield, NJ. They provide

valuable information about utilization but are considered high by some nutritional support spaciaiists

(68).

SOURCE: American Society of Parenteral and Enteral Nutrition, “1984 Nutritional Suppwi Population Exceeds 6 Million, ” (@fate 8(4):8, 1985.

ther hospitals nor third-party payers regularly collect this information. Until late 1986, the widely

used ICD-9 coding system had no procedure codes

for tube feeding or TPN. Thus, there was a serious obstacle to collecting information on the utilization of these procedures. Newly assigned procedure codes for these procedures will facilitate

data collection in the future.

Although no national figures are available on

the number of elderly people who receive nutritional support in hospitals, reports from individual hospitals indicate that approximately 40 percent of the patients receiving TPN and 50 percent

of those receiving tube feeding in hospitals are

over age 65 (115). However, the percentages vary

greatly in different hospitals.

Little is known about the characteristics of elderly patients on nutritional support in hospitals,

but one 1984 study at the Albany Medical Center

Hospital compared elderly patients who received

nutritional support to those who did not. Of the

96 randomly selected subjects, 25 percent received

tube feeding or TPN: 71 percent of these received

only tube feeding; 12 percent received TPN, and

17 percent received both. There was a trend, although it was not significant, toward decreasing

utilization with age—31 percent of patients aged

65 to 69 received nutritional support compared

to only 21 percent of those over 70 (155).

About half of the elderly patients who received

nutritional support in this study had diagnoses

indicating central nervous system damage (notably stroke) compared to only 6 percent of those

who did not receive nutritional support. About

20 percent of patients in each group had cancers

of various types; in the group that received nutritional support, all the cancer patients had local

or metastatic bowel involvement (155).

Comparison of the two groups of elderly patients

on the basis of a functional assessment rating scale

showed that the patients receiving nutritional support were more impaired in physical and mental

health, activities of daily living, and ability to care

for themselves independently. Their average

length of hospital stay was significantly longer;

a larger percentage died in the hospital; and a

smaller percentage were discharged home compared to the patients who did not receive nutritional support (155). Although these findings cannot be generalized beyond the population surveyed,

they do agree with findings of other studies showing that nutritional support patients of all ages

are generally sicker and more functionally impaired than other patients with similar diagnoses

(14).

Nutritional support, particularly TPN, is used

for patients with each of the life-threatening conditions discussed in other chapters of this report–

i.e., cardiac, respiratory and renal failure, and

severe infections. Ventilator-dependent patients

exemplify the complex relationship between nutritional support and other life-sustaining treatments. Patients who have an endotracheal tube

(a tube placed through the mouth or nose into

the trachea) for mechanical ventilation cannot take

in food or fluids by mouth and, therefore, require

tube feeding or TPN. Some patients on mechanical ventilation are also malnourished. Since malnutrition is associated with reduced ventilator

drive and ventilator efficiency, nutritional support could be expected to improve outcome for

these patients. Nutritional support may also be

beneficial in weaning patients off mechanical ventilators (24,110). However, high glucose loads increase respiratory distress in some patients. Thus,

the selection of an appropriate formula for a

ventilator-dependent patient requires knowledge

of the interaction of nutritional status, specific nutrients, and respiratory function. Moreover, frequent monitoring of the patient’s response to nutritional support is essential to avoid complications

and insure optimal outcome (20,73,86,143).

Malnutrition is common among hospital patients.

The prevalence of malnutrition ranges from 17
Ch. 8.—Nutritional Support and Hydration ● 295

to 60 percent among hospital patients of all ages

(28,31,32,108,208) and is higher among elderly

hospital patients than younger ones (28,91). Malnutrition is associated with increased morbidity,

mortality, length of stay, and cost of care. One

recent study of 800 hospitalized patients of all ages

found that 55 percent were malnourished (4). Malnourished patients were three times more likely

to die or suffer major complications than patients

with normal nutritional status. Among patients

who had pneumonia, hip fractures, or inflammatory bowel disease, those who were malnourished stayed an average of 2 days longer in the

hospital, cost the hospital $1,160 more, and had

charges of $2)480 more than those with normal

nutritional status. Among patients undergoing hip,

bowel, or abdominal vascular surgery, those who

were malnourished spent 5 days more in the hospital, cost the hospital $2,750 more, and had

charges of $5,575 more than those with normal

nutritional status. Cost of care was higher, on average, for elderly patients but was much more

closely correlated with the patients’ nutritional

status than their age (91).

Many malnourished patients can be treated with

oral nutritional supplements and do not need tube

feeding or TPN. Among the very large number

of hospitalized elderly patients who are malnourished, however, some need tube feeding or

TPN and do not receive it—sometimes because

their poor nutritional status has not been identified or because its potential effect on clinical outcome is not recognized (137). No estimate of the

number of these patients can be derived from

available data, however.

Nutritional Support Personnel

in Hospitals

Some hospitals have nutritional support teams

to assist with or provide treatment, as discussed

above. All VA medical centers that provide TPN

are required to have a nutritional support team

(114). But a 1984 survey of other hospitals found

that only about 12 percent have a nutritional support team or a nutritional support service group

(204).

Research indicates that clinical procedures necessary for safety and efficacy are frequently not

followed and complications are more frequent

when a nutritional support team is not involved

in treating hospitalized patients on tube or intravenous feeding (67,69,146 )161,1 74). Although no

supporting data are available, it may also be true

that in hospitals that do not have a nutritional support team or nutritional support service group,

malnutrition is not recognized as frequently as

in hospitals that do have such a team or group.

Cost and Reimbursement for

Nutritional Support in Hospitals

Accurate data on costs, charges, and expenditures for nutritional support are difficult to obtain. Available figures vary greatly from one hospital to another, and figures reported as “costs”

are often actually charges (21 1). According to one

survey, the average cost of formulas, equipment,

and associated staff time for TPN for hospitalized

patients in 1985 was $196 per day (range: $25 to

$500) (115). Other studies report average costs

ranging from $75 to $400 a day for TPN formulas

and associated staff time for hospitalized patients

(14). If a patient remains in a hospital specifically

to receive nutritional support, then the cost of

hospitalization should be added to these costs to

determine the overall cost of care.

Tube feeding is less expensive. One study showed

that the average cost of formulas, equipment, and

associated staff time for tube feeding for hospitalized patients in 1985 was $43 a day (range: $4

to $132) (115). Other studies report averages of

$18 to $32 a day (14).

Medicare, Medicaid, Blue Cross, and other thirdparty payers reimburse hospitals for the care of

elderly patients on nutritional support. Table 8-4

gives estimates of the percentage of patients receiving payment from each source.

Medicare is the primary payer for hospitalized

elderly patients, and some nutritional support

specialists and others believe that Medicare’s prospective payment system (PPS) based on diagnosisrelated groups (DRGs) discourages the use of nutritional support for the following reasons:

● The fixed Medicare payment rates for patients

in each DRG are based on the average cost

of treatment in the past. Some observers ar-
296 ● Life-Sustaining Technologies and the Elderly

Table 8-4.-Source of Payment for Parenteral and

Enteral Nutrition, All Ages, All Settings, United States,

1984’

Parenteral Enteral

Source of payment nutrition nutrition

Medicare . . . . . . . . . . . . . . . . . . . . . . . 33% 30%

Medicaid . . . . . . . . . . . . . . . . . . . . . . . 8% 5%

Private insurance. . . . . . . . . . . . . . . . 58% 55%

Self pay. . . . . . . . . . . . . . . . . . . . . . . . 1 % 10%

aTreatments provided in hospitals, nursing homes, hospices, and at home are

included.

%hese figures include payment for oral nutritional supplements in addition to

tube and intravenous feeding.

SOURCE: “Nutrition Support,” B/omed/ca/ Business International S(3):23, 19S5.

gue that utilization of nutritional support has

increased in many DRGs and that current

DRG payment levels do not reflect this increased utilization (1)113,178).

● Patients with very different levels of severity of illness are grouped in the same DRG,

and DRG payment levels appropriate for the

average patient in each diagnostic category

are significantly lower than the cost of treating the most severely ill patients in that category. Patients who receive nutritional support

may be in any one of a large number of DRGs,

but they tend to be among the most severely

ill patients in each category. Some observers

believe that low levels of reimbursement relative to costs for these “DRG losers” may discourage some hospitals from admitting them

[14,102,173) and discourage other hospitals

from providing expensive nutritional support

(144). Although it can be argued in response

that low reimbursement relative to cost for

severely ill patients is balanced by relatively

high reimbursement for less severely ill patients in the same DRG, that observation may

not hold in the case of hospitals that provide

nutritional support more frequently in each

DRG than other hospitals; such hospitals may

not be adequately reimbursed under the

present Medicare payment system.

● Some DRGs cover patients with identical diagnoses except that one DRG includes patients

who are over age 70 or have a comorbidity

or complicating conditions while the companion DRG includes patients who are under

age 70 and have no comorbidity or complica-

‘See ch. 2 for a discussion of comorbidity and complications.

●

tion. Medicare payment is higher for the

former DRG than for the latter. Malnutrition

qualifies as a comorbidity or complication for

some DRGs, and malnourished patients are

included in the higher reimbursement category. However, in the case of patients who

are over age 70—and are in the higher reimbursement category by virtue of their age–

malnutrition does not increase the reimbursement the hospital receives for their care.

Many patients who need nutritional support

are classified as outliers under DRGs, usually

because of length of stay significantly greater

than average. Some people believe that the

Medicare payment for outliers is insufficient

to cover a hospital’s costs in caring for these

patients (14,102).

At congressional hearings prior to formation of

the Prospective Payment Commission (ProPAC),

the body established by Congress to recommend

to the Department of Health and Human Services

adjustments in PPS to accommodate new technologies and changes in utilization patterns, nutritional support was specifically cited as an example of medical treatments that would require study

(8). In 1985, at the urging of the nutritional support industry and professional groups, ProPAC

approved a study of Medicare payment for TPN

(168). The study was canceled in 1986, however,

primarily because lack of procedure codes for TPN

made it impossible to collect the necessary data.

It maybe reinstituted in the future if ProPAC continues to receive complaints about Medicare reimbursement for TPN (209).

One finding that would encourage the use of

nutritional support, especially in the context of

PPS, is proof that it saves hospital costs—i.e., that

nutritional support decreases complications and

length of stay, and, therefore, overall costs of hospital care (14,112,164)178,211). Proving this has

been difficult, partly because of problems in defining severity of illness and identifying two groups

of malnourished patients with comparable severity of illness, one of which was provided with nutritional support and the other not, A VA study

(41) designed to overcome many of these problems is in progress, but the VA study addresses

only surgical patients, and research on other patient groups is needed.
Ch. 8.—Nutritional Support and Hydration ● 297

Medicaid coverage of nutritional support in hospitals varies by State, but in general, Medicaid pays

for hospitalization and inpatient nutritional support for elderly people with low income and no

Medicare coverage. In some States, however, the

number of days of care that is covered and the

level of reimbursement are very low. Blue Cross

and other commercial insurers also pay for nutritional support in hospitals (8).

The VA provides treatment without charge for

veterans in VA hospitals. OTA has not reviewed

VA coverage or payment policies for nutritional

support and hydration.

Medicare Part B (Supplementary Medical Insurance) reimburses physicians for hospital visits for

nutritional support of their patients, and some

analysts believe that higher payments to physicians for TPN than for tube feeding may encourage inappropriate use of TPN.

No national regulations limit the frequency of

physician visits for nutritional support (84). However, Part B reimbursement is handled by 50 carriers across the country, each of which has considerable discretion in coverage policy (214). Some

carriers, for example, the Illinois carrier, have issued guidelines for payment. For some time, the

Illinois carrier limited coverage of physician visits

related to TPN to once a day for the first 2 weeks,

every other day for 2 weeks, and once a week

thereafter; physician visits for tube feeding were

limited to an initial visit and one followup visit

(103). Medicare claims for visits in excess of these

guidelines required special justification and were

often denied,

Nurses, dietitians, and pharmacists who provide nutritional support services in hospitals are

generally on salary, and their salaries were theoretically included in the cost figures used to establish Medicare’s DRG payment levels. Unlike physicians, these providers do not receive any direct

Medicare reimbursement. Nor is direct Medicare

reimbursement provided for the services of a hospital’s nutrition support team or a physician’s services as administrator of such a team, In the context of cost-containment pressures created by PPS,

a hospital must justify the salaries of these nutrition support professionals in terms of: 1) its commitment to high-quality care; 2) reduced malpractice liability; and/or 3) cost-effectiveness. It is not

known whether the number of hospitals with nutritional support teams has increased or decreased

in response to PPS.

Public Policy Issues for Nutritional

Support in Hospitals

The primary public policy concerns emerging

from the preceding discussion of the utilization

of nutritional support in hospitals are the lack of

skilled nutritional support professionals in some

hospitals and the possible disincentives for the use

of these procedures arising from PPS. These problems affect both access to treatment and quality

of care for elderly patients in hospitals.

Utilization and Cost of Nutritional

Support and Hydration in

Nursing Homes

Utilization of Nutritional Support

in Nursing Homes

Nutritional support and hydration are used

more frequently in nursing homes than the other

life-sustaining technologies discussed in this report, with the exception of antibiotics. Still, they

are used for only a small percentage of all nursing home residents. Data from the 1985 National

Nursing Home Survey show that about 26,000

nursing home residents (2 percent of all residents)

were tube fed (220). Industry estimates for 1984

were slightly higher: Charles H. Kline Co. estimated that 53,400 nursing home residents (about

4 percent of all residents) received tube feeding

and 15,600 residents (about 1 percent of all residents) received TPN (7).

Since about 85 percent of all nursing home residents are over 65 (218), it is apparent that most

of those receiving nutritional support in nursing

homes are elderly. Little else is known about their

characteristics, diagnoses, functional or mental

status, or average length of stay.

A 1984 survey of nursing homes’ by the American Health Care Association found that an aver6

In 1984, the American Health Care Association, an organization

representing 8,000 nursing homes and other long-term care facilities, surveyed its members about the use of nutritional support

in their facilities. The response rate was low (5 percent), so results

cannot be generalized, but the survey findings provide descriptive

information about use of these treatments in some facilities.
298 ● Life-Sustaining Technologies and the Elderly

age of four residents per facility were receiving

tube feeding and about one resident for each six

facilities was receiving TPN. More than half the

facilities responding to the survey reported that

they did not admit patients who require TPN. Onesixth reported that in the preceding 6 months,

they had transferred or denied admission to patients who required tube feeding or TPN because

the patients’ needs exceeded the facility’s ability

to provide services. Some commented that they

lacked adequate staff to provide nutritional support. Others cited payment problems (S).

State Medicaid regulations for licensing and certification of nursing homes affect utilization of

nutritional support. In some States, Medicaid regulations mandate that certain nutritional support

procedures cannot be used in nursing homes or

in some types of nursing homes. In Washington,

DC, intermediate care facilities (ICFs) can provide

gastrostomy but not nasogastric or intravenous

feeding (122).

Malnutrition among nursing home residents is

common. One study (186) showed that many of

the 115 residents of an Ohio nursing home (mean

age 80) suffered from moderate to severe malnutrition by currently accepted nutritional standards e.g., 43 percent had abnormally low weight/

height measures). A similar study in 2 Illinois nursing homes (162) found that 57 percent of the 227

residents (mean age 73) were malnourished.

Most malnourished nursing home residents do

not need tube feeding or TPN. Increased staff attention to nutritional status, improvements in the

quality and presentation of meals, hand feeding,

and oral nutritional supplements could correct

their nutritional deficits inmost cases. With such

improvements, some nursing home residents who

now receive tube feeding might be able to take

in food and fluids by mouth. However, the number of such persons cannot be estimated because

so little is known about why nursing home residents receive tube feeding or TPN.

Patients in a persistent noncognitive state—

sometimes referred to as irreversible coma or persistent vegetative state—require tube feeding or

TPN to survive. Despite the intense legal and ethical debate about the use of life-sustaining treatments for these patients, there is no reliable information about how many such patients there

are in this country. Estimates of 5)000 to 10)000

are widely cited but cannot be confirmed. Data

from the 1985 National Nursing Home Survey

show that only about 1400 nursing home residents

have a diagnosis of coma in their medical record

(220), but individuals who are comatose are frequently given diagnoses that reflect the cause of

the coma rather than a diagnosis of coma per se.

No data are available on the number of persons

in persistent noncognitive state (coma) in hospitals.

Nutritional Support Personnel

in Nursing Homes

Lack of adequately trained staff to provide tube

feeding and TPN is generally a more severe problem in nursing homes than in hospitals. Very few

nursing homes employ nutritional support specialists. Thus, the responsibility for assessment, selecting formulas, and monitoring the resident’s

response to treatment lies with the physician, the

facility dietitian, and nurses.

Physician visits are much less frequent to nursing home residents than to hospital patients (105),

so physicians may be less involved in nutritional

assessment and ongoing nutritional support for

nursing home residents than for hospital patients.

Dietitians are usually responsible for nutritional

assessment in nursing homes, but Medicare and

Medicaid regulations do not require a full-time

dietitian, and many nursing homes get by with

a dietary consultant who may be in the facility

half time, 1 day a week, 1 day a month, or even

less. The nursing home dietitian or dietary consultant may be responsible for nutritional assessment of 100 to 300 or more residents and also

has other duties, such as recommending special

diets, responding to resident complaints about the

food, and in some facilities supervising the kitchen.

If a dietitian is not available to assess each resident, that responsibility falls to nurses who are

usually also responsible for day-today treatment

(107,177).

Reliable information about how nutritional formulas are selected for nursing home residents is

not available, but anecdotal evidence suggests that

many nursing homes use premixed enteral formulas that are not adjusted to the needs of the

individual. Concerns about the safety, quality, and
Ch. 8.—Nutritional Support and Hydration ● 299

suitability of enteral formulas, discussed earlier,

may be particularly relevant for nursing home

use, because many nursing homes run within very

tight financial constraints. Thus, they may purchase the lowest cost formula with little awareness of possible concerns about quality. Prevailing practices in nursing homes for monitoring

residents’ physical response to nutritional support

are not known, but it is likely that there are also

problems in this area.

In 1985, a Texas nursing home corporation was

charged with murder for the death of a tube fed

resident whose formula contained only 636 calories

a day (154). It is unclear whether this case reflects

knowing or unintentional neglect. However, some

observers believe that slow, unintentional starvation of tube fed residents may not be unusual

in nursing homes because of lack of staff trained

to assess nutritional status, select an appropriate

formula, and monitor the patient’s response to

treatment (103).

Although lack of adequately trained staff is an

obstacle to safe and effective use of nutritional

support in many nursing homes, three recent developments may lead to improvements. First, nutritional support specialists, who have demonstrated little interest in elderly nursing home

residents in the past, are now focusing more attention on clinical issues related to their care. Second, the American Health Care Association is developing educational materials for its member

facilities on ethical issues in nutritional support,

clinical procedures, and alternate treatment methods (5). Finally, in response to Medicare’s prospective payment system, some nursing homes are upgrading their staffs to provide more skilled care,

and some hospitals are developing alternate level

of care units for patients who are not acutely ill

but need care that cannot be safely provided in

nursing homes (337,83,169).

Cost and Reimbursement for

Nutritional Support in Nursing Homes

OTA was unable to obtain estimates of the cost

of tube feeding or TPN in nursing homes. It is likely

that costs vary greatly in different facilities due

to differences in personnel, nutritional support

procedures, and patient characteristics. It is also

likely that charges for nutritional support in nursing homes are related to Medicare and Medicaid

payment policies, as discussed below.

Some people believe that an important aspect

of the cost of nutritional support is the cost of

long-term nursing home care for comatose and

severely debilitated patients who would have died

without tube or intravenous feeding and hydration. other people consider even the mention of

such costs as objectionable.

No information is available about the cost of

nursing home care for patients on nutritional support. The average cost of nursing home care varies

greatly among States and in different facilities,

but generally costs $20,000 to $30,000 or more

per year (219).

Medicare covers nutritional support for nursing home residents under the Part B prosthetic

device benefit that reimburses 80 percent of allowable charges. The resident, resident’s family,

Medicaid, or other third-party insurance is responsible for the remaining 20 percent.

Medicare Part B reimbursement for enteral nutrition in nursing homes is very controversial. Before 1980, nursing homes generally purchased enteral supplies in bulk and included the cost of the

supplies in their daily charges for care. Beginning

in 1980, medical supply firms developed a new

marketing approach: enteral supplies were provided at no cost to the nursing home and billed

to Medicare separately for each resident, usually

at the same rate as supplies for patients on enteral nutrition at home. In 1984, the Inspector General recommended that Part B coverage of enteral

supplies be eliminated for nursing home residents

because charges for these supplies were excessive (two to three times open market prices). The

Inspector General also recommended that nursing homes be allowed to include the cost of enteral supplies in their daily charges for patients

whose nursing home care is covered by Medicare

—a very small proportion of all residents. This

approach was rejected because it would eliminate

Medicare coverage of enteral supplies for the large

proportion of residents whose nursing home care

is not covered by Medicare (22 I). Instead, proposals by the Health Care Financing Administration

(HCFA) would limit the amount of reimbursement

for enteral supplies. The effect of this limitation
300 ● Life-Sustaining Technologies and the Elderly

on access to nutritional support for nursing home

residents is not known.

One point of disagreement between HCFA and

medical supply firms is whether the firms that

provide enteral supplies to nursing homes also

provide other reimbursable services. The firms

argue that they often provide training for nurses

and other services for residents on tube feeding.

HCFA claims that the firms seldom supply services for residents and that if training for nurses

is needed, the nursing home should pay for it.

Medicaid policies that affect payment for nutritional support for nursing home residents vary

considerably among States. Some States reimburse

nursing homes at a flat rate for each Medicaid

resident and make no additional payment for tube

or intravenous feeding. Other States pay extra for

residents who require tube or intravenous nutrition and hydration. This additional payment is included in the daily rate in some States, while in

others Medicaid reimburses the nursing home

separately for supplies and equipment used for

each Medicaid patient, In many States, Medicaid

reimbursement for tube or intravenous feeding

requires prior authorization from the State Medicaid office (8). OTA has not analyzed the impact

of differences among States in Medicaid coverage and reimbursement on the availability of these

treatments.

The VA pays for long-term care of eligible veterans in community nursing homes and in VA hospitals, nursing homes, and domiciliary care facilities. No information was obtained by OTA about

VA reimbursement for nutritional support and

hydration for elderly VA patients in community

nursing homes. Nutritional support for patients

in VA facilities is provided without charge to the

patient.

Medicare and Medicaid cover physician visits

to nursing home residents, but the number of reimbursable physician visits is limited by both programs. As a result, frequent visits by a nutrition

support physician, if one were available and willing to visit a nursing home resident, might not

be reimbursed. Visits by dietitians or other nonphysician health care personnel are not reimbursed by Medicare or Medicaid, except insofar

as they are included in the facility’s daily charges.

Public Policy Issues for Nutritional

Support in Nursing Homes

The most important public policy concerns

emerging from the preceding discussion are the

lack of information about the use of nutritional

support procedures in nursing homes and questions about the quality of nutritional support procedures available to nursing home residents due

to the lack of staff trained in nutritional assessment and nutritional support procedures. Particularly notable is the lack of involvement of skilled

nutritional support specialists in the care of nursing home residents. Since Medicaid pays for almost

half of the nursing home care in this country, improvements in quality of care for nursing home

residents depend at least in part on Federal and

State policies that determine level of reimbursement for Medicaid patients and required staffing

in the facilities that care for them. Regulatory and

reimbursement policies that encourage the involvement of nutritional support specialists in the

treatment of nursing home residents could improve quality of care.

Utilization and Cost of Nutritional

Support and Hydration in the

Patient's Home

Utilization of Nutritional Support

in the Home

Fewer patients of all ages receive tube feeding

or TPN at home than in hospitals or nursing

homes. Estimates range from 2,000 to 5,000 people of all ages on TPN and 15,000 to 20,000 on

tube feeding (7,155).

The number of elderly patients on nutritional

support at home is not known, but data from several sources’ suggest that about 55 percent (range

17 to 59 percent) of people on tube feeding at home

are over 65. This would be 8,000 to 11)000 elderly

people. About 20 percent (range 15 to 29 percent)

of people on TPN at home are over 65. This would

be 300 to 1,500 elderly people (155).

7These sources include three commercial home nutrition services representing about 5,400 patients and three relatively small registries representing about 1,400 patients. These sources overlap; that

is, individual patients may be included in figures from two or more

sources (155).
Ch. 8.—Nutritional Support and Hydration ● 301

Data from one registry show that the percentage of elderly patients among patients receiving

TPN at home increased from 5 percent in 1978

to 17 percent in 1983 (153). There are no data

on the percentage of elderly patients among patients on tube feeding at home in earlier years,

but the percentage has probably been increasing

(155).

Cancer is the most common diagnosis of patients

of all ages on TPN at home, but the proportion

of patients with cancer varies from 10 to 48 percent depending on the reporting source. Gastrointestinal diseases and disorders, e.g., Crohn’s

disease, ischemic bowel disease, and motility disorders, are also common diagnoses of home TPN

patients.

Diagnoses of people of all ages on tube feeding

at home include cancer, neurological disorders,

such as stroke, and nonmalignant metabolic disorders. Little specific information is available

about the diagnoses of elderly patients on nutritional support at home, but some data suggest that

there are fewer cancer patients among elderly

than younger patients (155).

The general health status, functional ability, and

quality of life of people on home nutritional support varies greatly depending on the underlying

condition that necessitates nutritional support.

People with nonmalignant gastrointestinal disorders can often live quite normally once they

learn the treatment procedures. Although many

of them would die without nutritional support,

their condition is seldom life-threatening so long

as treatment continues. Since nutritional support

usually does not cure their underlying disease,

however, these people are often permanently technology- dependent.

Nutritional support patients with cancer are

often terminally ill and will die with or without

tube feeding or TPN. In many cases, these procedures are used primarily to improve patient comfort, although in some cases, nutritional support

can help to maintain their strength and may prolong their lives somewhat.

People with neurological disorders such as

stroke may require nutritional support as a result of swallowing difficulty. For these patients,

tube rather than intravenous techniques are usually used, and nutritional support can often prolong their lives significantly. Their functional ability and quality of life depend mainly on the extent

of their neurological impairment. Cognitive and

speech deficits and mobility limitations that are

often associated with neurological impairment can

reduce quality of life significantly. As noted throughout this report, however, judgments about quality of life vary widely depending on the values

and perceptions of the observer. Thus, a level of

impairment, functional ability, and quality of life

that is acceptable to one patient and patient’s family may be unacceptable to another patient and

family.

Average duration of treatment for elderly people is not known, but data from one registry (153)

indicate that over half the patients of all ages starting on TPN at home were still receiving treatment

at the end of 1 year; about one quarter of the original patients were dead at the end of the year, and

one quarter were alive but no longer on TPN. Survival time varies greatly depending on the patient

underlying disease. As illustrated in figure 8-3,

one study found that more than half of the cancer patients (average age 59 years) died within

6 months, and none survived beyond 30 months.

In contrast, only about 15 percent of patients with

nonmalignant gastrointestinal disorders (average

age 56 years) died within 6 months; over half survived at least 3 years, and 15 percent were still

alive after 8 years. No information is available

about average survival time of patients on tube

feeding at home (155).

Nutritional support procedures and equipment

used at home are the same as or very similar to

those used in hospitals and nursing homes, but

home care patients and their families must play

a much more active role in the treatment process. People on TPN at home and/or their families

must learn to use the pump correctly; start and

stop infusion; flush the catheter with saline solution and heparin following infusion; change the

sterile dressing at the catheter insertion site; and

recognize and respond to problems such as blockage of the catheter or air entering the bloodstream

via the catheter (40). Some people on TPN at home

mix their own formulas, and they must learn sterile technique and how to measure and combine

the ingredients. Others use premixed formulas
302 ● Life-Sustaining Technologies and the Elderly

Figure 8=3.—Survival of Albany Medical Center

Patients on Home TPN With Malignant and

Nonmalignant Disease

u

0 3 6 9 12 15 20 30

100

90

SOURCE: Oley Foundation, “Nutritional Support and Hydration for Critically

and Terminally Ill Elderly, ” prepared for the Office of Technology

Assessment, U.S. Congress, Washington, DC, 1985.

that are usually supplied by a hospital-based or

commercial home nutrition service.

Tube feeding at home is less complex than TPN,

and sterile technique is not necessary. However,

patients and/or their families must learn to use

the pump correctly, if a pump is needed; to check

the placement of the tube; to monitor the flow

rate and temperature of the formula; to flush the

tube with water after infusion; and to be aware

of potential complications such as aspiration of

formula into the lungs. Some patients and/or families who mix enteral formulas themselves need

to learn the process, but many patients, probably

the majority, use premixed formulas (148).

Nutritional support specialists agree that it usually takes about 2 weeks in the hospital to train

patients who are going home on TPN (85)89)101).

Training for patients going home on tube feeding usually takes 3 to 6 hours over the course of

several days in the hospital. Obviously, the patient’s

physical, emotional, and mental status affect training time.

There is concern that incentives for shorter hospital stays created by PPS and other cost containment programs restrict the time available for training patients who are going home on nutritional

support and ultimately will reduce the safety and

quality of home nutritional support for these patients (100). No data are available to determine

whether training times have decreased in response to PPS and other programs, and, if so,

whether this change has affected the safety and

quality of care.

Nutritional Support Personnel

for Home Care

From 1969, when the first patient went home

on TPN, until 1979, when the first commercial

home nutrition service entered the market (212),

home nutritional support patients were managed

by hospital-based nutritional support teams. Patients usually picked up their supplies from the

hospital pharmacy and transported them home.

Training was provided in the hospital, and followup visits from visiting nurses were discouraged, because the nurses were generally not

trained in TPN or tube feeding and their involvement often caused more confusion than benefit

(155).

As home nutritional support became more accepted, pharmaceutical, hospital, and medical supply companies established home nutrition services. These companies provide many services not

available from the early no-frills, hospital-based

programs, including delivery of supplies, training in the home, followup visits by trained staff,

and assistance with third-party billing. Such companies have extended the use of home nutritional

support by providing physicians who are not

trained in clinical nutrition with access to specially

trained nurses, dietitians, and pharmacists to monitor their home patients (155). Some nutritional

support specialists and others have expressed concerns about the quality of care provided by some

commercial home nutrition services. While recognizing that some of these companies provide

excellent care, some analysts worry that physicians may not adequately supervise their home
Ch. 8.—Nutritional Support and Hydration ● 303

patients who are managed by the companies, and

that physicians who are not experienced in nutritional support may delegate too much responsibility for treatment decisions to non-physician

staff of the company (61,85,188).

Commercial home nutrition services are not regulated by the Federal Government. It has been

suggested that some of these companies do not

provide adequate services for their home nutritional support patients and that regulation of the

industry may be needed to ensure safety and quality of care.

Standards for home nutrition care have been

published by the American Society for Parenteral

and Enteral Nutrition, These standards delineate

the role of the physician and other nutritional

support service providers, the need for written

policies and documentation of services, and procedures for patient selection, monitoring, and termination of home nutrition support (9). At present,

however, there is no mechanism for enforcing

these standards.

Photo credit: Foster Medical Corp.

Commercial home nutrition services provide training

in the home for nutritional support patients and

their families.

Cost and Reimbursement for

Nutritional Support in the Home

No precise information is available about the

cost of nutritional support at home. Both costs

and charges vary considerably, depending on the

specific procedures, supplies, formulas, and related services that are used and whether administrative and other costs are included. One OTA

contractor estimates that charges for TPN at home

typically range from $50,000 to $100,000 per year

and that charges for enteral nutrition at home

range from $3000 to $12,000 per year (155)0

Medicare, Medicaid, and most private insurance

cover tube feeding and TPN at home under specified circumstances. Nevertheless, arranging financing for home care patients is one of the most

difficult aspects of nutritional support at home,

and in some cases, decisions about whether to

send patients home on nutritional support depend

on the availability of reimbursement (101,171,182).

Medicare funding for tube feeding and TPN at

home is provided, as it is in nursing homes, under the Part B prosthetic device benefit. Coverage of home nutritional support under the Part

B prosthetic device benefit has three important

implications:

1. Medicare reimbursement is provided for 80

percent of covered charges, and another

source of payment must be found for the remaining 20 percent (the patient’s required

copayment);

2. the prosthetic device benefit requires that a

patient have “a permanently inoperative internal body organ or function thereof” (217),

and therefore does not extend to patients who

require short-term treatment; and

3. under the prosthetic device benefit, accessories and supplies, such as catheters, pumps,

dressings, and nutrient solutions are covered

as parts of the device. Initial training for the

patient or family is also covered, but since

the prosthetic device is expected to replace

an inoperative body organ, coverage for continuing services is theoretically unnecessary.

At present, there is disagreement between HCFA

and home nutritional support providers about

what continuing services are and should be pro-
304 ● Life-Sustaining Technologies and the Elderly

vialed for patients on home nutritional support.

Providers argue that services are essential for safe

and effective treatment for many patients and that

Medicare reimbursement under the prosthetic device benefit should include an allowance for continuing services. In contrast, HCFA argues that

many commercial home nutrition services provide few services and that current reimbursement,

which includes an allowance for initial training,

is more than adequate.

Continuing services associated with home nutritional support could be provided under the Part

A Medicare home health care benefit. This approach is not workable at present, however, because the home health care benefit covers only

short-term or intermittent skilled nursing care.

Furthermore, few home health care agencies employ nurses trained in nutritional support, and

services provided in the home by dietitians are

not covered by Medicare.

The number of patients receiving Medicare reimbursement for home nutritional support has grown

rapidly in the past few years. In 1984, in order

to contain escalating costs and eliminate what

some considered abuses in the program, HCFA

issued new guidelines for Medicare coverage of

home nutrition. The new guidelines state that patients must require nutritional support for at least

90 days; that reimbursement is allowed only for

the simplest (and thus least costly) pump that can

be used; and that patients are expected to mix their

own formulas unless a physician justifies in writing the need for premixed formulas (8). Each of

these guidelines could limit access to appropriate

care for some patients. However, OTA is not aware

of instances in which elderly patients have been

denied Medicare reimbursement on the basis of

the guidelines.

HCFA has questioned the charges submitted by

some home nutrition services and has proposed

new fee screens. Industry representatives object

to the way in which these fee screens were developed and to the proposed reimbursement levels

(2). OTA has not analyzed the prevailing charges

for home nutritional support or the adequacy of

HCFA’s proposed fee screens.

Medicaid and most private insurers pay for

home nutritional support in specified circumstances. Medicaid policies vary among States, but

many States require pre-authorization for treatment, and decisions about coverage are often

made on a case-by-case basis. Some Medicaid programs follow Medicare guidelines for coverage.

Blue Cross and Blue Shield and most other commercial carriers now cover home nutritional support, although policies vary with respect to coinsurance and deductibles.

Public Policy Issues for Nutritional

Support at Home

The primary public policy issues arising from

the preceding discussion of home nutritional support are potential limitations on access to home

nutritional support due to Medicare coverage and

reimbursement policies and questions about the

quality of care provided by some commercial

home nutrition services.

Because of the high cost of TPN and to a lesser

extent, tube feeding, most individuals and families cannot afford nutritional support at home

without third-party insurance coverage. Some

analysts believe that current and proposed Medicare regulations limit access even for long-term

treatment. Moreover, since Medicare does not

cover temporary or short-term nutritional support at home, some patients who receive nutritional support in the hospital but are discharged

before the course of treatment is completed–a

situation that is likely to occur more frequently

because of incentives for early hospital discharge

related to Medicare’s prospective payment system

-cannot be reimbursed for continued treatment

at home. Nor does Medicare cover short-term nutritional support at home for malnourished patients prior to hospitalization for surgery or other

treatments.

A related issue is access to nutritional support

for patients who are physically or mentally unable to care for themselves and have no family to

assist them at home. Although it is sometimes possible to provide 24-hour assistance for such patients in the home (124), the cost of this care is

prohibitive for most individuals, and public funding is seldom available for it, As a result, such patients may be placed in nursing homes. Anecdotal

evidence suggests that in some cases-especially

if the patient requires TPN and there is no nurs-
Ch. 8.—Nutritional Support and Hydration ● 305

ing home in the area that will accept the patient lower cost alternative to providing them in hoson TPN—hospital staff may decide not to initiate pitals, others fear that some patients could be kept

treatment, and the patient may die. alive on expensive nutritional support at home

Although some people advocate increased use with little real benefit to them. These issues are

discussed below. of nutritional support procedures at home as a

MAKING DECISIONS ABOUT NUTRITIONAL SUPPORT

AND HYDRATION

Decisions about the use of nutritional support

and hydration are based on clinical, legal, ethical, and financial considerations and reflect the

training and preferences of the health care providers involved in the decision and in some cases

the wishes of the patient and family. Clinical and

financial considerations that affect decisionmaking have been discussed above. Decisionmaking

practices vary by setting and are discussed later

in this section.

Legal and ethical considerations affect decisions

about the use of nutritional support and hydration in all settings. They are discussed at some

length here because of their importance in the

debate about public policy regarding nutritional

support and in individual treatment decisions.

Legal and Ethical Considerations in

Decisions About Nutritional Support

and Hydration

Legal Cases Involving Nutritional

Support and Hydration and Their

Implications for Clinical Decisionmaking

Most court cases involving nutritional support

and hydration have concerned withholding or

withdrawing treatment, but a few cases have dealt

with access to treatment and quality of care. The

first legal case invoking withdrawal of nutritional

support and hydration from an adult was decided

in 1983. Since then, State courts have ruled on

many such cases. Six of the most frequently cited

cases are summarized in box 8-A.a Each of these

cases resulted in a decision that authorized withholding or withdrawal of nutritional support and

hydration in certain circumstances. The rulings

8

See also the Bouvia case (36) discussed in ch. 3.

remain controversial, however, and some legal

scholars and others disagree with various aspects

of each decision.

From the point of view of clinical decisionmaking, it should be noted that although as of early

1987, there was considerable agreement among

court decisions with regard to nutritional support

and hydration, this was not true at any time previously. In early 1986, for example, the Massachusetts court ruling that Paul Brophy's gastrostomy

tube could not be withdrawn was still in effect,

as were a Florida court ruling that Helen Corbett's

nasogastric tube could not be removed, and a California court ruling that Elizabeth Bouvia could

not refuse tube feeding (see ch. 3). Moreover, a

few recent lower court cases have resulted in rulings that tube feeding could not be withdrawn;

these decisions were on appeal as of early 1987

(200). Thus, although the most recent court decisions involving nutritional support and hydration

have authorized withholding or withdrawal, it is

understandable that physicians, nurses, hospital

and nursing home administrators, and others remain unsure about the mandates of the law.

Given this uncertainty, health care professionals

are likely to provide nutritional support and hydration in cases they are unsure about. This likelihood is enhanced by the inclination of health care

professionals to ‘(err on the side of life” and by

the fear health care professionals have about negative publicity for withholding or withdrawing

nutrition and fluids.

The threat of a criminal murder charge is an

even stronger disincentive to withholding or withdrawing nutritional support and hydration. No

physician has ever been convicted of murder for

withholding or withdrawing these procedures (see

ch. 3). However, one district attorney has stated:
306 • Life-Sustaining Technologies and the Elderly

●
Ch. 8.—Nutritional Support and Hydration ● 307

SOURCE: Office of Technoio#y A=WJUK@, 1S87. .. 

(T)he most fundamental function of the criminal justice system is to protect society from people who would deliberately deprive other people

of their lives. Depriving a patient of food and fluid

may well make sense in a variety of medical cases.

However, when that determination leads inevitably to death, as is the case with deprivation of nutrition and hydration, then the medical profession

has crossed over into an area beyond medicine,

(and) . . . that practitioner rightfully runs the risk

of scrutiny and penalty by the criminal justice system (191).

Even if legal charges do not lead to conviction,

many physicians fear the impact of such charges

on their other patients, their reputations, and their

malpractice insurance rates.

In the Conroy decision, the New Jersey Supreme

Court set out procedures for decisions about withholding or withdrawing nutritional support from

an incompetent nursing home resident. The court

ruled that a guardian must be appointed; the State

ombudsman for Institutionalized People must be

notified and must immediately investigate the case

for possible patient abuse; and 3 physicians must

agree that the patient has no more than 1 year

to live (18,65) (see ch. 3).

Some analysts argue that requiring time-consuming and cumbersome procedures, such as the appointment of a guardian and the involvement of

three physicians, discourages decisions to withhold or withdraw nutritional support. They also

argue that requiring an investigation by the ombudsman (whose function is to investigate abuse

cases) equates withdrawal of nutritional support

with patient abuse. This is a clear disincentive for

such decisions (18,121)—a disincentive that is

applauded by some and regreted by others.

In the first year of the new procedures, only

one case was submitted to the ombudsman (see

below). Some people believe that families and

health care professionals in New Jersey may be

making decisions about withholding and withdrawal without following the required procedures, because they are too cumbersome (206).

In June 1987, the New Jersey Supreme Court

handed down rulings on two cases that appear

to substantially modify the requirements created

by the Conroy decision. One case concerned Hilda

Peter, a 65-year-old nursing home resident who

was in a persistent vegetative state and was tube

fed. In 1986, the Ombudsman refused to allow

removal of her feeding tube because there was

no certainty that she had less than 1 year to live

(198). In its June 1987 decision, the court determined that since Miss Peter was in a persistent

vegetative state, like Karen Quinlan, the life expectancy test required by the Conroy decision

should not have been applied and that the tube

could be withdrawn on the basis of evidence that

she had previously expressed a desire not to be

maintained in such a condition.

The other case concerned Nancy Jobes, a 31-

yeard-old nursing home resident who was in an

irreversible coma and had been tube fed for 6

years. In 1986, a New Jersey court approved her

husband’s request to remove the feeding tube, but

the decision was appealed (96). In its June 1987

decision, the court determined that the family

could exercise the patient’s right to refuse tube

feeding without involvement of the Ombudsman.
308 ● Life&staining Technologies and the Elderly

A final legal question that may affect decisions

about withholding or withdrawing nutritional support and hydration is the liability of nurses for

these decisions. While physician liability has received considerable legal attention, the liability

of nurses has received less attention. Yet nurses

are usually responsible for providing the procedures, and they may have access to more information than the physician about patient and family

wishes and the patient’s physical and emotional

response to providing, withholding, or withdrawing nutritional support (229).

In addition to cases involving withholding or

withdrawal, several legal cases have dealt with

access to nutritional support and quality of care.

While cases on withholding and withdrawal have

generally involved tube feeding and nursing home

residents, these cases involve TPN and hospital

patients. For example, in 1985, a Cook County,

Illinois jury awarded $2.3 million in a malpractice case involving a 53-year-old patient who died

in 1980. He was receiving TPN in a hospital, and

the suit alleged that the physician and the hospital failed to monitor his blood sugar level adequately. He went into a coma when his blood sugar

rose to dangerously high levels, and he died 4

months later without ever regaining consciousness (138).

In 1982, a family was awarded $400)000 following the death of a patient with a gastrointestinal

disease. The family alleged that the patient’s death

was caused partly by the physician’s failure to provide nutritional support. Some observers expect

an increase in such suits (201)208).

The decisions in these cases suggest that nutritional support has become standard care for certain conditions and that procedures such as careful monitoring of blood sugar levels are considered

routine when nutritional support is used. On the

one hand, these decisions create an incentive for

increased use of nutritional support. They could

also encourage the formation of nutritional support teams, since patients treated by these teams

experience fewer complications than other nutritional support patients (201). On the other hand,

PPS is believed by many analysts to discourage

the use of nutritional support, as discussed earlier.

These contradictory pressures place physicians

and hospital administrators in a difficult position

in which nutritional support treatments are simultaneously required to provide standard care and

avoid malpractice liability, yet may not be adequately reimbursed in some cases.

Legal and Ethical Issues Surrounding

the Use of Nutritional Support and

Hydration

In connection with nutritional support and

hydration, the legal and ethical issues about which

there has been the most debate are:

●

●

●

●

●

●

whether tube and intravenous nutrition and

hydration are medical treatments or basic

supportive or nursing care,

whether they are extraordinary or ordinary

care,

whether they are burdensome for the patient,

whether withdrawing tube or intravenous

nutrition and hydration from terminally ill

or severely debilitated patients is killing or

allowing the patient to die,

whether ‘(quality of life” should be a factor

in decisions about the use of nutritional support and hydration, and

whether nutritional support and hydration

may be withheld or withdrawn frompatie

n

ts

who are not terminally ill and not expected

to die imminently.

Differences of opinion among people about

these issues may reflect: 1) differences in religious

and cultural background that affect beliefs about

death and the obligation of the individual and society to care for sick and dying people; 2) differences in previous experience with nutritional support and hydration that affect beliefs about the

efficacy and risks of the procedures; and 3) other

personal emotional and psychological factors that

affect the individual’s attitudes about starvation,

suffering, the value of life, and its relationship to

quality of life.

For health care professionals, training, experience, and professional ethics also play a role in

determining attitudes. For example, many ethicists have concluded that the distinctions that are

sometimes drawn between extraordinary and ordinary care are neither valid nor helpful in decisions about life-sustaining treatment (see ch. 4).

Yet some health care providers consider these distinctions important and are reluctant to withhold
Ch. 8.—Nutritional Support and Hydration ● 309

Conflicting attitudes about withholding and withdrawing nutritional support and hydration make

it likely that any federally mandated guidelines

about which patients should or should not receive

these procedures would result in decisions that

run counter to the strongly held beliefs of many

people.

Some ethicists fear that allowing withholding

and withdrawal in some cases will create a “slippery slope,” eventually leading to withdrawal of

nutritional support and hydration from handicapped and “pleasantly senile” people (42,87,157,

192). Others argue that decisionmaking based on

the “slippery slope” concept sacrifices the welfare

of individual patients in order to protect society,

which may itself be unethical (52,121).

Legal and ethical debate about nutritional support and hydration has focused on whether they

are correctly considered medical treatments or

basic supportive or nursing care. This distinction

is important for legal purposes because courts

have ruled that competent persons have a right

to refuse medical treatments and that medical

treatments can legally be withheld or withdrawn

from incompetent patients, both within certain

limits. Many ethicists agree that the distinction

between medical treatment and basic supportive

or nursing care is valid for ethical analysis. However, some people, including some caregivers in

hospitals and nursing homes, who are unfamiliar

with the legal and ethical arguments, believe that

withholding and withdrawing nutritional support

and hydration is wrong, regardless of whether

the procedures are defined as medical treatments

or basic supportive or nursing care.

One question that is rarely discussed in this context is whether patients have a right to refuse basic

supportive or nursing care. Yet many health care

providers recognize such a right. It is unclear how

recognition of a patient’s right to refuse such care

relates to the ongoing legal and ethical debate

about whether nutritional support and hydration

are medical treatments or nursing care and how

recognition of a right to refuse nursing care is

related to caregivers’ attitudes about withholding and withdrawing nutritional support and

hydration (232).

The recent decision of the Massachusetts Supreme Judicial Court in the Brophy case (38) allowed removal of Mr. Brophy’s gastrostomy tube

but does not compel the hospital or individual

health care professionals to withhold feeding if

that would violate their ethical principles. Instead,
310 . Life-Sustaining Technologies and the Elderly

the court authorized Mr. Brophy’s transfer to

another setting for withdrawal of the tube. This

“conscience clause” in the Brophy's decision may

alleviate concerns of health care professionals and

facilities about being forced to withdraw these

procedures against their convictions. In some

cases, however, conflict is inevitable between this

right of health care professionals and facilities,

on the one hand, and the right of the patient to

refuse treatment, on the other hand.

The conflict arose in the recently decided case

of Beverly Requena, a 55-year-old woman with

amyotrophic lateral sclerosis (Lou Gehrig’s disease), a disease that involves degeneration of portions of the spinal cord, progressive loss of muscle control, increasing paralysis, and eventual

death. In June 1986, Mrs. Requena notified the

hospital where she was a patient that when her

disease progressed to the point where she could

not swallow, she would refuse tube feeding. The

hospital has a policy against withholding food or

fluids from any patient and therefore asked Mrs.

Requena to leave. She refused, and the hospital

went to court to force her to do so.

In 1986, the Superior Court of New Jersey ruled

on the case. The judge stated:

There is no good outcome to this case. Regardless of any decision made by me or anybody else,

one way or another, in one place or another,

Beverly Requena will die an unpleasant death in

the relatively near future. Going to (another hospital) is a realistic alternative. But if Mrs. Requena

goes there, she will experience extra suffering

over and above the grim suffering necessarily inherent in her disease and in her choice of no artificial feeding. Requiring (this) hospital to continue

to care for Mrs. Requena even though she does

not accept artificial feeding is also a real alternative. However, that would entail significant judicial interference with the policies of the hospital

and would impose special burdens upon individual health care employees of the hospital (97).

The court ruled, finally, that Mrs. Requena had

the right to refuse tube feeding and that she could

remain in the hospital until her death. Without

any doubt, however, this issue will arise again in

other cases.

Although most of the issues discussed above

have been the subject of lengthy legal and ethical

debate, several other issues with profound legal

and ethical implications have received little attention. They are:

●

●

●

whether tube and intravenous nutrition and

hydration must be provided for all patients

who would benefit, and, if so, whether the

government is obligated to pay for these procedures for people who cannot otherwise afford them;

whether nutritional support, especially expensive TPN, must be provided for all patients

who request it or whose families request it

for them, independent of any demonstrable

medical benefit to them; and

whether tube and intravenous nutrition and

hydration should be provided in facilities

where there is no staff trained to evaluate

the patient’s need for treatment and provide

it safely.

In general, these issues involve questions of access to care and quality of care, as opposed to questions about withholding or withdrawing care.

State Living Will Laws

Living will statutes in 20 States distinguish between nutritional support and hydration and

other life-sustaining medical procedures. As of October 1986, statutes in eight States (Colorado, Connecticut, Georgia, Idaho, Maine, Missouri, Oklahoma, and Wisconsin) specify that nutritional

support and hydration are not among the lifesustaining treatments people may refuse with a

living will. In 12 States (Arizona, Florida, Hawaii,

Illinois, Indiana, Iowa, Maryland, New Hampshire,

South Carolina, Tennessee, Utah, and Wyoming),

the language of the statutes is less clear but seems

to say that nutritional support and hydration

needed for patient comfort may not be withheld

or withdrawn, implying that procedures that are

not needed for patient comfort may be withheld

or withdrawn. Living will statutes in other States

either allow withholding and withdrawing of nutritional support and hydration or do not refer

to them specifically (197).

In States where living will statutes do not allow

withholding or withdrawal of nutritional support

and hydration, patients may retain basic common

law and constitutional rights to refuse such pro-
Ch. 8.—Nutritional Support and Hydration • 311

cedures. The 1986 decision of the Florida Appeals

Court in the Corbett case (62) supports this conclusion.

Conversely, anecdotal evidence suggests that

even in States where living will statutes do allow

withholding and withdrawal of nutritional support, a patient’s refusal of tube feeding may not

be honored, as illustrated in the following case:

An elderly California man had a living will and

a durable power of attorney drawn up by his lawyer prior to radical neck surgery for cancer. He

told his doctors that he did not want nasogastric

tube feeding, and they agreed to comply with his

wishes. Nevertheless, following surgery, a nasogastic tube was inserted. Despite the efforts of his

wife who had authority to make decisions for him

through the durable power of attorney, the doctors refused to remove the tube, saying that it was

medically necessary. When told about the living

will and durable power of attorney a hospital social worker said, “Oh, that would never holdup

in court.” The tube remained in place until the

man died 3 weeks later (59).

Making Decisions About Nutritional

Support and Hydration in Hospitals

Decisions about nutritional support and hydration in hospitals are usually made by a physician,

based on his or her perception of the patient’s

condition and the appropriate treatment for that

condition; the physician’s decision may also be affected by the opinions of other staff, the patient,

and family, and legal, ethical, and financial considerations. Since no information was available

at the start of this OTA assessment about how

these decisions are made for elderly patients, a

survey of nutritional support specialists was conducted for OTA.9 Findings from the survey cannot be generalized beyond the individual respondents and the hospitals they represent, partly

because of the low response rate (about 12 per-

%uring 1985, questionnaires were mailed to about 4,000 members of the American Society for Parenteral and Enteral Nutrition,

a professional society that represents physicians, nurses, dietitians,

and pharmacists involved in nutritional support. About 470 questionnaires were returned, some of which represent responses of

more than one individual, since members at the same hospital submitted joint questionnaires in some cases (115).

cent) and partly because of bias introduced by

the fact that only hospitals that employ nutritional

support specialists were included in the survey.

Nevertheless, the findings, summarized below,

provide some information about decisionmaking

in these hospitals and the attitudes of some nutritional support specialists who treat elderly patients. OTA has no information about decisionmaking in other hospitals or about the attitudes

of nutritional support specialists who did not respond to the surveyor of other health care professionals who are not nutritional support specialists

but are involved in decisions about treatment for

elderly patients in hospitals.

Survey respondents said that in the hospitals

where they work, a team including a physician,

a dietitian, and a nurse usually evaluates the patient. Once a decision is made to provide nutritional support, the dietitian usually selects the formula for tube feeding, while the physician and

the pharmacist usually select TPN formulas.

Survey respondents indicated that the patient’s

age per se is not and should not be a consideration in decisions about whether to provide nutritional support. However, almost half said that the

patient’s mental status is a consideration in these

decisions. The reason most frequently cited for

this was the likelihood that confused patients will

pull out the tube or catheter.

About three-quarters of respondents said that

terminal illness is not a contraindication for nutritional support and that nutritional support can

contribute to quality of life for terminally ill patients. However, about half said, “Terminally ill

patients should not have their lives prolonged by

nutritional support,” and agreed that nutritional

support “should be terminated when other lifesupport methods, such as respirators, are removed”; 31 percent disagreed with the latter statement, and 24 percent of respondents were unsure.

Most respondents disagreed with the statement,

“Starvation is an acceptable way of dying for the

terminally ill patient .“ One individual commented,

“Dehydration/starvation is a terrible way to die!

Many times enteral tubes enable medications to

be given which contribute to less painful deaths;

also other medications which reverse illness. ”
312 Ž Life-Sustaining Technologies and the Elderly

About half the respondents said that complications are more common in elderly than younger

people; 44 percent said that the rate of complications is about the same, and 2 percent said complications are less common in the elderly. Almost

all respondents (93 percent) noted that patients

with multiple diseases have more complications

than those with a single disease, but the existence

of multiple diseases was not seen as a contraindication for treatment. Thus, most of the respondents (91 percent) disagreed with the statement,

“Nutritional support is dangerous to use in frail

elderly patients.”

The last item on the survey questionnaire was

an open-ended question inviting comments on nutritional support of elderly patients. Representative comments from nutritional support specialists

are cited below:

“Many elderly people are strong enough to overcome the crisis of illness and go on to resume their

lives. It seems discriminatory to withhold nutritional support only because of age.”

“When I first came to this facility, I was amazed

at the physical appearance of the geropsychiatric

patients. Visible signs of long-term . . . malnutrition were evident. After much persistence and determination (i.e., educating physicians and overcoming resistance from other direct care staff),

patients with aggressive nutritional support were

showing improved wound healing, increased resistance to infection and increases in visceral protein status.”

“Too often they are left without nutrition support of any kind while being bombarded with

other forms of treatment. ”

“Nutritional support in the elderly is most frequently overlooked in many instances due to: (1)

ignorance of special nutrient needs of elderly patients; (z) lack of knowledgeable personnel to consult, evaluate, monitor, and operate necessary

equipment; (3) cost of products/equipment; (4) low

priority of nutritional problems as compared to

physical disabilities, failure to recognize potential relationships.”

“I care for some young patients (less than 65)

and reluctantly support them (because they are

in a vegetative state). Yet I have treated elderly

patients (greater than 75) who are alert, ambulatory, and enjoy life even in the face of terminal

illness.”

“I have seen patients that want to die but after

nutritional intervention are glad to be alive.”

Little is known about the attitudes of patients

or family members toward tube or intravenous

feeding or the role they usually play in the decisionmaking process. In general, hospitalized patients and their families tend to accept the advice

of the physician about necessary medical procedures, and it is likely that most elderly patients

and their families accept the physician’s recommendation for tube or intravenous nutrition and

hydration. However, some hospital patients refuse

nutritional support if they are given the opportunity (19).

It is not likely that hospital patients or their families would request or demand nutritional support

when it is not proposed by the physician. In the

case of patients who cannot eat at all, the outcome—malnutrition and eventual death—is obvious, but for patients who are able to take in at

least some food and fluids by mouth, the outcome

is less obvious, and many patients and families

may not be sufficiently aware of the relationship

between nutritional status and outcome to request

nutritional support. Nor are they aware of the

potential risks involved in nutritional support or

the need for careful monitoring once the procedures are initiated.

In many hospitals, formal consent from the patient or family is required for TPN and placement

of enteral feeding tubes that involves surgery, e.g.,

gastrostomy or jejunostomy tubes, but is not usually required for nasogastric tubes (115,155). In

some hospitals, nasogastric tubes are placed while

the patient is unconscious during surgery, sometimes without the prior knowledge of the patient

or family. In other hospitals, these procedures are

routinely discussed with the patient or family

ahead of time.

Making Decisions About Nutritional

Support and Hydration in Nursing

Homes

Decisions about the use of nutritional support

for nursing home residents are often made in hospitals, and some patients on long-term tube feeding remain in the hospital for prolonged periods.
Ch. 8.—Nutritional Support and Hydration ● 313

Since many of the same considerations that affect decisions about nutritional support for nursing home residents also affect these decisions for

long-term hospital patients, much of the following discussion is also relevant to them.

Decisions about nutritional support for nursing home residents are ultimately made by the

physician who writes the treatment orders. When

such a decision is made in a hospital, the physicians may make the decision independently or consult with the patient family, staff nurses, the hospital dietitian, the social worker, and sometimes

the patient. Nutritional support is frequently used

on a short-term basis in hospitals, and anecdotal

evidence suggests that when a decision is made

in the hospital to initiate nutritional support for

a long-term care patient, the decision is sometimes

made without explicit recognition or discussion

of its implications—that a patient may continue

on nutritional support for the rest of his or her

life, because once the procedures are started,

many health care providers are reluctant to withdraw them (63).

When a decision to initiate nutritional support

is made while a patient is in a nursing home, the

physician is still responsible, but the dietitian and

nurses frequently alert the physician to the need

for treatment. Anecdotal evidence indicates that

nutritional support is sometimes initiated for severely debilitated nursing home residents even

when the physician would prefer to withhold it.

This situation may occur because one or more

staff nurses call the physician repeatedly to report poor intake of food and fluids, and eventually the physician orders tube feeding. In these

instances, the nurses may be motivated by: 1)

professional standards that require them to report significant changes in the resident’s condition; 2) fear that they will be liable for the resident’s death if they do not call the doctor; 3) a

conviction that it is wrong to let such residents

die of malnutrition or dehydration; or 4) their discomfort with watching the resident’s condition

worsen daily. In fact, some nurses resent a doctor’s order to withhold or withdraw nutritional

support when the doctor will not be present

through the dying process.

Little is known about how or how often decisions are made to withhold or withdraw nutritional support from nursing home residents. In

some cases, physicians may make these decisions

independently, while in other cases, many individuals are involved, including the patient, the family, one or more physicians, nurses, dietitians, social workers, clergymen, lawyers, hospital or

nursing home administrators, and even institutional review boards or ethics committees. Decisionmaking for most nursing home residents probably falls between these two extremes, but the

difficulty of the decision and disagreement among

those involved sometimes result in these cases being taken to court.

One of the most controversial questions in decisions to withhold or withdraw nutritional support is whether a patient’s mental status is or

should be a factor in the decision. In one study

that addressed this question, physicians at a VA

medical facility were asked whether they would

tube feed a severely confused 70-year-old woman

who was refusing to eat by clamping her mouth

shut and spitting out food. Fifty-nine percent of

the physicians said they would tube feed this patient, and 41 percent said they would not. In response to a general question, “How often do you

attempt to tube feed ward patients with chronic

irreversible dementia?” 4 percent of the physician’s said “rarely”; 11 percent said “sometimes”;

Photo credit: Gretchen Kolsrud

Severely debilitated nursing home residents are

sometimes maintained for prolonged periods on

nasogastric tube feeding.
314 ● Life-Sustaining Technologies and the Elderly

41 percent said “most times,” and 44 percent said

“always” (109).

Nurses’ attitudes toward this question were addressed in another study (155) in which the head

nurse on each unit in one nursing home was asked

which treatments were “too aggressive” for specific residents on her unit. According to the nurses,

nasogastric tube feeding was “too aggressive” for

31 percent of the residents. This increased to 46

percent if the same residents became permanently

unconscious. Nasogastric hydration was considered too aggressive for 11 percent of residents,

increasing to 22 percent if they became permanently comatose. (Although these numbers may

seem high to some readers, it is important to note

that the procedures were considered appropriate for most residents; for example, nasogastric

hydration was considered appropriate for 89 percent of the residents.)

All the nursing home residents from whom the

nurses in this study said they would withhold

nasogastric hydration had permanent neurological conditions resulting in impaired mental status. These patients comprised only 20 percent of

all residents with impaired mental status in the

facility, however, and the nurses said that the other

80 percent should receive nasogastric hydration.

Thus, the patient’s mental status alone was not

the deciding factor (155).

A third study (229) compared nurses’ and physicians’ attitudes about tube feeding nursing home

residents. One hundred and twenty-four physicians who were medical directors or house physicians in nursing homes and 157 nurses who were

directors of nursing in nursing homes were asked

whether they would favor tube feeding for persons described in a series of case examples. The

cases varied in terms of the age of the resident

(early seventies or late eighties), his or her mental status (occasionally confused or generally confused) and happiness (generally happy and contented or generally unhappy and frustrated).

Results indicate that nurses were significantly

more likely than physicians to favor tube feeding. There was a trend for nurses and physicians

who were Catholic to favor tube feeding, and for

nurses and physicians with more years of experience not to favor it, but neither of these results

reached significance.

This study found that patient happiness was the

strongest influence on nurses’ and physicians’ attitudes toward tube feeding-both nurses and physicians favored tube feeding more often for patients described as happy than for those described

as unhappy. According to the researchers:

Long-term care provides an opportunity for observing the patient’s enjoyment or dissatisfaction.

Enjoyment of life is quite variable in nursing home

residents: some appear quite happy despite severe

limitations, while others have great difficulty accepting even mild impairments. Our results suggest that staff perception of an individual’s level

of enjoyment plays an important role in ethical

decisionmaking (229).

The study found that younger patients (early

seventies) were given higher preference for tube

feeding than older patients (late eighties). The patient’s mental status was a significant factor in the

treatment preferences of physicians but not nurses

(229).

Use of the patient’s mental status as a factor in

decisions about whether to use nutritional support and hydration is problematic for two reasons. First is the difficulty of assessing mental status in elderly people (215). Second is the fact that

impaired mental status and even coma can be

caused by many factors, including malnutrition,

dehydration, infections, other treatable illnesses,

and medications (111,207). A comprehensive diagnostic evaluation can often identify the causes,

but many nursing home residents do not receive

such evaluations, thus allowing the possibility that

nutritional support could be withheld on the basis of impaired mental status when the impairment was reversible.

Many legal and ethical scholars and clinicians

have proposed criteria for identifying patients

from whom nutritional support and hydration

may be withheld or withdrawn. Some scholars

and clinicans would allow withholding or withdrawal only if death is imminent or the patient

is so badly deteriorated that nutritional support

is physically impossible or extremely painful

(22,160), and some would apply these criteria to

both competent and incompetent patients (23).

Other scholars and clinicians begin with the

premise that competent patients may refuse nutritional support and hydration. For patients who
Ch. 8.—Nutritional Support and Hydration • 315

are decisionally incapable or adjudicated incompetent, some would allow withholding or withdrawal

of nutritional support and hydration if the patient

is terminally ill and the course of his or her disease is unalterable or if the patient is in a persistent noncognitive state (sometimes referred to as

irreversible coma or persistent vegetative state)

(43,71,127,132,156,205). In 1986, the American

Medical Association endorsed this position, stating that it is ethically permissible for doctors to

withhold tube and intravenous nutrition and

hydration from patients who are terminally ill or

irreversibly comatose (6). Some scholars and clinicians would also allow withholding and withdrawal from some severely debilitated and irreversibly demented patients, especially when

restraints are required to keep the patient from

pulling out the feeding tube or catheter (118)123)

156)227).

Legal and ethical scholars and clinicians who

write about withholding and withdrawing nutritional support and hydration define the categories of patients they are discussing very carefully.

Many qualify their statements by stressing the importance of any previously stated wishes of the

patient and wishes of the family and staff who

are caring for the patient. Most add that treatment should be continued if there are doubts

about the patient’s diagnosis or prognosis. These

careful distinctions and qualifications, however,

are sometimes lost in informal discussions and media presentations, thus leaving the erroneous impression that some of these scholars and clinicians

advocate widespread withholding and withdrawal

of treatment from all confused or debilitated

elderly patients.

Some legal and ethical scholars, health care

providers, and others fear that if nutritional support and hydration can be legally and ethically

withdrawn from some severely debilitated or irreversibly demented nursing home residents, the

procedures will eventually be withdrawn from

many residents (the “slippery slope)’). There are

no data to test the validity of these fears. On the

one hand, there are many problems in the general quality of care provided by some nursing

homes (99)216)) and it could be assumed that decisions to withhold or withdraw nutritional support and hydration might be made too easily or

too often in such facilities. In at least one State,

several abuse complaints associated with withdrawal of these treatments have been investigated

(136).

On the other hand, despite the many recognized

problems in nursing homes, it is clear that nurses

and nursing assistants in these facilities frequently

succeed in sustaining the lives of very severely

debilitated residents for prolonged periods, and

many of these direct caregivers resist withdrawal

of treatment from residents. Although no approach is foolproof, involvement of these caregivers in the decisionmaking process may provide

some assurance that nutritional support and

hydration are not withheld or withdrawn too

quickly or too often.

An unknown but probably small number of

nursing homes have formal policies for decisions

about the use of nutritional support and hydration. Some nursing homes have developed limited

treatment policies, but one study (135) found that

few such policies addressed nutritional support.

Those that did address nutritional support recommended hand feeding but did not require tube

feeding if oral feeding was impossible. Some facilities require that any limited treatment order

must state specifically whether intravenous fluids,

TPN, tube feeding, and other treatments are to

be provided for the resident (82).

Little is known about the attitudes of nursing

home residents or their families toward tube or

intravenous nutrition and hydration or about their

role in decisionmaking. Anecdotal evidence indicates

that some patients fear this form of treatment.

. .

Many elderly patients may share this lady’s feeling. In discussing the attitudes of competent elderly people toward the use of nutritional support for themselves in the future, one physician

63-216 0 - 87 - 8 : QL 3
316 ● Life-Sustaining Technologies and the Elderly

has stated definitively, “I have never spoken with

an elderly patient who requested that a vegetative state be maintained by artificial alimentation”

(63). Additional anecdotal evidence that some people fear artificial feeding is the observation that

it is sometimes used by physicians and nurses as

a threat—”If you don’t eat, we will have to feed

you with a tube”—in order to convince them to eat.

Family attitudes toward nutritional support and

hydration vary widely. Some family members are

opposed to prolonging the patient’s life with nutritional support and hydration. Yet they may also

feel intensely guilty about suggesting that the procedures be withdrawn (64). Because of their ambivalence, they are easily swayed by comments

of the physician, nursing home staff, or a trusted

clergyman. Other families have religious or moral

convictions that prohibit withdrawal of nutritional

support.

In nursing homes, as in hospitals, formal consent of the resident or family is generally required

for TPN and “invasive” enteral procedures, such

as gastrostomy tube feeding. In some nursing

homes, formal consent is also required for nasogastric tube feeding. In many facilities, however, formal consent is not required for nasogastric tube

feeding.

Many nursing home residents who receive nasogastric tube feeding are confused. In facilities

where this procedure can be initiated and maintained for prolonged periods without formal consent, there is no incentive for careful evaluation

of whether the resident is decisionally capable

with regard to the procedure. As a result, nasogastric tube feeding is initated and continued for

prolonged periods for nursing home residents

who are assumed to be incapable of making health

care decisions—that is, when they say they don’t

want to be tube fed, their statement is disregarded,

yet they have not been adjudicated incompetent;

nor has their decisionmaking capacity been formally assessed. Use of a gastrostomy tube for such

a patient requires formal consent from a surrogate. For nasogastric tube feeding, even if a surrogate has been designated, the surrogate’s consent is not required.

Anecdotal evidence suggests that in some cases,

long-term use of nasogastric tube feeding for confused patients may reflect real or perceived difficulties in identifying a surrogate and/or a reluctance of some health care providers to consult

with a designated surrogate.

Making Decisions About Nutritional

Support and Hydration for Patients

at Home

The decision to propose home nutritional support is usually made by the health care providers

who have been managing the patient’s nutritional

support in the hospital. Since the patient and/or

patient’s family will be responsible for most aspects of the home treatment, however, their attitudes about it and their willingness to learn the

treatment procedures are crucial factors in the

final decision. Other important factors are the

availability of medical backup for emergencies and

financial arrangements that permit the patient and

family to afford these expensive procedures without severe hardship (155). In addition, if the patient will have primary responsibility for the procedures, he or she must have adequate strength,

manual dexterity, visual acuity, and hand-eye coordination to perform the procedures and sufficient cognitive ability to learn and remember them

(101). Otherwise, family or other lay caregivers

must be available to provide the procedures.

Several patient characteristics could dissuade

family members from attempting to manage TPN

or tube feeding at home. For example, patients

who are medically unstable, bedridden, incontinent, or unable to cooperate in their care for any

reason are very difficult to manage at home. Those

who pull out their feeding tubes or catheters are

also difficult to manage, and while some patients

in hospitals and nursing homes have their hands

tied to prevent them from pulling out feeding

tubes or catheters, it is unlikely that many families would be willing to use such restraints on

a regular basis at home.

In many cases, commercial home nutrition services are involved in the decisions about initiating

home nutritional support. Some companies have

formal patient selection procedures that include

assessment of the patient’s physical, mental, and

emotional status, the availability of family support,

the suitability of the home, and the availability
Ch. 8.—Nutritional Support and Hydration • 317

of storage space for supplies and equipment. Some

companies also require that the patient or family

demonstrate mastery of nutritional support procedures in the hospital before being accepted for

home care by the company (224).

It is sometimes said that profitmaking companies and clinical enthusiasts who provide home

nutrition services now encourage overuse of the

procedures or will do so in the future. However,

the need for active patient and/or family involvement in home nutritional support minimizes the

potential for overuse. Some patients and families

may decide against home TPN or tube feeding because they perceive it as complex, uncomfortable, burdensome, or invasive. Thus, one OTA contractor has concluded:

Although it is always a possibility that in borderline situations (home TPN or enteral nutrition)

could be overused by clinical enthusiasts, a natural and substantial brake on such abuse is the

strong patient preference to live free of tubes and

complex technology. Only when patients and their

families experience a quantum leap of better

health and well being will they persist with such

complex endeavors (1.55).

In addition, four other factors guard against

overuse of home nutritional support:

●

●

●

Some nutritional support specialists who provide home care services have told OTA that

patients should not be sent home on nutritional support if there is no possibility of a

“meaningful” existence (155,224). Although

“meaningful” is difficult to define, it is clear

that these specialists reject the notion of sending patients home on nutritional support who

will have very poor “quality of life.”

Nutritional support specialists are conscious

of the high cost of treatment and of the concern that these expensive treatments may be

overused. Several of them have told OTA that

they do not want nutritional support to “be

like dialysis)” which they believe is used for

patients for whom it is futile or inappropriate.

Individual physicians and hospital-based and

commercial home nutrition services assume

considerable legal liability for patients they

supervise at home. For this reason, they are

unlikely to encourage home care for patients

who are unwilling or unable to learn and com -

●

ply with treatment procedures or are otherwise at risk for complications associated with

treatment.

Home nutritional support is reimbursed by

Medicare as a prosthetic device, as described

below, and level of reimbursement is based

on the supplies that are used. An additional

fixed sum is included in the overall reimbursement rate for services such as teaching the

patient and responding to emergencies. When

patients are medically unstable or physically,

mentally, or emotionally unable to comply

with the necessary treatment procedures or

the family is unable or unwilling to assist with

treatment, more services may be needed. If

these services are provided, the cost of the

treatment may exceed reimbursement. If

services are not provided, there is increased

risk of legal liability.

Though not conclusive, these factors suggest that

the potential for overuse of home nutritional support is limited at present.

Many home care patients suffer some anxiety

and depression, at least in the first weeks of nutritional support at home, due to the difficulty of

treatment procedures; fear about life-threatening

complications; loss of the ability to eat and the

social interaction that eating often entails; embarrassment about the appearance of the indwelling catheter or tube, and anxiety about the cost

of treatment. Many home care patients have experienced severe illness, surgery, chemotherapy,

or other treatments and may fear recurrent illness and hospitalization. Changes in body image

and self concept associated with prolonged dependency on a life-sustaining medical technology

can also cause anxiety and depression. Moreover,

the need to rely on others for assistance may require complex adjustments in family roles and relationships that cause further anxiety. In fact, patients who are dissatisfied with their quality of

life on TPN tend to develop more catheter-related

complications, than patients on TPN who are more

satisfied with their quality of life (70,101,158,

159,167).

Over the course of weeks or months, most home

nutritional support patients, both young and old,

accept the technological dependence and are

proud of their ability to manage complex nutri-
318 ● Life-Sustaining Technologies and the Elderly

tional support treatments. Anecdotal evidence indicates, however, that about one-fourth of patients,

often those who are older, become depressed and

doubt the value of their “technological existence.”

Supportive listening, small nighttime doses of an

antidepressant, and frequent visits from a home

nurse may cause dramatic improvement. If depression persists, some clinicians recommend presenting the option of discontinuing treatment, that,

in some cases, allows patients to reaffirm their

sense of control and their decision to live (155).

A final decisionmaking issue is whether expensive home nutritional support should be provided

for all patients who request it or whose families

request it for them, independent of any demonstrable medical benefit to them, or conversely

whether utilization and/or reimbursement should

be limited to patients who benefit from treatment

in some defined way. Currently, the complexity

of the procedures, professional attitudes, legal and

financial incentives, and the lack of public funding for 24-hour home care discourage overuse of

home nutritional support. In the future, however,

one or more of these factors could change, and

society could face demands for treatment from

patients for whom the treatments are not medically beneficial. In that situation, could society

deny access to nutritional support, and, if so, what

criteria would be used for such limitations-would

they be based on patient age, physical or mental

status, or other criteria?

FINDINGS AND IMPLICATIONS

Accurate information about utilization of tube

and intravenous nutrition and hydration is difficult to obtain, but industry data indicate that in

1984 about 1.4 million people of all ages received

nutritional support in all settings. Elderly patients

represent 40 to 65 percent of the patients who

receive nutritional support in hospitals, and almost

all those who receive nutritional support in nursing homes; they represent about half of those on

tube feeding at home and about 20 percent of

those on TPN at home.

Despite the large proportion of elderly people

among patients receiving TPN and tube feeding,

there has been little research on aspects of nutritional support that may differ for elderly people.

● Physiological changes associated with aging

affect nutritional requirements, but nutritional standards for elderly people are not

available for many nutrients. The lack of

standards complicates the process of assessing nutritional status and identifying elderly

patients who may need treatment.

● Changes in body composition and metabolism

associated with aging suggest the need for

adjustments in nutritional formulas for elderly

people, but there has been little discussion

of such adjustments in the clinical literature.

● Almost no information is available about indications for use, appropriate treatment procedures and formulas, or efficacy for very

old people.

Research in all these areas is needed to improve

decisionmaking and quality of care.

The safety, quality, and suitability for intended

use of enteral formulas is another concern, Food

and Drug Administration review of manufacturing, testing, and marketing practices with regard

to these formulas is needed in order to determine

the extent of problems and develop recommendations for solving them.

Most debate about the use of nutritional support and hydration has focused on legal and ethical issues involved in withholding and withdrawing of nutritional support and hydration from

terminally ill, comatose, and severely debilitated

people. Debate has centered around questions

about whether nutritional support and hydration

are correctly considered medical care, like the

other life-sustaining technologies discussed in this

report, or basic supportive or nursing care; whether

they are ordinary or extraordinary care; whether

they are burdensome for the patient; and whether,

since all people need food and water to survive,

withholding or withdrawing tube or intravenous

nutrition and hydration is killing a patient or, in

the case of some terminally ill, comatose or severely debilitated patients, allowing a patient to

die from his or her underlying disease.
Ch. 8.—Nutritional Support and Hydration Ž 319

Although these questions remain, there has been

a significant change over the past few years in

the attitudes of many people about withholding

or withdrawing tube and intravenous nutrition

and hydration. Less than a decade ago, withholding or withdrawing nutritional support was rarely

discussed. Now there is increasing acceptance of

the idea that such support may be withheld or

withdrawn from some terminally ill and comatose patients, Some people also believe that nutritional support can be withheld or withdrawn from

severely debilitated and severely confused patients

when the burden of treatment outweighs its benefits. Other people, including some patients, families, health care providers, lawyers, and ethicists,

disagree strongly.

As of early 1987, most final court rulings in cases

involving nutritional support and hydration from

adult patients have held:

1. that tube and intravenous nutrition and hydration are medical treatments;

2. that competent patients can legally refuse

such treatments with certain exceptions; and

3. that such treatments can be legally withheld

or withdrawn from incompetent patients in

carefully defined circumstances.

Prior to these final rulings, lower court rulings

in several widely publicized cases—rulings that

have since been overturned—had held that nutritional support and hydration could not be legally withheld or withdrawn for a variety of reasons. In several recent cases, lower courts have

ruled that nutritional support and hydration could

not be withdrawn. Moreover, courts in different

States have set out different factors to be considered in such decisions and different procedures

for making the decisions. Thus, it is understandable that physicians, nurses, and other health care

providers are uncertain about the law in this area.

Given their uncertainty and their general inclination to “err on the side of life,” health care

providers are likely to decide in favor of providing nutritional support in most cases.

Living will laws in many States distinguish between nutritional support and hydration and

other life-sustaining procedures. In some States,

the legislation specifies that nutritional support

and hydration are not among the life-sustaining

procedures that can be refused via a living will.

Thus, competent adults in those States cannot direct that tube and intravenous nutrition and

hydration should not be used for them in the future. The Florida Supreme Court has ruled, however, that people retain basic common law and

constitutional rights to refuse nutritional support

and hydration at the time the treatments are

needed, regardless of restrictions in the State living will statute (62).

Questions about access to nutritional support

have received much less attention than questions

about withholding and withdrawal. yet several

factors suggest that that tube feeding and TPN

may not be provided for some elderly patients

who might benefit. Many health care providers

who care for elderly people have had little training in nutritional assessment, and some are not

aware of the relationship between aging, nutritional status, and acute and chronic diseases. Thus,

they may fail to recognize the patient’s need for

treatment. Lack of nutritional standards for elderly people exacerbates this problem.

Many nutritional support specialists and others

believe that Medicare and Medicaid coverage and

reimbursement policies discourage the use of nutritional support in hospitals, nursing homes, and

in the home. Medicare’s prospective payment system is believed by some to limit the use of nutritional support, especially expensive TPN, for hospital patients who might benefit from it. Data to

test this assertion, however, are not currently

available.

Likewise, Medicare regulations for nutritional

support at home are believed by some people to

limit access to care for some elderly people. Nutritional support at home is expensive. Thus, for

all practical purposes, it is only available to people with Medicare or other third-party insurance

to pay for it. Data to determine whether elderly

people are routinely denied access to nutritional

support at home as a result of Medicare regulations are not currently available.

The interconnection among Medicare reimbursement policies in hospitals, nursing homes, and in

the home is a policy issue that has received little

attention. While Medicare’s prospective payment

system is encouraging earlier discharge of hospi-
320 ● Life-Sustaining Technologies and the Elderly

talized Medicare patients, limitations on Medicare

coverage for nutritional support at home and in

nursing homes may restrict access to treatment

for some elderly people. Evaluation of these policies should include consideration of their impact

on access to treatment across settings.

The efficacy of tube and intravenous nutrition

and hydration has not been demonstrated for

some diseases, and very little is known about their

efficacy in elderly people. Yet the well-documented

relationship between malnutrition and poor outcome suggests that critically ill and chronically

ill elderly patients might benefit from increased

use of these treatments and that Federal policies

that discourage their use may ultimately increase

the overall cost of medical care for such patients.

Concern has been expressed that severely debilitated and terminally ill elderly patients are or

will be given nutritional support at home, even

if it does not benefit them, because the procedures

are profitable for commercial home nutrition companies. OTA has found no evidence that this is

occurring. In fact, many home nutrition companies use rigorous screening procedures that exclude patients who are medically unstable, those

who are confused and may pull out feeding tubes

or catheters, and those for whom family support is not available. These screening procedures

reflect both the companies’ concern about quality of care and their legal liability for patients they

serve.

The quality of nutritional support for elderly

patients is diminished both by lack of information about their nutritional needs and appropriate nutritional support procedures for them and

by lack of staff trained in tube and intravenous

procedures in many treatment settings. As of 1984,

only about 12 percent of hospitals had a nutritional support team or a nutritional support service group to assist with assessment and nutritional

support treatments. Some other hospitals employ

individual nutritional support specialists for this

purpose, but many do not. Even fewer nursing

homes and home health care agencies employ nutritional support specialists.

Lack of trained staff can result in serious complications of treatment, such as coma or death

caused by failure to monitor the patient response

to TPN and pneumonia or death caused by failure to check the placement of a nasogastric tube

before infusing an enteral formula. Many hospitals, nursing homes, and home care providers recognize the need for increased training for staff

who provide nutritional support. Yet Medicare

and Medicaid policies that affect reimbursement

and staffing requirements in each of the settings

do not encourage the involvement of nutritional

support specialists, either to provide tube feeding and TPN directly or to train others to provide

them.

Very little is known about the relationship between severe dementia and eating disorders. Yet

patients who are severely demented present some

of the most difficult decisionmaking dilemmas, because they are usually not capable of participating in treatment decisions and because if nutritional support is initiated, they may have to be

physically restrained for prolonged periods to

keep them from pulling out the tube or cathether.

More information is needed about the causes of

eating disorders in dementia patients, their nutritional needs, the most appropriate formulas for

them, the effect of nutritional support and hydration on their physical and mental status and functional ability, and the effect of withholding or withdrawing these procedures.

Typical decisionmaking practices and the role

of the patient and the family in the decisionmaking process vary greatly in different settings. Decisions about the use of tube feeding and TPN at

home necessarily involve the patient and family

since they must learn and implement the procedures. In some hospitals and nursing homes, all

decisions about tube feeding and TPN are made

in consultation with the patient or a surrogate if

the patient is not decisionally capable. In many

hospitals and nursing homes, however, formal

consent of the patient, family, or surrogate is required for TPN and tube feeding procedures that

involve surgery but not for nasogastric tube feeding, which is the most widely used procedure.

Failure to require informed consent for nasogastric tube feeding is a serious concern when the

treatment is expected to be long-term. Many

elderly people who receive long-term nasogastric

tube feeding are confused, and as indicated, such
Ch. 8.—Nutritional Support and Hydration ● 321

patients are often physically restrained to keep

them from pulling out a feeding tube. This combination of factors would seem to indicate a need

for very rigorous decisionmaking procedures that

include methods for ascertaining the patient’s

treatment preferences whenever possible, appointment of a surrogate decisionmaker when

necessary, and periodic review of both the need

for and the method of nutritional support.

In 1988, the Joint Commission on Accreditation

of Hospitals will require hospitals and nursing

homes to have an institutional policy for decisions

about resuscitation (see ch. 5). In response to that

requirement, facilities could choose to develop policies for decisions about all life-sustaining treatments, including nutritional support and hydration. Such policies would have to address any

overriding presumptions about the use of tube

and intravenous nutrition and hydration in the

facility, in addition to the roles of patients, families, physicians, nurses, dietitians, social workers, and others in the decisionmaking process. Existing State law such as living will statutes, family

consent laws, and any relevant case law (e.g., in

New Jersey, the requirement that the State ombudsman for nursing home residents must investigate cases of withholding or withdrawing treatment from some nursing home residents) would

have to be considered in the development of such

policies.

At the least, institutional policies for decisions

about nutritional support and hydration would

allow patients, families, and staff of the facility

to know in advance how such decisions will be

made. At best, they would involve these individuals in the decisionmaking process in a way that

would protect the patient right to decide but also

ensure that decisions to withhold or withdraw

these treatments are made cautiously and conscientiously and that they do not constitute neglect or abuse of the patient.

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CONTENTS

Page

Introduction ..., , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...........333

Description of Life-Sustaining Antibiotic Therapy . .................,.......334

Life-Threatening Infections in Elderly People: The Need for Life-Sustaining

Antibiotic Therapy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , . ........334

Diagnosis of Infection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..336

Choice of Antibiotic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........336

Duration of Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .................338

Route of Administration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ....338

Treatment Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...338

Utilization and Cost of Antibiotic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..339

Utilization of Antibiotics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....339

Cost of Antibiotic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ... ...340

Reimbursement for Antibiotics . . . . . . . . . . . . . . . . . . . . . ...................340

Outcomes of Life-Sustaining Antibiotic Therapy. . . . . . . . . . . . . . . . . . . . . . ......341

Cure of Infection. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , . . . . . . . . .341

Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .............................342

Recurring Infection. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......343

Superinfection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .............343

Adverse Reactions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..........343

Making Decisions About Life-Sustaining Antibiotic Therapy. . ................345

Factors Associated with Decisions Not To Treat.. . . . . . . . . . . . . . . . . . . ......345

The Decisionmaking Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..347

Findings and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ....349

Chapter 9 References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........352

Figure

Figure No. Page

9-1. Age-Associated Physiological Factors That Affect Drug Distribution in

Elderly People . . . . . . . . . . . . . . . . . . . . . . ..............................344

Tables

Table No. Page

9-l. Life-Threatening Infections That Commonly Affect Elderly People .........335

9-2. Generic Antibiotic and Other Antimicrobial Agents Classified by Family. ...337
Chapter 9

Life-Sustaining Antibiotic Therapy

INTRODUCTION

The discovery of antibiotics has been described

as the greatest life-saving technological development in the history of medicine. Prior to the development of antibiotics, infectious diseases accounted for over half of all hospitalizations and

were responsible for most fatalities in this country. Sulfanilamide was the first antibiotic to be discovered, and physician-author Lewis Thomas has

recalled the powerful impression this drug made

during his intern years following its introduction

in the late 1930s:

. . . For most of the infectious diseases on the

wards of the Boston City Hospital in 1937, there

was nothing to be done beyond bed rest and good

nursing care. Then came the explosive news of

sulfanilamide, and the start of the real revolution

in medicine.

I remember the astonishment when the first

cases of pneumococcal and streptococcal septicemia were treated in Boston in 1937. The phenomenon was almost beyond belief. Here were moribund patients, who would most surely have died

without treatment, improving in their appearance

within a few hours of being given the medicine

and feeling entirely well within the next day or

SO (69).

Antibiotics are now widely used to treat a variety of infections caused by viruses, fungi, bacteria, and other protists and are credited with a 10-

year extension in average life expectancy at birth.

By way of contrast, it is estimated that the successful elimination of cancer would result in only

a 2-year extension of life expectancy at birth (31).

Antibiotics are currently prescribed more often

than any other class of drugs in the United States

and account for more than 25 percent of the $3

billion in annual hospital drug expenditures (52).

Some antibiotics can destroy or prevent the growth

of only one or a few different kinds of harmful

agents, while newer derivatives act against a

broader range of pathogens. Antibiotics are used

most often to treat mild infections or to prevent

infection. This chapter focuses, however, on the

use of antibiotics to treat life-threatening infections that, without treatment, would result in

death within a few days of onset of the infection.

Antibiotic treatment is generally effective. In

addition, it is usually safe, readily available, and

relatively inexpensive and painless. For these reasons, and because most people consider antibiotics

noninvasive, many health care providers believe

that antibiotic treatment is always appropriate

when an active infection is present.

Despite this strong presumption in favor of using

antibiotic therapy, some health care providers and

others believe that there are circumstances in

which it is justifiable to withhold life-sustaining

antibiotic treatment (18,43,55,78). For example,

one physician told about his 96-year-old mother

who experienced two strokes a week apart and

developed pneumonia following the second. The

woman’s children asked the hospital staff not to

treat the pneumonia, but the hospital staff insisted

that they could not “do nothing,” and she was given

intravenous antibiotics. She survived and was discharged to a nursing home. Her son wrote:

She can still recognize her family visitors, say

their names, and engage in trivial conversation,

but her mind is substantially destroyed . . . She

is no longer aware of her plight, and expresses

no suggestion of despair, but everything she

wanted to avoid has happened. In a semiivgetating state, she has lost her functional and mental

independence. I, the physician son of this woman,

weep for my mother and for what has happened

to my profession (24).

Although antibiotics are usually effective in the

treatment of infections in people of all ages, these

drugs cannot cure underlying diseases or disabling

conditions that are common among elderly patients. In some patients, a life-threatening infection is superimposed on a terminal illness or an

incurable, severely debilitating, chronic disease.

Some health care providers and other people believe that in such cases the use of antibiotics to

treat the infection sometimes prolongs the dying

333
334 ● Life-Sustaining Technologies and the Elderly

process or prolongs the patient’s suffering unnec- have received much less attention and analysis

essarily. than decisions about withholding or withdrawThe few available reports on decisions about ing other life-sustaining treatments. This chapter

discusses the use of antibiotic therapy for elderly antibiotic treatment for terminally ill and severely

debilitated elderly people suggest that antibiotic people with life-threatening conditions, the outtreatment is sometimes withheld from such pa- comes of such treatment, and what is known

tients (8,14,33,50,65). Yet these treatment decisions about the factors associated with nontreatment.

DESCRIPTION OF LIFE-SUSTAINING ANTIBIOTIC THERAPY

Life- Threatening Infections in Elderly

People: The Need for Life-Sustaining

Antibiotic Therapy

Despite the frequent success of antibiotics in

reversing life-threatening infections, infectious diseases remain a serious problem for elderly people. At a time when medical technologies can support body functions almost indefinitely, severe

infection is still one of the few challenges to such

interventions. It has been estimated that infections

account for approximately 30 percent of all deaths

in the elderly population (48). One study based

on autopsies found that infection was the second

most frequent identifiable cause of death in persons over age 85 (following atherosclerosis) (39).

Some of the life-threatening infections that commonly affect elderly people—bacterial pneumonia, urinary tract infections, infected decubitus

ulcers (bed or pressure sores), and iatrogenic infections that sometimes result from the use of

medical devices—are described in table 9-1. Any

local infection in a seriously ill older person,

however, can rapidly spread and become lifethreatening.

Various risk factors make people vulnerable to

infection, and some risk factors are more prevalent among older people than younger people. One

factor that increases the risk of infection is hospitalization. People in hospitals are exposed to a

large number of agents that can cause infections.

Elderly people are more likely to be hospitalized

than younger people, and because of diminished

immune function and other factors discussed below, hospitalized elderly patients are two to five

times more likely to develop nosocomial (hospitalacquired) infections than hospitalized younger patients (30). Nosocomial infections are often fatal,

in part because they are frequently caused by

agents that are resistant to antibiotics (79).

A second risk factor for infection—also much

more likely for older than younger people—is residence in a nursing home. Communal living, use

of urinary catheters, and other factors often associated with nursing home care foster infections.

Research indicates that, on average, 15 to 20 percent of nursing home residents have an active infection at any given time (17,26,44).

A third factor that makes many elderly people

vulnerable to infections is the presence of multiple illnesses, or comorbidities. The proportion of

people with such conditions rises rapidly with age,

and it is estimated that 80 to 90 percent of elderly

patients with infections also have other diseases

including cancer, diabetes, Alzheimer’s disease,

chronic congestive heart failure, and chronic obstructive pulmonary disease (23).

Other important factors that increase the risk

of infections are diminished immune function,

diminished physiological function, and reduced

physical activity. Immune function declines with

age, with various diseases, with some medical

treatments (e.g., cancer chemotherapy) (19,29,53),

and with inadequate intake of food and fluids that

may result from poverty, depression, forgetfulness, mobility impairments, illness, or medical

treatments that decrease appetite. Diminished

physiological function–for example, a diminished

cough reflex-increases susceptibility to infections

(8). Reduced physical activity often associated with

chronic illness and impaired mobility increases

the risk of respiratory infections and decubitus

ulcers (19).

A final factor that increases the risk of infection is the use of life-sustaining medical devices
Ch. 9—Life-Sustaining Antibiotic Therapy . 335

Table 9-1.— Life-Threatening Infections That Commonly Affect Elderly Peoplea

Pneumonia is the leading cause of death due to infectious

diseases and it ranks sixth as a cause of death for people

of all ages in the United States (31). Bacterial pneumonia,

along with infiuenza, is the fourth most common cause of

death in elderly people, accounting for 185 deaths per

100,000 persons (40). Mortality rates range from 10 to 80

percent, depending on the bacteria involved and the degree

of lung destruction (8).

Nosocomial (hospital-acquired) pneumonias are the

most deadly and account for approximately 15 percent of

hospital-acquired infections (75). Recent studies suggest

that the risk is comparable in nursing homes. Several diseases or condition-associated factors that predispose people to pneumonia are more frequent in the elderly population

or affect the elderly more severely—e.g., chronic bronchitis, congestive heart failure, stroke, and dementia (8).

Urinary tract infections are common bacterial infections in

older persons, especially women (37). They are the most

common infections in hospitalized patients, affecting 1 million patients per year (31). The prevalence of urinary tract

infections increases with age, level of care, and decreasing functional capacity. The reasons that urinary tract infections are so frequent in eider persons are unknown, but

may include prostate problems in men; loss of pelvic support, fecal incontinence, and loss of Iocal bladder mucosal

defense mechanisms in women; and use of urinary catheters in both sexes (86).

infected decubitus ulcera (bed or pressure sores) are associated with immobility, malnutrition, and diabetes, all of

which result in poor circulation and skin breakdown. One

study found decubiti were the leading source of infection

among 532 patients in nursing homes, with a prevalence

rate of 6 percent (26). Despite appropriate medical and surgical care, elderly patients with pressure sores associated

with bacteremia have a very poor prognosis. The overall

mortality associated with sepsis (spread of the infection

to the bloodstream) due to pressure sores is approximately 40 percent, and the highest rates (78 percent) have been

documented in elderly patients (16).

latrogenic Infections (infections resulting as a complication

of medical treatment) are often related to the use of medical devices. in the late 1970s, for example, an estimated

850,000 infections were related to medical devices, accounting for approximately 45 percent of ail hospitalacquired infections in the United States. infections resulting from the use of life-sustaining technologies such as

mechanical ventilators, dialysis machines, and nutritional

support equipment constitute a substantial portion of the

latrogenic complications due to medical devices (8,64). During infusion therapy for total parenteral nutrition (TPN) (see

ch. 8), for example, infection can be caused by contamination. infectious bacteria gain access most frequently at the

site where the device penetrates the skin (32).

%TA selected these four infections for em~hasis in this chapter because of their Prevalence and importance for critically, chronically, and terminally ill. and severelv

debilitated elderly people.

SOURCE: Office of Technology Assessment, 1987.

such as mechanical ventilators (see ch. 6), dialysis equipment (see ch. 7), and devices used to provide total parenteral nutrition (TPN) (see ch. 8).

Elderly people constitute a large proportion of the

patients who use these technologies.

In addition to increasing the risk of infection,

three factors—reduced immunological function,

reduced physiological function, and age-associated

illnesses such as heart disease, respiratory disease,

or cancer—may lower a patient’s ability to withstand an infection. Half of the elderly people who

die of an infection do so because of the added

stress the infection places on their already weakened organs (62). An infection in an individual

whose physiological status is already compromised

can result in a series of escalating problems, as

one woman’s experience illustrates:

Because of their exposure to a combination of

several risk factors, certain elderly people are

more vulnerable than younger people or other

elderly people to life-threatening infections. Elderly people at greatest risk include:
336 ● Life-Sustaining Technologies and the Elderly

●

●

●

critically and terminally ill elderly people who

are likely to be hospitalized and to have compromised immunological and physiological

status;

chronically ill, though often clinically stable,

elderly people, especially those who may require mechanical ventilation, dialysis, or nutritional support; and

severely debilitated elderly people with multiple comorbidities, especially those who reside in nursing homes and those who are immobile.

For any of these people, antibiotics are potentially

life-sustaining.

Diagnosis of Infection

Infections in elderly people are sometimes difficult to recognize because some elderly patients

do not manifest the symptoms of infection that

are familiar in younger people. An elderly patient

with pneumonia, for example, instead of exhibiting cough, fever, or chills, may instead present

nonspecific symptoms such as confusion, anorexia,

weakness, or falls. An elderly patient with a urinary tract infection may have no apparent symptoms (19,25,79).

To recognize the presence of infections in

elderly patients, caregivers must first be aware

that such infections may present differently than

the same infections in younger people. They must

then be attentive to nonspecific changes in an

elderly patient’s general physical condition and

functioning that may indicate infection. This observation holds especially true for elderly patients

with dementia, who are often unable to define

or report their own symptoms (19,79).

The identification of the specific bacterial or

other agent causing a suspected infection is accomplished via laboratory tests. Many tests used

in diagnosis-e.g., the chest X-ray and a culture

of secretions coughed up from the lower respiratory tract that are ordinarily used to diagnose

pneumonia—are noninvasive.

obtaining uncontaminated secretions from a patient’s lower respiratory tract without using invasive procedures is often difficult, however, because the secretions have to come through the

patient’s mouth. For this and other reasons, some

physicians will treat suspected pneumonia without a culture. If the patient does not respond to

the treatment in a few days, a culture maybe essential and invasive procedures may be needed

to obtain uncontaminated secretions. One procedure, transtracheal aspiration, involves inserting

a needle through the patient’s neck and trachea

and into the lung to withdraw fluid. Some physicians consider such procedures too dangerous to

be used in older people (58). Others believe the

procedures are safe and useful in diagnosing bacterial pneumonia, especially in severely ill and hospitalized elderly patients (8,11).

Even simple diagnostic procedures that require

drawing blood, obtaining a urine specimen, or having a patient cough up sputum may be difficult

with elderly patients who are confused as a result of dementia, severe infection, or other illnesses. Severely confused patients may have to

be physically restrained during diagnostic procedures, and some patients may have to undergo

more invasive diagnostic procedures because of

their inability to cooperate with simple procedures.

All types of diagnostic tests are readily available

to patients being treated in hospitals, but some

tests may not be available or easily accessible for

nursing home residents (8,60). Moreover, anecdotal evidence and research findings indicate that

in many cases even relatively simple laboratory

tests are not used for nursing home residents, and

that antibiotic treatment is frequently provided

without a diagnostic workup. Three studies of antibiotic use in nursing homes show, for example,

that only 11 to 38 percent of residents for whom

antibiotics were prescribed had any pretreatment

diagnostic tests related to their infections (14,34,

80). Some observers believe that these figures reflect seriously inadequate diagnostic practices

(8,80).

Choice of Antibiotic

The choice of a particular antibiotic to treat a

life-threatening or other infection depends primarily on the infectious agent (or agents). Other

factors that a physician may consider are the nature of the patient’s underlying illnesses, his or
Ch. 9–Life-Sustaining Antibiotic Therapy ● 3 3 7

her history of drug allergies or intolerance, the

risk of drug toxicity, and, in some cases, cost (28,

79)!

Currently, over 50 antibiotics are licensed for

clinical use in the United States (table 9-2). Broad

spectrum antibiotics are active against several

types of infectious agents, and narrow spectrum

antibiotics are active against one or only a few

types (56). All antibiotics are fairly specific in their

activity, but various antibiotics overlap in their

spectrum of activity. Because of this overlap, more

than one antibiotic may potentially be effective

against a specific infection.

Given the wide range of options for antibiotic

therapy and the rapid rate at which new antibiotic derivatives are synthesized, it is difficult to

establish a consensus about how best to treat

many infections. Clinical guidelines for treating

elderly patients with infections do exist (see, for

example, app. G), but many physicians base their

selection of antibiotics on their own prior experience. The prevalence of any particular strain of

bacteria or other infectious agent varies among

hospitals, nursing homes, and community settings,

so the antibiotic selected for use against a suspected infectious agent may also depend on the

Table 9.2.—Generic Antibiotic and Other Antimicrobial Agents Classified by Family

Penicillins

Natural penicillins

Penicillin G

Penicillin V

Penicillinase-resistant

Antistaphylococcal penicillins

Methicillin

Nafcillin

Oxacillin

Cloxacillin

Dicioxacillin

Floxacillin

Aminopenicillins

Amoxicillin

Ampicillin

Bacampicillin

Cyclacillin

Hetacillin

Epicillin

Pivampicillin

Talampicillin

Antipseudomonal penicillins

Carbenicillin

Carbenicillin indanyl

Ticarcillin

Azlocillin

Extended spectrum penicillins

Mezlocillin

Piperacillin

Amidino penicillins

Amdinocillin

Amdinocillin pivoxil

Amphenicols

Chloramphenicol

Thiamphenicol

Aminoglycosides

Tobramycin

Gentamicin

Amikacin

Kanamycin

Cephalosporins

First-generation

Cephalothin

Cefazolin

Cephapirin

Cephradine

Cephalexin

Cefadroxil

Second-generation

Cefamandole

Cefoxitin

Cefuroxime

Cefaclor

Third-generation

Cefotaxime

Moxalactam

Cefoperazone

Ceftizoxime

Ceftriaxone

Ceftazidime

Cefsulodin

Cefmenoxime

Tetracycline

Short-acting

Oxytetracycline

Tetracycline

Intermediate-acting

Methacycline

Demeclocycline

Long-acting

Doxycycline

Minocycline

Macrolides and Iincosamides

Macro/ides

Erythromycin

Troleandomycin

Lincosamides

Lincomycin

Clindamycin

Sulfonamides and trimethoprima

Sulfonamides and trimethoprim in

combination

Sulfadiazine

Sulfamerazine

Sulfamethazine

Sulfamethoxazole

Sulfisoxazole

Trimethoprim

Other

Sulfacytine

Sulfadiazine

Sulfameter

Selfamethizole

Sulfamethoxazole

Sulfapyridine

Sulfasalazine

Sulfisoxazole

Trimethoprim

Miscellaneous antimicrobial

Urinary tract antiseptics

Cinoxacin

Methenamine

Nalidixic acid

Nitrofurantoin

Other a

Aminosalicylic acid

Amphotericin B

Colistin

Dapsone

Ethambutol

Isoniazid

Metronidazole

Polymyxin B

Polymyxin E

Potassium iodide

Pyrazinamide

Rifampin

Spectinomycin

Streptomycin

Sulfoxone

Vancomycin

aThese items were adapted from the National Ambulatory Medical Care Survey 1980-81 classification scheme (8)

SOURCE American Medical Association, AMA Drug Evacuations, 5th ed. (Chicago, IL April 1983).
338 Ž Life-Sustaining Technologies and the Elderly

setting in which an infection is acquired (8,9,21,77).

Thus, the choice of an antibiotic may vary from

patient to patient, from one physician to another,

and from one setting to the next.

To minimize the risk of death from life-threatening infections, antibiotic therapy is frequently

initiated before a diagnosis can be obtained. In

such cases, empirical treatment is administered—

treatment employing antibiotics active against several probable causative agents. When or if the infection is subsequently diagnosed, antibiotics specifically targeted against the ”identified agent may

be used.

Duration of Treatment

In the treatment of life-threatening infections,

it is vital to continue antibiotic therapy for an adequate length of time. If the course of treatment

is incomplete, some virulent infectious agents may

remain, reproduce, and cause a potentially fatal

relapse. However, there is no standard duration

of antibiotic treatment for life-threatening infections. The appropriate length of antibiotic therapy depends on the type of infection, the specific

infectious agent, and the rate of the individual patient’s response to treatment (8).

Route of Administration

Antibiotics can be administered three ways: topically, enterally, or parenterally.

1. Topicall administered antibiotics are applied

to the skin in cream form. Such antibiotics

are seldom used to treat life-threatening infections.

2. Enteral antibiotic therapy is administered

orally (in tablet, capsule, or liquid form), rectally, or by nasogastric or gastrostomy tubes

(see ch. 8). Oral agents are used to treat serious infections only in special circumstances

(e.g., when administering parenteral agents

is difficult). Ordinarily, oral agents are used

to treat infections on an outpatient basis and

to complete a full course of therapy in uncomplicated infections.

3. Parenteral antibiotic therapy is therapy administered by intramuscular injection or intravenous infusion. Parenteral therapy is

often needed in serious infections to achieve

adequate levels of the antibiotic in the patient’s

blood. Many drugs cannot be tolerated when

given by intramuscular injection if more than

a few doses are needed per day. For that reason, long-term antibiotic therapy is usually

administered by intravenous infusion. Intravenous therapy may also be used when high

blood levels of an antibiotic are important,

or when the patient has diabetes (56), a common condition among elderly people.

Treatment Setting

For a patient who acquires an infection but remains clinically stable, antibiotic treatment can

usually be administered in a nonhospital setting.

For a patient whose condition worsens or whose

infection is life-threatening, however, admission

to a hospital maybe necessary, In hospitals, equipment and personnel are available to identify specific infectious agents and to administer antibiotics by any route.

The need for intravenous antibiotic treatment

is one of the primary reasons that nursing home

residents are transferred to hospitals (8,71). Most

nursing homes cannot administer antibiotics intravenously because they do not have an onsite

pharmacist to mix the sterile antibiotic with dilutent solution, Furthermore, the number of nursing home personnel authorized to administer intravenous antibiotics is often limited.

According to the 1977 National Nursing Home

Survey, there were 340,000 hospitalizations from

1,402,400 nursing home beds in the United States—

an annual rate of about 250 hospitalizations per

1,000 nursing home beds (74). That survey does

not indicate what percentage of hospitalizations

was associated with infections. Findings from

other smaller studies (27,35,49)71) indicate, however, that infection is responsible for an average

of about 30 percent of hospitalizations of nursing home residents (range: 17 to 56 percent) (8).

In some cases, intravenous antibiotic therapy

for life-threatening infections is administered at

home. Home intravenous antibiotic therapy is administered to a variety of patients, including patients who acquire a life-threatening infection
Ch. 9—Life-Sustaining Antibiotic Therapy ● 339

while dependent on a mechanical ventilator, dial- In hospices, where antibiotics are used primarysis, or nutritional support at home and who wish ily to improve patients’ comfort, if at all, the use

to avoid admission to a hospital. Since patients of parenteral antibiotic therapy is discouraged (4).

who are severely ill usually cannot administer oral antibiotics are much preferred because they

their own intravenous therapy, home intravenous avoid the added discomfort of intramuscular inantibiotic therapy generally requires the availabil- jections or intravenous infusions (8).

ity of family members or other caregivers who

have been trained to provide it.

UTILIZATION AND COST OF ANTIBIOTIC THERAPY

Utilization of Antibiotics

The information available on utilization of antibiotics is not restricted to their use in treating lifethreatening infections. Rather, the data cover all

uses of antibiotics, including the more common

use of antibiotics to treat mild to moderate infections and prevent infections. The extent of antibiotic use for life-sustaining purposes cannot be determined from available data.

Perhaps not surprisingly, the greatest use of antibiotics occurs in hospitals. Individual hospital surveys consistently report that 25 to 35 percent of

all patients receive antibiotics during their hospital stay (70). For up to half of the patients who

receive antibiotics in hospitals, the intent is to prevent an infection rather than to treat one (56).

One study of 28 hospitals in Pennsylvania found

that the percentage of patients receiving antibiotics increased with patient age, ranging from a

low of 22 percent in pediatric patients to a high

of 49 percent in patients over age 85 (60). Elderly

patients (over age 65) represented 20 percent of

all patients in the study but accounted for nearly

40 percent of the patients receiving antibiotics.

In general, elderly nursing home residents receive antibiotics less frequently than hospitalized

elderly people, although antibiotics are often used

to treat urinary tract infections in nursing home

residents (13,80). The percentage of nursing home

residents receiving antibiotics at any one time

ranges from 8 to 16 percent (26,73, 74,80). It is

not known why this variability exists, but it may

reflect differences among nursing homes in the

proportion of patients who are very old, seriously

ill, catheterized, or immobile.

One large-scale study, the 1976 Long-Term Care

Facility Improvement Campaign, examined physicians’ prescribing patterns in skilled nursing facilities nationwide (73). Most of the facilities were

served by community pharmacies. Of more than

1.7 million prescriptions for approximately 284,000

residents in these facilities, 3 percent were for

oral or injectable antibiotics. Sixteen percent of

the residents were receiving an antibiotic (including preventive antibiotics) at any one time.

Another study, of nursing homes in New York

State, found that about 8 percent of residents were

receiving antibiotics on the day of the survey. Of

these residents, 58 percent had urinary tract infections, 19 percent had lower respiratory tract

infections, and 5 percent had skin or subcutaneous tissue infections, including pressure sores (80).

Noninstitutionalized elderly people are not major consumers of antibiotics. The 1980 National

Ambulatory Medical Care Survey, a survey of

office-based physicians, found that noninstitutionalized patients over age 65 were prescribed drugs

to treat arthritis, diabetes, and especially cardiovascular problems more frequently than antibiotics

(75). The 1980 National Medical Care Utilization

and Expenditure Survey found that antibiotics accounted for only 5 percent of all drugs prescribed

for noninstitutionalized elderly people (41).

In 1984, an estimated 14,000 persons were on

home intravenous antibiotic therapy (12). It is not

known how many of these persons were over age

65, however. Industry sources predict major

growth (in excess of 30 percent annually) in the

home intravenous antibiotic market.

People with life-threatening infections are usually treated in hospitals and are rarely treated at

63-216 0 - 87 - 9 : QL 3
340 • Life-Sustaining Technologies and the Elderly

home (8). Thus, although the information presented here applies to antibiotic use in general,

one pattern—the variation in use of antibiotics by

setting—holds true for life-sustaining as well as

general antibiotic use. Use of life-sustaining antibiotic therapy, like use of antibiotic therapy in

general, is greatest in hospital settings and least

in noninstitutional settings.

Cost of Antibiotic Therapy

The cost of life-sustaining antibiotic treatment

is difficult to determine for several reasons. First,

utilization data seldom specify the types of infections treated. Another reason is that studies of

the costs of antibiotic therapy do not consistently

measure the same costs. For instance, some studies

calculate the costs of antibiotic therapy to the supplier, while others focus on the costs to the patient (i.e., what the hospital charges the patient).

In 1982, drug store expenditures for antibiotics

totaled almost $0.9 billion. Hospital expenditures

for antibiotics that year were over $1 billion, accounting for more than one-fourth of total hospital

expenditures for prescription drugs (6).

The cost of antibiotic therapy depends on:

●

●

●

●

the type of antibiotic used;

the amount of antibiotic used (e.g., the daily

dosage and duration of treatment);

the method of delivery; and

the setting where therapy is administered.

Antibiotic therapy for treatment of life-threatening pneumonia, for example, can cost from less

than $30 a day for a relatively simple antibiotic

regimen to over $2000 a day for a more sophisticated one (8,36).

Some antibiotics that are recommended to treat

life-threatening infections are far more expensive

than others. Third-generation cephalosporins for the

treatment of pneumonia are among the most expensive antibiotics available. Cephalosporins alone account for approximately 1 percent of hospitals’ total budgets (38,45).

Recommended antibiotic regimens for elderly

patients with bacterial pneumonia, urinary tract

infections, infected decubitus ulcers, and TPNassociated septicemia and an example of one hospital pharmacy’s charges for the recommended antibiotics are presented in appendix G. Although the

figures for charges are illustrative, it is not possible

to determine whether they are typical for hospitals

in the Nation.

Hospital charges for antibiotic therapy are influenced by the method of delivery. One study of 71

hospitals found that charges added for intravenous

administration of antibiotics averaged over $9 per

dose (46). In fact, expenses to prepare and administer antibiotics can sometimes exceed the purchase

price for the antibiotics themselves (22,66).

The total cost of treating a life-threatening infection in a hospital includes far more than the

costs or charges for antibiotic therapy. In a hospital, the total cost also includes diagnostic tests,

supportive care, and hospital stay. These additional

expenses are substantial (38).

Reimbursement for Antibiotics

Reimbursement for antibiotics by Medicare

varies by treatment setting. Under Medicare’s Part

A prospective payment system (PPS) based on diagnostic related groups (DRGs), hospitals are paid

a fixed amount per patient that depends on the

patient’s diagnosis (see ch. 2). Payment for antibiotics and other drugs provided for hospitalized

patients is assumed to be included in the fixed

payment for each DRG; there is no separate payment for antibiotics,

In nursing homes, Medicare Part A pays for

prescription drugs, including antibiotics, for residents whose nursing home care is paid for by

Medicare, provided that the drugs are administered by a health professional. Since Medicare pays

for only about 2 percent of all nursing home care,

however, only a small proportion of nursing home

residents are eligible for Part A reimbursement

for antibiotic therapy.

In a physician’s office, the patient’s home, or

any other outpatient setting, antibiotics administered by intramuscular injection are reimbursed

by Medicare Part B (Supplementary Medical Insurance). Drugs that are self-administered by the

patient or administered by someone other than

a licensed health care provider are not covered
Ch. 9—Life-Sustaining Antibiotic Therapy ● 341

by Medicare. Intravenously administered drugs,

including antibiotics, are not covered by Medicare

in any outpatient setting.

Medicaid, the Federal/State reimbursement program for the indigent, pays for most prescription

drugs for eligible individuals, although intravenous

antibiotics usually require prior approval in States

where they are covered (5). A survey of the Medicaid programs in eight States found that seven

programs covered home intravenous antibiotic

therapy but required prior approval by the Medicaid program office (54). To be eligible, however,

patients must have income and assets that do not

exceed Medicaid financial eligibility standards,

which are low in all States and extremely low in

some States.

Little information about private insurance coverage of antibiotics is available. One study found,

however, that 15 of 17 Blue Cross/Blue Shield plans

in 8 States and 12 other large commercial insurance plans covered home intravenous antibiotics

(54).

It is not known how Medicare policies (and the

policies of other third-party insurers) that are intended to contain hospital costs) are affecting the

use of antibiotics in hospitals. On the one hand,

PPS could increase the use of antibiotics in hospitals because the system creates a financial incentive for shorter length of stay, and antibiotics, by

treating complications often associated with certain diseases and treatments, can effectively

shorten length of stay (8). On the other hand, PPS

may discourage hospitals from treating Medicare

patients who require long and expensive courses

of antibiotics (e.g., after hip surgery or for an infection of the heart lining called endocarditis). For

some infections, the level of DRG payment covers only about half the number of hospital days

needed for the generally accepted antibiotic regimen (47).

Although home intravenous antibiotic therapy

may yield cost-savings for hospitals, the lack of

Medicare reimbursement for home intravenous

antibiotic therapy probably limits its use with

elderly patients. Patients who expect substantially

lower-out-of-pocket costs for inpatient care than

for outpatient care are unlikely to select outpatient

care, regardless of their desire to avoid hospitalization (36)38).

OUTCOMES OF LIFE-SUSTAINING ANTIBIOTIC THERAPY

Antibiotics generally are successful in combatting most types of infections, with patients showing improvement within a few hours or days, and

complete cure within a few days or weeks. In the

heterogeneous older population, however, the outcomes of antibiotic treatment for life-threatening

infections are often unpredictable. Many of the

same factors that predispose certain elderly people to life-threatening infections, especially agerelated physiological changes and the presence

of multiple illnesses, also place them at higher risk

of complications from treatment. These factors

converge to create a wide range of possible treatment outcomes.

Cure of Infection

The cure of an infection by successful antibiotic treatment usually restores a patient’s prior

health status. If an elderly patient has been functioning independently before contracting a lifethreatening infection, the cure of that infection

may mean a return to independence and a personally satisfying quality of life, as illustrated by

the following case:

Mr. B, a 73-year-old man, had been living independently in the community with the help of his

daughter, who brought groceries and helped with

chores and cleaning. Following his wife’s death

from cancer some years earlier, he had discussed

and had made out a living will.
342 • Life-Sustaining Technologies and the Elderly
Ch. 9—Life-Sustaining Antibiotic Therapy . 343

Although mortality fell 36 percentage points (from

64 to 28 percent) in the population over age 50,

it remained at a considerably higher level (23).

Higher mortality in elderly people treated with

antibiotics is due primarily to the general decline

in physiological and immunological function associated with aging and to complicating comorbidities and disabilities, rather than to age per se (8).

Because elderly people vary greatly in their physiological and immunological status, individual

elderly patients may respond just as well to antibiotic treatment as younger ones.

Recurring Infection

Another outcome that can result from antibiotic treatment is a less than full cure. Recurring

infections can be either relapses caused by the

same infection or infection by a different organism. Elderly women in particular tend to have

chronic, recurring urinary tract infections despite

antibiotic therapy (57). About 80 percent of all patients treated for urinary tract infections develop

a recurring infection within 18 months (3). Recurring urinary tract infections in older people often

do not present clear symptoms (7). Such infections

can occur infrequently, so that they seem to be

unrelated, or they can occur very frequently.

Broad spectrum antibiotics, in particular, encourage recurrence by fostering the proliferation

of strains of bacteria that are resistant to antibiotics.

Superinfection

The human body normally houses many different types of microorganisms, both on the skin and

internally. The surface of a normal tooth, for example, harbors approximately 70 different species of bacteria (31). Most of the microorganisms

in the body are harmless, and some are quite beneficial, helping with digestion and liberating essential nutrients, Some prevent colonization by

other, more virulent, microorganisms by competing for essential nutrients and producing natural

antibiotics.

Antibiotics that destroy harmful microorganisms

can also destroy microorganisms that are beneficial. When growth of beneficial microorganisms

stops as a result of antibiotic therapy, other

microorganisms that are not sensitive to the antibiotics may flourish and produce a superinfection, a new infection that appears during treatment of a primary infection. The broader the

antibiotic that is used, the greater the alteration

in the natural flora and the greater the possibility that a single type of microorganisms will predominate, invade, and produce infection. This new

infection may be quite difficult to eradicate with

the drugs currently available.

Adverse Reactions

Antibiotics are generally safe, and the adverse

reactions that do occur are usually mild and cause

no permanent damage. Mild diarrhea and nausea

are common side effects of many antibiotics. Allergic reactions to antibiotics include skin rashes,

hives, itching, wheezing, or difficulty breathing.

Nearly all antibiotics, like many other drugs, can

cause fever (31).

Other, less common, potential side effects of antibiotics include dizziness, hearing loss, seizures,

convulsions, hallucinations, coma, and blood clot -

ting problems. Kidney and liver damage in elderly

patients are more likely when high doses of antibiotics are used than when low doses are used

(2,10)20).

In general, elderly patients are more susceptible and sensitive than younger patients to the toxic

effects of drugs. The adverse drug reaction rate

is two to seven times higher in older patients than

in younger patients (37). A study of patients at

Johns Hopkins University Hospital, for example,

found that 24 percent of patients over age 80 had

adverse drug reactions, compared with only 12

percent of patients aged 41 to 50 (62).

The greater risk of adverse reactions older patients face is explained in part by age-related physiological changes. These changes illustrated in figure 9-1 affect the absorption, distribution,

metabolism, and excretion of many medications,

including antibiotics in the following ways:

● Reduced liver and kidney function in older

patients interferes with the clearance and

elimination of some antibiotics from the body.
344 ● Life-Sustaining Technologies and the Elderly

Figure 9-1 .—Age-Associated Physiological Factors That Affect Drug Distribution in Elderly People

SOURCE” Adapted from I.M. Smith, “Infections in the Elderly;’Hospital Practice, 17(7):69-85, 1982.

●

●

●

●

Fat gradually replaces muscle tissue in older

people, so drugs that dissolve in fat are stored

in the body for a longer period.

Changes in body size that occur with aging

alter the concentration of drugs in the body.

Gastrointestinal function decreases with advancing age, reducing the volubility of drugs

in the stomach and affecting absorption.

Older people have a decreased amount of the

protein albumin in their bloodstream. Since

many medications bind to this protein, a decreased amount of albumin may result in a

smaller percentage of drug being protein

bound, and therefore inactive, and a larger

percentage of drug being unbound, or active.

This enhances the penetration of certain

medications into tissues, while increasing the

concentration of free active drug circulating

in the bloodstream (62).

As with all physiological changes associated with

aging, the timing, extent, and impact of each of

these changes differ among individuals.

Patients in whom age-related physiological

changes allow the accumulation of toxic concentrations of drugs such as antibiotics will experience adverse reactions. These complications may

be especially dangerous when treating life-threatening infections because relatively toxic antibiotic

regimens are often used to treat such infections,

and elderly patients at high risk of such infections

are likely to have compromised physiological and

immunological status.

Combinations of various medications (“polypharmacy”) also can heighten sensitivity and cause adverse reactions. Many elderly people take a variety of different medications at the same time

(61,72). Polypharmacy can influence drug concentrations, decreasing antibiotic binding by enabling other substances to occupy the binding sites

of the protein albumin.

The physiological and other factors just mentioned may influence the effect of medications in

some elderly patients and alter the dosage required (20). In practice, however, the dose and

dose interval are relatively standard for each antibiotic (42). “Usual” or ‘(average” doses of many

medications are based on clinical trials that generally involve only young and middle-aged adults.
Ch. 9—Life-Sustaining Antibotic Therapy Ž 345

The altered physiology of many elderly persons ing include instructions for adjusting the dosage

is not accounted for in the standards. Thus, it is for varying degrees of renal impairment. The

common for patients to receive identical or simi- agency also recommended that a formula for estilar medication doses regardless of age (61,72). mating renal clearance, which includes an age facThe Food and Drug Administration recently rec- tor, be incorporated in the labeling for renally excreted drugs (67,68). ommended that dose information in product labelMAKING DECISIONS ABOUT LIFE-SUSTAINING

ANTIBIOTIC THERAPY

Decisions about whether to administer antibiotic therapy, unlike those about mechanical ventilation, dialysis, and nutritional support, affect

the majority of seriously ill elderly persons and

their caregivers (8). Relatively few studies, however, examine the specific factors, aside from clinical considerations, that may be involved in such

decisions.

In general, there is very strong support for administering antibiotic therapy to any person with

a treatable infection. Many physicians and other

health care providers think of antibiotic therapy

as ordinary or standard care and, therefore, would

not consider withholding it. Antibiotics are generally safe, free of serious adverse effects, and

effective. Their administration is usually pain-free

and does not drastically alter the patient lifestyle,

and the costs are generally minor.

Because of some or all of these factors, physicians are predisposed toward the use of antibiotics to treat life-threatening infections. This predisposition is strengthened by the fact that they

cannot always predict the outcome of withholding antibiotics, since not treating a life-threatening

infection may either hasten and ease death or prolong and increase suffering. Thus, the pressures

are probably greater to use antibiotics than to use

most of the other life-sustaining technologies discussed in this report. One observer has commented, in fact, that the “existence of antibiotics

provides the pressure to find an infection to

treat—even if infection, while perhaps present,

is not the patient’s problem” (15).

Since many physicians and other health care

providers consider antibiotic therapy ordinary or

standard care, they may fear that withholding it

will expose them to legal risks. Moreover, some

State living will statutes contain wording that is

difficult to interpret with respect to antibiotics.

The California Natural Death Act, for example,

excludes from its definition of procedures that

people may refuse with a living will, “the administration of medication or the performance of any

medical procedure deemed necessary to alleviate

pain” (1976 Cal. Stat. chapter 1439, Code and

Health and §7187). The wording of this statute

could be interpreted to mean that medications,

including antibiotics, are not among procedures

that people can refuse with a living will. There

is insufficient experience at present to know how

California’s statute and others like it will be interpreted (63). Even the perception of ambiguity,

however, may discourage caregivers from deciding to withhold treatment.

Factors Associated With Decisions

Not To Treat

Despite the strong presumption in favor of antibiotic treatment, untreated infections may actually be a frequent cause of death among elderly

people in some settings, and some observers suggest that nontreatment of severely debilitated and

terminally ill elderly people may be intentional.

Only one published study to date has specifically

examined factors involved in the withholding of

antibiotics (14). Results of that study, based on a

review of the medical records of 1,256 residents

admitted to 9 Seattle nursing homes in 1973,

showed that 190 had one or more episodes of fever associated with infection: 109 of these residents (57 percent) were treated with antibiotics,

whereas 81 residents (43 percent) were not. Of

the residents treated with antibiotics, 9 percent

died. In contrast, 59 percent of those who were
346 . Life-Sustaining Technologies and the Elderly

not treated with antibiotics died without resolution of their infections.

The factors associated with nontreatment of infections included the resident’s diagnosis, physical condition, and mental status. Nontreatment

was highest among residents with cancer. Many

of these residents died of multisystem failure, and

their infection was only a minor contributor to

their death, although antibiotic treatment might

sometimes have prolonged their lives. Residents

who required more nursing care, who were bedridden, in pain, or receiving narcotics were less

likely to be treated with antibiotic than residents

who required less care. Confused residents were

significantly less likely than cognitively normal

residents to be treated with antibiotics (14).

Another factor associated with treatment decisions was the resident’s marital status. Unmarried residents were least likely to be treated.

Widowed residents were treated more frequently,

and married residents were treated most. A resident’s age was not significantly related to the decision not to treat (14).

Differences in antibiotic treatment decisions also

can be related to physicians’ familiarity with the

nursing home resident. In the study of withholding antibiotics, physicians other than the patient

primary physician were less likely to be aware

of the patient’s total condition and of any previous plans for nontreatment and were more likely

to actively treat an infection. A patient’s personal

physician, surgeon, or oncologist was less likely

to treat a fever. Nurses often determined the degree of treatment a resident would receive. In 20

of the 190 cases (11 percent), nurses did not contact a physician after noticing a patient’s fever;

this inaction was interpreted by the researchers

as a decision not to treat (14).

Data provided to OTA from an unpublished 1984

study of three New York State nursing homes (65)

show that 81 percent of residents with potentially

life-threatening infections received antibiotic treatment while 19 percent did not. The study found

no significant differences between these two patient groups in age, level of education, functional

abilities, or marital status and no significant differences in a variety of psychological characteristics,

including emotional health and life satisfaction,

and in several measures of social support, including the availability of family and friends and the

frequency of their visits to the patient. Interestingly, there was also no significant difference in

mortality between the group that received antibiotic therapy and the group that did not. In fact,

the only significant difference between the two

groups was the frequency of the diagnosis of dementia. Residents with a diagnosis of dementia

were significantly less likely to receive antibiotic

treatment than residents with other diagnoses.

Another unpublished study of nursing home

residents cared for by a group of physicians over

a 7-year period suggests that both terminal illness

and a diagnosis of dementia are correlated with

a decision not to use antibiotics for elderly patients (50). As a part of routine treatment planning, the physicians assigned residents to one of

four categories to show what treatment they

should receive in the event of a life-threatening

acute illness:

1. full, unrestricted medical intervention;

2. intermediate—probably full—medical intervention;

3. comfort care/intermediate-primarily restricted

to comfort and supportive care, possibly including aggressive medical intervention for

a life-threatening episode; and

4. comfort care, and attention to basic medical

needs only (50).

Over the years, residents were reassigned to different categories as their condition changed.

Analysis of the characteristics of residents assigned to each category shows that residents in

categories 3 and 4 were significantly more likely

than those in categories 1 and 2 to have diagnoses of terminal cancer or dementia; about twothirds of those in category 4 were diagnosed as

having dementia. The percentage of residents who

were treated with antibiotics also varied significantly among the four categories. For example,

half the residents in category 1 who contracted

an acute pulmonary infection were transferred

to the hospital for treatment of the infection, compared to only 13 percent of residents in category

4 who contracted such infections. Of residents

with acute pulmonary infections who remained

in the nursing home, 99 percent of those in cate-
Ch. 9–Life-Sustaining Antibiotic Therapy . 347

gory 1 received antibiotic therapy, compared to

only 50 percent of those in category 4 (50).

Similar findings were obtained for urinary tract

infections and infected decubitus ulcers (pressure

sores). Forty percent of residents in category 1

who got urinary tract infections were transferred

to the hospital for antibiotic treatment, compared

to 28 percent of those in category 2 and none of

those in categories 3 and 4. Among residents with

urinary tract infections who were not hospitalized,

100 percent of those in categories 1, 2, and 3 were

treated with antibiotics, compared to 62 percent

of those in category 4. Likewise, 100 percent of

residents with infected decubitus ulcers in categories 1, 2, and 3 received antibiotics, compared

to only 57 percent of those in category 4 (50).

overall mortality due to acute pulmonary infections was only slightly higher among persons

in categories 3 and 4 (29 and 22 percent respectively) than among persons in categories 1 and

2 (19 and 15 percent respectively). This was true

despite the fact that a much higher percentage

of residents in categories 1 and 2 received antibiotic therapy. The researchers concluded that a

certain percentage (roughly 20 to 25 percent) of

all pulmonary infections among nursing home

residents will be fatal, with or without antibiotic

therapy. They hypothesized that most of the fatal pulmonary infections occurred at times when

the affected residents were particularly vulnerable because of their underlying diseases (50).

Anecdotal evidence suggests that settings of care

may influence decisions about antibiotic therapy

and that physicians are likely to implement more

aggressive treatment in a hospital than in a nursing home (8). In an interview for OTA, one physician stated:

[In the hospital,] the house staff and nursing staff

are all geared primarily to use all methods possible to help patients, who may have already been

started on antibiotics at the time they reach the

hospital. Things can go fast and it is hard to stop

something once you have started. I suppose there

are psychological pressures on all of us to use the

weapons that are readily available in the hospital. In the nursing home, those weapons are not

immediately available and there may be just a little less pressure to do everything . . . It is easier

in some ways to withhold treatment in a nursing

home because you don’t have to involve as many

people in the decisionmaking and convince them

if they are not convinced. You can make the decision on your own (8).

The type of infection a patient has may also

influence treatment decisions. In general, it is recommended that pneumonia, urinary tract infections, and decubitus ulcers be treated with antibiotics when the symptoms are distressing to the

patient (8,55). Untreated decubitus ulcers are frequently very painful. In contrast, untreated pneumonia may cause only mild discomfort due to

shortness of breath. Some observers have even

suggested that death from pneumonia ma-y be

preferable to continuation of a life with severe

disabilities:

Pneumonia may well be called the friend of the

aged. Taken off by it in acute, short, often painless illness, the old escape those “cold degradations of decay” that make the last state of all so

distressing (5 I).

The Decisionmaking Process

Very little information is available about the decisionmaking process with regard to life-sustaining

antibiotic therapy. Anecdotal evidence suggests

that the physician often acts alone in making a

decision about whether or not to treat a lifethreatening infection. He or she may consider the

opinions of nurses, the patient and/or family, and

other caregivers. There are no data, however, to

determine how often any of these individuals are

consulted about such decisions.

Explicit written consent from the patient or surrogate usually is not obtained for the administration of antibiotics. The primary reason for this

is that antibiotic therapy does not involve surgery

and is generally considered noninvasive. As a result, hospitals, nursing homes, and other health

care facilities usually do not require physicians

to obtain a patient’s or surrogate’s written consent for it. In addition, obtaining written consent

can be time-consuming and may interfere with

prompt initiation of treatment that is frequently

needed to ensure efficacy.

Anecdotal evidence indicates that in some cases,

even verbal consent of the patient or surrogate

is not obtained before antibiotic therapy is admin -
348 • Life-Sustaining Technologies and the Elderly

istered. This may occur because physicians and

other health care providers assume, perhaps

rightly, that patients with treatable infections want

to receive antibiotic therapy. It is also sometimes

said that a patient’s consent for treatment of an

infection is implied by his or her admission to a

hospital.

It is not known how often life-sustaining antibiotic therapy is withheld without either written

or verbal consent of the patient or surrogate. The

three studies cited earlier on factors associated

with nontreatment do not discuss this question

(14,50,65). It is also not known whether physicians

and other health care providers who believe that

the administration of antibiotics does not require

explicit consent also believe that life-sustaining

antibiotic therapy may be withheld without explicit written or verbal consent of the patient or

surrogate.

One very difficult aspect of decisionmaking with

regard to life-sustaining antibiotic therapy is that

some severely debilitated elderly people for whom

antibiotic treatment might be used are incapable

of participating in the decisionmaking process because of varying degrees of cognitive impairment.

Such people are more likely to be kept alive by

nutritional support and antibiotic treatment for

intermittent infections than to need or receive

more dramatic life-sustaining treatments like

resuscitation and dialysis (59). Decisionmaking

aids, such as the living will and durable power

of attorney (see ch. 3), are often of little use with

these patients because the patients often have

been cognitively impaired for a long time and are

unlikely to have given specific advance directives

about their care while they were still able. It is

frequently with these patients that physicians

must wrestle with the decision of when or whether

to “switch gears” from cure to supportive care

and withhold life-sustaining antibiotic therapy.

One physician’s description of his isolation in

reaching these decisions generated numerous letters in response and seemed to touch an exposed

nerve in the medical community:
Ch. 9–Life-Sustaining Antibiotic Therapy • 349

For my part, the underlying irrationality of my

decision has gnawed at me; the life-and-death importance of my actions has kept me awake at

night; the guilt and depression of never really

knowing whether I have acted properly have been

overwhelming (33).

Very few guidelines have been proposed for

when, if ever, it is appropriate not to treat infections. The President’s Commission for the Study

of Ethical Problems in Medicine and Biomedical

and Behavioral Research found “no particular

treatments—including such ‘ordinary’ hospital interventions as antibiotics—to be universally warranted and thus obligatory for a patient to accept”

(55).

Wanzer and associates (78), in their classification of levels of care for “hopelessly ill patients”

determined that antibiotic treatment should generally be provided for all patients except those

in their 4th category, general medical care. According to the classification system, patients in that

category “are usually those clearly in the terminal phase of an irreversible illness” (78). With

regard to patients who are in a “persistent vegetative state” (i.e., “the neocortex is largely and irreversibly destroyed, although some brain-stem

functions persist”), the authors state:

When this necrologic condition has been established with a high degree of medical certainty and

has been carefully documented, it is morally justifiable to withhold antibiotics ... , as well as other

forms of life-sustaining treatment, allowing the

patient to die. This obviously requires careful efforts to obtain knowledge of the patient’s prior

wishes and the understanding and agreement of

the family (78).

with regard to patients who are severely and irreversibly demented, they conclude:

It is ethically appropriate not to treat intercurrent illness except with measures required for

comfort (e.g., antibiotics for pneumonia can be

withheld) (78).

With the exception of these guidelines, however,

the medical literature rarely discusses when, if

ever, it is appropriate not to treat infections. This

may be due in part to the elusive nature of “quality of life .“ Subjects like “how to treat pneumonias,”

“appropriate care for decubitus ulcers)” or “recommended antibiotic therapy for urinary tract

infections, ” are discussed at length in infectious

disease journals and texts and are fairly straightforward. It is much more difficult to grapple with

the question of whether or not to treat a patient

who is terminally ill or severely debilitated. Since

there has been so little discussion of this question in the clinical literature there are few criteria or guidelines for making these decisions.

FINDINGS AND IMPLICATIONS

Antibiotics are used most often to treat mild infections or to prevent infections, and no data are

available to determine how many people of any

age receive antibiotics for life-threatening infections. Antibiotic use for all purposes is greatest

in hospitals and lowest in outpatient settings. Hospital surveys report that 25 to 35 percent of patients in the United States receive antibiotics during their hospitalization (70). The percentage of

patients receiving antibiotics in the hospital increases with age; in one study, persons over 65

years of age represented 20 percent of the total

patients but accounted for nearly 40 percent of

patients receiving antibiotics (60).

Research in nursing homes shows that 8 to 16

percent of the residents are receiving antibiotics

at any one time (26,73,74,80). A smaller percentage of persons receive antibiotics at home (41).

Life-sustaining antibiotic therapy is usually administered intravenously and may necessitate admitting a patient to a hospital, where a full range

of support personnel and medical services are

available. Such therapy must be initiated promptly

if it is to be effective. Thus, empirical treatment

with an antibiotic active against many different

infectious agents is often initiated before a definitive diagnosis can be made.

Although life-sustaining antibiotic therapy often

must be initiated before a definitive diagnosis is

made, the usual and recommended medical practice is to perform laboratory tests to identify the
350 ● Life-Sustaining Technologies and the Elderly

cause of the infection as quickly as possible. When

the infectious agent is identified, antibiotics specifically targeted to it may be used. Research indicates that such tests are usually performed for

hospitalized patients but are frequently omitted

in the management of suspected infections in nursing home residents (80). Some observers believe

that this constitutes inadequate medical care for

these residents, and they have proposed guidelines for diagnosing infection and selecting antibiotics for patients in nursing homes (8,80).

The use of life-sustaining antibiotic therapy with

elderly people involves special considerations. Infections sometimes present different symptoms

in elderly people than in younger people. Caregivers must be aware of this possibility and attentive to nonspecific symptoms, such as confusion, weakness, or falls, that may indicate the

presence of an infection. At the same time, more

research is needed on the presentation of infection in elderly people.

The outcomes of life-sustaining antibiotic treatment of elderly patients range from complete cure

to death. Antibiotics are usually effective in curing infections, However, they can neither eliminate nor alleviate preexisting illnesses in chronically, critically, or terminally ill or severely

debilitated elderly people.

Elderly patients as a group are at higher risk

of developing adverse reactions to antibiotic therapy than are younger patients. Age-related physiological changes affect the way drugs concentrate

in the body and can allow accumulations to toxic

levels. Most drug dosages are standardized and

do not account for the higher blood levels of a

drug that may result from an elderly person’s

altered metabolism. At present, the Food and Drug

Administration does not require specialized dosages

for elderly persons, although it has recommended

that a formula for estimating renal clearance,

which includes an age factor, be incorporated in

the labelling for renally excreted drugs. More research is needed on the effects of physiological

changes associated with aging on absorption, distribution, metabolism, and excretion of antibiotics

and the implications of these effects for appropriate antibiotic therapy.

Despite these considerations, antibiotics remain

among the least complex and least expensive lifesustaining technologies. Because many physicians

consider antibiotics ordinary or standard treatment, their decisions to use them in the treatment

of life-threatening infections are often automatic.

Clinical criteria, rather than patient’s or surrogate’s wishes, are often their primary considerations. In most cases, the patient’s or surrogate’s

explicit written consent is not obtained prior to

the administration of antibiotic treatment. It is not

known how often verbal consent is obtained.

Some people believe that requiring explicit informed consent (written or verbal) for antibiotics

would help ensure that the patient’s or surrogate’s

wishes are respected in the decisionmaking process. Others believe that requiring explicit informed

consent, especially written consent, would create a time-consuming obstacle to prompt treatment and that explicit informed consent is not necessary in most cases of life-sustaining antibiotic

therapy.

Many of the elderly patients being considered

for life-sustaining antibiotic treatment are severely

debilitated and incapable of making treatment decisions. Decisionmaking aids like the living will

are rarely of use to these people, who often have

been incapacitated for a long time and are unlikely to have given specific prior directives regarding their care. For these patients in particular, antibiotic treatment decisions may be strongly

influenced by the setting of care. Infections are

often aggressively treated in hospitals, where

there are pressures to use all of the measures that

are readily available. In nursing homes, where

medical resources are less readily available, there

may be less pressure to use antibiotic therapy.

Living will statutes in some States contain wording that may be perceived to exclude antibiotics

from the life-sustaining treatments that people

may refuse with a living will. The ambiguous

wording in these statutes could be revised to clarify their intent. This might reduce caregivers’ uncertainties about legal risks, thus encouraging

them to rely on advance directives in making treatment decisions.

Current Medicare policies favor management

of life-threatening infections in hospitals and may
Ch. 9—Life-Sustaining Antibiotic Therapy . 351

discourage some patients from receiving therapy

at home. A consequence maybe higher antibiotic

use and expenditures in hospitals. Although Medicare reimbursement for antibiotic therapy administered at home could encourage use in that setting, no estimates are available of the number of

elderly patients now treated in hospitals who could

receive antibiotic therapy at home.

Few guidelines or criteria have been developed

to help physicians decide when, if ever, nontreatment of a life-threatening infection is appropriate. Likewise, few hospitals or nursing homes have

policies about the procedures to be followed in

making such decisions. Some observers have expressed concern that these factors place overwhelming responsibility on the shoulders of the

individual physician (33). Others have noted that

the lack of guidelines and policies allows wide

variability and individuality in decisionmaking (8).

One OTA contractor concluded that guidelines or

criteria for decisionmaking could have both good

and bad consequences (8):

Good consequences will result from providing

a structure for physicians to consider carefully

the goals for starting antibiotic therapy and to discuss with the patient and family all aspects of the

decision to treat or not treat with antibiotics. Bad

consequences will result because rigid guidelines

(especially if enacted in statutes or codes) will severely limit the individual capabilities of the best

physicians, already sensitive advocates for their

patient’s wishes, to practice the art of medicine (8).

professional associations could develop guidelines for decisionmaking to encourage communication among physicians and other professional

caregivers about factors that should be considered in such decisions. Process-oriented guidelines

in hospitals, nursing homes, and other health care

facilities could delineate more clearly the role of

the patient or surrogate in the decisionmaking

process and the circumstances in which explicit

consent, either written or verbal, should be obtained before antibiotic therapy is initiated or

withheld.

CHAPTER 9 REFERENCES

1. American Medical Association, AMA Drug EvahMtions, 5th ed. (Chicago, IL: April 1983).

2. American Society of Hospital Pharmacists, “Infections” and ‘(

Skin Problems, ” in Consumer Drug Digest (New York, NY: Facts on File, 1982).

3. Asscher, A. W., “Management of Urinary Tract infections,” Delaware Medical Journal 53(2):85-89,

1981.

4. Baines, M. J., “Control of Other Symptoms, ” The

Management of Terminal Disease, C.M. Saunders

(cd.) (London: Edward Arnold, 1978).

5. Balinsky, W., “Home Care Prescription Drug Reimbursement: A Case for Intravenous Antibiotics, ”

Hoffmann-LaRoche, Inc., Nutley, NJ, 1986.

6. Baum, C., Kennedy, D. L., Forbes, M.B., et al., “Drug

Use and Expenditures in 1982)” Journal of the

American Medical Association 253(3):382-386, 1985.

7. Bentley, D. W., University of Rochester, Monroe

Community Hospital, personal communication,

April 1986.

8. Bentley, D. W., Barker, W. H., Hunter, K. M., et al.,

“Antibiotics and the Elderly,” prepared for the Office of Technology Assessment, U.S. Congress,

Washington, DC, January 1986.

9. Bentley, D. W., Ha, K., Mamot, K., et al., “Pneumococcal t’accine in the Institutionalized Elderly: Design of a Nonrandomized Trial and Preliminary Results,” Review of Infectious Diseases 3: S71-S81,

1981.

10. Berk, S. L., and Smith, J. K., “Infectious Diseases in

the Elderly,” Medical Clinics of North America

67(2):273-293, 1983.

11. Berk, S. L., Weiner, S. L., Eisner, L. B., et al., “Mixed

Streptococcus Pneumonia and Gram-Negative Bacil -

lary Pneumonia in the Elderly, ” Southern Medical

Journal 74:144-146, 1981.

12. Biomedical Business International, Inc., “Home 11’

Drug Therapy,” Nutritional Support and 11’ Drug

Therapy Products and Ser~ices for Hospital and

Outpatient Use, Report 7028 (Tustin, CA: 1985).

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354 ● Life-Sustaining Technologies and the Elderly

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Chapter 10

Manpower and Training
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........357

Caregivers and Their Roles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..........,.....358

Specialists in Primary Care and Geriatrics.. . . . . . . . . . . . . . . . . . . . . . . . . .. ...358

Specialists uncritical Care Medicine and Nursing . . . . . . . . . ................359

Allied Health Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................360

The Historical Context of Geriatric Practice . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...361

Federal Support for Geriatrics. . . . . . . . . . . . . . . . . . . . . . . ..................362

Shortage of Geriatric Expertise . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .........363

Shortage of Geriatric Specialists . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........364

Barriers to Recruitment in Geriatrics . . . . . . . . . . . . . . . . . . . . . ..............364

Education and Training Needs: Selected Content Areas . . . . . . . . . . . . . . . . . . . . .366

Technology-Independent Content . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .......366

Technology-Specific Content . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. .. ... ... ....370

Interdisciplinary Collaboration . . . . . . . . . . . . . . . . . . . . ......................371

Conflicting Perspectives and Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....371

Effective Teamwork . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..........374

The Impact of Federal Payment Policies on the Employment and Training of

Health Professionals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..................376

Employment Patterns and Personnel Needs. . . . . .........................376

Clinical Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .....................378

Evolving Credentials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....................380

Credentials in Geriatric Medicine and Nursing . ..........................381

Credentials uncritical Care Medicine and Nursing . . . . . . . . . ...............382

Technology-Specific Credentials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....382

Findings and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................384

Chapter IO References.. . . . . . . . . . . . . . . . . . . . . . . .............,...........385

Box

Box Page

10-A. Not on My Shift . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..................368
Chapter 10

Manpower and Training

INTRODUCTION

The five medical technologies discussed in the

preceding chapters represent an impressive variety of devices and substances capable of sustaining life. This chapter focuses on a crucial element that is common to them all-dependence on

qualified personnel. The chapter examines factors that influence the supply, the training, and

the interrelationships of pertinent health professionals with each other and with their patients—

all of which influence the accessibility, quality, and

cost of health care for elderly persons for whom

life-sustaining technologies are, or might be, used.

The professions involved in the care of lifethreatened elderly people are numerous, diverse,

and changing. The advent of new technologies to

sustain life has been accompanied by major expansion of training initiatives and career opportunities, both inside and outside the traditional

health professions. Within the professions of medicine and nursing, new specialties and subspecialties have developed, and members of the traditional professions and older specialties have had

to acquire new knowledge and new skills. In addition, entirely new health professions have been

created. In the past 25 years, tens of thousands

of people have moved into “technology-dependent”

health professions.

During roughly the same period, recognition of

the vast and growing numbers of elderly persons

in the U.S. population has created a new focus

within the health professions. After a consciousness-raising characterized as ‘(almost a revolution”

(93), there is now wide agreement among health

professionals that “the elderly are not simply old

adults” (129), and a significant commitment has

emerged within medicine, nursing, and some allied health professions to redress past neglect of

the elderly (89).

Another important development is the growing recognition that today’s health professionals

need to be prepared to deal with the ethical, legal, and economic constraints that modern medical technologies bring to the fore. There is increased attention to the fact that decisionmaking

about life-sustaining technologies demands caregivers who understand and are sensitive to ethical and humanitarian principles. These caregivers

must not only know their profession and understand the patient population, they must show good

judgment and caring, respect for patients’ wishes,

communication skills, ability to work as part of

a health care team, and readiness to help even

when healing is no longer possible.

The health professionals who care for elderly

patients receiving life-sustaining technologies come

from diverse professions and specialties that, very

broadly, represent two orientations: the generalist approach of primary care and, in contrast,

the more focused approach of critical or intensive care. Specialized care of the elderly, i.e,, geriatrics, is closely aligned with adult primary care.

Health professionals who specialize in primary

care and geriatrics, on the one hand, and those

who specialize in critical care, on the other hand,

increasingly meet in the clinical arena. Relationships between them, however, have received little attention. One purpose of this chapter is to

explore these relationships and how they may affeet the care elderly patients receive. The focus

is on the setting in which most of this interaction

occurs, i.e., the acute care hospital.

Federal policies and programs have important

direct and indirect effects on the health professions. Federal manpower policies, for example,

include explicit measures to influence the overall

supply of health professionals as well as measures to change their specialty and geographic distribution. Other Federal policies and programs,

including Medicare, influence the supply, specialty,

and geographic distribution indirectly. Federal regulations regarding certification of hospitals and

nursing homes by Medicare, for example, impose

standards for the number and skill levels of caregivers that Medicare-certified institutions employ.

Federal policies regarding reimbursement for patient care affect the demand for certain proce357
358 . Life-Sustaining Technologies and the Elderly

dures and technologies; these factors in turn indirectly influence the specialty choices and career

opportunities of health professionals (72,74). Some

of these policies have favored the development

of medical technologies and medical specialties

over primary care. other Federal programs and

policies have been specifically directed to improve

primary care for elderly people and access to it.

Some important manpower and training questions, such as questions about how medical expertise and responsibilities are best organized, are

only secondarily related to public policy. Whether

or not geriatrics warrants status as a separate medical specialty, or whether nurses should provide

respiratory therapy, for example, are questions

for knowledgeable professionals to decide. A profession’s decisions about what its members must

know and what they may do, however, have important ramifications that fall squarely within the

interest of both policymakers and patients. Furthermore, Federal policies that affect health

professions training and health care reimbursement have an impact on the professions’ ability

to implement their intended policies.

CAREGIVERS’ AND THEIR ROLES

The medical technologies considered in this report involve an enormous array of professions and

individuals. This chapter focuses on the physicians, nurses, and allied health professionals who

provide direct patient care, especially in hospitals.

Essential behind-the-scenes professionals, including researchers and engineers, hospital administrators, and others, are beyond the scope of this

discussion. Similarly, the importance of psychologists, clergy, lawyers, and other professionals

who serve counseling and coordinating functions

is recognized but not addressed.

In some settings, nonprofessional staff contribute

to the care of seriously ill elderly persons who may

be candidates for life-sustaining treatments, and,

at times, they contribute to treatment decisions. In

nursing homes, where aides constitute by far the

largest proportion of caregivers (78), responsibility for decisions about transferring a resident to

a hospital for the initiation of life-sustaining treatment belongs to professional nurses and physicians. However, professional staff are often unaware of changes in a resident’s condition unless

notified by an aide. So, while nonprofessional staff

are not routinely or intentionally involved in treatment decisions, they sometimes play a role.

Another major category of caregivers, especially

for patients in their own homes, consists of family members, friends, and patients themselves.

These lay caregivers provide routine care and also

‘The term “caregivers” is used to refer collectively to professional

personnel and other persons who provide patient care.

may make critical decisions about when to call

professional help. OTA acknowledges the importance of family and other nonprofessional caregivers–and their increasing importance as more

life-sustaining treatment moves outside the hospital. The availability, training, and supervision

of lay caregivers and their need for social and

financial support are discussed in chapters 5

through 9.

Physicians and, to a lesser extent, nurses most

often play the key roles in making recommendations about implementing life-sustaining treatments. However, “physicians and nurses” includes

a range of actors such as primary care physicians,

specialists and subspecialists; the patient’s longtime personal physician as well as consultants the

patient may never meet; highly trained professional nurses as well as practical nurses; individuals with extensive experience and others still in

training. In addition, many categories of allied

health workers are involved in the delivery of lifesustaining technologies. Ensuring that the necessary combination of expertise (whether this is embodied in a single individual or a health care team)

is available for all patients is a major concern.

Specialists in Primary Care

and Geriatrics

Primary care practitioners are those health

professionals who have initial contact with and

ongoing responsibility to the patient, Most often,

adult primary care is provided by a physician who
Ch. 10—Manpower and Training ● 359

is a specialist in internal medicine or family practice. In some settings, especially long-term care

institutions, professional nurses and nurse practitioners may provide primary care. The functions

of primary care professionals include identifying

and managing illness and-especially important

in the case of patients with complex conditions

and needs—referral of patients to other health

professionals or services. Relative to other specialists who may be drawn into a case, whose expertise relates to one or another organ, system, or

disease, primary care physicians and nurses have

a more holistic perspective and often broader

knowledge of the patient, sometimes through a

relationship established over many years.

A geriatrician is a physician who possesses special knowledge of geriatrics or geriatric medicine,

i.e., “the medical knowledge of physical disability

in older persons—including the diagnosis, treatment, and prevention of disorders” (148). Although

most geriatricians are trained as primary care

practitioners, a geriatrician is seldom the “primary” physician to be consulted. Gerontologic

nurses and geriatric nurse practitioners are the

other major groups of health professionals that

specialize in the care of the elderly.

Specialists in geriatrics and gerontology have

a broad approach to the patient that includes psychosocial as well as biomedical characteristics, and

interest in preventing illness and disability as well

as restoring maximum functioning and health. In

medicine, the breadth of geriatrics and the resulting overlap with better established medical specialties contributes to ambiguity about the proper

disciplinary boundaries (138) and the optimal relationships between geriatricians and other physicians.2

2There has been considerable debate over whether geriatric

medicine consists of a discrete body of knowledge and skills that

warrants clinical or pedagogic organization as an independent specialty, whether it should be included in all adult medical specialties,

or whether it should be a subspecialty of internal medicine, family

practice, or both. This debate appears to be coming to a close with

the recent decision by the American Board of Medical Specialties

to authorize the American Board of Family Practice and the American Board of Internal Medicine to offer special geriatric certification within famil~r practice and internal medicine. Geriatrics is not

currently a formal (i.e., board-certifiable) specialty or subspeciahy

and OTA uses the terms “geriatrician” and “geriatric specialist” interchangeably (see “Credentials in Geriatric Nfedicine and h’ursing, ”

below),

It is important to recognize that the vast majority

of primary care practitioners involved in the care

of elderly patients are not specialists in geriatrics

or gerontology. Some physicians regard their work

as “geriatric” simply because they have a great

many elderly patients by virtue of their work setting, the number of years they have been in practice, the age distribution of patients requiring their

expertise, or their geographic location (103). It was

estimated over a decade ago that 40 percent of

the average internist’s patients were 65 or older

and that they took up about 60 percent of the internist’s time (33). A more recent prediction is that

medical school graduates will, at the peak of their

careers, spend 75 percent of their time with patients who are 65 or older (27). Clearly, however,

caring for elderly persons does not qualify one

as a specialist in geriatrics. (By the same token,

age 65 alone does not necessarily mean that a patient requires a physician with special geriatric

expertise. Most authorities cite 75 as a more accurate criterion for the “geriatric population.”)

Specialists in Critical Care

Medicine and Nursing

The widespread development and application

of modern life-sustaining technologies has caused

and, in turn, has been assisted by the development of new specialties-most notably critical care

medicine and critical care nursing—in a new

health care setting, the intensive care unit (ICU).

In the intensive care setting, physicians, nurses,

and other health professionals work together

closely, ideally as members of the ICU team. A National Institutes of Health consensus development

conference characterized critical care as:

a multidisciplinary and multiprofessional medical/nursing field concerned with patients who

have sustained or are at risk of sustaining acute

life-threatening single or multiple organ system

failure due to disease or injury (115).

The Society of Critical Care Medicine has approximately 2,900 members. Almost 90 percent

are physicians; the rest are mainly nurses and respiratory therapists (135). The primary specialty

of most critical care physicians (also referred to

as “intensivists”) is either internal medicine,

anesthesiology, surgery, or pediatrics. However,
360 • Life-Sustaining Technologies and the Elderly

physicians from many other specialties (e.g., emergency medicine, neurology) and subspecialties

(e.g., pulmonary medicine, cardiology, nephrology) are routinely involved in the care of critically ill elderly patients.

Nurses who specialize in critical care provide

nursing diagnoses and interventions in life-threatening illness. According to the American Association of Critical-Care Nurses (AACN), critical care

nurses are challenged to provide “humanistic care

in the high-technology world today and in the future” (4). Membership in the association, one indicator of the number of nurses working in critical care, is currently about 53,000 (44).

Under the umbrella of critical or intensive care,

another level of specialization is pertinent to the

provision of life-sustaining technologies. For example, critical care nurses may specialize in respiratory care, parenteral and enteral nutrition,

or intravenous therapy. A very small number of

critical care nurses have had training in gerontological nursing (127). In other health professions,

where the work is not exclusively with critically

ill patients, the same pattern exists. For instance,

there are dietitians who specialize in critical care

and social workers who specialize in nephrology.

In large teaching hospitals, it is estimated that

approximately 35 percent of all ICU patients are

at least 65 years old (149). Thus, most health care

professionals involved in the implementation of

life-sustaining technologies have considerable experience with elderly patients. As suggested above,

however, exposure to elderly patients does not

guarantee the special knowledge, attitudes, and

skills that good geriatric care requires. There appears to be no educational or training program

within either critical care medicine or nursing that

focuses attention on elderly patients (44,69). The

position of AACN is that:

. . . the practice of critical care nursing is generic

to any critically ill patient, regardless of the age

of that patient and that knowledge of the lifespan

processes affecting individuals is given in one’s

basic nursing education program (44).

Allied Health Professionals

In the provision of life-sustaining technologies,

the roles of physicians and nurses are supplemented and complemented by allied health professionals who are responsible for specific, often

highly technical tasks. The allied health professions most closely linked to resuscitation, mechanical ventilation, dialysis, and nutritional support

are briefly described here. Life-sustaining antibiotic therapy is prescribed by a physician and

administered by a registered nurse; in general,

such therapy does not require personnel that are

unique to this technology (see “TechnologySpecific Credentials,” below).

●

●

●

In the hospital, resuscitation is usually performed by physicians or nurses who have

been trained and certified in cardiopulmonary resuscitation (CPR). They maybe assisted

by respiratory therapists or by paramedics

(see below),

In the community, emergency medical technicians (EMPTs) are usually the first health

professionals to arrive at the scene of an

accident or medical emergency. Both EMTambulance and the more highly trained EMTparamedics provide basic life support to restore breathing, treat shock, control bleeding, etc. The EMT-paramedic may implement

advanced life support technologies including

administration of drugs and oxygen, insertion of an intravenous line, incubation of the

lung, and operation of a defibrillator. All these

and other treatments are performed under

the supervision of a physician, with whom

the EMT is in constant communication (76,81).

Respiratory therapists and respiratory therapy technicians may administer mechanical

ventilation, oxygen therapy, assist in CPR, and

perform other less invasive treatments including chest physiotherapy. Other responsibilities include performing diagnostic tests and

monitoring, as well as adjusting, sterilizing,

and maintaining equipment.

Respiratory therapists are more highly trained

than respiratory therapy technicians and are
Ch. 10—Manpower and Training ● 361

●

●

generally given more responsibility (including research, teaching, and supervision of respiratory therapy technicians), but their actual duties vary greatly from one hospital to

another (76)106). Both types of personnel

work under the supervision of the chief of

the respiratory service (a physician or respiratory therapist).

Respiratory therapy assistants have limited

patient contact; their roles include cleaning

and maintaining equipment, processing inventory, and other clerical duties (2).

Dialysis technicians, working under the supervision of either medical or nursing personnel, function in one or more of four areas:

direct patient care, research, administration,

and equipment maintenance and repair (5).

Dietitians have roles that may be primarily

clinical, administrative, research, or teaching;

they may work as staff of an institution, as

consultants, or in the community (106). Specialists referred to as nutritional support

dietitians or dietitians in critical care a r e

skilled in the use of enteral and parenteral

solutions, modular nutrients and foods. They

collaborate with physicians, nurses, and pharmacists to assess nutritional status, design dietary treatment, and monitor its effectiveness.

Under the guidance of a registered dietitian,

dietetic technicians and dietetic assistants may

also be involved in the care of patients reTHE HISTORICAL CONTEXT

The establishment of Medicare in 1965 helped

focus public attention on the health care needs

of the elderly, but predated almost all opportunities for health professions education and training in geriatrics or gerontology. A 1969 survey

found that fewer than half the medical schools

in the country (48 of the 99 schools then in operation) included in their curricula even a single

course with any identifiable content related to

aging (62). The Division of Gerontological Nursing within the American Nurses’ Association had

been established in 1961; advanced nurse training leading to certification as a geriatric nurse

practitioner, however, did not become available

until the 1970s. Programs to prepare allied health

professionals in geriatrics and gerontology are

●

●

OF

ceiving enteral nutrition (6,14).

Nutritional support pharmacists are specialists who participate in the assessment and

care of patients who may require nutritional

support, In collaboration with other health

professionals, the pharmacist’s role includes

ongoing assessment and planning, provision

of care, monitoring and evaluating the patient’s response. It is also the role of the pharmacist to prevent problems related to the interactions between nutrients and drugs a

patient is receiving (15).

The role of medical social workers is to help

prevent or resolve social, psychological, and

economic crises that may arise from an illness, the proposed treatment, or the environment. They may contribute to decisions about

the use of life-sustaining technologies by providing other caregivers a composite picture

of the patient within the context of his or her

family, life-style, and community. They educate and provide emotional support to patients and family members, to help them

understand the situation and options. Preceding a patient’s discharge from a hospital, or

in the event of death, medical social workers

identify community services and make logistical arrangements (105,106). Some social workers, e.g., nephrology social workers, specialize in the care of particular groups of patients.

GERIATRIC PRACTICE

much more recent than programs in medicine or

nursing.

Largely because of Federal support, major progress has been made in expanding the educational

and training opportunities in geriatrics and gerontology. However, very serious deficits remain in

the level of geriatric expertise among health care

professionals generally and in the number of individuals who have chosen to specialize in the care

of the elderly.

In 1978, a study conducted by the Institute of

Medicine found serious deficits in geriatrics education and training in medical schools as well as

postdoctoral and continuing medical education

(77). Only a few schools offered geriatrics as a sep-
362 Ž Life-Sustaining Technologies and the Elderly

arate subject, and almost no schools required it.

A 1983 survey of geriatric education in medical

schools documented considerable expansion of

geriatric course offerings, but found that in 28

percent of the responding medical schools, geriatrics was still either elective or unavailable (21).

While some gerontological content is now included in most basic professional nurse training

programs, only about 14 percent of these programs offer full courses in gerontological nursing (148). Until 1981, the geriatric track was an

option within programs that were based on the

core curriculum for adult nurse practitioners (52).

Now, among approximately 200 nurse practitioner

programs, about 40 have a primary focus in geriatrics and approximately 31 others have a gerontological component (148). Many of these programs, however, have as few as three or four

trainees (155).

In the allied health professions, the extent of

training opportunities is difficult to assess, in part

because ‘(allied health professions” includes so

many different groups. Recognition of the need

for attention to the elderly is evident in the American Dietetic Association’s 1978 establishment of

the Gerontological Nutrition Dietetic Practice

Group and the American Society of Allied Health

Professions’ 1986 establishment of a National Task

Force on Geriatric Care Education (134). Another

indication of the developing interest in geriatrics

among the allied health professions is that a Department of Health and Human Services (DHHS)

forum on Personnel for Health Needs of the

Elderly, held in October 1986, drew presentations

by official representatives of respiratory care, social work, physicians assistants, occupational therapy, optometry, and others.

Federal Support for Geriatrics

Federal support of geriatric training began with

early Veterans Administration (VA) programs and

was greatly bolstered by the establishment of the

National Institute on Aging (NIA) in 1974. Currently, geriatric education and training receives

support from the VA and from several DHHS agencies (the Administration on Aging, National Institute on Mental Health, and the Health Resources

and Services Administration) in addition to NIA.

There is considerable range in the scope, focus,

and financial commitment of these various agencies to geriatrics. In addition to the Federal Government, a number of State governments and private foundations have also demonstrated their

interest and commitment to strengthening geriatric manpower. Some programs are designed to

increase geriatric knowledge and skills among

health professionals generally; others are designed

to prepare leaders in geriatric teaching, research,

and practice.

The largest Federal programs in geriatrics are

the VA’s Geriatric Research, Education and Clinical Centers (GRECCs) and the Health Resources

and Services Administration’s Geriatric Education

Centers (GECs). These multidisciplinary training

centers are important resources for both students

and practicing health professionals. GECs increase

the “presence” of geriatrics within academic institutions and their communities, and increase access to training and to trained caregivers, including some of the professionals involved in the

delivery of life-sustaining technologies. Some of

the GRECCs are focused on problems relevant to

life-sustaining technologies. The GRECC in Little

Rock and the one in St. Louis, for example, have

been designated as “nutrition GRECCs.”

In contrast, the rapid development of the medical specialties that are associated with critical care

(cardiology, pulmonology, nephrology, oncology,

and others) was facilitated by extensive Federal

support of biomedical research during the 1960s

and 1970s and by Medicare’s support of hospitalbased clinical training. However, there have been

no Federal programs specifically earmarked for

support of training in critical care medicine or

critical care nursing.3

It is recognized within the Federal Government

that, despite the commitment of funds, the clear

progress, and a projected surplus in the total physician supply (145), the supply of health professionals with expertise in geriatrics remains very

%aining programs in critical care have had to compete for more

general health professions education funds, for example, through

Title VII (medical training) and VIII (nurse training) of the Public

Health Service Act. Some observers believe that the recent designation of critical care medicine as a subspecialty will improve its ability to secure funding (69).
Ch. 10—Manpower and Training ● 363

inadequate. In 1984, an NIA report cited continuing deficits in available education and training of

physicians, nurses, and other professionals in geriatrics and gerontology (148), Specific steps to alleviate these deficits were recommended. A 1985

amendment (H.R. 2409) to the Public Health Service Act required the Secretary of Health and Human Services to conduct a study on the adequacy

and availability of health personnel to care for

America’s elderly over the next four decades (143).

The Secretary’s report will be presented to Congress in mid-1987.

The shortage of qualified teachers is a serious

problem, and it helps perpetuate the shortage of

qualified practitioners. In nursing, “the inadequate

preparation of faculty in gerontology” is cited as

the “largest single problem in strengthening the

gerontological content in basic schools of nursing”

(148). The same was concluded about medicine

in 1984 (148) and again in 1986 at an Institute of

Medicine and NIA workshop, which concluded

that the number of well-prepared medical faculty

is far from adequate, and opportunities for wouldbe faculty to receive appropriate graduate training remain very limited. In 1985-86, there were

48 fellowship programs in geriatric medicine offering 176 positions (and 21 fellowship programs in

geropsychiatry, offering 52 positions) (23).’ In

nursing and the allied health professions, training opportunities are even more limited.

Shortage of Geriatric Expertise

Caregivers who lack formal education and training in geriatrics are not necessarily unprepared

to care for elderly patients. Nevertheless, there

is ample evidence of a severe shortage of medical

and nursing expertise relevant to the complex

problems presented by many elderly patients.

Disease and disability among the elderly are frequently misdiagnosed, mistreated, or simply written off as concomitants of normal aging. A condition that is aggressively treated in younger people

4Experience suggests this would result in about 65 graduates per

year (23).

may be mistakenly regarded as irreversible—or

it may be perceived as a blessing.

Geriatric consultation units have reported finding many elderly hospitalized patients with potentially treatable conditions that had been either

misdiagnosed or overlooked entirely (1,38)94).

Some examples of inadequate knowledge and skills

regarding elderly patients or ageist biases that are

relevant to life-sustaining technologies are: caregivers’ difficulty in assessing the decisionmaking

capacity of some elderly patients; the assumption

that elderly patients will not do well on dialysis

or that elderly ventilator patients can never be

cared for at home; or, alternatively, the belief that

the same nutritional support formulas or drug

dosages used for young adults are suitable for the

old.

Because of geriatrics’ late entry in academia

there is a considerable need for continuing education programs in geriatrics. Such programs are

the only way to reach the majority of health professionals whose formal education predated opportunities in geriatrics, In the last few years, medical schools, State and local medical societies,

professional societies, and others have increasingly offered courses for practicing physicians and

nurses. However, there are no mechanisms either

to require participation in geriatric continuing

education programs or to control the quality of

the programs.

Advanced training in geriatrics seldom includes

special attention to the care of the critically ill.

Fellowship programs in geriatric medicine generally do not include training in ICUS, and certification in gerontological nursing does not require

experience with the critically ill. As a result, some

geriatric specialists might have unrealistic expectations about what critical care can accomplish

and may seek admission to the ICU for elderly

patients who cannot be helped there. Conversely,

postgraduate medical and nursing training in critical care does not appear to include specific attention to aging (7). A certain amount of crosstraining in geriatrics and critical care could improve communication among caregivers and, thus,

lead to more appropriate treatment decisions on

behalf of elderly patients.
364 Ž Life-Sustaining Technologies and the Elderly

Shortage of Geriatric Specialists

Physicians

In addition to the need for geriatric expertise

among primary care physicians, there is also a

need for a certain number of specialists to serve

as teachers, researchers, medical directors in nursing homes, and as consultants in complex cases

(35). In a landmark study commissioned by NIA,

researchers at the Rand Corp. developed estimates

of the need for these geriatric specialists. By 1990,

Rand estimated, there will be a need for approximately 8,000 full-time-equivalent (FTE) geriatricians providing patient care and 900 FTE academic

geriatricians (82). Rand’s projections were conservative in that they were targeted to the population

aged 75 and older, assumed only a small increment in the quality of care, and did not include

the large and crucial component of geropsychiatrists. Moreover, one author of the Rand report

now points out that, when newer demographic

projections are taken into account, the need for

geriatric specialists is much higher than originally

estimated (22). In sharp contrast to the estimates

of need, unpublished data from the 1983 Physician Masterfile of the American Medical Association included only 1,833 physicians who identified geriatrics among their specialty fields (104).

In March 1986, American Medical Association data

included only 922 active physicians who identified geriatrics as their primary specialty (12).

A 1982 survey of physicians found that the estimated number who designated geriatrics as one

of their specialties more than doubled between

1977 and 1982, from 715 to 1,618 nationally (103);

since 1982, further annual increases have been

documented (104). However, physicians tend to

enter geriatrics relatively late (mean age 39) and

spend, on average, only half their work week in

geriatrics, factors that effectively reduce their contribution to the manpower supply, In 1982, there

were approximately 10 percent of the number

of FTE geriatric clinicians and 13 percent of the

number of FTE researchers/teachers that Rand

said would be needed in 1990 (103).

Nurses

Similarly, there is a severe shortage of nurses

specializing in gerontology or geriatrics. A 1983

report by the Institute of Medicine concluded that

registered nurses with graduate education prepared to administer the increasingly complex care

demanded in some settings (e.g., the ICU), as well

as nurses willing and trained to work with the

elderly, especially in nursing homes, remain in

short supply (as do nurses in rural areas and inner cities), while the general nurse shortage of

the 1960s and 1970s has dissipated (78). Consistent with this conclusion, a 1984 DHHS report to

Congress (148) identified a severe shortage of

nurses adequately trained to care for the elderly

or to teach in nursing schools. Compared with

the estimated need for 2,450 gerontological nursing faculty, a 1980 survey by the Health Resources

and Services Administration identified only 420

nurses with master’s or doctoral degrees whose

primary focus was geriatrics or gerontology (148).

Allied Health Professionals

Information regarding geriatric specialization

among allied health professionals is unavailable.

In view of the limited opportunities for training,

however, the numbers of allied health professionals with geriatric expertise are certainly inadequate.

Barriers to Recruitment

in Geriatrics

Efforts to attract health professions students to

academic experiences in geriatrics and/or to geriatric careers have historically faced a variety of

barriers. Low enrollment in elective courses in

geriatrics and the shortage of applicants for geriatric fellowships (with the result that some positions go unfilled) are indicators that interest is still

limited. In New York, geriatrics has been exempted

from a State policy that excludes foreign medical

graduates from postgraduate medical training

(121). The ability of unlicensed physicians to secure work in some nursing homes and the shortage of nurses for nursing home work (78) are further indications that competition for jobs in

geriatrics remains low.

One reason is ageism, the general societal prejudice against the elderly (33,35). The irreversibility and deterioration associated with many chronic

conditions and the poor prognosis of many elderly
Ch. 10—Manpower and Training • 365

patients with acute illness are powerful images,

particularly when contrasted to the physician’s

self image as a healer. Working with elderly patients is said to evoke caregivers’ fears of their

own old age, their own mortality and their relationships with elderly family members as well as

fears of their fallibility (45,96). Compared with care

of the elderly in general, care focused on the critically and terminally ill elderly may intensify these

fears. Furthermore, the negative attitudes and

stereotypes frequently associated with old people appear also to adhere to the individuals who

provide their health care (60). Geriatricians have

been stereotyped as sympathetic but underskilled

physicians who drifted into geriatrics as their patients (and they themselves) aged. Nurses who

work in nursing homes have been widely regarded

as inexperienced and undereducated (142).

Another reason for disinterest in geriatrics has

been the relatively low remunerative potential.

It is no secret that “older patients are somewhat

of a losing proposition if they are considered simply in a business sense” (92). When first established, Medicare and Medicaid appeared to some

health professionals to create a new market for

their services. By providing reimbursement for

the care of elderly (and other) patients, these programs drew attention to geriatrics and stimulated

interest both in caring for elderly persons and

in working in nursing homes. More recently, however, the limited reimbursement available under

these programs has been cited as a disincentive

to geriatric work (54,92,131). Although coverage

and reimbursement levels under Medicare Part

B provide financial incentives to physicians in

hospital-based, procedure-oriented specialties, the

relatively low reimbursement available for the

more ‘(cognitive” specialties is an economic disincentive for primary care specialties in general and

geriatrics in particular. There is, for example, no

allowance in Medicare reimbursement for patients

who require excessive amounts of a physician’s

time, whether for extended office visits, frequent

phone consultations, or travel to a nursing home.

For registered nurses who complete advanced

training in geriatrics or gerontology, Federal reimbursement policy may actually restrict employment opportunities. The services of geriatric nurse

practitioners are directly reimbursable by Medicare, but only when the geriatric nurse practitioner is supervised onsite by a licensed physician.

In hospitals, this requirement is easily met. In most

nursing homes, however, this requirement makes

reimbursement difficult to obtain. As a result,

highly trained geriatric nurse practitioners are

too expensive for most nursing homes to hire. Similarly, Medicaid’s restricted payments for skilled

nursing personnel appear to leave most nursing

homes with a choice of paying high salaries to a

few highly trained nurses or paying low salaries

to a large number of unskilled aides (78).

Another source of negativism regarding geriatrics—of particular relevance to this discussion—

is the fascination of American medicine with technology and the view that geriatrics is a “low-tech”

field, concerned primarily with the management

of patients with chronic, irremediable problems.

Nursing homes, where most geriatric work is assumed (wrongly) to occur, have been dubbed a

‘(no tech” environment (101). Under this view, the

application of high-technology critical care medicine and geriatrics might seem antithetical. Persistence of the low-tech image contributes to the

belief that geriatrics is an unexciting, unchallenging field.

Failure to see the relevance of medical technology in general and critical care technologies in

particular to geriatric practice could be attributed

to the attitude that the potential life-sustaining

benefits of complex, expensive medical care are

“wasted” on the old. Or, it could be attributed to

the belief that geriatricians are exclusively concerned with chronic illness and that patients in

their care escape the acute life-threatening episodes that occur in other age groups.

In comparing geriatrics with other medical specialties, the issue may not be how much or how

“high” the technology, but qualitative differences

in the technologies that are relevant. In geriatrics, tools for functional assessment and differential diagnosis, rather than technological hardware,

are the mainstay. However, it is necessary that

the geriatrician know enough about potential lifesustaining technologies and their efficacy to con-
366 • Life-Sustaining Technologies and the Elderly

tribute to decisions about their use for individual of judgment about when and when not to use such

patients. This includes: interventions, and the courage and energy to take

seriously the social role of advocate for the pa-

. . . competent familiarity with the capabilities of tient (41).

the latest in medical technology, a discerning sense

EDUCATION AND TRAINING NEEDS: SELECTED CONTENT AREAS

The knowledge applicable to the care of elderly

patients who are candidates for or already receiving life-sustaining technologies maybe considered

in two very broad categories: general knowledge

about caring for elderly patients who are critically ill, terminally ill, or severely debilitated and

knowledge that is linked to the use of specific technologies. The following selective review identifies

subjects that may have particular importance in

the assessment and care of life-threatened elderly

patients.

Technology-Independent Content

Some essential knowledge is not linked to any

life-sustaining technology in particular but is basic

to decisions about the use of all life-sustaining technologies for elderly persons. Knowledge of this

sort includes clinical factors that distinguish

elderly patients from younger ones and humanitarian and social perspectives that recognize the

uniqueness and autonomy of each elderly patient.

Clinical Geriatrics

Health professionals caring for severely ill

elderly patients must be knowledgeable about agerelated physiological factors, and their interactions. To make correct diagnoses and treatment

recommendations for elderly patients, caregivers

must know that certain illnesses have unusual

presentations or progressions in elderly patients.

The presentation of some illnesses in elderly patients may be characterized by specific signs and

symptoms that differ from the classic presentation of the same illness in younger adults, or frequently, by nonspecific signs and symptoms that

do not clearly indicate the affected organ system.

Elderly patients having heart attacks, for example, do not always experience chest pain. Instead,

they may have other signs and symptoms such

as sudden loss of consciousness, confusion, or sudden onset of heart failure. Pneumonia may be

present without any of the classic signs (e.g., fever, elevated white blood cell count); instead, there

may be only nonspecific manifestations such as

confusion, lethargy, or weakness (16,129,130).

Caregivers must recognize that elderly patients

are at higher risk than younger patients for developing complications of illness and complications

of treatments. Because complications, especially

those related to drug interactions, drug toxicity,

nosocomial infections, and malnutrition, may be

severe and potentially fatal, expertise in their prevention and treatment is important. Even while

a patient is in the midst of an acute problem that

is immediately life-threatening (e.g., respiratory

insufficiency) and is treated with some sophisticated technology (e.g., mechanical ventilation), the

patient’s caregivers must also be concerned with

prevention of iatrogenic complications (7).

Certain psychological problems that are more

frequent with advanced age become particularly

significant when a patient’s physiological status

is already compromised. Impaired mental functioning (whether due to cognitive or affective disorders) may have serious implications for a patient’s ability to participate in treatment decisions

and may diminish the efficacy of some life-sustaining treatments. This heightens the importance

of caregivers’ knowledge about prevention, diagnosis, and possible treatment of psychological

problems.

It is essential that caregivers be able to fairly

assess each patient’s capacity to understand proposed treatment options and to participate in treatment decisions. They must be aware that a patient’s mental state may be influenced by a number

of factors such as drug toxicity or infection, that

the condition may be reversible, and that cognitive impairment can never be dismissed as an

aspect of “aging” or ‘(senility. ”
Ch. 10—Manpower and Training ● 367

Effective treatment of depression or confusion

may facilitate an elderly patient’s cooperation with

life-sustaining treatments and thus improve their

efficacy. It is far easier and safer to administer

treatments such as dialysis or mechanical ventilation to a cooperative, lucid patient than to a disoriented, combative one who continually attempts

to remove intravenous, nasogastric, or tracheostomy tubes. Also, patients with improved mental

functioning are better able to communicate with

caregivers about symptoms they may experience

and, thereby, can assist in early detection of complications.

When critically ill or diagnosed as terminally

ill, patients are at heightened risk for developing

new cognitive and affective problems as well as

exacerbations of existing conditions. Hospitalization, especially in an ICU, is itself a risk factor for

developing certain types of cognitive dysfunction.

Psychiatrists and others have described a phenomenon termed “ICU psychosis, ” referring to a fairly

common occurrence wherein the stress of being

an ICU patient induces a temporary psychosis akin

to “combat fatigue” in soldiers (70,83,85,136). Physicians must recognize that elderly persons may

have less reserve to tolerate the stress engendered

by illness and ICU admission and thus may be

more likely to develop this iatrogenic condition.

For nurses and certain allied health personnel

who typically spend more time with patients than

do physicians, psychological expertise is also important. Such expertise can facilitate earlier detection of problems; it can also enable caregivers

to exert more positive influence over the patient’s

subjective experience and to provide patients more

help in coping with stress (61,140). Over the last

decade, nurses have done much to define and systematize psychological expertise. They have developed nursing diagnostic categories to identify

and classify many types of patient problems related to coping and stress, and they have developed nursing management techniques to assist patients with psychological problems (86,87).

Humanities and Human Values

It is increasingly recognized that many clinical

problems cannot be understood solely in terms

of the biomedical and technical aspects that were

the foci of traditional medical education. The introduction of the social and behavioral sciences

and, in general, broader concern for humanistic

issues represents significant change both in medical education and in the education of other health

professions that sometimes take their lead from

medicine. Medical school admissions criteria (116),

curricula, and teaching methods are being reevaluated (11,20) and, in some cases, revamped in reaction to such trends as ethical issues raised by

improved technology, the aging of the population,

more patients who wish to be active in treatment

decisions, pressure to contain or reduce costs, and

the threat of malpractice suits. The Standards for

Accreditation of Medical Education Programs

Leading to the M.D. Degree, as ratified by the

American Medical Association’s Liaison Committee on Medical Education in March 1985, state:

The curriculum cannot be all-encompassing.

However, . . . there should be presentation of material on medical ethics and human values. . . . All

instruction should stress the need for students to

be concerned with the total medical needs of their

patients and the effect of social and cultural circumstances on their health. The students must

be encouraged to develop and employ scrupulous

ethical principles in caring for patients, in relating to patients’ families, and to others involved

in the care of the patients (13).5

A survey of medical schools conducted in 1980

to 1981 found that nearly all medical schools had

introduced courses in “humanities” or “human

values .“ What this means in terms of either content or commitment varies greatly from institution to institution. The range is from a 2-year postdoctoral fellowship in Clinical Medical Ethics,’

and full-length required courses, to elective minicourses and informal methods such as “ethics

rounds.” This instruction may goon in the preclinical years of medical school or during the clinical

years and subsequent training (especially during

primary care residencies). Formal courses in the

humanities range in focus from philosophical

ethics, clinical ethics, and death and dying; to his-

%imilarly, the National League for Nursing Standards of Accreditation for undergraduate and graduate programs in Schools of Nursing require evidence of ethics in the curriculum (1 13).

% 1986, the University of Chicago’s medical school instituted the

first such program.
3@ . Life-sustaining Technologies and the Elderly

tory, law, art, literature, interviewing techniques,

and human sexuality (120).

The impact of such curricular innovations on

clinical practice is difficult to evaluate. Some advocates of humanities education say that its timing within the full medical school program and

the setting in which teaching occurs may have

substantial effect on its value. Others are skeptical about any approach that simply adds formal

instruction in humanities and ethics to a system

in which professional selection and socialization

patterns continue to reinforce the status quo. At

a time when many believe the need for education

in ethics and human values is greater than ever,

unstable funding for these programs, much of

which has come from the National Endowment for

the Humanities and private foundations, threatens

the survival of many (40).

Death and Dying

Another new content area in medical education

important for caregivers to the critically and terminally ill elderly is “death education.” Courses

in “death and dying” or “caring for the terminally

ill” (like broader humanities courses) have grown

out of recognition of the need for a more humanized approach to caregiving. They aim to counterbalance the technical training of health professionals.

Death is viewed by many physicians not merely

as the enemy of the patient, but as the “dragon”

in their career-long “crusade to protect life” (98),

and as a symbol of their own personal defeat. One

physician’s editorial about his habit of attending

his patients’ funerals, therefore, attracted national

attention (79). More typical is the avoidance behavior depicted in the story in box 10-A.

It is hard to imagine that a physician who cannot accept the death of a patient could help patients and families consider a life-sustaining technology ordeal with the dying process. Physicians’

personal and professional difficulty in dealing with

the death of their patients underscores the need

for education in death and dying.

A 1980 survey of all medical schools in the country found that 80 percent of responding schools

offered some formal death education, but that

very few of these courses existed before the early

1970s. Most schools offered only an occasional

lecture or “mini” course; the number of full-term
Ch. 10—Manpower and Training “ 369

courses was just 16. At most medical schools, at

least half of all students take the death and dying

offering (49). A sample medical school course (University of Washington) addresses the following

topics: personal attitudes toward death, patient

and family reactions to dying, role of the physician, role of the clergy, children and death, medical ethics in terminal illness, aging and death, grief

and mourning, symptom management, and interdisciplinary care of terminal illness (65).

The important role nurses play in the care of

life-threatened and dying patients has also been

recognized, as seen by inclusion of death education in the nursing curriculum. “Nurses have the

potential to enhance understanding of death with

patients or to create even more problems for patients” (110). A survey of schools of nursing found

that by the late 1970s, 45 percent of the responding schools offered some instruction related to

death and dying (141). An elective course in ‘(dying and bereavement” at the University of Wisconsin-Milwaukee nursing school includes these

issues: dealing with death, ethical and legal issues,

postdeath activities, grief and survivorship, and

community resources (139). Another example is

a 2-day training program for nursing home nurses

that aims to increase their knowledge about death

and dying and stimulate empathetic responses

(110).

A curriculum on death and dying has also been

proposed for allied health (50). The relevance of

such curriculum has been discussed for physical

therapists, occupational therapists, and some

other allied health professionals.

Almost no training is available now to help caregivers deal with their own feelings of loss, grief,

and self doubt. They are left on their own to develop coping strategies (34), which at times are

detrimental to their own well-being or may affect their professional performance. Physicians’

responses to patients’ deaths may bring physiological or psychological symptoms that can lead

to such negative behaviors as minimizing contact

with the patient or family, blaming others, and

turning to alcohol or drugs (114). The ability of

caregivers to resolve their personal feelings requires the kind of understanding that death education may help to provide.

Health Law

Courses in medical law and public policy also

have been added recently to the health professions curricula. Topics such as informed consent

and patient autonomy are often included. However, law courses for health professionals often

direct little attention to the substance and analytical approach of the law and give scant attention to physicians’ attitudes toward the law and

toward legal risk. One result is that “physicians

may unrealistically expect more certainty from

the law than they do from medical science” (84).

For physicians currently in practice, the main

source of information about the law is advice from

hospital lawyers and risk managers. Other sources

include articles in medical journals and legal advice columns, and “throw-away” journals that frequently contain articles highlighting concerns

about malpractice. Although these are potentially

valuable teachers, each has been found to contain occasional errors or biases that misinform

and mislead (84). Other problems have resulted

because “many lawyers advising . . . hospitals . . .

lack experience and training in health law and

have little familiarity with either medical practice

or hospital procedures” (17).

A potentially important source of information

about the law is continuing education; currently,

however, few continuing education courses devote much attention to legal aspects of medicine.

One exception is the American Heart Association’s

(AHA) course to recertify physicians in CPR. The

handbook for this course includes advice concerning decisions to resuscitate and when resuscitation efforts should be terminated (84).

The lay press and media also provide health

professionals information about legal and ethical

matters. However, news coverage provides snapshots rather than a developmental view of events.

For example, there was much publicity surrounding the murder indictment of two California physicians who discontinued a patient’s life-sustaining

7However, some observers believe that the AHA recommendations are overly consecrative and so based on concerns about litigation that they are at odds with actual clinical practice. Discrepancies between legal advice and clinical practice may intensify physician

uncertainty and cynicism about the law (84).
370 ● Life-Sustaining Technologies and the Elderly

treatment. But, the fact that the doctors were eventually exonerated received little attention. One result was a subsequent case involving physicians

who refused to disconnect a ventilator from a

braindead patient, even though this procedure

was expressly permitted by California law (84).

Decision Analysis

The ability to synthesize and interpret the immense amount of information pertinent to complex clinical decisions and to select from among

the many potential treatments is extremely difficult, and it is made ever more difficult as the

knowledge base grows. New techniques collectively referred to as “decision analysis)” “medical

decisionmaking)” or “clinical decisionmaking” are

being developed to help systematize decisionmaking processes and, in particular, to treat objectively

the persistent element of uncertainty (42,150).

Most proponents of these methods do not claim

that this kind of analysis can solve difficult clinical decisions, but rather that physicians who

understand and appreciate statistical probability,

uncertainty, risk, and error can learn to approach

clinical decisions with greater clarity, objectivity,

and prognostic accuracy.

Decision analysis methods are quantitative; they

may use computers (as well as computerized databases) and sophisticated mathematics, but also accommodate issues of ethical values and cost. 8

The emphasis is on learning to structure complex

decision problems, evaluate data, and develop

strategies for reaching diagnostic or treatment decisions. “Learning to think scientifically often involves replacing common-sense views with more

rigorous analysis” (55). Theoretically, at least, a

physician applying decision analysis methods

would be more careful than to think, “If I put this

patient on a mechanical ventilator, he will probably die anyway.” Rather, a specific statistical probability would be computed, and its meaning in

relation to an individual patient understood. However, most proponents of these mathematical

models insist they are not yet ready for direct clin6A survey of members of the Society for Medical Decision Making found consensus that the following topics were essential for

inclusion in introductory decision analysis courses for physicians:

Bayes’ theorem, decision trees, 2 x 2 tables, sensitivity and specificity, utility, and ROC (“receiver operating characteristics”) analysis (57).

ical application—and many believe they never will

substitute for a physician’s clinical judgment. The

methods are not intended to be applied in cookbook fashion that could permit physicians to

‘(stumble into counter-intuitive traps” (109).

Since the late 1970s, research and training in

decision analysis methods have all expanded rapidly. Courses have been introduced into the curricula of some medical schools, postgraduate training, and continuing medical education. At this

early point, the extent and effect on patient care

remain impossible to evaluate because what is

taught in different institutions varies greatly and

because much of this instruction is informal (56),

Technology-Specific Content

Much of the essential expertise associated with

the delivery of life-sustaining technologies to the

elderly is specific to the particular technology being used. Physicians must know the indications

and contraindications for the available technologies so that they may offer appropriate treatment; they must also be able to recognize and treat

complications. Nurses and other personnel must

know how to apply the technology and assess patient response. Although the basic principles of

technology-specific expertise are the same regardless of the patient’s age, the application of these

principles is often more difficult with elderly patients than with other adults because of their more

complex patterns of illness. The presence of multiple diseases, including mental disorders, makes

the delivery of effective overall treatment an elusive goal if personnel lack the knowledge that permits anticipation, recognition, and response to the

special characteristics of many elderly patients.

For example, effective use of dialysis for elderly

patients requires knowledge of how certain coexisting chronic diseases may affect this treatment.

Vigorous hemodialysis, desirable because of increased efficiency and shorter treatment times,

does not seem to be tolerated well by patients with

impaired cardiovascular function, who require

gentler treatments over longer periods of time.

The use of large fluid volumes for peritoneal dialysis (desirable because of increased efficiency) is

associated with further compromise of lung function in dialysis patients who also have chronic ob-
Ch. 10—Manpower and Training ● 371

structive pulmonary disease (COPD). And dialysis patients with diabetes may need to have their

insulin dosages adjusted; in fact, dosages of many

common drugs must be modified for dialysis patients (46,100). Another example of technologyspecific expertise is that needed to treat a COPD

patient on a ventilator who requires nutritional

support. To prevent a buildup of carbon dioxide

in the bloodstream, which would exacerbate the

patient’s respiratory condition, the diet should

avoid excess glucose (7).

Technology-specific information is very complex

and in some fields technological development is

very rapid (see app. C, “Future Developments in

Life-Sustaining Technologies”). It cannot be assumed that all caregivers know what they should,

especially when the technological intervention is

for an elderly patient. Besides the limitations o f

some individual caregivers, there are serious limits

to the current knowledge base. Dialysis works,

but experts do not understand why (see ch. 7).

Caregivers may know well how to perform cardiopulmonary resuscitation and how to administer

mechanical ventilation, but the knowledge base

does not permit accurate prediction of the outcome in individual cases.

INTERDISCIPLINARY COLLABORATION

Competent clinical decisionmaking regarding

the use of life-sustaining technologies frequently

requires the collective expertise of many professions and specialties. Assuming that all the necessary subjects have been mastered, the remaining

challenge is to bring this expertise together on

behalf of a particular patient. The mechanism can

be formal, as in the case of a “nutrition support

team” or an “infection control team)” or informal,

but it always requires combinations of resources

(including time) and skills. Effective combinations

are difficult to establish, but without them, interdisciplinary care may be disjointed and inefficient

rather than coordinated and creative.

Conflicting Perspectives and Goals

Good clinical decisionmaking involves setting

treatment goals that are appropriate, realistic, and

acceptable to the key parties involved. Depending on their particular profession or specialty,

caregivers may have divergent frames of reference and sometimes different treatment goals that

can lead to different assessments of the patient

and different evaluations of the treatment options

(151). One component of decisionmaking skill,

therefore, is the ability to understand and appreciate all pertinent perspectives and, sometimes, to

resolve conflicts among the various participants

in the decisionmaking process. An especially difficult type of conflict would be a conflict between

a physician (or caregiving team) and a patient (or

the patient surrogate). Other conflicts might arise

when a physician or other caregiver is given

“orders” to administer a treatment he or she believes is inappropriate. This is frequently the case

when, for example, a resident is expected to carry

out decisions made by the attending physician

(154). Traditionally, nurses carried out physicians’

orders without being involved in the decision. Increasingly, nurses seek more responsibility and

the role of patient advocate, arguing that they may

know better than physicians what patients want

or what is best for patients (112). Also, the changing legal climate in which nonphysicians are increasingly held accountable compels nurses and

others to question orders with which they dis -

agree (44). Disagreements among caregivers may

indicate that the patient is at the mercy of a poorly

reasoned decision. At best, such conflicts are bad

for caregivers’ morale.

Medical Perspective

.,. where the physician’s work does not afford

(at least in some symbolic sense) the possibility

of saving a life or restoring health through skillful practice or losing them through ineptness, the

physician lacks some of the essence of physicianhood (24).

Despite significant changes in medical schools

and in the social environment since the quote

above was published in 1961, the comment still

reflects medical culture today. The medical model

(which is the paradigm for most health education)

sets up physician and patient as doer and receiver;

63-216 0 - 87 - 10 : QL 3
372 • Life-Sustaining Technologies and the Elderly

the physician has the responsibility to do something and the patient has the expectation that

something will be done (137). The traits, habits,

and mental sets characteristically nurtured by

medical education perpetuate a perspective that

tends to “medicalize” problems and view all problems, including death, as treatalde.

. . . death is construed as a biosystem going awry.

The fatal illness is out of the patient control and

is operating as a tangible process, which becomes

the target of treatment. In result, death becomes

separate from the person who is dying. This human condition is inadvertently taken out of the

realm of social meaning and put in a framework

of normal versus pathological functioning. Here,

death becomes viewed as a chronic resistance to

life and is logically met with increased technological management (137).

In the case of patients who are critically or terminally ill, “physicians may adopt a hostile stance

by retreating to technology” (114).

I bent every effort to make sure that at the moment of death my patient had a normal white

count, hemoglobin, sodium, potassium, chloride,

carbon dioxide, and in fact to make sure that

everything I could measure was normal. Only in

that way could I convince myself that I had tried,

that I had done enough. My patients, when they

died, were the least sick dead patients one could

imagine. This was really a refusal to face the death

of a patient and a retreat to scientism, to technology, and was a means of convincing myself that

I was performing important work in preventing

death. It convinced me, against the facts, that I

retained control (152).

Critical Care. -Critical and intensive care medicine exemplify the traditional goals of medicine,

i.e., the cure of acute illness and the prolongation

of life. The treatments of choice are generally

treatments associated with the best case-fatality

rates or other measure of longevity. Critical or

intensive care personnel routinely use sophisticated technology and equipment to diagnose, monitor, and maintain function in a patient’s acutely

failing organ systems. They support organ function and maintain equilibrium during life-threatening events to give the patient’s own recuperative

abilities or definitive medical therapy an opportunity to act.

The exigencies and narrowly circumscribed

goals of critical care medicine may distort the perspective of physicians during the decisionmaking

process. Observers have alluded to the potential

for ICU patients to be viewed as biological systems to which technologies may be applied. One

intensivist has commented:

Much of current medical practice operates tangentially to the goal of a happy and productive

life. . . . Measurements and monitoring are frequently pursued as ends in themselves. Patients

are transformed into physiological preparations

as the norm of practice (128).

If the principal goal of critical care medicine is

to maintain biological function, then the decisionmaking process may be reduced to a determination of whether technological intervention can

improve or stabilize the parameters of organ function. The database selected for decisionmaking

will consist of information related to this determination and may omit consideration of overall

probability of survival, return of function, or quality of life. Technologies may be applied because

they are available and not because they will improve outcome.

Typically, critical care is provided within an ICU,

a stressful environment where time is always a

factor, decisions are always important, many patients are too ill to participate in decisionmaking,

and where nurses have a particularly important

role. ICU physicians and staff treat the urgent,

acute, and often complex problems of critically

ill patients; this causes their patterns of practice

to differ from those of their counterparts working on a general medical or surgical ward or in

an outpatient facility. The NIH Consensus Report

on Critical Care discussed this distinction with respect to nursing care:

Nursing care in the ICU has an emphasis opposite from such care on general services; The effectiveness of the ICU nurse is his/her knowledge

of all the details necessary to care for one or two

patients while the effectiveness of the general

service nurse rests upon his or her ability to direct care delivery by others to numerous patients

(115).

The potential benefit from this type of specialization and division of labor is that caregivers may
Ch. 10–Manpower and Training • 373

be able to use life-sustaining technologies more

skillfully and treat acute illnesses more effectively

and efficiently. Physicians who spend a great deal

of time in the ICU may have a better understanding of both patients’ experience in the ICU and

the potential outcomes of intensive care (26). The

potential risk is that the narrow approach that

underlies this style of practice may adversely affect the decisionmaking processes of ICU personnel by distorting their perspective on the patient,

that is, by causing them to look primarily at the

patient’s acute illnesses in terms of potential reversibility and not at the patient’s overall condition in terms of potential function and quality of

life (7).

Geriatrics.–Because chronic illness and physiological decline cannot be cured and will remain

when an acute situation is resolved, geriatricians

have argued that traditional medical goals are not

appropriate for their patients. Geriatricians stress

that when the eradication of illness is not possible, improvement of function and quality of life

(as perceived by the patient) should be the guiding principles (67,75,123,124,129).

Familiarity with chronic illness may make geriatricians particularly aware of the fact that lifesustaining technologies sometimes increase the

average prevalence and duration of morbidity.

Antibiotics, ventilators, dialysis, nutritional support, and other life-sustaining technologies permit many patients to survive acute episodes, but

survival is not always accompanied by improved

functioning and quality of life. A patient with previously asymptomatic atherosclerosis may, as a

result of intensive resuscitative efforts, survive

what otherwise would have been a fatal heart attack; but he or she may suffer from chronic sequelae such as congestive heart failure and may

live long enough to develop other complications

related to atherosclerosis, such as a stroke (7).

Although there are no systematic data regarding either how geriatricians make treatment decisions or the particular decisions they make, it

is reasonable to expect that they (and primary care

physicians in general) would tend to behave differently than physicians who specialize in critical

care. In particular, one might expect that geriatricians would be more likely to make decisions

aimed at improving outcome in terms of function

and quality of life, as opposed to mere survival.

Because acceptable levels of functioning and quality of life are highly personal and subjective judgments, decisions based on these goals require that

physicians be especially sensitive to and respectful of patients’ assessments of their current or

expected future condition and their wishes regarding treatment.

Some people believe that, as primary care physicians, geriatricians might potentially improve

decisionmaking about admission to the ICU; or,

as consultants to other physicians, might improve

care within the ICU. A geriatrician might be able

to provide a more complete database for decisionmaking; a geriatrician might also be more skilled

than other physicians at recognizing and interpreting unusual clinical presentations and more

experienced in the evaluation and management

of cognitive and affective changes frequently seen

in elderly patients. As primary care physicians,

geriatricians would probably be better acquainted

with patient value systems and personal preferences than intensivists who see patients for the

first time in the ICU (7).

Nursing Perspective

To a large extent, nurses use their skills to carry

out medical treatment prescribed by physicians.

However, nurses argue, there is a distinct ‘(nursing database” that informs nurses’ perspective on

a patient and that is essential to good care (66,

86,87). This database is comprised of information

about the patient’s physical signs and symptoms;

physical, cognitive, and emotional functioning; and

self-care abilities.

Functional assessment is a central component

in many nursing diagnostic categories: among the

nursing diagnoses approved by the National Conference on Classification of Nursing Diagnoses,

for example, are activity intolerance, dysfunctional

grieving, and impaired mobility (66,86,87,117).

These diagnostic categories are used to identify

problems that are amenable to nursing management. For example, nurses plan and implement

interventions to alleviate certain types of psychological and physical discomfort and dysfunction

and to prevent iatrogenic complications. In the
374 ● Life-Sustaining Technologies and the Elderly

acute or intensive care setting, nurses may independently institute measures to help patients feed

themselves or to alleviate confusion by regularly

orienting them to time, place, and person.

In the critical care setting, nurses with geriatric experience and training may be better able

than other nurses to fully address functional and

psychological problems in elderly patients. Some

geriatric assessment units that employ physicians

and nurses with geriatric experience to treat patients in acute care hospital wards have been able

to improve the functional status of certain patients

at discharge; as a consequence, some of these patients have not had to be discharged to other institutional settings. Nurses with geriatric expertise might also be able to contribute to improved

outcomes in the intensive care setting (7).

Patient Goals

In many cases, patients have the same goals as

physicians and willingly consent to therapy designed to achieve these shared ends; some patients

even prefer to defer to their physician and allow

him or her to make decisions in their best interest. Occasionally, however, the patient and physician disagree as to what is in the patient’s best

interest. Under the informed consent doctrine (see

ch. 3), the patient’s opinion is definitive in such

cases.

The integration of principles of patient autonomy into the clinical decisionmaking process has

not been fully accepted by the medical profession.

Some physician authors have argued against

patient participation in clinical decisionmaking,

claiming that patients lack the experience and

professional knowledge needed for making informed treatment decisions, and that it is unethical for physicians to allow patients to make “irrational” choices (i.e., choices different from those

obtained using solely medical criteria) (18,19,48,

95). Some studies have indicated that decisions

about treatment often reflect physician authority rather than patient wishes, and that physicians

do not always consider patient wishes when selecting treatment (18,25,95). Because emphasis on

function and quality of life are basic elements of

geriatric training, health professionals with this

approach may be better able to promote patient

autonomy and patient satisfaction than physicians

with other orientations (7).

Effective Teamwork

The various professionals who are involved in

the care of a particular patient maybe an ad hoc

assemblage of individuals or they may be organized into a true health care team striving for comprehensive, appropriate, and coordinated care.

When teams function properly, they can have

many beneficial effects on patient care. Treatment

selection decisions can be based on a more comprehensive database than might otherwise be possible. Treatment plans of physicians, nurses, and

allied health personnel may be coordinated to ensure that all necessary treatments are delivered

and that caregivers do not duplicate each other’s

efforts or work at cross-purposes. A recent study

of more than 5,000 patients in 13 hospitals found

that interaction and communication between physicians and nurses in the ICU were related to significantly reduced mortality (88).

Health care teams have no uniform composition or structure. The numbers and mix of caregivers participating in the delivery of any technology varies from one setting to another and,

to a considerable extent, within settings of the

same type (74). Further, the specific roles, responsibilities, and relationships of various professionals

is different in different institutions. In practice,

“team care” has often been invoked in instances

where “many hands” were necessary. There has

been “a lot of lip service given to the interdisciplinary approach, ” but the fact that physicians and

nurses are working together does not necessarily

mean that they constitute a real team (36).

Health care teams may have either a hierarchical or a “collegial” structure. Typically, a physician is the team leader. In part, this reflects the

physician’s traditional status within the health care

system. Also, many physicians are reluctant to delegate and share responsibility because they ultimately bear major legal responsibility for the patient’s care. Particularly in geriatrics, according

to the Director of NIA, a collegial team is much

preferred to a hierarchical one (153). The leader

of a collegial team is “the first among equals.”
Ch. 10—Manpower and Training ● 375

Most health care teams, whether focused on geriatrics or critical care, make use of interdisciplinary assessments. When a new patient is referred

to the team, each member examines and assesses

the patient with respect to his or her particular

field of expertise. Initial assessments are generally followed by treatment planning conferences

at which the team attempts to reach a consensus

regarding what treatments and interventions are

most appropriate for the patient. The benefits of

this approach for some patients have been demonstrated. In one study of elderly patients in a

VA hospital, patients who were randomly assigned

to the geriatric assessment unit subsequently had

lower rates of mortality and of admission to nursing homes than the control group (132).

Each member of an interdisciplinary health care

team can provide valuable information for determining what treatment will be offered to patients.

Some of this information will be derived from the

team member’s technology-specific expertise.

Other information will be derived from technology-independent expertise.

No systematic evaluations of the roles that nonphysicians play in treatment decisions have been

conducted; narrative accounts of team conferences indicate that nonphysician professionals are

present at decisionmaking conferences but do not

describe the nature or extent of their contribution. Since physicians bear legal and professional

responsibility for most of the decisions that are

made, it is likely that they remain the controlling

influence; however, other members of the team

can participate in decisions regarding the selection and administration of life-sustaining technologies and even make certain types of decisions

independently.

In addition to benefiting the patient, an effective team is valuable as an educational milieu for

its members and is said to contribute to their morale (71). Critical care and geriatric specialists, psychiatrists, neurologists, and pulmonary specialists,

nurses, dietitians, social workers, and others can

all share their expertise and experience and support each other through difficult intellectual and

ethical questions. Interdisciplinary team conferences can also be used as a method for training

professionals to work in a team.

The potential pitfall of team care is that teams

can be inefficient. In medical emergencies, a team

may provide care (e.g., crash team), but there is

no time for team assessment or decisionmaking.

More generally, if the contribution of each participant is not clear, team planning conferences

may become bogged down with the presentation

of redundant information, Teams that do not establish clear lines of decisionmaking authority and

attempt to make decisions by consensus may have

difficulty making decisions. Teams with a large

number of members or poorly defined member

roles are particularly susceptible to these problems (133).

It has become almost a watch word of GAUs

[Geriatric Assessment Units] to talk about team

care, but less has been said about the size and

interdisciplinary composition of the core team.

Teams may be very expensive and potentially inefficient. The solution appears to lie in using as

small a core team as possible and mobilizing a variety of adjunctive specialists when appropriate

(133).

Despite general agreement that teamwork is essential to good geriatric care (and claims that teamwork is one of the distinguishing features of geriatrics), training in team care has been inadequate.

The importance of such training has been stressed

by academic geriatricians who point out that acting as a collaborator (instead of “the boss”) is not

a role that comes easy for many physicians; it is

something they must be taught to do (37). Lack

of training in team care has had the result that

the way teams frequently work is like “Who’s in

charge?” and “What’s the mission?” (97).
376 ● Life-Sustaining Technologies and the Elderly

THE IMPACT OF FEDERAL PAYMENT POLICIES ON THE

EMPLOYMENT AND TRAINING OF HEALTH PROFESSIONALS

General efforts to contain health care costs and

recent changes in Medicare’s hospital payment policies were described in chapter 2. So far, there

are only piecemeal data and anecdotes to describe

how these changes have affected the use of lifesustaining technologies or the supply and training of health professionals.9 The changes that

are apparent suggest the powerful ability of the

Federal Government to influence through reimbursement policy—intentionally or not–where

and by whom life-sustaining technologies will be

delivered as well as opportunities for related clinical training.

Employment Patterns and

Personnel Needs

Hospitals

Data from the American Hospital Association’s

annual surveys document sharp reductions in total

hospital employment from 1982 to 1985 (9) along

with even sharper declines in hospital occupancy

rates10 (146). Overall, the number of full-timeequivalent health workers employed in hospitals

(over 3.8 million in 1982) declined by 1 percent

from December 1982 to December 1983, by over

2 percent in 1984, and again by over 2 percent

in 1985 (9). Experiencing some of the sharpest

drops in employment were licensed practical

nurses and ancillary nursing personnel, dietitians,

and dietetic technicians.

In general, changes in hospital staffing patterns

reflect the increase in average “intensity of care”

that has occurred over the past several years. Employment of less-trained hospital personnel has

been reduced, while highly trained personnel have

experienced substantial gains in employment nationwide. Registered nurses, pharmacists and pharmacy technicians, social workers, and, especially,

qt takes about 3 years for the effects of changes in reimbursement policy to be documented in data because of variations in the

start of hospitals’ fiscal years (when they start to use the new system) and time needed for the Health Care Financing Administration

(HCFA) or others to collect and analyze the data (73).

‘[’Labor costs constitute roughly two-thirds of all hospital costs

(90).

respiratory therapists are examples (146). There

are, however, important variations across occupations, types of hospitals, and geographic areas.

As pressure mounts to release patients quickly

(i.e., either to discharge them from the hospital

or to transfer them to less intensive care), the patients who must remain in the hospital and in the

ICU tend to be, on average, sicker. They require

more nursing care, more physician services, and

more technology (32). In community hospitals of

all sizes, the staff-to-patient ratio increased between 1983 and 1984 (146).

Cost-containment pressures and demographic

changes are creating a hospitalized elderly population that is not only sicker, but also, on average,

older than before, Health Care Financing Administration (HCFA) data for 1981 and 1984 reveal

higher proportions of patients in all age groups

over 75 (39) and, among all hospitalized Medicare

patients, an overall average increase in age of

about 6 months (125). This finding highlights the

need to upgrade geriatric expertise among hospital staff generally.

Changes in the relative numbers of different

kinds of professionals within the hospital bring

changes in roles and responsibilities. Because of

overlap in the training of personnel at different

levels, more highly trained personnel are frequently able to perform many of the tasks of lower

level personnel. The reverse, however, is not true.

Consequently, some lower level personnel may

be seen as dispensable, and the more highly

trained personnel who are retained may be required to assume new or additional roles within

and/or outside their own specialty. When the ICU

census is low, for example, it is common practice

(and “can be a source of disillusionment, frustration, and increased stress”) to “pull” critical care

nurses from the ICU and reassign them to other

units (29).

The extent to which changes in hospital staffing patterns have reduced cost and improved efficiency or, alternatively, reduced the quality or

availability of care is not known; the potential exists, however, for all these effects. Also, shifts in
Ch. 10—Manpower and Training ● 377

roles and responsibilities from one profession to

another are likely to necessitate new or additional

in-service training. At the same time, reduction

in the numbers of personnel and incentives for

increased productivity leave less time and fewer

resources to do this training. Unstable hospital

staffing levels and patterns and changed responsibilities also create interdisciplinary competition” and fears of layoff or unemployment that

may affect staff morale.

Nursing Homes

The growth of the elderly population, especially

the population over age 85, and pressures for early

hospital discharge have dramatically increased the

need for beds in skilled nursing facilities (SNFs).

It is projected that the total need for nursing home

beds (in all kinds of facilities) will soon double,

from 1.55 million to 3 million. This includes expected growth in SNF beds of 8 percent between

1986 and 1987 alone (30). Obviously, more occupied nursing home beds create the need for

more nursing home personnel.

Another change with important implications for

both personnel and training is that some nursing

homes are beginning to provide a higher level of

care than they provided in the past. The use of

life-sustaining technologies that were already available in a few SNFs (e.g., total parenteral nutrition

and dialysis) is expanding, and other technologies

that are new within this setting (e.g., mechanical

ventilation) are being introduced. At least one nationally known proprietary chain reports that it

is increasing the size of its nursing home staff and

training employees to provide higher levels of patient care (126).

Personnel and training needs in nursing homes

are closely tied to Medicare decisions about which

technologies to cover in the nursing home setting

and the extent to which the level of reimbursement gives nursing homes sufficient financial incentives to make this care available. Some observers

believe, for example, that Medicare payment for

‘]Such changes also fuel interprofessional rivalries when one

profession is viewed as “encroaching” on the professional territory

of another or where there exists “an environment of insecurity that

has forced [some professions] to scurry around” in a frantic effort

to justify their existence to hospital administrators (5 l),

total parenteral nutrition (TPN) is too low (43). In

general, Medicare criteria for payment of life-sustaining treatments outside the hospital are complex, restrictive, and subject to variation in interpretation by claims reviewers (91).

To the extent that Medicare fails to cover or

provides inadequate coverage for nursing home

patients requiring life-sustaining technologies,

Medicaid policies will become increasingly important. Under Medicaid, States have considerable

influence over what technologies will be covered

and, thus, what personnel will be needed in nursing homes. To accommodate patients dependent

on life-sustaining technologies, a few States have

augmented skilled nursing care with a new category of “very skilled nursing care.” For example,

Illinois’ public Aid Code has been amended to include coverage for “exceptional medical care, ” defined as follows:

. . . the level of medical care required by persons

who are medically stable for discharge from a hospital but who require acute intensity hospital level

care for physician, nurse and ancillary specialist

services.

—Illinois Public Aid Code, Sec. 5-I.1

It is generally acknowledged that many nursing homes are not adequately staffed to provide

complex services. To care for greater numbers

of patients who need complex services, nursing

homes would require higher staff-to-resident ratios and staff training (3 I). Provision of more complex services in nursing homes also has implications for personnel who are not based in the

nursing home (e.g., respiratory therapists and

nephrology social workers) but who will increasingly be asked to care for patients in this setting,

The extent to which hospital personnel may be

moving into nursing homes is not known, but this

may be an important factor as hospitals and nursing homes establish closer ties,

Home Health Care

The effects of cost-containment on changing employment patterns and requirements are perhaps

nowhere more apparent than in home care. Industry experts predict the high-technology segment of home care will grow very rapidly and

dramatically (58,91). As both investor-owned com-
378 ● Life-Sustaining Technologies and the Elderly

panics and hospitals expand into the home care

market, there will be a significant impact on the

use of and need for highly skilled personnel in

the home.

Historically, registered nurses, licensed practical nurses, and home health aides, through their

participation in public health agencies and visiting nurse associations, were the central figures

in home health care programs. Today, nurses are

still crucial, but other professionals and specialists,

including respiratory therapists and intravenous

therapy nurses, have been added to the home

health care team. Also, for those health professionals who are accustomed to working in home

care, there are new responsibilities and training

needs associated with caring for patients who are

often more acutely ill and who require high-technology care.

Clinical knowledge generally transfers well from

the hospital to other settings, but in the home some

special problems arise which health professionals

must be prepared to handle. For example, supplies and equipment may not be readily available

in the home, or there may be problems maintaining sterile conditions. These are exigencies that

should be addressed in professional training or

for which some type of provision must be made

in practice. otherwise, the quality of patient care

is likely to suffer. The most important factors are

probably lack of standards (102); lack of supervision; and lack of interaction with colleagues and

advisors who would provide stimulation, informal peer review, and consultation.

Medicare coverage of life-sustaining technologies and the personnel who can provide them

in the home is restricted and complex. To be eligible for any home health care benefits under Medicare, an individual must be homebound, must be

under the care of a physician, and must require

“intermittent” (and not full-time) skilled nursing,

physical therapy, or speech therapy. For some

technologies, Medicare regulations have not been

issued; some regulations have been repeatedly

modified to meet changes in technology; others

are open to different interpretations by individual claims examiners.

Another problem is the uneven treatment by

Medicare of different technologies in the home.

Allowed charges for dialysis and the personnel

who provide it, for example, are at least 80 percent reimbursed by Medicare; mechanical ventilation is similarly covered, but respiratory therapists are not; and intravenous antibiotic therapy

is specifically excluded from Medicare home

health benefits. Nursing services associated with

intravenous antibiotic treatment could be covered,

but this technology often requires more than intermittent nursing care (74). TPN and enteral nutrition can be covered in the home under the Medicare Part B prosthetic device benefit, but not

under the Part A home health benefit. Thus, an

approved home health agency that offers these

treatments ceases to function as a home health

agency; rather, it is seen by HCFA as a prosthesis

supplier and, therefore, can receive no additional

reimbursement for personnel.

Medicare reimbursement levels for technologies

in the home are related closely to charges for the

devices and equipment and do not include allowances for the nonphysician personnel whose services are necessary components of the technology

(80). This situation may affect the quality of care

patients receive in the home because home health

agencies and durable medical equipment companies are encouraged to reduce either the number of visits to the patient’s home or the skill level

of caregivers.

Clinical Training

All of the professions involved in the implementation of life-sustaining technologies require supervised clinical experience, ranging from informal on-the-job training for certain technicians to

multiyear clinical residencies for physicians. Traditionally, in medicine, nursing, and the allied health

professions, acute care hospitals have been the

main site for clinical training.

Medicare, from its inception, has provided support for graduate education for physicians, diploma nursing schools operated by hospitals, and certain allied health programs operated by hospitals.

Through payments for patient care and payments

explicitly for education, Medicare is the single most

important source of support for health professions education in hospitals. HCFA estimates that

Medicare reimbursement for patient care alone
Ch. 10—Manpower and Training ● 379

provides approximately one-third of all support

for health professions education in hospitals (144).

Thus, Medicare payment policies have important

effects on what training is available now and what

will be available in the future.

In 1974, Medicare established annual cost limits

on reimbursement for certain routine hospital

costs. Because of recognition that routine hospital costs were higher in teaching hospitals, an exception was made to exclude the extra (educationrelated) costs from Medicare’s cost limits. Beginning in July 1979 and 1980, respectively, the direct and then the indirect costs of education 12

were allowed to “pass through” the cost limits.

Under Medicare’s Part A prospective payment

system for hospitals mandated by the Social Security Amendments of 1983 (Public Law 98-21), direct and indirect costs of education remain passthrough items. The President’s fiscal year 1986

budget, however, included proposals: 1) to freeze

Medicare payment for the direct costs of medical

education at the level received in the reporting

year ending in 1984, and end all new funding for

Title VII and Title VIII programs; and 2) to cut

Medicare payment for the indirect costs by 50 percent and change the basis on which costs are computed. A near-freeze (an increase for inflation plus

1 percent) was implemented through administrative authority and has been in effect since July

1985. The fiscal year 1986 budget reconciliation

act (Public Law 99-272 or “COBRA”) omitted the

freeze on direct costs and reduced reimbursement

for indirect costs by approximately one-third

rather than by one-half. The President’s original

budget proposals for 1987 sought to end payment

of all direct costs of training except the salaries

of interns and residents; this would eliminate all

Medicare support for training in nursing and in

allied health, as well as all overhead costs associated with training of residents. In its final form,

IWhe direct costs of health professions education include salaries for faculty, support staff, and residents; conference and classroom space; additional equipment and supplies necessitated by teaching activities. The inclirect costs of medical education (a proxy for

the added complexity of care in teaching hospitals) include reduced

productivity in patient service departments, more complex hospital

management, and the higher utilization of ser~’ices and tests performed in teaching hospitals (14-$).

the President’s budget still sought to cut the indirect costs (108).

Unless alternative funding can be found, reductions in Medicare support will substantially reduce the ability of hospitals to maintain current

levels, diversity, and quality of education and training. Although such reductions are one way to reduce the projected overall physician surplus, the

specialties and professions in which there are

present shortages will also be affected and, indeed, might be hit the hardest. Specialties and

professions that generate relatively little in patient

care fees (e.g., family practice and some allied

health programs) would become much harder to

subsidize out of reduced payments (144); and new

programs, including geriatrics, are more likely

than well-established ones to be targeted (108).

Public Law 99-272 exempts geriatric programs

from the reimbursement limits placed on graduate medical education in other specialties. Generally, Medicare reimbursement to hospitals for direct costs of medical education is limited to a

maximum of 5 years per trainee (the minimum

number of years of formal training to satisfy specialty requirements for initial board eligibility, plus

1 year). Since fellows in geriatrics must complete

a residency in a primary specialty (internal medicine, family practice, or psychiatry) before commencing geriatric training, it appeared that geriatric training was categorically disqualified for

Medicare support. The exception for geriatrics

extends the “initial residency period” that is eligible for Medicare funds for up to 2 years. While

such special attention to geriatrics is noteworthy,

the exemption does not actually change the reimbursement for geriatrics; it protects the reimbursement that was already available. ”

Medicare’s prospective payment system also affects in-hospital training of physicians, nurses, and

‘3Hospital administrators and others who control decisions about

how many training positions are allotted to each specialt} hale strong

incentives to fat’or those specialties for which Xledicare reimbursement covers the actual costs of training, Inclusion in the reinlbursement formula of a measure of hours worked in the hospital results

in relati\’el}’ poor reimbursement for geriatric trainees, u’ho mav

spend much of their time in other facilities. Thus, despite the exemption for geriatric fellottships, geriatric training slots are still

likely to be pm-ceiled as financial liabilities in the total hospital training

program,
380 • Life-Sustaining Technologies and the Elderly

allied health personnel. Hospitals and departments

that have a tradition of subsidizing training

through payments for patient care, particularly

nonprofit hospitals, may find this unfeasible under prospective payment and the changes occurring in Medicaid and private health insurance. Prospective payment provides hospitals incentives to

reduce all costs, especially affecting those training programs in which educational costs cannot

be separately identified for direct support. Thus,

hospitals are now actively reviewing their training programs in relation to productivity and efficiency of operations (74).

The Bureau of Health Professions of the Health

Resources and Services Administration conducted

a pilot study to assess the impact of Medicare’s

prospective payment system on clinical education

programs in medicine, nursing, and other health

professions (64). Site visits to hospitals in four

geographic locations revealed decreased patient

census, shorter lengths of stay, sicker patient populations, and increased emphasis on staff productivity. One result is increased competition among

the professions for clinical access in hospitals. Personnel employed by the hospitals visited were

found to have less time to spend teaching or supervising students. Hospitals were beginning to

require payment for staff time spent in teaching

activities, or were reducing their involvement in

teaching programs. Clinical programs in all the

professions reported problems in providing the

appropriate number and mix of patients with

which students can obtain the necessary experience to complete their training. Shortened lengths

of stay may also preclude the kind of comprehensive workup and monitoring that is frequently important in training.

In a 1985 survey, 79 percent of the more than

2,500 responding allied health education programs

said that Medicare’s prospective payment system

for hospitals had had a “strong” impact on their

clinical education program. The majority of program directors said the effects of the payment

system were mixed, but 14 percent said the effects

were entirely negative. Seventeen percent of the

program directors reported that their clinical education programs were inactive or closed (10).

Efforts are underway to expand education and

training into alternate clinical sites. However,

financing is problematic because third-party payers have not traditionally covered costs related

to education in nonhospital sites. Also, increased

competition has constrained the willingness of

organized outpatient systems like health maintenance organizations and home care agencies to

incur these costs.

EVOLVING CREDENTIALS

Virtually all commentators agree that licensure

and certification are needed to set standards for

health care and to protect the life and safety of

patients. There are, however, continuing controversies over the desirable degree of regulation,

what should be regulated, and the frequency of

licensure, certification, and accreditation review,

Licensing is governed by the States, certification

and accreditation by the professional agencies.

Public programs, including Medicare, often adopt

these standards as a basis for reimbursement (74).

All 50 States license physicians, registered

nurses, practical nurses, and physical therapists.

Some States also license nurse practitioners, social workers, and occupational, speech, and respiratory therapists. Certification is granted by

professional boards and associations and serves

to identify those practitioners who have met standards of special competence in a particular specialty area, Certification generally is not a requirement to practice; however, many hospitals use

certification status as a standard in hiring or in

granting staff privileges.

The objectives of credentialing health professionals extend beyond quality assurance. These

objectives are diverse and may lead to disagreements about the need for certain credentials, including those now available to physicians in geriatrics, critical care, and some allied health

occupations. Frequently, a profession seeks certification and licensure to “professionalize” itself

and set entry barriers, to maintain and enhance

income and prestige (74). Health care institutions,

including hospitals, nursing homes, and home care
Ch. 10—Manpower and Training . 381

companies realize that hiring professionals with

special credentials, besides presumably assuring

or improving quality of care, may offer economic

advantages in the increasingly competitive and litigious health care environment. Such economic

advantages, however, must be weighed against

the higher costs associated with employing people with special credentials. Information presented

below on the current status of credentials for

health professionals involved in the care of lifethreatened elderly persons suggests how rapidly

change is occurring.

Credentials in Geriatric Medicine

and Nursing

There has been much debate about whether or

not geriatrics constitutes a distinct body of knowledge; where geriatrics belongs (e.g., as its own

specialty, within internal medicine, or within family practice); and whether or not a distinct credential should be created to recognize competence

in this field. In the absence of a credentialing system for geriatrics, there has been no way to identify physicians who have had geriatric training,

no assurance that the geriatric training obtained

in different institutions meets comparable standards, and no way to reliably estimate the current

supply of geriatricians. Also, without a geriatric

credential, the developing body of geriatric knowledge can be rather easily dismissed by the uninitiated or, perhaps worse, claimed by the opportunist.

The Institute of Medicine’s 1978 study of geriatric education (77) recommended against creation of specialty certification in geriatrics. Agreeing with the official position of the American

Geriatrics Society, the Institute of Medicine concluded that geriatric education should be mainstreamed and that the care of the aged should

be the responsibility of appropriately trained primary care physicians. The Institute further stated

that creation of a new medical specialty in geriatrics could draw attention, energy, and resources

from nursing and the other health professions involved in caring for the elderly, suggesting a “medical solution to a largely social problem.” The Association of American Medical Colleges and the

Federated Council for Internal Medicine (59) were

among the other bodies that officially opposed certification in geriatrics.

Since 1978, the science base and clinical importance of geriatric medicine have grown substantially. Recognizing this, in 1985 the American

Board of Medical Specialties authorized the American Board of Family Practice and the American

Board of Internal Medicine to offer certificates

of added qualifications in geriatrics. The two specialty boards are working together to develop a

joint examination, with plans to offer it for the

first time in spring 1988 (122). Both boards have

emphasized that in offering this certification, they

are not creating a new subspecialty of geriatrics

in family practice or internal medicine, but are

simply creating a mechanism for recognizing merit

and achievement in geriatrics.

Applicants for the certificate in geriatrics must

first be certified by the American Board of Family Practice or the American Board of Internal

Medicine. In addition, internists must either have

completed a geriatrics training program, an advanced general medicine training program with

emphasis on geriatric medicine, or have 4 years

of experience beyond their general medical training. (Internists already certified in a subspecialty

will need only 1 additional year of training. )

Specialists in family practice must also first complete approved geriatrics training. Geriatrics training programs will be evaluated and accredited by

the residency review committees for internal

medicine and family practice.

The American Nurses’ Association offers certification in 17 areas, including a generalist certificate in gerontological nursing and a certificate

for geriatric nurse practitioners. The generalist

certificate in gerontological nursing, available

since the mid-1970s, is offered to licensed registered nurses who have successfully completed a

standardized test and 2 years of clinical experience with the elderly. The geriatric nurse practitioner certificate is offered only to licensed nurse

practitioners who have a master’s degree in nursing and who have completed at least 9 months

or 1 academic year of clinical and didactic training in a program that meets American Nurses’

Association guidelines.
382 ● Life-Sustaining Technologies and the Elderly

Although certification in geriatrics has been

available to nurses for a number of years, questions remain about the level of competence these

credentials represent (53). For programs leading

to the generalist certificate, no specific didactic

or clinical training in geriatrics is required and

there is no formal system for accrediting the institutions providing the geriatric clinical experience. The focus of the generalist certificate, both

in the content of the exam questions and in the

eligibility requirements to sit for the exam, is longterm care of the elderly; competence in the care

of the acutely or critically ill elderly is not evaluated. Similarly, nurse practitioner training and

testing does not emphasize critical care nursing.

Credentials in Critical Care

Medicine and Nursing

In 1985, the American Board of Medical Specialties approved a subspecialty of critical care

medicine within each of critical care’s parent medical specialties. Physicians who are first certified

by either the American Board of Internal Medicine, Anesthesiology, Surgery, Neurological Surgery, or Pediatrics may seek certification of special competence in critical care medicine, Each

board will have its own training requirements and

separate examinations (118). In addition, the American Board of Emergency Medicine has applied

to the American Board of Medical Specialties for

approval of certification of added qualifications

in critical care for specialists in emergency medicine (111). In most medical specialties, certification in critical care will be valid for 10 years (68).

Certification in critical care nursing has been

offered by the American Association of CriticalCare Nurses’ Certification Corp. since 1975. Any

registered professional nurse with current registered nurse licensure and at least 1 year (1,750

hours) of experience practicing as a registered

nurse in the care of the critically ill is eligible to

apply. More than 23,000 registered nurses have

passed the written certification examination, earning the credential of critical care registered nurse

(CCRN) (44). This certification is recognized for

3 years, after which recertification applicants must

provide proof they have completed specified continuing education or repeat the written examination. The American Nurses’ Association has not,

to date, approved critical care as a specialty (69).

Technology-Specific Credentials

Dialysis

Nurses and technicians may be certified in

hemodialysis through the Board of Nephrology

Examiners. However, the American Nephrology

Nurses Association does not endorse that examination and is preparing a new, more comprehensive examination in nephrology. This will be pilot

tested in May 1987 and is expected to be offered

later that year to registered nurses who are

licensed in the United States and who have at least

2 years’ experience in the field of nephrology (119).

Dialysis technicians receive extensive on-the-job

training, but there are few formal training programs and no accrediting agency. Technicians are

not required to be licensed, registered, or certified, although they may take the examination in

hemodialysis offered by the Board of Nephrology

Examiners.

Nutritional Support

Registered nurses may earn certification in

parenteral and enteral nutrition through the National Board of Nutrition Support Certification,

created in 1984. The first examination for certification in parenteral and enteral nutrition nursing was given in June 1985 to 100 applicants.

Dietitians who specialize in nutritional support

must meet the American Dietetic Association’s requirements for registration. These requirements

include the completion of a 4-year university

course in dietetics, nutrition, or food service management; clinical experience; and a passing score

on a written examination. Every 5 years, dietitians

who specialize in nutritional support must also

complete 75 hours of continuing education. Registered dietitians may join the special practice

group of the American Dietetic Association known

as “critical care dietetics.” It is expected that a process for dietitians to be certified in nutritional support will be set up very soon, and that the first

examination may be offered in spring of 1988, As

for nurses, this certification would be through

the National Board of Nutrition Support Certification (63).
Ch. 10—Manpower and Training • 383

Pharmacists who specialize in nutritional support have completed either a 5-year baccalaureate program or postgraduate work for the doctoral degree (Pharm.D.). Nutritional support

pharmacists are currently working with the American Pharmacy Association’s Board of Pharmaceutical Specialties to establish a process for certification in parenteral and enteral nutrition. They

hope to have this process in place by 1988 (28).

Resuscitatio n

The American Heart Association has developed

medical standards for certification in both basic

life support and advanced cardiac life support.

Courses that meet these standards are offered to

all health professionals (and to the lay public) by

hospitals, other training centers, and by the American Red Cross. Individuals who complete the

training are certified in basic or advanced life support. Certification and annual recertification is recommended for physicians and nurses; however,

requirements vary widely from State to State, institution to institution, and for different health

professionals. In most States, certification in resuscitation is not a condition for physician licensure

(99). Some hospitals, however, make current certification in basic or advanced life support a condition for physician staff privileges; some require

certification only for their ICU and emergency

room staff (8).

The U.S. Department of Transportation developed and approves all basic training programs for

emergency medical technicians (EMTs). This is a

standardized, 81-hour course given by many police, fire, and health departments, and by some

hospitals, medical schools, colleges, and universities. Individuals who have been certified in the

basic EMT program may go on to train as EMTparamedics. This training includes didactic clinical instruction, in-hospital practice, and a supervised field internship totaling approximately 1,000

hours (76). A certificate and/or associate degree

is awarded on completion of training, and graduates are then eligible to sit for the certification

examination. Recertification is required every 2

to 3 years (2). Some States require EMT-paramedics

to pass additional tests for certification or licensure. A registration examination is administered

by the National Registry of Emergency Medical

Technicians. EMT-paramedic training is subject

to approval by the American Medical Association’s

Joint Review Committee on Educational Programs

for the Emergency Medical Technician-Paramedic

(76).

Mechanical Ventilatio n

The respiratory therapist is usually a graduate

of a 2-year associate degree program of a community college. Some hospitals offer 2-year certification programs, and some colleges and universities offer a baccalaureate degree in respiratory

therapy. In addition to classroom work, a minimum of 1,000 hours training in a clinical setting

is required (2). Registered nurses and others who

have a baccalaureate degree in an appropriate science can complete training in 1 year (106). Individuals who complete a program approved by the

Joint Review Committee for Respiratory Therapy

and who pass the examination of the National

Board for Respiratory Therapy receive the credential of registered respiratory therapist (RRT). Licensure provisions currently exist in approximately

four States and are being sought in some others.

Respiratory technicians must complete a 10-to

12-month training program. Most of these are

based in hospitals or technical-vocational schools

(3). A graduate who passes the technician level

examination of the National Board for Respiratory

Therapy becomes a certified respiratory therapy

technician (CRTT).

Life-Sustaining Antibiotic Therap y

In general, intravenous life-sustaining antibiotics

may be administered by any registered nurse.

There is a specialized credential in intravenous

therapy, however, and some institutions—

especially nursing homes and home care providers

—require it. Since 1983, about 600 registered

nurses have attained the credential of “certified

registered nurse, intravenous” (CRNI) through the

National Intravenous Therapy Association. The

basic requirements beyond registration are 2 years

of specialty practice and passing the certification

examination (107).
384 . Life-Sustaining Technologies and the Elder/y

FINDINGS AND

Many issues related to the quality, availability,

and cost of life-sustaining care, as well as issues

that bear directly on treatment decisions, a r e

directly linked to the supply of pertinent health

professionals and to the content of their education and training. This chapter has focused o n

topics that concern both the primary care and

critical care specialties. Federal policies have direct

and indirect effects on a wide range of manpower

and training issues, ranging from employment opportunities in professions that are “technologydependent” to questions about the adequacy of

education and training in geriatrics and the feasibility of providing complex care in nursing homes.

Several major conclusions can be drawn from

this analysis. First, there is a severe shortage of

physicians, nurses, and allied health professionals

with expertise in geriatrics and gerontology. Despite direct Federal support for education and

training in geriatrics, and increased public and

professional awareness of its importance, the late

start and persistent recruitment problems in geriatrics, together with the rapidly increasing elderly

population, mean that the shortage of health professionals with expertise in geriatrics will probably persist. Reduced funding for health professions education would threaten what advances

have been made and impede further progress.

Moreover, although a large number of geriatric patients receive care in an ICU, little or no

crossover has occurred in the training of geriatrics and critical care personnel. There has been

no formal initiative to integrate geriatrics and

gerontology into the training of critical care physicians and nurses, and training focused on geriatrics seldom includes experience in critical care.

The lack of integrated training in critical care and

geriatrics may hinder communication among caregivers and may lead to inappropriate treatment.

The need for rapid expansion of the supply of

geriatric specialists, expenditure of public funds

and resources to accomplish this, and the recent

dramatic changes in credentialing make research

on geriatric manpower important. It would be useful, and potentially cost-effective, to have information for evaluating the response of students

IMPLICATIONS

and practicing health professionals to the new

educational and career opportunities in geriatrics

and to any incentive programs that might be instituted to stimulate recruitment to geriatrics.

The curricula in medicine and nursing in general and, to a lesser extent, the allied health professions are beginning to change in response to the

aging of the patient population, ethical problems

posed by life-sustaining technologies, rapid development of new knowledge, and cost constraints.

Newly introduced subjects including the humanities, death and dying, health law, and medical decisionmaking share problems of uneven institutional

commitment, limited and undependable funding,

inadequate faculty, and competition for curriculum time. The effects of curriculum change on

patient care have, for the most part, been unevaluated.

Significant changes are occurring in staffing patterns within hospitals and other health care institutions. Some professions are experiencing layoffs; others have an increased workload and/or

improved employment opportunities. Further

staff reductions in certain categories are expected

to be revealed as the effects of prospective payment are documented. Changes in staffing patterns have implications for the amount and quality of care it is feasible to provide. If personnel

reductions occur on a large scale, unemployment

problems must also be considered. With relative

changes in personnel also come new or changed

roles and responsibilities that may create the need

for new or additional training.

Shifts in the settings in which life-sustaining

technologies are provided also have important implications for employment patterns. For many categories of personnel, employment opportunities

in hospitals are being reduced; other areas show

strong growth. Nursing homes and home care

agencies are beginning to provide more skilled

care and, thus, will need additional highly trained

personnel, Some health professions students and

practitioners need special training to work in settings in which they are new and/or where acutely

and terminally ill elderly patients are new. Such

retraining could potentially assist displaced health

professionals and improve patient care.
A patient population that is older and sicker,

plus changes in the site of care and changes in

staffing patterns, bring substantial changes in the

care that is needed and the resources necessary

to provide it. Such fundamental changes raise

questions of quality assurance and create the need

for continuing education of health professionals.

Interdisciplinary collaboration and effective

teamwork cannot be assumed. Although there has

been much talk about health care teams, and there

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11

Ch. 10—Manpower and Training ● 385

is much evidence of their benefits, there is little

training to make such teamwork a reality.

FinaIly, caregivers to severely ill elderly patients

are under severe stress that can lead to dysfunctional behaviors, including diminished job performance. Health professions education poorly

prepares caregivers to deal with death in a way

that is most beneficial to patients and least harmful to themselves.

CHAPTER 10 REFERENCES

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Randomized, Controlled Clinical Trial of a Geriatric Consultation Team, ” Journal of the American Medical Association 255:2617-2621, 1986.

Alperin, S., and Alperin, M., 120 Careers in the

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American Association for Respiratory Therapy,

“A Career for Now and the Future,” Dallas, TX,

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American Association of Critical-Care Nurses,

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American Association of Nephrology Nurses and

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1983.

American Dietetic Association, “Dietitians in Critical Care, ” Chicago, IL, no date.

American Geriatrics Society, “Geriatric Expertise

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of Technology Assessment, U.S. Congress, Washington, DC, Nov. 22, 1985.

American Heart Association, Education and Community Program Department, personal communication, Dec. 4, 1986.

American Hospital Association, “1985 Hospital

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1986.

American Medical Association, Committee on Allied Health Education and Accreditation, “A Report of a Survey on the Impact of PPS on Clinical

Education,” by R. Parks, in Allied Heahh Education Newsletter, December 1985.

American Medical Association, Council on Medical Education, “Future Directions for Medical

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386 • Life-Sustaining Technologies and the Elderly

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Appendixes
Appendix A

Method of the Study

OTA’s assessment “Life-Sustaining Technologies and

the Elderly” was requested by the Senate Special Committee on Aging and the House Select Committee on

Aging. It was preceded by a planning effort that identified relevant congressional concerns and established

a tentative plan for the study. A project proposal was

developed and approved by OTA’s Technology Assessment Board in September 1984. Staff were recruited

and hired, and work commenced in October 1984. The

original staff consisted of a project director, three

analysts, and two research assistants, with backgrounds

in gerontology, social work, public health, and law.

In preparing assessments, OTA relies heavily on the

advice and assistance of persons outside the Office.

Each project has an advisory panel, which advises and

assists staff throughout the course of the assessment.

The panel suggests source materials, subject areas, and

perspectives to consider; reviews drafts prepared by

staff and contractors; helps interpret information; suggests conclusions based on the information prepared

by staff; and offers advice in the development of policy issues and options. Panelists do not, however, determine the final form or content of an assessment,

and they are not responsible for its conclusions. Other

important contributors to an assessment include the

numerous individuals who serve as contractors and

reviewers, providing resources and valuable technical assistance in their areas of expertise.

The advisory panel for “Life-Sustaining Technologies

and the Elderly” consisted of 20 individuals with backgrounds in medicine (especially geriatrics), biomedical ethics, long-term care, health economics, health law,

and technology development. Their expertise and experience included the full range of treatment settings

in which life-sustaining technologies are used and the

diverse viewpoints of patients, families, and professional groups involved in the care of life-threatened

elderly persons. John W. Rowe, M.D., of Beth Israel

Hospital and the Harvard Medical School, served as

chairman. (Members of the panel are listed at the beginning of this report.) Between March 1985 and February 1986, three panel meetings were held. The panel

meetings were open to the public, and some observers

attended each meeting.

At the first panel meeting, March 15, 1985, discussion focused on the scope of the assessment and identification of the major issues to be addressed. The panel

considered staff’s preliminary outline for the assessment, and agreement was reached that the focus would

be on five technologies, namely, cardiopulmonary

resuscitation, mechanical ventilation, dialysis, nutritional support and hydration, and life-sustaining antibiotic therapy, It was further decided that there

would be a chapter on each technology, plus chapters

on the legal issues, the ethical issues, and one on manpower and training issues.

To augment in-house research, project staff solicited

proposals and awarded contracts on each of the five

technologies; on future developments in life-sustaining

technologies; on legal issues and ethical aspects of

decisions about life-sustaining technologies; on manpower and training for the selected technologies; on

the clinical economics of nutritional support and lifesustaining antibiotic therapy; and on patient classification systems. OTA also awarded contracts for background papers on the use of life-sustaining technologies in six other countries. (The final reports for each

of the contracts, as listed at the end of this appendix,

may be obtained from the National Technical Information Service in Springfield, VA.)

By integrating the work of contractors with their

own research, OTA staff prepared an initial draft of

the report and sent it to the advisory panel for review.

This draft was considered in detail at the second meeting of the advisory panel, held October 21-22, 1985.

One topic of the meeting was how much technical and

clinical detail about the technologies should be included

in the report to support and inform discussion of the

public policy concerns relative to the technologies.

Another major topic of discussion was the use of age as

a criterion in decisions about life-sustaining treatments.

In addition to being reviewed by the advisory panel

and by project staff, individual draft chapters were

reviewed by OTA staff not connected with this assessment and by a large number of other individuals. External reviewers are listed in appendix B.

Project staff made additions and revisions to the draft

chapters based on suggestions and comments of all

reviewers and sent revised drafts to the advisory panel.

At the final meeting of the advisory panel, February

4-5, 1986, these revised draft chapters were reviewed.

The panel made suggestions about the areas of emphasis and organization of the final report and discussed Federal policy options. The panel proposed and

reached consensus on a series of general principles

to guide decisions about life-sustaining treatments and

suggested that these be included in the final assessment (see ch. 1).

Following the third panel meeting, the report was

substantially revised and subjected to additional ex393
394 . Life-Sustaining Technologies and the Elderly

ternal review. It was then approved by the Technology Assessment Board and submitted to the requesting congressional committees.

OTA held two workshops in conjunction with this

assessment. The first workshop was on “Making Medical Decisions for Mentally Impaired Adults.” It was

a joint undertaking of this assessment and the OTA

assessment on dementia and was held on Sept. 23,

1985. Participants at the workshop, listed below, reviewed two contractor documents, “Surrogate Decisionmaking for Elderly Individuals Who Are Incompetent or of Questionable Competence” and “Withholding

and Withdrawing of Life-Sustaining Treatment for

Elderly Incompetent Patients: A Review of Court Decisions)” and discussed methods for improving surrogate decisionmaking for decisionally incapable

adults. In response to the recommendation of the workshop participants, OTA subsequently contracted for

a third background paper, “Legal Perceptions and Medical Decisionmaking.” Excerpts from all three documents were published by Milbank Memorial Fund

Quarterly, Vol. 64, Supplement 2, 1986.

The second workshop held in conjunction with this

assessment was on “Classification Systems for Decisionmaking for Critically Ill Elderly Patients,” held May

14, 1986. The workshop participants, listed below, reviewed a contractor report on classification systems

and discussed the use of chronological age in existing

classification systems and the validity and usefulness

of these systems for individual treatment decisions.

Some conclusions of both workshops are included

in this report on Life-Sustaining Technologies and the

Elderly. For detailed analysis of the topics, the interested reader is encouraged to refer to the contractor

documents, which are available from the National

Technical Information Service.

Workshop Participants

Making Medical Decisions for Mentally

Impaired Adults, Sept. 23, 1985

Elias S. Cohen, Cochair

Community Services Institute, Inc.

Narbeth, PA

Daniel Wikler, Cochair

Department of History of Medicine

Program in Ethics

University of Wisconsin

Thomas L. Beauchamp

Kennedy Institute of Ethics

Georgetown University

Richard W. Besdine

Hebrew Rehabilitation Center for the Aging

Roslyndale, MA

Dorothy H. Coons

Institute of Gerontology

University of Michigan

Ronald E. Cranford

Department of Neurology

Hennepin County Medical Center

Minneapolis, MN

Anne J. Davis

Department of Mental Health and Community

Nursing

University of California, San Francisco

Daniel C. Dennett

Department of Philosophy

Tufts University

Nancy Neveloff Dubler

Division of Legal and Ethical Issues in Health Care

Montefiore Medical Center

Bronx, NY

Bernard Lo

Institute for Health Policy Studies

University of California, San Francisco

Alan Meisel

School of Law

University of Pittsburgh

Vijaya L. Melnick

Center for Research and Urban Policy

University of the District of Columbia

Paul Nathanson

Institute of Public Law

University of New Mexico

Cynthia E. Northrop

Attorney

New York, NY

John J. Regan

School of Law

Hofstra University

Marion Roach

Journalist

New York, NY

Randa Lee Smith

Alzheimer Program

Casa Colina Hospital

Pomona, CA
App. A—Method of the Study . 395

David C. Thomasma

Loyola Stritch School of Medicine

Loyola University Medical Center

Maywood, IL

Classification Systems for

Decisionmaking for Critically Ill

Elderly Patients, May 14, 1986

Harold C. Sex, Chair

Division of Internal Medicine

Palo Alto VA Medical Center

Stephen Ayres

School of Medicine

Medical College of Virginia

David J. Cullen

Recovery Room

Massachusetts General Hospital

Ian Frasier

Ewart Angus Intensive Care Unit

The Wellsley Hospital

University of Toronto

David H. Gustafson

University of Wisconsin

Madison, WI

Frank E, Harrell, Jr.

Division of Biometry

Duke University Medical Center

Susan Horn

Center for Hospital Finance and Management

Johns Hopkins University

William A. Knaus

ICU Research Unit

George Washington University School of Medicine

Jean-Roger LeGall

Service de Reanimation Medicale

Hospital Saint-Louis

Stanley Lemeshow

Division of Public Health

School of Health Sciences

University of Massachusetts at Amherst

William Lohr

National Center for Health Services Research

Hyattsville, MD

Albert Mulley

General Internal Medicine Unit

Massachusetts General Hospital

Robert Oye

Department of Medicine

UCLA School of Medicine

Daniel Teres

Adult Critical Care Services

Baystate Medical Center

Douglas Wagner

ICU Research Unit

George Washington University School of Medicine

Contracts Written for OTA and Where They Can Be Obtained

The contract papers written for OTA’a assessment “Life-Sustaining Technologies and the Elderly have been

compiled in five volumes that are available from the National Technical Information Service, U.S. Department

of Commerce, 5285 Port Royal Rd., Springfield, VA, 22161; phone (703) 487-4650.

Life-Sustaining Technologies and the Elderly: Working Papers, Volume 1: The Technologies, Part 1

“Cardiopulmonary Resuscitation in the Elderly,” by Christine K. Cassel, Marc D. Silverstein, John LaPuma, Michael

McCally, Dianne Roland, Mary Ahern, and Suzanne Mitchell, Center for Clinical Medical Ethics, Pritzker School

of Medicine, University of Chicago, Chicago, IL.

“Prolonged Mechanical Ventilation,” by Allen I. Goldberg, with contributions by Lu Ann Aday, Marlene J. Aitken,

Augusta Alba, Robert J, Byrick, Candice Clark, Susen Dunmire, Donna Frownfelter, Sam P. Giordano, Bernard

Goldstein, Frank J. Indihar, Gini Laurie, Margaret Pfrommer, Howard Robboy, and Ed Roberts, for Care for

Life, Chicago, IL.

“Hemodialysis, Peritoneal Dialysis, and Related Therapies for Renal Dialysis and the Elderly/Technology, ” by

Christopher R. Blagg, Northwest Kidney Center, Seattle, WA.

“Renal Dialysis Decisionmaking,” by Richard B. Freeman, University of Rochester Medical Center, Rochester, NY.

“Report on the Treatment of Elderly Patients by Dialysis and Transplantation in Europe)” by S. Challah, European

Dialysis and Transplant Association, London, U.K.
396 ● Life-Sustaining Technologies and the Elderly

Life-Sustaining Technologies and the Elderly Working Papers, Volume 2: The Technologies, Part 2

“Nutritional Support and Hydration for Critically and Terminally Ill Elderly,” by David A. Lipschitz and Ronni

Chernoff, John L. McClellan Memorial Veterans Hospital, Little Rock, AK.

“Nutritional Support and Hydration for Critically and Terminally Ill Elderly,” by Lyn Howard, with contributions

by Lenore Heaphey, Michael Wolff, Jean Bigaouette, John Jenks, Liva Jacoby, John Balint, Michael Caldwell,

and C. Richard Fleming, for the Oley Foundation, Albany Medical Center, Albany, NY.

“Antibiotics and the Elderly,” by David W. Bentley, William H. Barker, Kathryn M. Hunter, Peter D. Mott, Charles

E. Phelps, and Patricia A. Tabloski, University of Rochester and Monroe Community Hospital, Rochester, NY.

“Technology Assessment on Future Developments in Life-Sustaining Technologies for Elderly,” by Yukihiko Nose,

Makoto Usami, Takashi Horiushi, and Paul Malchesky, for the International Center for Artificial Organs and

Transplantation, Cleveland Clinic Foundation, Cleveland, OH.

“The Clinical Economics of Nutrition Support Services and Antibiotic Medications for the Critically and Terminally Ill Elderly,” by Deborah S. Kitz, Henry Glick, and John M. Eisenberg, University of Pennsylvania, Philadelphia, PA.

Life-Sustaining Technologies and the Elderly Working Papers, Volume 3: Legal and Ethical Issues, Manpower and Training and Classification Systems for Decisionmaking

“An Ethical Analysis of Withdrawal From Life-Sustaining Technologies and Assisted Death,” by James F. Childress, Department of Religious Ethics, University of Virginia, Charlottesville, VA.

“Distributive Justice and the Allocation of Technological Resources to the Elderly,” by Robert M. Veatch, Kennedy

Institute of Ethics, Georgetown University, Washington, DC.

“Life-Sustaining Technologies and the Elderly: The Legal Issues)” by Connie Zuckerman, Montefiore Medical Center, Bronx, NY.

“Geriatric Expertise in the Context of Critical and Terminal Care, ” by Patricia Barry and Lawrence Markson

for the American Geriatrics Society, New York, NY.

“Manpower for Selected Technologies)” by Ruth S. Hanft, Catherine C. White, and Linda E. Fishman for Ruth

Hanft Associates, Washington, DC.

“Classification Systems for Decisionmaking for Critically Ill Elderly Patients,” by Robert W. Gage, Stanley Lemeshow,

and Jill S. Avrunin, University of Massachusetts, Amherst, MA, and Daniel Teres, Baystate Medical Center,

Springfield, MA.

Life-Sustaining Technologies and the Elderly Working Papers, Volume 4: Use of Life-Sustaining Technologies in Other Countries

“Legal Issues: Italy)” by Emily C. Moore, Rome, Italy.

“Elderly in Japan,” by Rihito Kimura, Kennedy Institute, Washington, DC.

“Legal Issues: Canada)” by Holly Dugan, Johns Hopkins University Center on Aging, Baltimore, MD.

“Legal Issues: Yugoslavia,” by Christoph Haug, Johns Hopkins University Center on Aging, Baltimore, MD.

“Legal Issues: Federal Republic of Germany, ” by Christoph Haug, Johns Hopkins University Center on Aging,

Baltimore, MD.

“The Medical Care and Treatment of the Critically Ill Elderly in China: Issues and Lessons for American Policies,”

by John Langenbrunner, Washington, DC.

Philosophical, Legal and Social Aspects of Surrogate Decisionmaking for Elderly Individuals, May 1987

“Surrogate Decisionmaking for Elderly Individuals Who Are Incompetent or of Questionable Competence,” by

Allen Buchanan, Department of Philosophy, University of Arizona, AZ; and Dan W. Brock, Department of

Philosophy, Brown University, RI.

“Withholding and Withdrawing of Life-Sustaining Treatment for Elderly Incompetent Patients: A Review of Court

Decisions and Legislative Approaches)’) by George J. Annas and Leonard H. Glantz, Boston University Schools

of Medicine and Public Health, MA.

“Legal Perceptions and Medical Decisionmaking,” by Marshall B. Kapp, Department of Medicine in Society, Wright

State University, Ohio; and Bernard Lo, Department of Medicine, University of California, San Francisco, CA.

“Philosophical Issues Concerning the Rights of Patients Suffering Serious Permanent Dementia,” by Ronald Dworkin,

Department of Philosophy, University College, Oxford, England.
Appendix B

Acknowledgments

OTA is grateful to members of the advisory panel, contractors, and the many other individuals and organizations that contributed to this assessment. In particular, OTA acknowledges the following individuals for reviewing drafts of parts of this report.

Mary Ahern

American Hospital Association

Paul Armstrong

Morristown, NJ

Father Robert Barry

Dominican House of Studies

Susanna E. Bedell

Harvard University Medical School

Paul Bellamy

UCLA Medical School

William Benson

Senate Special Committee on Aging

David W. Bentley

Monroe Community Hospital

James Bilstadt

Food and Drug Administration

Jim Bopp, Jr.

National Right to Life Committee

Christopher Blagg

Northwest Kidney Center

Vardaman Buckalew

Bowman-Gray School of Medicine

Judy Bunch

Food and Drug Administration

Michael Callahan

Rancho Los Amigos Hospital

Christine K. Cassel

University of Chicago

Hinda R. Chaikind

Congressional Budget Office

S. Challah

St. Thomas Hospital, London

Bonnie Chenevey

American Association of Critical-care Nurses

Certification Corp.

Ronni Chernoff

John L. McClellan Memorial Veterans Hospital

James F. Childress

University of Virginia

Cecil H. Coggins

Massachusetts General Hospital

Elena Cohen

Society for the Right to Die

Nancy Coleman

Commission on Legal Problems of the Elderly

Rita Coney

Travenol Laboratories, Inc.

Sigrid S. Deeds

American Red Cross

Robert Destro

Catholic University of America

Willem Drukker

The Netherlands

Toby Edelman

National Senior Citizens Law Center

John M. Eisenberg

University of Pennsylvania

Sol Eskenazi

American Society for Parenteral and Enteral

Nutrition

David Festa

Breakthrough Newsletter

Howard Frazier

Harvard University School of Public Health

Eli Friedman

State University of New York, Downstate Medical

Center

Sam P. Giordano

American Association for Respiratory Care

Richard J. Glassock

UCLA/Harbor General Hospital

Rudolpho Godinez

The Children’s Hospital of Philadelphia

Allen I. Goldberg

Children’s Memorial Hospital, Chicago

397
398 . Life-Sustaining Technologies and the Elder/y

Carl W. Gottschalk

University of North Carolina

Ed Grant

Americans United for Life Legal Defense Fund

Ake Grenvik

University of Pittsburgh School of Medicine

Evan Hadley

National Institute on Aging

David Hamerman

Montefiore Medical Center

Ruth S. Hanft

Washington, DC

Susan Harris

American Health Care Association

David S. Hattaway

Nicolet Clinic

Julian Haynes

American Dietetic Association

Lenore L. Heaphey

Oley Foundation

Lyn Howard

Oley Foundation

Sam Hull

Ross Laboratories

Ken Iserson

University of Arizona College of Medicine

Craig S. Jeffries

Foster Medical Corporation

Timothy F. Kaiser

Monroe Community Hospital

Mitchell V. Kaminski

Chicago Medical and Dental Center

Nancy Kilpatrick

Bureau of Health Professions

Elaine Tanner Karron

Rochester, NY

Carl M. Kjellstrand

Hennepin County Medical Center

Saulo Klahr

St. Louis, MO

John Laster

Washington, DC

David A. Lipschitz

John L. McClellan Memorial Veterans Hospital

Bernard Lo

University of California at San Francisco

John F. Maher

Uniformed Services University of the Health

Sciences

Barry Make

Boston University Medical Center

David M. Maklan

Westat, Inc.

Raymond Marcin

Catholic University of America

Lawrence Markson

Boston University Medical Center

Celine Marsden

UCLA School of Nursing

Debra Mathieu

Tucson, Arizona

Stephen McConnell

Senate Special Committee on Aging

Russell McIntyre

Rutgers University Medical School

Alice Mehling

Society for the Right to Die

Paul T. Menzel

Pacific Lutheran University

Barbara Mishkin

Washington, DC

Lynn Morrison

Association of Professors of Medicine

Albert G. Mulley

Massachusetts General Hospital

Nancy J. Olins

American Association of Retired Persons

Pharmacy Service

Robert Park

George Washington University

Alan Parver

Alliance for Medical Nutrition

L. Gregory Pawlson

George Washington University
App. B—Acknowledgments Ž 399

Jonathan Peck

Alternatives Futures Associates, Inc.

Edmund Pellegrino

Georgetown University

Patricia Peyton

Health Care Financing Administration

Charles E. Phelps

University of Rochester

Joseph J. Piccione

National Forum Foundation

John Pierce

Austin, Texas

William A. Read

American Hospital Association

Rita Reimer

Congressional Research Service

Barbara Rolling

Bureau of Health Professions

John L. Rombeau

University of Pennsylvania

Jack Rosenberg

Long Island University

Fenella Rouse

Society for the Right to Die

Charles Sabatino

Commission on Legal Problems of the Elderly

Gary Schneider

Health Industry Manufacturers’ Association

Michael Schuster

Legal Counsel for the Elderly

Leopold Selker

Texas Woman’s University

David Shindell

Food and Drug Administration

Mark Siegler

University of Chicago

Marc D. Silverstein

University of Chicago

Michael D. Sitrin

University of Chicago

Edward Sivak

The Cleveland Clinic

George Stanley

Food and Drug Administration

Katharine Sturgis

Philadelphia, PA

Patricia Tabloski

Monroe Community

David C. Thomasma

Lloyola University

Riva Touger-Decker

Dietitians in Critical

Julie Trocchio

Hospital

Care

American Health Care Association

Robert M. Veatch

Georgetown University

Steve Vogt

Foster Medical Corporation

Carol Weil

American College of Physicians

T. Franklin Williams

National Institute on Aging

Anne Zimmer

National Institute on Aging

Connie Zuckerman

Montefiore Medical Center
Appendix C

Future Developments in

Life-Sustaining Technologies

Introduction

Future developments in life-sustaining technologies

will improve existing technologies and create new therapies and devices to treat currently untreatable conditions. Technological improvements should make

treatments more effective, more comfortable, more

portable, cheaper, less invasive, or some combination

of these factors. These improvements may change how

often and under what circumstances certain life-sustaining technologies are used, and they may contribute to changing attitudes about appropriate care. However, fundamental questions of access to and quality

of care, cost, quality of life, and decisionmaking will

remain even as the technologies change.

This appendix describes the general directions of current research and development, both in the public and

the private sectors, that are pertinent to the use of

life-sustaining technologies for elderly patients. Areas

in which basic research is crucial to further progress

are highlighted.

Factors Affecting the Demand for

Life-Sustaining Technologies

The demand for new life-sustaining technologies will

depend on a variety of factors, including the degree

to which preventive strategies are implemented, the

size of the potential patient population, reimbursement

policies, and attitudes about the extension of life. Numerical projections of the groups at risk for the five

life-sustaining technologies discussed in this report are

not attempted, because of the lack of data on current

use of the technologies and because the size and composition of future patient groups will be determined

in large part by the availability and use of various new

preventive, diagnostic, and therapeutic technologies.

The effects of those treatments yet to be developed

are impossible to gauge. Nevertheless, given both the

growth and the aging of the elderly population, an increase in demand is likely.

The future social context in which technological

development will occur and health care decisions will

be made is also uncertain. The Institute for the Future, a private research and consulting firm in Menlo

Park, CA, recently developed two possible scenarios

to show the wide range of possibilities. These are not

predictions of what the sociopolitical environment will

be, but rather indicators of the wide range of factors

that might influence health care decisionmaking and

the development of new life-sustaining technologies

(47).

One scenario, entitled ‘(Cost Containment,” envisions

the development of societal consensus to contain health

care costs, The consensus is sustained by the relatively

young, college-educated, baby-boom group whose

needs center more on housing, education, and child

care than on health; the competitive climate for business; the concern over government deficits; and the

public’s sharp eye on the public purse and the family

budget. In this scenario, total health care expenditures

as a percentage of gross national product (GNP) remain

at their 1983 level in the year 2000 (47).

In the other scenario, entitled “People Want More,”

the historic pattern of growth in the health care system continues despite efforts to contain costs. The demographic, attitudinal, technological, political, and economic forces assumed in this scenario create pressures

to provide a wider range of health care services to an

aging population. Progress is made in treating a variety of diseases. People accept the value of these interventions and demand that they be made available. The

result is widespread support for an expanding range

of chronic care, acute care, and rehabilitation services. Somewhat paradoxically, say the authors of this

scenario, the hospice movement will continue to grow

because there will still be many illnesses for which the

limits of medical science are obvious to the public (47).

The burden of chronic illness in the years to come

is also impossible to foresee. One major theory holds

that although the incidence of chronic disease may increase, the average age at onset and the disabling effects of these diseases will increase faster than will

life expectancy. This would produce a “compression

of morbidity” in which the average period of chronic

disease and disability in old age will be less than current levels. Another scenario foresees longer average

periods of disability and chronic illness in the future,

based on the assumption that recent lifesaving and

other health care technologies have lengthened lives

more than they have reduced the incidence of chronic

diseases (87).

400
App. C—Future Developments in Life-Sustaining Technologies • 401

Factors Affecting the Availability of

Life-Sustaining Technologies

A spectrum of individuals and organizations plays

a role in the development of medical technologies. Patients and clinicians identify and define specific medical problems that may be controlled, cured, or compensated for technologically. Biomedical engineers and

others apply their expertise to identified clinical problems. Some technologies are not so much a result of

physiological understanding as they are a triumph in

solving a vexing technical problem.1 Other developments require better understanding of physiology.

Once a useful drug or device has been developed, a

manufacturing company must assess a variety of fac-

‘A nuclear-powered cardiac pacemaker is an excellent example of engineering ingenuity that solved a power-supply problem.

tors and make a decision about whether to produce

and market the technology.

Research and Development

Biomedical research and development (R&D) is focused on understanding physiological processes and

developing cures or prostheses to use when these processes are pathological. Some R&D is specific to a particular technology, while some will affect several technologies. Computerization and new biocompatible

materials will have applications in most if not all of

the technologies described in this report. The “skin

button,” for example, can be used in dialysis, nutritional support, intravenous (IV) antibiotic therapy, and

other treatments that require vascular access. (See box

c-l,)
402 ● Life-Sustaining Technologies and the Elderly

Biocompatible materials are required in almost all

of the technologies discussed in this report. New materials could be used for a variety of purposes, such

as smaller, more comfortable feeding tubes or dialysis

membranes that more closely mimic the action of the

kidney. Biocompatible materials can be made from a

variety of substances, including ceramics, polymers,

cellulosics, and metals (17,43)51).

Computers also have increasing applications. Computers are being applied to infusion pumps to assure

proper delivery of antibiotics and nutritional formulas,

to defibrillator to automatically provide the appropriate electric shock, and to blood gas monitors, important in mechanical ventilation. Metabolic monitoring systems can measure oxygen consumption and

carbon dioxide production, using computers for data

storage and graphics (12).

In addition to treatment technologies, computers will

have applications in prognosis and decisionmaking. Assimilating the immense amount of information pertinent to clinical decisions and selecting from many potential treatments is becoming increasingly difficult as

the knowledge base grows. New techniques referred

to as “decision analysis, ““medical decisionmaking, ” or

“clinical decisionmaking” are being developed to systematize decisionmaking and objectify uncertainty (see

ch. 10). “Expert systems, ” computer systems that are

programmed to approximate human thought processes, will increasingly aid physicians in making diagnoses and prescribing treatments. Computer networks

and databases are evolving to link physicians with information about treatment modalities and outcomes.

Computers can store and sort the constantly increasing amount of medical information (2), allowing physicians to keep up with and add to the expanding

knowledge base.

An example of a computer application relevant to

the technologies discussed in this report is the computer surveillance of hospital-acquired infections and

antibiotic use. One study showed that computer

screening to identify patients most likely to have infections can find more infections faster than traditional

methods (31). Timely control measures are believed

to be important for interrupting the spread of hospitalacquired infections (31).

Eventually, home health monitors might incorporate

a microprocessor with reservoirs of drugs and electronic probes. Several prognosticators envision a “hospital on the wrist,” a wearable, miniature health monitoring device that could sense changes in the body

and administer drugs or therapeutic electrical charges

automatically (8,59).

New power sources are also an important area of

research. Power sources are currently an important

issue for pacemakers, defibrillator, and cardiac prosthesis and assist devices. Compact power sources will

be needed for implantable or portable devices.

Production, Diffusion, and Use

of New Medical Technologies

Development of a new technology does not always

result in its availability. A drug or device that has been

determined to be technologically feasible (from an engineering and production standpoint) must still pass

through a complex and lengthy approval process to

become commercially available. Once new drugs, devices, or procedures are available, health care providers must make decisions about adopting or investing

in them. Those decisions are influenced by a variety

of factors, including the general climate of the health

care industry.

Several analyses foresee longer development times

for new technologies in the coming years, due at least

in part to increasing emphasis on cost containment.

Industry’s willingness to support equipment-related

R&D is expected to decline as more hospitals forgo

expensive equipment purchases whose cost-effectiveness has not been clearly demonstrated (11,63).

Economic influences sometimes prevent the development of socially desired drugs and medical devices.

For instance, the potential profitability of a drug that

treats only one disease of low incidence may not provide pharmaceutical companies with adequate incentive to bear the expense of development.2

In addition, once a drug or device enters the testing

and approval-seeking stage, various Federal agencies

influence its ultimate availability. The National Institutes of Health (NIH) may support randomized clinical

trials; the Food and Drug Administration (FDA) evaluates safety and efficacy prior to commercial distribution; the Health Care Financing Administration (HCFA)

determines Medicare coverage and reimbursement.

As technologies are marketed, the role of third-party

payers in determining the fate of drugs and devices

should not be underestimated. In some situations, reimbursement policies have contributed to the overuse

of certain medical technologies. Other factors that

sometimes encourage overuse of medical technologies

include competition among hospitals to attract patients

and physicians, public demand for sophisticated technologies, increasing specialization within medicine,

physicians’ desire to do as much as possible for their

patients, and uncertainties related to what constitutes

appropriate use. The threat of malpractice suits can

also encourage the overuse of medical tests and procedures (85). In addition, the promise of new technol2Congress enacted the Orphan Drug Act of 1983 (Public Law 97-414) to

create additional incentives for the development and production of drugs

and devices for treating rare diseases and conditions.
App. C—Future Developments in Life-Sustaining Technologies • 403

ogies has at times lured providers into creative financing and partnership arrangements so they can gain

access to a major new technology-in spite of

certificate-of-need limitations or other regulatory obstacles (77).

Alternative Treatment Settings

Many providers and manufacturers are investigating alternate-site care, to replace or supplement traditional inpatient hospital care. They hope to develop

more cost-effective ways of providing health care and

to identify new markets. As competition and costcontainment efforts in the health care industry intensify, technologies useful in alternate-site treatment will

become increasingly important. The health care industry has recognized these opportunities, as reflected

in a series of reports analyzing nonhospital providers

(40) and the increased production of devices intended

for home use (e.g., larger IV bags to last through the

night). Reduced size and increased portability of medical equipment will facilitate the use of various technologies in nonhospital settings.

Among the settings receiving increased attention are

nursing homes, patients’ homes, and ambulatory care

centers, including pain management centers and diagnostic imaging centers. Each of these sites provides

opportunities for technological innovation and increased involvement of lay personnel and less trained

health professionals. However, the adoption and use

of technologies suitable for either home or outpatient

use is often limited by reimbursement policies. For example, lack of Medicare coverage for IV antibiotics at

home may limit the use of this technology for elderly

patients (see ch. 9).

Future of Resuscitation

In spite of the proven value of cardiopulmonary

resuscitation (CPR) as a life-saving procedure, resuscitation remains fraught with potentially severe problems and complications, and it is often unsuccessful.

As discussed in chapter 5, resuscitation involves two

stages: basic and advanced life support.

Basic Life Support

Current research in the area of basic life support

focuses on developing techniques to improve ventilation and blood flow in the event of cardiac arrest, reduce the number of CPR-related injuries, and improve

survival across all diagnostic classes of resuscitation

patients. Another area of research is the development

of techniques to correct certain types of arrhythmias

(e.g., asystole or bradyarrythmias) that are difficult to

treat with current CPR methods.

Efforts to improve basic life support are focused on

modifying current techniques, rather than developing equipment. The most obvious areas of research

are the duration of chest compression and the rate

and timing of ventilation during CPR. Methods to improve blood flow during CPR, especially to the brain,

are also under investigation. The risk of brain damage during CPR is very high because inadequate circulation of blood deprives the brain of needed oxygen.

New CPR is an experimental process that requires

specialized equipment and endotracheal incubation.

This more complex version of CPR combines chest compression and lung inflation with abdominal binding to

increase pressure inside the chest. This pressure is

transmitted up the carotid arteries to increase the flow

of blood to the brain, thus minimizing the risk of brain

damage. This model has proven successful in dogs and

is being investigated in humans. Some success has also

been reported with the use of pneumatic anti-shock

trousers (as a means of abdominal binding) in increasing survival rates. The initial data showed slightly

higher resuscitation and discharge rates with the use

of pneumatic trousers but were statistically significant

in only one group of patients (57).

Other variations on standard CPR under investigation include asynchronous ventilation; simultaneous

ventilation and compression; intermittent abdominal

counterpulsation; and high-frequency, high-momentum chest compression. All are designed to take maximum advantage of the mechanisms of blood flow. All

of these approaches represent the broader and increasingly prevalent view of CPR as cardiocerebropulmonary resuscitation, a term that recognizes the goal of

increased blood flow to the brain and the prevention

of neurological deterioration from global ischemia (lack

of blood flow) (74).

Open-Chest cardiac massage is receiving renewed interest, although it was virtually abandoned following

the introduction of closed-chest massage (standard

CPR) in 1960. Some studies have demonstrated successful open-chest CPR following failure of closed-chest

massage. In addition, some authors have noted that

closed-chest massage was introduced and accepted because of its clinical usefulness and efficacy, but without any controlled studies to compare its efficacy with

that of open-chest massage, or to determine the appropriate use of either procedure (74). Thus, additional

studies of open-chest CPR may be warranted. Some

clinicians, however, believe that the trauma of openchest CPR is so great that the technique should be used

only as a last resort, These clinicians warn that renewed interest in open-chest CPR may lead to its overuse (52).
404 ● Life-Sustaining Technologies and the Elderly

Defibrillation, Antitachycardial Pacing,

and Cardioversion

Since early defibrillation has been shown to be one

of the most important factors in the favorable outcome

of out-of-hospital cardiac arrests (84), many efforts in

the last 20 years to improve CPR survival have been

directed at shortening the time to defibrillation. Physicians and paramedics are the professionals most

likely to be trained to defibrillate patients at the scene

of the arrest. Programs are now being developed to

train Emergency Medical Technicians (EMTs) and lay

people in the use of automatic external defibrillator

(13). These devices sense cardiac rhythms, generally

through adhesive chest electrodes, and determine

whether ventricular fibrillation is present. Some models automatically shock a patient in ventricular fibrillation; others allow the user to decide whether or not

to deliver a shock. All operators must be trained in

basic CPR, since proper resuscitation with such a defibrillator depends on the integration of both CPR and

defibrillation.

The implantable defibrillator, a relatively new device, substantially improves the survival rates of patients who experience ventricular fibrillation. These

devices are surgically implanted in patients known to

be at risk of arrhythmias; they monitor and respond

automatically to aberrations in heart rhythms. The first

implantable defibrillator to receive FDA approval is

described in box C-2.

Two other implantable devices are useful for the

automatic termination of ventricular tachycardia and

fibrillation: antitachycardia pacemakers and low energy cardioverters. The pacemakers have been tested

in clinical trials, and several models are available. Because of their lower energy requirements, low energy

cardioverters are smaller than implantable defibrillator, but they have not been widely tested. Currently,

both devices require the use of a defibrillator as a

backup system, although the high energy produced

by a defibrillator is not always necessary to terminate

arrhythmia. Therefore, an ideal automatic electronic

arrhythmia-terminating device should combine antitachycardia pacemaking, low energy cardioversion,

and higher energy defibrillation. The ideal device

would be fully programmable between these three

modes of arrhythmia termination and incorporate

automatic arrhythmia detection algorithms. Clinical

trials of an implantable defibrillator with antitachycardia and regular pacing functions are expected in

1987 (10).
App. C—Future Developments in Life-Sustaining Technologies • 405

Drugs and Drug Delivery

Drugs play a significant role in resuscitation, and new

methods of drug delivery are being developed. For instance, some observers suggest that the use of endotracheal administration of drugs during resuscitation deserves more attention (32). In cases where

adequate intravenous routes cannot be located quickly,

endotracheal administration may provide an important alternative for the delivery of epinephrine, atropine, lidocaine, and certain other drugs. (Drugs that

require a large volume of fluid to achieve an effective

dose-e. g., sodium bicarbonate-are unsuitable for

endotracheal administration.) One advantage of the

endotracheal route is its extended duration of action

(two to five times that of intravenous administration).

Also, it can be used by paramedics (or others) or when

conditions preclude efficient intravenous access (32).

Another promising development in drug delivery is

a new device to administer lidocaine. The device is

about the size of a lipstick tube, costs approximately

$15, and automatically injects lidocaine into a muscle

when a safety cap is removed. This technique could

prevent up to 30 percent of pre-hospital deaths from

heart attack, depending on how quickly the lidocaine

was administered, according to the director of one randomized controlled study (6S. FDA has approved the

device for emergency use by physicians and paramedics, or by certain heart patients who are undergoing remote monitoring (53,65). Oral analogs to lidocaine

have also been developed (71).

Tissue-type plasminogen activator (t-PA) may also be

administered by an automatic intramuscular injection

device. Two companies are collaborating to develop

such a device to permit patients to self-inject themselves with t-PA, a drug expected to gain FDA approval

for dissolving blood clots associated with myocardial

infarction (13).

Other new drugs may help reduce the risk of cardiac

death for certain patients. One drug, flecainde acetate,

received FDA approval in November 1985 for the treatment of life-threatening ventricular arrhythmias and

for patients with symptomatic ventricular arrhythmias

(3). FDA also approved the drug amiodarone hydrochloride for use in patients who would otherwise die

from uncontrolled ventricular arrhythmias. This drug

has very serious side effects and is described as “a drug

of last resort, to be used by experts very familiar with

the treatment of severe heart rhythm disorders and

only after attempts to use alternative agents have

failed” (4).

Heart Replacement and

Assist Technologies

The use and success of heart transplants have greatly

increased in recent years, largely due to the introduction of the drug cyclosporine, which helps prevent rejection of the new organ. Human heart transplantation has become so routinely successful that it is

virtually perceived as a standard medical practice. Data

from about 1)200 heart transplants worldwide indicate that 90 percent of patients revert from “severely

compromised function” to “uncompromised function”

after a successful transplant (26). Artificial heart implantation, however, is currently experimental and

very controversial. Judging from the complications

associated with the current generation of artificial

hearts, it seems unlikely that artificial hearts will become widely available in the near future (27). Knowledge gained from artificial heart research may, however, be used to develop various forms of cardiac-assist

technologies. In addition, cardiac-assist technologies

may be useful in some patients for temporary cardiac

support until a failing natural heart recovers, or until

a suitable donor heart is available for transplantation.

A variety of heart replacement and assist devices are

under development or in clinical trials (table C-l).

Artificial Hearts. -As of November 1986, a total of

20 American patients had received artificial hearts.

Four models have been used: the Jarvik-7; the Jarvik70, a smaller model; the Penn State heart; and the Phoenix heart. The Jarvik-7 artificial heart has been tested

in five patients as a permanent replacement. All four

models of artificial heart have been used as a temporary prosthesis, until a suitable human heart was available (27).

The Jarvik-7 artificial heart is a pneumatically driven,

plastic “pump” with a smooth, nonthrombogenic polyurethane interior surface to reduce the risk of blood

clotting. Nonetheless, despite careful administration

of anticoagulants, the patients who have received the

Jarvik-7 have suffered complications resulting from

blood clotting.

Attempting to overcome problems with the Jarvik7, investigators have developed other approaches to

a permanent artificial heart. In May 1985, FDA granted

approval for the implantation of the “Penn State heart”

in six patients—the second artificial heart approved

for human implantation. The Penn State heart differs

from the Jarvik-7 in that it is intended to be used as

a temporary “bridge” to “eventual and timely [human]

cardiac transplantation” (26).
406 . Life-Sustaining Technologies and the Elderly

Table C-1.—Heart Replacement and Assist Devices

Type Status Major Developers

lntra-Aortic Balloon Pump FDA approved for Datascope, Kontron, SMEC, Aries

clinical use

Percutaneous Left Ventricular Assist Device R&D, clinical trailsa Abiomed, Elctro-Catheter

Emergency Left Ventricular Assist Device Pre-clinical trials Electro-Catheter

External Left Ventricular Assist Device Clinical trials Biomedicus, 3M, Novacor, Thermedics,

Thoratec, Abiomed, Nimbus

Implantable Ventricular Assist System Pre-clinical trials Abiomed, Novacor, Thermedics, 3M,

Symbion

Externally Driven Total Artifical Heart Clinical trials Symbion, Thoratec

Implantable Total Artificial Heart R&D Abiomed, Symbion, Thoratec, Cambridge

Medical Technology

aEle~tr&Catheter, S pulsatlle ~u~p, a major component of the cardiac assist device, has been used In clinical trials

SOURCE Biomedical Business International, Inc , Cardiovascular Therapy Products, Reporf #7027 (Tustm, CA March 1987)

Major goals for the next generation of artificial hearts

derive from the problems that have resulted during

the first few implantations in humans. These goals

include:

● development of an implantable power source useful for an extended period of time;

● construction from all nonthrombogenic materials;

. identification (or development) of effective and

long-lasting valves; and

• elimination of infection and rejection problems.

At this time, it appears that the next generation of

artificial hearts will have electrically powered motors,

probably with the power delivered transcutaneously,

to preclude the need for leads exiting from the body

and providing more mobility for heart recipients

(26,55). An early model of such a heart kept a calf alive

for 222 days, until an electric component failed. Human trials are not expected until the 1990s (48,55).

Cardiac-Assist Technologies. -Many researchers

are concentrating their efforts on options other than

complete artificial heart implantation—although some

of these technologies go hand in hand with artificial

heart research-e. g., the left ventricular assist device

(LVAD). Other technologies for cardiac assist include

the biventricular bypass device, the intra-aortic balloon pump, and cardiopulmonary bypass surgery.

The left ventricle does about 80 percent of the heart’s

work, The LVAD is a potentially implantable pump that

assists, rather than replaces, the heart left ventricle.

The natural left ventricle pumps the blood into the

LVAD, which then pumps the blood back into the patient’s circulatory system. A major advantage of the

LVAD is that the natural heart is left in place and may

be able to sustain circulation if the LVAD should fail.

As of mid-1985, four makers of electric LVADs had

received funding from the National Heart, Lung, and

Blood Institute to begin preclinical testing of their devices; makers also received stipulations about minimum reliability requirements. Researchers have estimated that experimental LVAD implants in humans

could begin as early as 1987 or 1988 (55); experimental

implants of LVADs in animals have succeeded for up

to 7 months (48).

Power sources have been a major obstacle to the development of LVADs and artificial hearts. Early models

used an external battery pack that was connected to

an implanted pump by a wire piercing the skin. Current models use electric coils (one implanted below

the skin and one worn on the surface of the skin) to

transmit electrical current inductively. The third generation of devices is expected to use thermal engines

that are powered by energy provided by high temperature, encapsulated salts. Animal experiments are

underway (16)48,55).

Other technical issues include the optimal material

for implantable pumps, optimal location in the body

for implantation of an artificial pump, the type of electrical system to use, and the means to regulate pulse

rate.

Future of Mechanical Ventilation

Developments important for long-term mechanical

ventilation include improved reliability, portability, ease

of use, and comfort. Some research is geared toward

simulating natural respiratory functions and, ultimately, toward developing a completely implantable artificial lung. The technologies likely to change the capabilities of acute ventilator therapy range from variations

on standard types of mechanical ventilation (e g., highfrequency ventilation) to hybrids of new and old methods (e.g., extracorporeal membrane oxygenation, with

low-frequency, positive-pressure ventilation).

Mechanical ventilation involves considerable deviation from the normal dynamics of spontaneous breathing and may be accompanied by dangerous side effects and complications. These include potentially

harmful cardiovascular effects, damage to the lungs,
App. C—Future Developments in Life-Sustaining Technologies . 407

uneven ventilation, disturbances of acid-base balance,

constriction of cerebral blood vessels, and side effects

to the kidneys or liver (48) (see ch. 6). To improve mechanical ventilation, these harmful effects must be minimized.

High-Frequency Ventilation

High-frequency ventilation (HFV) is a form of mechanical ventilator support that differs from conventional modes of ventilation in both relative tidal volume (i.e., volume of gas exhaled in one breath) and

respiratory rate (29). Recently, HFV has gained support based on the concept that oscillatory flow can

accelerate diffusion and is adequate for gas transport

(23). Although there is no uniform definition, HFV is

usually characterized by tidal volumes less than or

equal to anatomic dead space and frequencies at least

twice the resting respiratory rate (l). HFV maybe useful for elderly patients because of their likelihood of

decreased regional lung compliance. HFV renders lung

compliance relatively unimportant (29). However, despite the theories as to why HFV should work, the technique has shown surprisingly little success so far (38).

There are basically three kinds of HFV systems: open,

closed, and pleural surface systems (29). In an open

HFV system, a port is open to the atmosphere at all

times to allow the escape of exhaled gases. This system requires no pneumatic seal at the airway opening; however, gas pressures and flows in the airway

may still be adjusted (29). The airway in a closed HFV

system is isolated from the atmosphere during the inspiratory phase of the ventilator cycle, thus assuring

that the total tidal volume generated by the ventilator

enters the respiratory system (29).

Recently, a new type of closed ventilator has been

developed. The system is completely sealed and thus

has the advantage that oscillatory pressure cannot leak

from it. A portable HFV system using a miniature motor has been developed at NU-TECH Industries, Inc.,

with the assistance of a grant from the National Institutes of Health. The unit will provide 5 to 10 liters per

minute of extra ventilation to elderly patients with

chronic obstructive pulmonary disease, for example,

without increasing the work of breathing by the patient. An improved system with a portable configuration, high reliability, and simple control features would

greatly enhance long-term home treatment (48).

Pleural surface I-WV systems employ oscillations at

the chest wall rather than at the airway. This has the

advantage of not requiring airway access but has the

disadvantage that the transfer of oscillatory energy

to the lung maybe technically difficult. This technique

may ultimately prove valuable in giving mechanical

assistance to patients with incipient respiratory failure (48).

Experiments on laboratory animals showed that normal gas exchange can be maintained with this system

for extended periods when the animals are anesthetized and paralyzed to prevent spontaneous breathing. A vest-like device for HFV by vibration of the chest

wall is being tested on patients with respiratory failure (5).

Extracorporeal Membrane Oxygenation

Extracorporeal membrane oxygenation (ECMO) is a

complex treatment for patients in acute respiratory

failure. ECMO involves threading a tube into the heart

to carry blood outside the body to an artificial lung

machine, where the blood is oxygenated and then

returned to the body. Oxygenation and removal of carbon dioxide are achieved using passive diffusion across

a membrane similar to that used in hemodialysis.

ECMO avoids the drawbacks of mechanical ventilation

—high airway pressure and high oxygen concentration—while allowing the lungs to rest. In the early years

of its development in the 1970s, available data suggested that ECMO increased the likelihood of survival

for patients with certain types of acute lung injury (89).

However, the use of ECMO in adults decreased rapidly as evidence began to suggest that although the

technology can support respiratory gas exchange, it

does not increase the probability of long-term survival

in patients with severe acute respiratory failure (38,89).

There are fundamental limitations to this therapy,

particularly for elderly patients. The best candidates

for ECMO are patients in reversible acute respiratory

failure; it has little therapeutic value for patients with

chronic progressively deteriorating respiratory insufficiency, which may be more typical among elderly

patients 3 (48). In addition, acute respiratory distress

is often a manifestation of multiple organ failures (70);

thus, the primary therapy may be more appropriately

directed to other organs or organ systems. Finally, a

major study found no improvement in survival rates

with ECMO except in very special circumstances (79).

However, experience with ECMO could ultimately lead

to a portable artificial lung for long-term use (48).

Ventilation Supplemented by

Extracorporel Technologies

A relatively new approach for treating acute respiratory failure dissociates the two main respiratory

functions, i.e., transport of oxygen and removal of carbon dioxide. Oxygenation is accomplished by low-frequency, positive-pressure ventilation (LFPPV), to cause

diffusion through the diseased lungs and to preserve

>n contrast, ECMO is used for some infants with serious respirator}r prohIems because their lungs are more likely to heal
408 ● Life-Sustaining Technologies and the Elderly

pulmonary mechanics and volumes. The carbon dioxide is extracted by use of an extracorporeal membrane through a low-flow bypass, thus preserving pulmonary blood flow. The goals of this technique

(referred to as LFPPV-ECCO2R) are to keep the lungs

statically inflated to allow optimal oxygenation of blood,

avoid the local and systemic complications of continuous positive pressure ventilation, and enable lung healing (37).

Another possible treatment method would use highfrequency ventilation (HFV) along with a new (as yet

undeveloped) extracorporeal membrane. Gas exchange

would occur through the lungs with HFV but would

be supplemented by a low-flow gas exchange system

using a variation on a dialyzing membrane. Hemodialyzers have been found quite effective for the removal

of up to 50 percent of the carbon dioxide, but available membranes have a functional life of under 30

hours. The following improvements in oxygenation

membranes will be necessary if such a system is to

become a reality:

gas exchange capacity should last at least 1 week,

and the membrane should be easily replaceable

at the end of its functional life;

the membrane should have a small surface area

and be constructed of highly biocompatible material;

a simple, small, atraumatic pump that can function for at least 1 month must be developed; and

a simple and small priming volume system is

needed.

Development of a system meeting these criteria

would allow the reduction (or elimination) of anticoagulant administration and enhance the likelihood

of home treatment (48).

peritoneal Oxygenation and

Carbon Dioxide Removal

Another theory holds that peritoneal gas exchange

of oxygen and carbon dioxide is possible through a

method similar to peritoneal dialysis (see ch. 7). Although the oxygen transport capacity of the peritoneal

membrane is small, it maybe possible to augment this

by using a red blood cell substitute with a high oxygen-carrying capacity. The red blood cell substitute

would be saturated with oxygen and pumped into the

peritoneal cavity. Oxygen then would diffuse down a

concentration gradient into the tissues and blood supply of the peritoneum (7). Also, the use of a red blood

cell substitute for peritoneal oxygenation may facilitate the removal of carbon dioxide, since some such

substitutes have a relatively high carbon dioxide affinity (75). This method could also help wean some patients from mechanical ventilation and free other patients from tracheal incubation.

Future of Renal Dialysis

Research to prevent and reverse renal failure holds

potential to reduce chronic renal failure and deaths

from acute renal failure, both of which are prevalent

among elderly people.4

As discussed in chapter 7, dialysis is an empirical

therapy, meaning that treatment is determined by observing results in the individual patient rather than

based on an understanding of the basic physiological

mechanisms. Improvements in dialysis (or the development of an implantable artificial kidney) require

basic physiological research. Researchers will be severely limited in devising new technologies until they

identify specific parameters of ideal renal clearance.

For example, the ideal clearance of urea is not known.

Whether urea clearance is even an appropriate marker

for adequate removal of other toxic substances is a

subject of debate. Some experts believe the “middle

molecules” 5 are the substances responsible for the

symptoms of the uremic state and should be the focus

of filtration efforts, although the identification and toxicology of these substances have not been established

(77).

Improvements in conventional dialysis treatment will

most likely be in these areas:

devices and parts of the dialysis apparatus (e.g.,

dialyzers and catheters) to improve efficacy or reduce complications;

supplemental or adjunct therapies (e.g., absorbents or anticoagulants), also to improve efficacy

and reduce complications; and

the use of designs and techniques to enhance patient independence and mobility (e.g., CAPD, home

dialysis, and miniaturization of apparatus).

Related technologies, such as plasma exchange and

hemoperfusion, hold promise for arresting the progression of renal disease as well as for treating other

diseases, Plasma exchange has been cited for use in

a range of conditions, but proof of its efficacy is still

needed (48). For instance, the majority of references

on plasma exchange treatment are case reports, without any systematic or convincing evidence such as data

from controlled studies or clinical trials.

%ortality from acute renal failure in patients over age 70 currently approaches 80 percent (28).

%Vhile hemodialysis is effective in removing small molecules, substances

of higher molecular weight will not pass easily through the dialysis membrane. These so+alled “middle molecules” are thought to be uremic toxins

and causes of dialysis complications.
App. C—Future Developments in Life-Sustaining Technologies ● 409

A spectrum of technologies exists for the detoxification of blood, most of which are variations of hemodialysis. Approaches to blood detoxification fall into

two categories: extracorporeal and intracorporeal.

Extracorporeal approaches, including hemodialysis,

hemofiltration, hemoperfusion, and other techniques,

are characterized by the circulation of blood outside

the patient’s body. The intracorporeal approaches,

such as peritoneal dialysis, are characterized by action within the body; the blood does not leave the body,

although wastes must be disposed outside the body.

Hemodialysis

New hemodialysis products are regularly introduced.

Efforts have been directed toward developing supplemental and adjunct therapies used in dialysis, scaled

down dialysis equipment for patient convenience, and,

ultimately, a wearable artificial kidney.

Adsorbents.—Adsorbents are used to regenerate

and permit the reuse of dialysate and hemofiltrate. This

controversial practice would not be possible without

absorbents. They are also an important supplemental

therapy for dialysis and are especially important for

the development of a compact artificial kidney system.

One example, the Redy adsorbent system, operates

by enzymatic decomposition of urea by urease and adsorption of ammonium by zirconium phosphate. Creatinine, uric acid, and middle molecules are removed

by activated charcoal (48). The Redy system can also

be used for hemoperfusion, therapeutic hemapheresis, and as a dialysis monitor (14).

The oral administration of absorbents is also used

as a supplemental therapy for dialysis patients. A new

combination of oxystarch (dialdehyde starch) and activated charcoal administered orally has proven effective as a supplemental therapy to dialiysis (48). The

oxystarch combines with urea or ammonium and the

activated charcoal can adsorb creatinine, uric acid, and

certain other middle molecules. Oral absorbents must

be coated to prevent damage to the patient’s intestinal

mucosa and decreased efficiency due to competitive

adsorption of substances in the bowel tract. Because

the major problems accompanying dialysis in elderly

patients are poor blood access and an unstable cardiovascular condition caused by the strain of extracorporeal circulation, oral administration of absorbents

could be particularly beneficial because they could reduce or even eliminate the need for hemodialysis.

Membranes.—Semipermeable membranes are the

surfaces across which the diffusion of dialysis occurs.

One goal in the development of new membranes is improved biocompatibility. The majority of membranes

developed since the early 1970s have been modified

cellulosics or other synthetic materials. The older cellulosic membranes have been associated with complement activation,6 and may be responsible for the high

incidence and prevalence of infection in hemodialysis

patients. Newer membranes show improved biocompatibility, i.e., less reduction of blood cell counts (especially white blood cells), and lower complement activation. Also, dialysis with a new synthetic membrane

can be performed without anticoagulants (61). Most

recently, a membrane (polysulfone) with a high protein permeability has been found to lessen the complications of chronic dialysis (62). Despite the numerous

studies in this field, exact parameters of overall biocompatibility in blood purification systems are not well

established,

Anticoagulants. -The use of an anticoagulant, usually heparin, is necessary during dialysis to prevent

blood clots. However, chronic dialysis patients who use

heparin regularly may suffer adverse effects on complement activation (81), platelet function change (82),

lipid metabolism (22), and bone metabolism (48). Recently, new anticoagulants have been used to replace

heparin, and dialysis has even been attempted without any anticoagulant. Although these alternatives are

still experimental and have disadvantages (e.g., chemical instability, vasodilatory side effects), new drugs

may make it possible to minimize or eliminate the use

of heparin.

Dialysate.—Repeated exposure of the blood to dialysate is a problem because of chronic toxicity and

unproven biocompatibility. Strategies to reduce

dialysate-associated side effects include using a new

buffer, quality control of dialysate to eliminate trace

elements, and the reduction of the volume of dialysate per administration. For instance, a bicarbonate

buffer results in less hemodynamic instability and

other metabolic changes (49). Since dialysis systems

are incapable of preventing the toxicity caused by trace

elements combining with serum proteins, other means

must be devised, such as agents capable of combining

with and removing trace elements like aluminum, magnesium, and zinc, to prevent chronic toxicity (25,44,46).

Also, dimethylnitrosamine, a known precarcinogen,

has been reported in dialysate water; this may play

a role in the increased incidence of malignant tumors

in the dialysis population (50. Finally, a reduction in

the volume of dialysate used per treatment would result in less cumulative exposure and could minimize

the complications of such use.

‘iComp/ement is a constituent of normal (nonimmune) serum that is required in addition to a specific antibody to cause the immune destruction

of red blood cells and of certain bacteria. Complement consists of at least

17 proteins, which form a membrane attack complex. Complement acti~’a.

tion plays a role in the induction of inflammation, various aspects of immunological defense, and in the pathogenesis of various immunologically mediated diseases (68).
410 . Life-Sustaining Technologies and the Elderly

Portable or Wearable Dialysis Systems.—Several

methods to make dialysis more compact, and thus improve mobility and facilitate travel, are under investigation. For instance, some portable dialysis systems

have been developed. One is a wearable artificial kidney, the WAK-III, consisting of a pumping section and

an 18-liter reservoir, that was developed by investigators at Junken Co. (Japan) and the University of Utah.

The large reservoir is, however, a problem for portability. Investigators at the University of Tokyo have

been working on a more compact version, made possible by incorporating an adsorbent system to recycle

the dialysate. Combined with pump sections, battery,

and reservoir, this system weighs approximately 20

pounds. Another, lighter (10 pound) variation on the

same system has been developed at the University of

Tokyo. This simplified system, which is still in the

preclinical stages, includes urea adsorbent, charcoal,

ion-exchanger, and pump sections (48).

Another wearable continuous dialysis system is being developed by Research Development Systems of

Pasadena, CA. Although animal trials have not yet begun, most of the components for the system exist. The

proposed system would use 120 inches of dialysate tubing, holding 90 milliliters of blood outside the body

at any given time. The system would weigh about 5

pounds and would be held by a holster under one arm.

By continuously dialyzing blood, the system should

avoid the discomfort associated with the more rapid

cleansing of blood that occurs in traditional hemodialysis (39).

Continuous Arteriovenous

Hemofiltration

Continuous arteriovenous hemofiltration (CAVH)

utilizes water permeable membranes to remove excess fluids in acute renal failure. A hemofilter with

a small surface area, small volume, and minimum circuit length are required to prevent straining the heart.

Hemofihration may be performed using the patient’s

own blood pressure without a blood pump. This allows for hemodynamically stable withdrawal of excess

fluid without the use of elaborate extracorporeal circuits (66). (This method may also be used to provide

nutritional support (58).) It may be especially appropriate for elderly patients, who are at added risk of

developing multiorgan failure and often suffer nutritional, metabolic, acid-base, electrolyte, or hemodynamic abnormalities.

Continuous Ambulatory

Peritoneal Dialysis

The most important complication associated with

continuous ambulatory peritoneal dialysis (CAPD) is

peritonitis (see ch. 7). Two relatively new products

demonstrate the innovative approaches being investigated to control CAPD complications. DuPont’s Sterile

Connection Device (SCD) automatically makes a sterile splice between an air-filled extension tube of the

dialysate bag and the patient administration set–thus

eliminating the need to aseptically spike into the port

of the bag and reducing the risk of infection (9).

Another device to control infection irradiates with

ultraviolet light the critical connection between the

solution container and transfer set immediately before

spiking. It does not, however, eliminate the need for

aseptic practice (85).

Anemia Treatments

Practically all chronic dialysis patients eventually suffer from red blood cell anemias, requiring frequent

blood or red blood cell transfusions. The anemias stem

from the kidneys’ inability to make erythropoietin, a

hormone that controls the production of red blood cells

by the bone marrow (2 I). Erythropoietin can now be

mass-produced by genetic engineering. Patients receiving regular injections of the hormone need fewer blood

transfusions and have more energy (6).

Future of Nutritional Support

Nutritional support is used to provide necessary nutrients and fluids to patients who are unable for a variety of reasons to take in, digest, or absorb adequate

amounts of food or fluids (see ch. 8). Receiving nutritional support, however, can be an uncomfortable

experience for patients. Research on technology for

enteral nutrition focuses on new materials to make

feeding tubes more pliable, durable, and compatible

with the body’s own tissues and the composition of

nutritional support formulas. Innovations for parenteral nutrition are devices designed to minimize patient discomfort and complications, especially the socalled “tunnel” infections associated with the use of

catheters in long-term care.

Parenteral Nutrition

Even patients receiving meticulous care may develop

complications associated with catheters, including

thrombus formation, ’ structural failure, and infection. Research efforts are focused on reducing complications associated with the catheters used for parenteral administration. For example, the standard

polyethylene or silicone catheters in widespread use

7A thmmbus is essentially a blood clot, but is differentiated by the fact

that a thrombus frequently causes vascular obstruction at the point of its

formation, while a blood clot is more likely to be carried through the circula.

tory system.
App. C—Future Developments in Life-Sustaining Technologies ● 411

for total parenteral nutrition (TPN) have been associated with a 33 percent incidence of thrombus formation (34,56). To alleviate such complications, researchers hope to identify better biocompatible materials for

the catheters. Preliminary evidence from clinical investigation shows that the incidence of thrombophle -

bitis is lower with a polyurethane catheter than with

a silicone catheter (56). Another trial of polyurethane

catheters showed no evidence of venous thrombosis

(up to 820 days) without the administration of any

heparin (33). Another strategy maybe to coat catheters

with antimicrobial agents (35).

Vascular Access Devices.—Other attempts to minimize complications associated with TPN have focused

on developing implanted vascular access devices,

which consist of a self-sealing silicone rubber septum

encased in a port made of metal or plastic attached

to a silicone catheter. Fluids, drugs, and blood can be

administered into this port system by a simple needle

puncture through the skin into the port. These systems could lessen the potential for infection and be

more esthetically acceptable to patients. Also, the need

for dressing changes is eliminated (48).

Infusion Pumps. -Computerized infusion pumps

represent a dramatic improvement over gravity-flow

procedures in the accuracy of infusion volume (see

ch. 8), but could be improved. Some factors that may

require additional attention include: range and accuracy, flow rate continuity, operation during transport, resistance to tampering and accidents, memory

functions, alarm disable, battery life, electrical safety,

electromagnetic interference, quiet operation, ease of

use, and servicing (48).

Enteral Nutrition

Research on equipment for enteral feeding includes

two main areas. Some work is focused on the actual

tubes used to deliver formula. Using the smallest tube

that will allow for passage of the formula maximizes

patient comfort and tolerance. Other research focuses

on the electronic enteral pumps now being used to

maintain an accurate infusion rate and facilitate delivery of the viscous solution by applying continuous positive pressure.

Enteral formulas specific to the nutritional needs of

elderly people are not available. Nutritional support

specialists and industry representatives differ in their

views about whether such formulas could or should

be developed. The numerous commercially available

premixed enteral formulas differ in osmolarity, digestibility, caloric density, lactose content, viscosity, residue, fat content, taste, and cost (48). Customization

of enteral formulas according to individual needs

would be ideal; however, the capability of many longterm care facilities to accurately assess an individual’s

nutritional needs and provide the appropriate formula

lags far behind this ideal, primarily because they lack

trained personnel (see ch. 8).

Some research is looking at nutritional support as

a way to treat diseases, not simply to correct malnutrition. For instance, evidence shows that dietary manipulation can substantially slow the loss of renal function

at early and late stages of chronic renal disease (60).

Adjustment of fat intake can reduce the retention of

carbon dioxide, a problem for some ventilation patients. Rheumatoid arthritis, diabetes, chronic obesity,

and heart disease may be ameliorated by nutritional

therapy (45).

Extracorporeal Blood Treatment

Some extracorporeal blood treatment technologies

may have applications for improving the nutritional

status of very ill elderly patients by means of immunometabolic support. For instance, therapeutic hemapheresis, especially on-line plasma treatment with the return of essential nutrients, is an approach to preserving nutritional and immunological homeostasis. The

treatment may be used to filter off the pathological

macromolecules associated with certain diseases and

then to add essential nutrients to the plasma being

returned to the patient. Certain plasma treatment technologies result in the discarding of a portion of the

plasma, which may result in further nutritional depletion in patients whose nutritional status may already

be compromised; therefore, use of extracorporeal technologies must be considered carefully (48).

Future of Antibiotic Therapy

New strategies to cope with life-threatening infections span a variety of research areas, including new

drugs and techniques for developing drugs, the metabolism of drugs in elderly patients, drug delivery systems, and manipulation of the immune system.

Antibiotic Development

More than three dozen new antibacterial will be

approved by the FDA by 1991, according to one industry report (80). The development of new drugs

takes advantage of new manufacturing opportunities,

such as genetic engineering, computer-assisted design

of pharmaceuticals, and, potentially, pharmaceutical

manufacturing in space. Ongoing antibiotic development will quicken as the pharmaceutical industry

masters new biotechnology techniques. New or nextgeneration antibiotics could significantly improve antibiotic therapy, but early information on the develop-
412 . Life-Sustaining Technologies and the Elderly

ment of new antibiotics is not easy to obtain because

of the proprietary nature of most pharmaceutical research and development.

Antibiotics are developed by screening compounds

from natural sources, often soil molds, and often chemically modifying these substances. Such modification

can broaden or narrow the antibiotic’s range of activity (80). The most significant contribution of new antibiotics may be in conquering bacteria that are resistant to the usual drug of choice (e.g., penicillin,

tetracycline).

Two recently developed antibiotics can act against

a wide spectrum of bacteria, including many infections

that are resistant to other antibiotics. Primaxin, developed by Merck, is especially useful against multiorganism infections and infections caused by bacteria

that are resistant to other antibiotics (19). Aztreonam,

recently approved by the FDA, acts against gram-negative bacteria, the cause of about half of all nosocomial

infections. Because Aztreonam does not induce bacterial synthesis of a particular enzyme, bacteria should

be slow in developing resistance to this drug (24).

Along with new drugs, better application of existing

drugs can be expected in the coming years. Recent

medical literature highlights the lack of complete information on the pharmacological effects of drugs in

elderly people. Research to identify proper geriatric

dosages and to eliminate, or at least reduce, adverse

effects and toxicity is crucial to safe and effective treatment of infection in the elderly, particularly since compromised immune systems and polypharmacy are

more likely in elderly patients (see ch. 9). Some

progress may be made toward these problems with

the development of computer programs to perform

tasks such as checking new prescriptions for compatibility with other prescriptions or issuing prescription

guidelines with age-adjusted dosages. One computer

system under development, for example, constantly

monitors indications for antibiotic therapy and reports

its medical decisions to physicians, thus bringing potentially life-saving information to their attention (3 I).

Drug Delivery Systems

Traditional methods of introducing drugs into the

body include oral, topical, nasal, intravenous, intramuscular, subcutaneous, and intrathecal (into the spinal

column) administration. Certain drugs are only suitable for particular delivery methods. In recent years,

considerable effort has been devoted to developing

new technologies for drug delivery. Among the innovations that may be particularly important for elderly

patients are sustained or timed-release drugs, targeted

antibiotics (high local but low general levels), and monitoring systems that assure proper therapeutic levels

of the drug in the bloodstream. More precise control

over dose maintenance can reduce the toxicity and side

effects associated with serial administration (very high

immediately after introduction, decreasing over time).

Sustained- or automatic-release drugs may also protect against forgotten medication and dosage mistakes.

Directed delivery systems are especially important for

treating localized infections and controlling the administration of toxic drugs.

The emphasis on alternate-site care will fuel demand

for alternate drug delivery systems. Oral and other

self -administered drugs and timed-release drugs often

reduce the need for conventional nursing and physician services, thus lowering personnel costs and increasing opportunities for nonhospital care. Since

drugs have differing characteristics and patients have

differing medication needs, personal preferences,

treatment sites, degrees of independence, and other

needs, alternatives to traditional drug delivery systems

will affect quality of care.

Some drug delivery systems under development will

provide feedback, such as information on the location

and level of drugs in the body, so that treatment may

be modified as necessary. Other feedback systems automatically regulate the release of a drug by responding

to environmental stimuli. Some delivery systems are

described in table C-2. It is not yet clear which systems may come to play a useful role in the treatment

of life-threatening infections in elderly people.

Intravenous Antibiotic Administration.—Intravenous (IV) administration of antibiotics allows either

continuous or intermittent delivery of antibiotics

directly into the bloodstream. Although electrically

powered and electronically controlled infusion pumps

have allowed better control over the rate of delivery,

other improvements are needed to reduce the complications of intravenous administration. The most frequent complication of IV therapy is infection as a direct

result of the surgical insertion of a catheter, because

the opening through the skin provides easy access for

bacteria. The most imminent improvements are modified vascular access devices designed to eliminate infection.

“Microscopic” Delivery Systems. -Other drug delivery systems operate on a microscopic level–i.e.,

drugs are delivered by grouping or repackaging drug

molecules. One theoretical approach is to develop polymeric forms of individual drugs, which are more stable, less toxic, and capable of slow release of active

units. However, research to synthesize useful polymeric drugs (including antibiotics) has been unsuccessful so far (48).

A more feasible approach to drug delivery on the

molecular level is encapsulation, a process in which

pharmaceuticals are packaged inside a biodegradable
Table C-2.—Drug Delivery Systems Under Development

Type of system Primary advantages Description Comments

 ., . ,

Implantable intusion pump

Oral osmotic “pill” pump

Implantable osmotic pump

Biodegradable implant

Ferrofluids

Self-regulated, chemically

modulated systems

Sustained constant release

Sustained release; passes

naturally through body

in about 24 hours

Sustained, local release

Sustained, local release

Directed delivery

Automatic regulation of

rate of release

One model utilizes a Chemical pump—a

fluorocarbon inside the device vaporizes

and exerts pressure on a “tiny bellows”

that drives the drug out

Consists of a drug-filled core, surrounded by

a semipermeable polymer membrane which

lets gastric juice in. As the fluid enters,

the pressure inside the membrane builds,

and the drug is pumped out evenly through

a tiny laser-drilled hole in the membrane

Relies on membrane-controlled osmosis for

drug delivery

One type of implant utilizes a biocompatible

plastic, called Polyhydroxybutyrate (PHB),

which is created by bacteria

Biocompatible magnetic shavings could be

suspended in drugs, then the drugs could

be injected and then directed to and

retained at specific treatment sites by an

externally applied magnetic field

Releases drugs in response to a particular

environmental stimulus

Single-use pumps; require surgical implantation and removal; unresponsive to changes

in environment; not yet used for antibiotic

delivery

Successfully tested in clinical trials; not yet

used for antibiotic delivery, although tested

on several other drugs

Successfully tested in animals for antibiotic

delivery; requires surgical implantation and

removal; significant technical questions

remain unanswered

Some capable of drug release for over 60

days; does not require removal; obstacle

often cost-effective production of implant

materials

Still in early research stages; originally developed by NASA; not yet applied to drug (or

antibiotic) delivery

Experimental systems have little therapeutic

relevance so far; a practical application

might be one which released penicillin in

response to the bacteria in the bloodstream

SOURCES: Biomedical Business International, Drug Delivery Systems, Technology, Companies and kfarket, Report #7016 (lustin, CA: April 1985).

J. Heller, “Self-Regulated Drug-Delivery Systems,” Medica/ Device and Diagnostic /rrdustry 7(9):33-37, 1985.

International Center for Artificial Organs and Transplants, “Future Developments in Life-Sustaining Technologies,” prepared for the Office of Technology Assessment, U.S. Congress Washington,

DC January 1986.

J. Langone, “Designer Drugs and Pill Pumps, ” Discover 5(1):28-31, January 1984.

CR. Perry, S. Rise, J.K. Ritterbursch, and R.E. Burdge, “Local Administration of Antibiotics With an Implantable Osmotic Pump,” C/irrica/ Orthopedics and Ffe/ated Research 192:284-290, 1985.
414 • Life-Sustaining Technologies and the Elderly

microcapsule, either for sustained-release or for local

concentration of the drug. The process also protects

unstable molecules from the immediate environment,

protects body tissue from certain drugs, inhibits toxicity and anaphylaxis by avoiding large doses, and

masks unpleasant tastes and odors. However, scaling

up production methods for industrial volumes can

present a variety of problems. Such difficulties can result from sensitive environmental requirements for

production or prohibitively expensive reagants (64).

Three of the materials being investigated for drug encapsulation are described in box C-3.

A critical factor in the treatment of infection in

elderly people is the natural change in the immune

system associated with aging. In addition, the immune

response in ill elderly people may differ considerably

from that of healthy elderly people. Therefore, optimal

treatment would require a good understanding of both

normal, age-associated changes and abnormal, diseaserelated changes, and the ability to compensate for

them. Infusion of fresh leukocytes or lymphocytes has

been attempted, as well as the use of sophisticated sorting technologies to separate and infuse only certain

subsets of cells (e.g., T-cells or B-cells) (48). Immunoactivation refers to the intentional manipulation of

processes of the immune system to stimulate a specific immune response, such as complement activation

or interferon therapy. Immunadsorption refers to extracorporeal plasma treatment with absorbents to remove abnormal immunocomplexes. Although these

techniques are still experimental, investigators hope

that their use will someday enhance the effectiveness

of treatment for infection in immunocompromised patients,

Technologies To Diagnose Infection

Treatment decisions for infections in elderly people

are often complicated by compromised immune function, the presence of comorbidities, and multiple infections. In all cases, good treatment depends on rapid

and accurate diagnosis. New biotechnologies, such as

monoclinal antibodies and DNA probes, present a major opportunity to improve diagnostic methods because

of their ability to recognize infectious agents with a

high degree of specificity. If biotechnology is successfully merged with sophisticated computer scanners,

rapid diagnoses should be possible through the analysis of blood or other body fluids, thereby allowing

earlier selection of therapy (30).

In certain infections, identifying the pathogenic

organism is the easy part. More difficult is locating the

site of the infection to determine the appropriate

course of treatment. But physicians do not yet have

the means of locating all infections. The example of

single-dose antibiotic treatment for urinary tract infections described in box c-4 demonstrates the nature

of the diagnostic problem and efforts toward its resolution.
App. C—Future Developments in Life-Sustaining Technologies ● 415

BOX C-4.—Single-Dose Antibiotics

Urinary tract infections (UTIs) are easily identified

by a positive urine culture. However, current tests used

to diagnose UTIs are incapable of differentiating between deep tissue and superficial mucosal infections

because the test is only capable of identifying the

organism. Further, the disposition of UTIs is very different in men and women. In women, UTIs are very common and the great majority of infections [about 80 percent) are superficial mucosal infections; only a small

group are deep tissue infections (i.e., bacterial infection of the kidney). In contrast, the vast majority of

UTSs in men are deep tissue infections (e.g., prostate)

(73).

The significance of this diagnostic insufficiency is

that the great majority of supeficial mucosal infections respond to a single dose of antibiotics, but deep

tissue infections require an extended course (4 to 6

weeks) of antibiotic treatment. Thus, “diagnosis” of

deep tissue infections is really the use of an algorithmic approach that divides patients according to their

response to a single-dose of antibiotics. The goal of

current research is to devise an assay that can stratify

patients into treatment groups (single-dose or extended

course) at the time of their initial diagnosis. Such a

test would prevent the expense and risk associated

with long-term antibiotic treatment. One specific approach to the development of such a test involves examining bacterial virulence factors; it is believed that there

are identifiable markers that are correlated with the

likelihood of deep tissue infections (73).

Little research has been done specifically on elderly

patients. UTSs are frequently asymptomatic in elderly

patients. Some physicians contend that it is not necessary, and possibly even improper, to treat asymptomatic UTIs in elderly patients. It has been demonstrated that if asymptomatic UTIs are treated, and the

infection fails to respond to the antibiotic, the patient

in relapse may experience painful or uncomfortable

symptoms, which previously were not exhibited. Thus,

some question the wisdom of altering what seems to

be a natural symbiosis (73).

Conclusion

Current research and development holds promise

for improving both the quality of medical care and the

quality of life for many patients dependent on lifesustaining technologies. Future developments could

make treatments more effective, more comfortable,

more portable, cheaper, and less invasive. These

changes will occur as existing technologies are improved and new technologies are created. For some

patients, however, improvements in the technologies

may only serve to extend the period of pain and suffering caused by their underlying disease. The technologies themselves will not resolve the difficult dilemmas

created by the advances of modern medical science.

Thus, improvements in prognostic tools and decisionmaking are also needed.

Prevention of life-threatening diseases maybe more

effective at reducing the incidence of illness and premature death than incremental improvements in life-sustaining technologies. But prevention, even if broadly

and successfully implemented, will not obviate lifesustaining technologies. If preventive measures for

heart disease were widely implemented, for example,

other life-threatening illnesses would become more

common.

Widespread implementation of preventive strategies

is always difficult. The strategies discussed for preventing heart disease, for instance, are inconsistent

and confusing. Even more significant is the low level

of motivation that many people have for preventive

health behavior before they become ill. Strategies for

secondary prevention, at the time of symptom onset,

may thus be more feasible, As preventive strategies

are developed, policymakers may need to make more

explicit decisions about the relative commitment of resources to preventive programs.

The technologies described in this appendix are only

examples of a wide range of R&D efforts that are

underway. Many other technologies could have been

included. Some potential technologies will never be

clinically used, while others will soon become standard procedures. Each technology may eventually find

different applications from those described here, and

new developments will make possible technologies not

yet imagined, Decisions made in the next few years

by researchers, manufacturers, providers, patients,

and policymakers will determine which technological

developments become available in the next decade and

how they are used.

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American Medical News 29:82, Jan. 10, 1986.
416 ● Life-Sustaining Technologies and the Elderly

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3 8 .

3 9 .

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41.

4 2 .

4 3 .

4 4 .

4 5 .

4 6 .

4 7 .

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Hilts, P.J., “FDA Clears 2 New Methods of Treating Heart

Ailments,” Washington Post, p. Al, Oct. 11, 1985.

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426-432, 1986.

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Hull, S., Director, Medical Nutritional, Abbott International, Chicago, IL, personal communication, April 1987.

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Journal of Artificial Organs) 14:195, 1985.

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App. C—Future Developments in Life-Sustaining Technologies ● 417

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Related ,“ Transactions of the American Society for Artificial Internal Organs 30:159, 1984.

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in Dialysate Water, ” Transactions of the American Sc)ciety of Artificial Internal Organs 27:168, 1981.

51. Klein, A.J., “Biomaterials Give New Life, ” Advanced Materials and Processes 2(5):18-22, 1986.

52. Knaus, W., Director of ICU Research, George Washington University Medical Center, Washington, DC, personal

communication, February 1986.

53. Koster, R. W., and Dunning, A.J., “Intramuscular Lidocaine for Prevention of Lethal Arrhythmias in the Prehospitalization Phase of Acute Myocardial Infarction,”

New ~ng]an~ Journal of Medicine 313(18):1105-1110,

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5(1):28-31, 1984 .

55. Lefton, D., “New Generation of Artificial Heart Near, ”

American Medical News 28:1, 27, June 7, 1985.

56. Linder, L. E., Curelaru, 1, Gustavsson, B., et al,, “Material

Thrombogenicity in Central Venous Catheterization: A

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57. Mahoney, B. D., and Mirick, M.J., “Efficacy of Pneumatic

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58. Mault, J. R., Kresowik, T. F., Dechert, R.E., et al., “Continuous Arteriovenous Hemofiltration: The Answer to Starvation in Acute Renal Failure?” Transa&”ons of the American Society for Artificial Internal Organs 30:203, 1984.

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60. Mitch, W. E., “The Influence of the Diet on the Progression of Renal Insufficiency, ” Annual Review of Medicine

35:249-264, 1984.

61. Naito, H., Miyazaki, T., Yamane, T., et al., “SEM Study

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of Protein Permeating Hemodiafilter-PS AK-Analysis of

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63. National Science Foundation, “9$%. Increase in CompanyFunded Research and Development Planned for 1986,”

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418 ● Life-Sustaining Technologies and the Elderly

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Appendix D

NRCBL International Directory of

Bioethics Organizations

NATIONAL REFERENCE CENTER FOR BIOETHICS LITERATURE

Kennedy Institute of Ethics

Georgetown University

Washington, DC 20057

(202) 625-2383

(800) MED ETHX

Director: Doris Goldstein, M. L. S., M.A.

INTERNATIONAL DIRECTORY OF BIOETHICS ORGANIZATIONS

Compiled by

Robert C. Iosco

This directory is supported by funds provided under Grant No. LM04492 from The National Library of Medicine, National Institutes of Health

Bioethics consists of the application of ethical reasoning to dilemmas in the biomedical or life sciences. This

directory lists organizations that have a professed interest in the study of bioethics and serves as a resource

for those who wish to pursue bioethical issues in more detail. The organizations listed represent a variety of

types of programs.

The following list, which is current as of June 1987, is continually updated by the staff at the National Reference Center for Bioethics Literature:

CALIFORNIA Program in Medical Ethics

Center for Bioethics Department of Medicine

St. Joseph Health System Div. Pulmonary & Critical Care Medicine

440 South Batavia Street UCLA School of Medicine

Orange, CA 92668 Los Angeles, CA 90024

Telephone: (714) 997-7690 Telephone: (213) 825-2371

Director: Sr. Corrine Bayley Director: Leslie Steven Rothenberg, J.D.

Joint Program in Bioethics

Health Policy Program

School of Medicine

1326 Third Avenue

San Francisco, CA 94143

Telephone: (415) 666-3093

Director: Albert R. Jensen, Ph.D.

Loma Linda University

Center for Christian Bioethics

Division of Religion

Loma Linda, CA 92350

Telephone: (714) 824-4956

Director: David Larson, Ph.D.

Society for Bioethics Consultation

P.O. Box 10145

Berkeley, CA 94709

Telephone: (415) 486-0626

Director: John Golenski, S. J., Ed.D.

Pacific Institute for Biomedical Education

and Research

P.O. Box 1143

Solvang, CA 93463

Director: Teresa A. Takken, Ph.D.

419

63-216 0 - 87 - 11 : QL 3
420 . Life-Sustaining Technologies and the Elderly

COLORADO

Center for Applied Biomedical Ethics

Rose Medical Center

4566 East Ninth Avenue

Denver, CO 80220

Telephone: (303) 320-2895

Director: Fredrick R. Abrams, M.D.

CONNECTICUT

Pope John Paul II Bioethics Center

Holy Apostles College and Seminary

Cromwell, CT 06416

Telephone: (203) 635-5311

Director: Fr. Francis Lescoe

DELAWARE

Center for Science and Culture

University of Delaware

28 West Delaware Avenue

Newark, DE 19711

Telephone: (302) 738-8194

Director: Paul T. Durbin, Ph.D.

DISTRICT OF COLUMBIA

Biomedical Ethics Board—U.S. Congress

c/o Senator Albert Gore, Jr.

United States Senate

Washington, DC 20510

Telephone: (202) 224-4955

Center for Bioethics

Kennedy Institute of Ethics

Georgetown University

Washington, DC 20057

Telephone: (202) 625-2383

(After fall 1987: (202) 687-3885)

Director: LeRoy Walters, Ph.D.

Center for Law and Religious Traditions

Catholic University Law School

Washington, DC 20064

Telephone: (202) 635-5140

Director: George P. Smith, J.D.

Division of Health and Humanities

School of Medicine, Georgetown University

3900 Reservoir Rd., N.W.

Washington, DC 20007

Telephone: (202) 625-2282

Director: Warren T. Reich, S.T.D.

FLORIDA

Bioethics Institute at St. Francis Hospital

250 West 63rd St.

Miami Beach, FL 33141

Telephone: (305) 868-5000

ILLINOIS

Center for the Study of Ethics in the Professions

Illinois Institute of Technology

Chicago, IL 60616

Telephone: (312) 567-6913

Director: Martin Pimsler

Center for the Study of Medical Ethics

Pritzker School of Medicine

Box 72—University of Chicago

Chicago, IL 60637

Telephone: (312) 962-1453

Director: Mark Siegler, M.D.

Council on Ethical & Judicial Affairs of

American Medical Association

535 North Dearborn Street

Chicago, IL 60610

Telephone: (312) 645-5000

Director: William J. Tabor

Ethics Program—Philosophy Department

Loyola University of Chicago

820 North Michigan Avenue

Chicago, IL 60611

Telephone: (312) 508-2297

Director: Thomas Wren

Medical Humanities Program

Loyola Medical Center

2160 South First Avenue

Maywood, IL 60153

Telephone: (312) 531-3433

Director: David C. Thomasma

The Park Ridge Center

1875 Dempster Street, Suite 175

Park Ridge, IL 60068

Telephone: (312) 696-6399

Director: Martin E. Marty, President

INDIANA

Human Genetics & Bioethics Education Lab

College of Sciences and Humanities

Ball State University

Muncie, IN 47306

Telephone: (317) 285-8840

Director: Dr. Jon R. Hendrix

Director: Rev. James J. McCartney, OSA, Ph.D.
App. D—NRCBL International Directory of Bioethics Organizations ● 421

MARYLAND

National Institutes of Health

Bioethics Program—Clinical Center

Building 10, Rm. 1A-15

Bethesda, MD 20014

Telephone: (301) 496-2429

Director: John C. Fletcher, Ph.D.

Office for Protection from Research Risks

National Institutes of Health

Building 31, Room 4B-09

Bethesda, MD 20205

Telephone: (301) 496-7005

Director: Charles R. McCarthy, Ph.D.

MASSACHUSETTS

American Society of Law and Medicine

765 Commonwealth Avenue

Boston, MA 02215

Telephone: (617) 262-4990

Director: Larry Gostin, J.D.

Center for Law and Health Sciences

School of Law, Boston University

209 Bay State Road

Boston, MA 02215

Telephone: (617) 353-2910

Director: George J. Annas, J.D.

Kennedy Interfaculty Program in Medical Ethics

Harvard University

688 Huntington Avenue

Boston, MA 02115

Telephone: (617) 732-1065

Director: William J. Curran, J.D., LL.M.

Pope John XXIII Medical-Moral Research &

Education Center

186 Forbes Road

Braintree, MA 02184

Telephone: (617) 848-6965

Director: Fr. William M. Gallagher, Pres.

MINNESOTA

School of Public Health

University of Minnesota

420 Delaware Street, S.E.

Minneapolis, MN 55455

Telephone: (612) 373-8055

Director: Mila A. Aroskar, R. N., Ed.D.

Center for Biomedical Ethics

University of Minnesota

3-105 Owre Hall, Box 33 Mayo

420 Delaware Street, S.E.

Minneapolis, MN 55455

Telephone: (612) 625-4917

Interim Director: Diane Bartels

Minnesota Network for Institutional

Ethics Committees

c/o Minnesota Hospital Association

2221 University Avenue, S.E.

Suite 425

Minneapolis, MN 55414

Telephone: (612) 331-5571

Director: Evelyn Van Allen, M.P.H.

MISSOURI

Committee on Ethics

American Nurses Association

2420 Pershing Road

Kansas City, MO 64108

Telephone: (816) 474-5720

Director: Kathleen M. Sward

Division of Health Care Theology and Ethics

Catholic Health Association

4455 Woodson Road

St. Louis, MO 63134

Telephone: (314) 427-2500

Director: Laurence J. O’Connell, PH. D., S.T.D.

Midwest Center for Bioethics

1200 East 104th Street

Suite 217

Kansas City, MO 64131

Telephone: (816) 942-1992

Director: Hans Uffelmann,

NEW HAMPSHIRE

The Ethics Institute

Dartmouth College

Hanover, NH 03755

Telephone: (603) 646-7532

Co-Directors: C.M. Culver,

Green, Ph.D.

NEW JERSEY

Ph.D.

M. D., Ph.D. R.M.

Commission on Legal & Ethical Problems in

the Delivery of Health Care

321 West State Street, CN 061

Trenton, NJ 08625

Telephone: (609) 393-0730

Director: Connie Myers
422 ● Life-Sustaining Technologies and the Elderly

NEW YORK

Center for Study of Society & Medicine

Columbia University

College of Physicians & Surgeons

630 West 168th Street

New York, NY 10032

Telephone: (212) 305-4184

Director: David Rothman, Ph.D.

The Hastings Center

Institute of Society, Ethics, and the Life Sciences

255 Elm Road

Briarcliff Manor

New York, NY 10510

Telephone: (914) 762-8500

Director: Daniel Callahan, Ph.D.

Institute on Human Values in Medical Ethics

Elmwood Hall

New York Medical College

Valhalla, NY 10595

Telephone: (914) 993-4000

Director: Samuel H. Rubin, M.D.

Manhattan College Center for Professional Ethics

Manhattan College Parkway

Riverdale, NY 10471

Telephone: (212) 920-0114

Director: John Wilcox, Ph.D.

New York State Task Force on Life and the Law

33 West 34th Street

Third Floor

New York, NY 10001-3071

Telephone: (212) 613-4286

Director: Tracy E. Miller, J.D.

OHIO

Cleveland Clinic Foundation

Department of Bioethics

9500 Euclid Avenue

Cleveland, OH 44106

Telephone: (216) 444-8720

Director: George A. Kanoti, S.T.D.

PENNSYLVANIA

Center for Medical Ethics

University of Pittsburgh

Loeffler Building

121 Meyran Avenue

Pittsburgh, PA 15213

Telephone: (412) 621-3874

Co-Directors: Alan Meisel, J.D. Kenneth

Schaffner, M. D., Ph.D.

Department of Humanities

Milton S. Hershey Medical Center

Pennsylvania State University

College of Medicine

Hershey, PA 17033

Telephone: (717) 534-8778

Director: E.A. Vastyan, B.D., L.H.D.

TENNESSEE

Program on Human Values and Ethics

University of Tennessee—Memphis

956 Court Street

Room B324—Coleman Building

Memphis, TN 38163

Telephone: (901) 528-5686

Director: Terrence Ackerman

TEXAS

Center for Ethics

Medicine & Public Issues

Baylor College of Medicine

Texas Medical Center

Houston, TX 77030

Telephone: (713) 799-6290

Director: Baruch Brody, Ph.D.

Institute for the Medical Humanities

The University of Texas Medical Branch

Galveston, TX 77550

Telephone: (409) 761-2376

Director: Ronald A. Carson, Ph.D.

VIRGINIA

Center for the Study of Health Care Issues

University of Virginia

Charlottesville, VA 22903

Telephone: (804) 924-3741

Co-Directors: Oscar Thorup, Ph.D. & James

Childress, Ph.D.

Center of Nursing Ethics

George Mason University

Fairfax, VA 22030

Telephone: (703) 323-2669

Director: Mary Silva, Ph.D., RN

Ethics Forum

1360 Beverly Road

Suite 201

McLean, VA 22101

Telephone: (703) 790-3480

Director: Kurt Darr, J.D.

Society for Health and Human Values

1311A Dolley Madison Boulevard

Suite 3A

McLean, VA 22101

Telephone: (703) 556-9222

Director: George K. Degnan
App. D—NRCBL International Directory of Bioethics Organizations ● 423

WASHINGTON

Bioethics Program, Department of Nursing

Gonzaga University

E. 502 Boone Avenue

Spokane, WA 99258

Telephone: (509) 328-4220

Director: Theresse Douglass, M. N., C.R.N.

Northwest Institute of Ethics and

the Life Sciences

1416 East Thomas Street

Seattle, WA 98112

Telephone: (206) 322-1555

Director: Catherine C. Morrow, Esq.

WISCONSIN

The Center for the Study of Bioethics

Medical College of Wisconsin

8701 Watertown Plank Road

Milwaukee, WI 53226

Acting Director: Robyn S. Shapiro, J.D.

Institute for Health Policy & Law

University of Wisconsin

Stevens Point, WI 54481

Telephone: (715) 346-5000

Director: David A. Peters

Program in Medical Ethics

University of Wisconsin

470 North Charter Street

Infirmary 2

Madison, WI 53706

Telephone: (608) 263-3414

Director: Norman Fost, M.D.

ARGENTINA

Instituto de Humanidades Medicas

Cane 8

No. 706

La Plata Argentina

AUSTRALIA

Centre for Bioethics

12 Clarence Street

Burwood

New South Wales

Australia 2134

Telephone: 6102-7452364

Director: Dr. T. Connolly

Centre for Human Bioethics

Monash University

Clayton

Victoria 3168

Australia

Telephone: (03) 541-0811

Director: Prof. Peter Singer

Dietrich Bonhoeffer International Institute

for Bioethical Studies

G.P.O. BOX 588

Adelaide

South Australia 5001

Telephone: (08) 267-5655

Director: Dr. Daniel Overduin

Goody Centre for Bioethics

St. John of God Hospital

P.O. Box 14

Subiaco

Western Australia 6008

Australia

Telephone: 6109-3826111

Director: Rev. W.J. Uren, S.J.

Provincial Bioethics Centre

Mater Hospital

18 Clarence Street

South Brisbane

Queensland 4101

Australia

Telephone: 6107-448708

Director: Sr. Regis Mary Dunne, R.S.M.

St. Vincent’s Bioethics Centre

St. Vincent’s Hospital

Victoria Parade

Fitzroy

Victoria, 3065 Australia

Director: Mr. N. Tonti-Fillipini

BELGIUM

Centre d’etudes bioéthiques

Boite UCL 4534

Promenade de I’Alma, 51

Brussels, Belgium B-1200

Telephone: 02/764.43.32

Director: Jean-Francois Malherbe

Johannes XXIII Seminarie

Herestr. 51

Leuven, Belgium 3000

Telephone: 016-224158

Director: Paul Schotsmans

BULGARIA

Medical Ethics Working Group

Bulgarian Philosophical Society

U1. Moskowska 27-6

Sofia 1000 BULGARIA

Telephone: 87-11-76

Director: Prof. Dr. Vassil Prodanov
424 ● Life-Sustaining Technologies and the Elderly

CANADA

Cardinal Carter Centre for Bioethics

University of St. Michael’s College

81 St. Mary’s Street

Toronto, Ontario

Canada M5S 1JF

Telephone: 416-926-7123

Director: Rev. Jack Gallagher, C.S.B.

Centre for Bioethics

Clinical Research Institute of Montreal

110 Pine Avenue, West

Montreal, Quebec

Canada H2W 1R7

Telephone: (514) 842-1481

Director: Dr. David J. Roy

Protection of Human Life Project

Law Reform Commission of Canada

130 Albert Street

Ottawa, Ontario

Canada K1A OL 6

Telephone: (613) 996-7844

Director: Jean-Louis Baudoin

Westminster Institute for Ethics and Human

Values

Westminster College

London, Ontario

Canada N6G 2M2

Telephone: 519-673-0046

Director: Abbyann Lynch, Ph.D.

CHINA

Medical Ethics Group

Academy of Social Sciences

Beijing CHINA

Telephone: 507744

Director: Prof. Dr. Qiu Renzong

COLOMBIA

Instituto Colombian de Estudios Bioethics

Cane 65, N, 9-39, Of. 202

Bogota 2 D.E. Colombia

Telephone: 2353896

Director: Dr. Fernando Sanchez Torres

ENGLAND

Centre of Law, Medicine and Ethics

King’s College

Strand

London, England W2R 2LS

Ian Ramsey Bioethics Centre

St. Cross College

St. Giles

Oxford, England OX1 3LZ

Telephone: 0865-50934

Director: Dr. Arthur Peacocke

Institute of Medical Ethics

151 Great Portland Street

London, England WIN 5TA

Director: Sir Douglas Black

Linacre Centre

60 Grove End Road

St. John’s Wood

London, England NW8 9NH

Telephone: 01-286-5126

Director: F.D.K. Williams, CBE, MA

Society for the Study of Medical Ethics

Tavistock House North

Tavistock Square

London, England WC1H 9LG

Telephone: 01-3878132

Director: Rev. E.F. Shotter

FRANCE

Centre de documentation et d’information en

ethique des sciences et de la sante

INSERM

101 rue de Tolbiac

75654 Paris Cedex 13

France

Telephone: 45.84.14.41

Director: Claire Ambroselli

Centre d’ethique medicale

Federation universitaire et polytechnique

de Line

60, boulevard Vauban

F-59046 Line Cedex

France

Telephone: 33-20-30-88-27

Director: Charles Lefevre

Comite d’ethique

Faculte de medecine

4, rue Kirschleger

Srasbourg, France 67085

Telephone: (88) 36-06-91

Director: Jean-Marie Mantz

Comite d’ethique

Hopital Bretonneau

Tours, France 37044

Telephone: (47) 66-15-15

Director: Fernand Lamisse, President

Comite d’ethique

CHU de Grenoble

Domaine La Merci

23, avenue Maquis du Gresivaudan

La Tronche, France 38700

Telephone: (76) 42-48-88

Director: Jean Perret, President
App. D—NRCBL International Directory of Bioethics Organizations ● 425

Comite d’ethique de l’University Claude Bernard

et Hospices de Lyon

12, rue Guillaume Paradin

Lyon Cedex 2

France 69372

Telephone: (7) 874-85-89

Director: M. Gilly, President

Comite d’ethique de Nancy

Hopital d’enfants

CHU Nancy

Vandoeuvre, France 54500

Telephone: (8) 355-81-20

Director: M. Pierson, President

Comite d’ethique de Rennes

Service urologic, CHR Pontchaillou

1, rue Henri Le Guilloux

Rennes, France 35043

Telephone: (99) 59-16-04

Director: B. Lobel, president

Comite d’ethique de Toulouse

Hopital Rangueil

Service de chirurgie

Toulouse, France 31054

Telephone: (61) 53-11-33

Director: Jean Becue, President

Comite d’ethique des hopitaux de Paris Direction

des aff. medical

3, avenue Victoria

Paris, France 75004

Telephone: (1) 277-11-22

Director: M. Rapin, President

Comite d’ethique du CHU de Nice

Hopital Pasteur

BP 69

Nice, France 06002

Director: A. Ollier, Secretaire

Comite d’ethique du CHU de Rouen

Faculte de medicine et pharmacie

Boite postale 97

St. Etienne du Rouvray 76800 France

Telephone: (35) 65-81-81

Director: F. Boismare

Comite d’ethique du groupe de recherche

sur le medicament

4, rue Blaise Pascal

Strasbourg, France 67070

Director: Jean Pottecher, President

Comite d’ethique medicale

24, avenue du Colonel Schuller

Aix-en-Provence, France 13100

Telephone: (42) 27-92-75

Director: M. Legueut, President

Comite d’ethique medicale

18, rue Porte-Dijeaux

Bordeaux, France 33000

Director: G. Boulanger

Comite d’ethique medicale

7, boulevard Jeanne d’Arc

Dijon, France 21000

Telephone: (80) 65-23-23

de Bordeaux

de Bourgogne

Director: M. Reydel, President

Comite d’ethique medicale du CHU

Centre medico-chirurgical Gui de Chauliac

Montpelier, France 34000

Director: Andre Bertrand, President

Comite regional d’ethique biomedical

Midi-Pyrenees

CHU Purpan

Toulouse, France 31059

Telephone: (61) 49-11-33

Director: Jean-Pierre Marc-Vergnes, President

Conseil d’ethique du CHU de Besancon

Faculte de medicine et pharmacie

Place St. Jacques

Besancon, France 25000

Telephone: (81) 81-11-45

Department d’ethique biomedical

Centre Sevres

14 rue d’Assas

Paris, France F-75006

Director: Patrick Verspieren, S.J.

University Claude Bernard

Laboratoire de medecine legale

8, avenue Rockefeller

Lyons, France 69008

Telephone: 78.74.24.88

Director: Dr. Nicole Lery

GERMANY, EAST

Arbeitsbereich Medizinethik

Zentralinstitut fur Philos d Akad

d Wissenschaften d DDR, Nuschke Str

1000 Berlin EAST GERMANY

Director: Prof. Dr. Bernd Loewe
426 ● Life-Sustaining Technologies and the Elderly

GERMANY, WEST

Bundes—ammer, Wissensch. Beirat

Zentrale Ethikkommission

Haedenkamp Strasse 4

D5000 Koln WEST GERMANY

Telephone: 02214004-228

Director: Prof. Dr. med. H.P. Wolff

Zentrum fur medizinische Ethik

Institut fur Sozialmedizin

Ruhr Univ Bochum, Postfach 102148

D4630 Bochum WEST GERMANY

Telephone: 0234-7004868

Director: Prof. Dr. Herbert Viethues

GREECE

Foundation for Research in Childhood

42 Amalias street

Athens, Greece GR-10558

Telephone: 32.36.783

Director: Spyros Doxiadis

INDIA

F. I.A.M.C. Biomedical Ethics Centre

St. Pius X College—Aarey Road

Goregaon East

Bombay, India 400-063

Telephone: 69.12.17

Director: Dr. E.J. de Souza

INDONESIA

Centre for Biomedical Ethics Development

J1. Kramat VI/7

Jakarta, Pusat Indonesia

ISRAEL

Immanuel Jacobivits Centre

Ben-Gurion University

Beersheba. Israel

ITALY

Centro di Bioetica/Societa di letture

e conversazioni scientifiche

Genoa, Italy

Consiglio Nazionale delle Richere

Director: Evandro Agazzi

Sandro Spinsanti

Hospital Fatenbenefratelli

Rome, Italy

JAPAN

Institute of Medical Humanities

School of Medicine, Kitasato University

I-15-1 Kitasato, Sagamihara-city

Kanagawa, Japan

Director: Prof. Dr. Masamichi Sakanoue

NETHERLANDS

Centrum voor Bio-Medische Ethiek

Minderbroedersstraat 17

Leuven, Belgium 3000

Telephone: 016.21.74.82

Director: Dr. Paul Schotsmans

Instituut voor Gezondheitsethiek

Postbus 778

Maastricht, Netherlands 6200 AT

Telephone: 043-888-782

Director: Dr. Maurice de Wachter

Netherlands Institute for Bioethics

Het Wilhelminakinder Ziekenhuis

Nieuwe Gracht 137

Utrecht, Netherlands

Telephone: 030-330-911

Director: W.H.G. Walters, Ph.D.

Permanent Committee on Health Ethics Health

Council of the Netherlands

Pr. Margrietpl. 20, Pb. 95379

Den Haag, Netherlands 2509 CJ

Telephone: 070-471441

Director: C.M. Voermans-Neleman, M.D.

NORWAY

Resource Center for Teaching of Bioethics,

Dept. of Medicine

Univ. of Trondheim, Regionsykehuset

7000 Trondheim Norway

Telephone: 075-21100

Director: John Mauritzen,

SPAIN

lnstituto Borja de Bioetica

Llaseres, 30

Sant Cugat del Valles

Barcelona Spain

Telephone: (3) 674.47.66

M.S.T.

Director: Francisco Abel, M. D., Ph.D.

SWITZERLAND

International Inst des Sciences Sociales

et Politiques

University Fribourg

Fribourg, Switzerland CH 1700

Telephone: 037-219503

Director: Prof. Dr. Ottfried Hoeffe

THAILAND

Center for Bioethics Research

ASEAN Institute for Primary Health Care

Director: Dr. Pinit Ratanakul
App. D—NRCBL International Directory of Bioethics Organizations ● 427

VATICAN CITY YUGOSLAVIA

Pontifical Commission for Health Care Workers Yugoslav Center for Medical Ethics

Via della Conciliazone 3 Andrija Stampar Sch. of Public Health

00193 Rome, Italy University of Zagreb, Rockfellerova 4

Telephone: 653-0793/8 or 653-0845 41000 Zagreb, Yugoslavia

Director: Monsignor Fiorenzo Angelini Director: Sloban Lang, MD

WALES

Centre for the Study of Philosophy and

Health Care

University College

P.O. BOX 78

Cardiff CFI IXL

Wales
Introduction

The second half of the 20th century has seen a movement toward shared decisionmaking between physician and patient in medical care. This welcome trend

has causes that include rapid technological advances,

a more health-conscious public, better understanding

of the limitations of health care, and the emergence

of less autocratic health-care providers. However, these

developments have been accompanied by a new way

of dying in that the last days of life are often spent

in an expensive hospital environment in which the patient, through mental incompetence or physical incapacity, is unable to make decisions about personal medical care.

The widespread use of mechanical ventilation has

occurred in the last two decades. Mechanical ventilation first became available outside the operating room

and recovery room in the mid-1960s. At that time each

major hospital usually had one intensive care unit, and

patients were admitted based on the judgment of the

director and the family physician. This resource was

applied only to patients who seemed likely to recover.

Today the situation has changed, although mechanical ventilation remains only supportive, until the pa-

%4teering Committee: Thomas M. Hyers, M.D., chairman; Dick D. Briggs,

Jr., M. D.; Leonard D. Hudson, M. D.; Suzanne S. Hurd, Ph. D.; Albert R. Jensen, Ph. D.; John J. Lombard, Jr., J.D.; Louise M. Nett, R. N., RRT; Thomas A.

Raffin, M.D.; Robert M. Rogers, M.D.; and Gordon L. Snider, M.D.

2Rep~u~ fmm I~NIH Workshop Summary: withholding and Withdrawing Mechanical Ventilation,” American Review of Respiratory Diseases 134:

1327-1330, 1986, used with permission.

tient’s underlying disorder of the central nervous system, neuromusculature, or lung improves spontaneously

or responds to specific therapy. Every hospital now

has the capacity to institute mechanical ventilation, and

paramedical personnel often initiate the process by

manual ventilation in the home as part of cardiopulmonary resuscitation. Endotracheal incubation and mechanical ventilation are frequently instituted by medical personnel who have little previous knowledge of

the patient, and since this therapy is immediately life

sustaining, it is often impossible to contact the family,

surrogate, or personal physician prior to its initiation.

As a result, the ability to prolong life or the dying process is no longer in the hands of a few, select medical

personnel but is available in every medical facility

where emergency medicine is practiced and in most

mobile life support units. This capability, although beneficial in many cases, carries with it the potential for

overwhelming emotional hardship, agonizing pain, and

devastating financial cost for the patient and the patient’s family.

Prognosticating Outcome in the

Severely Ill

Decisionmaking about life-sustaining therapy is complicated by our inability to prognosticate outcome in

the severely ill or injured person. Subgroups of patients with particularly poor prognoses who undergo

mechanical ventilation have been difficult to identify.

For instance, it is common knowledge that severely

immunosuppressed individuals and those with liver

failure who develop acute respiratory failure have a

428
App. E—NIH Workshop Summary: Withholding and Withdrawing Mechanical Ventilation ● 429

poor prognosis, but these perceptions are based on

limited anecdotal evidence from a few medical centers.

In this regard, physiologic scoring systems such as the

APACHE II scheme may prove useful to categorize

severity of illness and help predict outcome (l). The

most useful prognostic data have been obtained on patients with coma (2). In this large series, less than 2

percent of patients with nontraumatic, nondrug-induced

coma, who lacked at least two of corneal, pupillary,

and oculovestibular responses within hours of the

onset of coma, ever regained independent function.

However, most patients who receive mechanical ventilation have less predictable outcomes.

The Persistent Vegetative State

Decisionmaking about mechanical ventilation often

concerns patients in a persistent vegetative state, since

many patients in this state are maintained on ventilators. These individuals are not brain dead, but rather

appear to be awake with open eyes and sleep-wake

cycles. They can be seen to follow movement with their

eyes and sometimes will swallow food placed in their

mouths. However, they neither speak, follow commands, nor show cognitive awareness of themselves

or their surroundings. This state may rapidly follow

coma, and if it persists for more than a few weeks,

usually indicates an extremely poor chance for recovery of independent function (3). Unfortunately, the onset of this state is difficult to predict and its outcome

only becomes apparent after weeks of therapy.

For most patients who are supported by mechanical ventilation, the prognosis is less clear. Furthermore,

for some individuals with more favorable prognoses,

mechanical ventilation and other intensive medical

treatment may be perceived as so burdensome that

it is declined by the patient or the surrogate. In each

of these circumstances, health care professionals are

increasingly called on to provide counsel and advice

about withholding or withdrawing mechanical ventilation and other life-sustaining therapy. What are the

elements involved in making and implementing these

decisions? Can high-quality patient care be maintained?

Detailed answers to these questions were orginally

given in a publication of the President’s Commission

for the Study of Ethical Problems in Medicine and Biomedical Research entitled “Deciding To Forego LifeSustaining Treatment” (4). In the following sections we

describe some procedures for making and implementing these decisions, and we outline topics that require

further study and development.

Withholding and Withdrawing

Therapy

Mechanical ventilation is an example of life-sustaining

therapy because it substitutes for an essential physiologic process that is not functioning properly. However, the simplest supportive measures can place undesirable and intolerable burdens on the dying or

irreversibly incapacitated patient by unnecessarily

prolonging suffering. In such a patient, intravenous

feeding, antibiotic therapy, and even enteral feeding

are now regarded by many as appropriate for withdrawal when the burden of the treatment outweighs

any benefit the patient can derive. It has become increasingly acceptable to contrast the benefit and the

burden of specific treatment rather than regard it as

ordinary or extraordinary (5). In this way an extremely

painful or invasive treatment might be advocated if

it were likely to result in significant improvement, but

even a minimally supportive treatment might not be

condoned if the prognosis were dismal (6,7).

With mechanical ventilation, however, we deal with

immediacy, literally with the breath of life. Because

of this immediacy we are often reluctant to withhold

this treatment, and we are even more ambiguous about

withdrawing mechanical ventilation. Our reluctance

and ambiguity have practical reasons. First, the decision to withdraw is more often made by a surrogate,

whereas the decision to withhold is more likely to be

made by the patient. Surrogate decisionmaking is less

precise. It is more likely to be tediously scrutinized

by the press, the courts, and other parties. Decisions

to withdraw take longer to implement; the family and

usually the entire intensive care unit team must be

prepared more carefully. Finally, withdrawing therapy is humiliating to many physicians. Withholding

therapy always leaves a doubt about whether the therapy might have worked, but withdrawing is the public admission that therapy has failed, which may be

difficult for the treating physician to accept. Withdrawal of mechanical ventilation is particularly poignant

since it often leads quickly to death. However, these

differences are practical and emotional. There are no

ethical or legal differences between withdrawing and

withholding mechanical ventilation.

Decisions to withhold or withdraw mechanical ventilation must be based on an essentially similar decisionmaking process. The decision to withhold generally

deserves more scrutiny than the decision to withdraw,

but rarely gets it. A rationale for withholding therapy

is also adequate for withdrawing it. Furthermore, the
430 • Life-Sustaining Technologies and the Elderly

act of withdrawal is generally a more informed act

because the therapy has been initiated and shown not

to work. It is clear in medicine that a therapy should

be discontinued when it is not working or is so burdensome to the patient that it cannot be tolerated. Finally, the decision to withdraw mechanical ventilation

from a dying or irreversibly incapacitated patient cannot be said to cause death. It merely allows death to

occur from whatever necessitated mechanical ventilation in the first place (4).

That the patient can refuse treatment of any kind

is regarded as a fundamental legal right in our society. It is relatively easy to respect the decision of the

competent patient who can understand the prognosis, is informed of the therapeutic alternatives, and

voluntarily makes a decision regarding medical care.

In cases where a physician cannot in conscience comply with the decision, the patient’s care should be

transferred to another physician. However, decisionmaking for the person who is not legally dead but is

incompetent or incapacitated becomes more difficult.

In recent years two powerful instruments have

emerged that allow the individual more control in circumstances when competence or physical capacity

may be compromised. These instruments are the living will (8) and the durable power of attorney (9,10).

The living will is a written and witnessed document

that expresses the patient’s desires about medical care

in the event of incompetence or incapacity. The living

will generally cannot specify the exact circumstances

under which an individual would want therapy withheld, although health care professionals have in some

instances prepared very detailed living wills for themselves. Being an advance directive it lacks the moral

force of contemporaneous decisionmaking by the patient. A physician might consider it inappropriate for

fulfill the directive of a living will because its general

language does not reflect a full understanding of the

specific treatment decision to be made and the benefit that might be obtained. It should be noted, however, that no civil or criminal action has been successfully brought against a practitioner for following the

instructions of a living will.

In an effort to codify the concepts of the living will,

currently 35 States and the District of Columbia have

enacted laws related to a patient’s legal right to refuse

medical treatment. Even in States which have no legislation, living wills are being recognized as an indication of the patient’s intentions, including the right to

refuse treatment. These laws are widely known as natural death acts, and although they give some legal foundation to the concept of the living will, they also raise

as many questions as they answer (11,12). Perhaps

most importantly, few of these laws provide for appointment of a proxy decisionmaker in the event of

a patient’s incompetence or incapacity. In response to

this need, the concept of durable power of attorney

is being increasingly used to provide for a surrogate

decisionmaker. The word “durable” means that the authority of the surrogate continues to be effective when

the patient becomes incompetent or incapacitated. Unlike the common law nondurable power of attorney,

the surrogate has authority when it is most needed.

This concept is legally accepted in all States with the

exception of the District of Columbia, which has no

enabling legislation. It is a somewhat stronger idea than

the living will because it allows for more flexibility in

the decisionmaking process in response to the circumstances that affect the patient. Previously, durable

power of attorney was used more often to protect an

individual’s business and financial interests, and consequently the application of this instrument to decisionmaking on health care matters is relatively new.

Living wills and durable power of attorney generally

apply only in the event of the patient’s incompetence

and each is easily revokable. It must be recognized that

in each State there will be differences in the applicability of laws relating to durable power of attorney

and living wills. More uniformity across the States in

regard to these acts is needed (see proposed “Uniform

Rights of the Terminally Ill Act” by the National Conference of Commissioners on Uniform State Laws, 645

N. Michigan Avenue, Suite 510, Chicago, IL 60611, (312)

321-9710).

Making and Implementing the

Decision To Withhold

Cardiopulmonary Resuscitation

and Mechanical Ventilation

The decision to withhold cardiopulmonary resuscitation and mechanical ventilation is not a trivial one

and should not be rushed by the caregiver. In many

instances a minimum of several discussions with the

patient, family, and other interested parties over a few

days is necessary. For the competent patient or the

incompetent patient’s legally recognized surrogate, the

decision must be voluntary after full disclosure about

prognosis and therapeutic alternatives. The caregiver

may make medical recommendations but must not impose personal opinions about quality of life on the decisionmaker. In all instances it is desirable that there be

unanimity about the decision among family and other

interested parties. The need for unanimity becomes

crucial when the patient is incompetent and there is
App. E—NIH Workshop Summary: Withholding and Withdrawing Mechanical Ventilation Ž 431

no legally authorized surrogate, since unhappy family members or caregivers who were not included in

the decisionmaking process can unnecessarily complicate it. When irreconcilable differences exist between

parties interested in this decisionmaking process, introduction of a facilitator in the form of a clergy member or ethicist can be extremely useful.

While competent patients are legally entitled to refuse any treatment, including those that sustain life

(such as mechanical ventilation), physicians serve patients best by maintaining a presumption in favor of

sustaining life and rendering optimal treatment. In

other words, when in doubt, the physician should err

in favor of sustaining the life of a patient for whom

there may be a question of competency or other problems that cannot be easily resolved. In the case of an

incompetent patient, treatment could be revoked later

by a recognized surrogate. This revocation could be

based on specific instructions from the patient or on

the patient’s best interests if no clear prior directive

had been given to the surrogate.

Given the desire of many patients to take an active

role in the decisionmaking processes related to their

health care, physicians and nurses should take the necessary time to discuss life-sustaining treatment with

patients so that well-informed decisions about treatment can be made in advance. The attending physician, who presumably has established a prior relationship with the patient, should initiate these discussions,

possibly in the presence of close family members, and

most importantly before any emergent, life-sustaining

intervention becomes necessary. The patient can best

communicate this decision by making an explicit statement to the physician and at the same time executing

a prior directive, such as durable power of attorney

or a living will. Resolving the logistics of carrying out

the directive falls on the patient, physician, hospital,

and particularly, emergency room personnel. If possible, copies of prior directives should be made part of

the patient’s medical record. More readily available

means to communicate a prior directive such as a

necklace or bracelet, a microfilm chip attached to the

driver’s license, or similar identification should be

widely available. Health care institutions have an obligation to establish clear procedures for communicating the existence of such a directive as well as providing for its implementation.

Patients, family members, and health care professionals are often uncomfortable discussing life-sustaining treatments such as cardiopulmonary resuscitation

and mechanical ventilation when the patient is feeling

well. Historically, medical and nursing education has

provided little training in this area. The uncertainty

of medical prognostication, as well as the reluctance

of physicians and family members to accept responsibility for value judgments of this type also contribute

to the uneasiness. Many patients, however, have definite opinions regarding cardiopulmonary resuscitation

and mechanical ventilation and are willing to discuss

these when asked. For example, in patients with a

chronic illness such as advanced chronic obstructive

pulmonary disease, which is likely to progress to the

point where mechanical ventilation will be necessary

to sustain life, open discussion among physician, patient, and family is essential. A second example is that

of the healthy elderly. Discussions about a future catastrophic event, while often uncomfortable, can potentially prevent much pain and suffering. The use of

prior directives regarding cardiopulmonary resuscitation and mechanical ventilation is appropriate in both

instances.

Although economic considerations pervade many

aspects of health care, caregivers should not allow the

cost of treatment to dominate decisionmaking about

withholding mechanical ventilation. On the other hand,

the patient may factor into a prior directive the dire

financial consequences that prolonged hospitalization

might have on loved ones and refuse treatment on that

basis.

There are many areas of potential conflict in decisions to withhold mechanical ventilation that require

further clarification. Decisions about allocation of lifesustaining resources are implicitly made daily in medical practice. However, institutional policies that take

into account both ethical and legal aspects of withholding therapy should be clarified and declared. Mechanisms for communication of advance directives among

institutions, physicians, patients, and their families

need to be developed.

Implementing the Decision To

Withdraw Mechanical Ventilation

The decision to withdraw mechanical ventilation is

usually made after a patient has received this and other

treatment in an intensive care unit. Many individuals

can be involved in the process, but a surrogate frequently makes the decision because the patient is incompetent or incapacitated. When it becomes clear

to the health care team and family that mechanical

ventilation is no longer benefiting or is excessively burdensome to the patient, a representative of the provider team, usually the attending physician or the responsible critical care unit physician, should meet with

the patient and the family. The representative describes

the options and the medical implications of continuing or withdrawing mechanical ventilation. The representative may give a medical recommendation, but
432 ● Life-Sustaining Technologies and the Elderly

the decision to withdraw or to continue resides with

the patient if competent, or with a surrogate if the patient is incompetent or incapacitated. Living wills and

durable power of attorney can greatly facilitate this

decisionmaking process, but the steps are generally

the same whether or not a prior directive exists. The

following recommendations outline the decisionmaking process and its implementation.

It is the responsibility of the individual institution

to assure the existence of written policies about withdrawing mechanical ventilation. These procedures

must be consonant with appropriate ethical principles

and with legal precedents that pertain to that locale.

Important elements include:

1. Provision for continuing communication and consultation among all parties of interest. These include

the patient, the family, physicians, nurses, respiratory

therapists, social workers, and others.

2. These deliberations should result in a general agreement about withdrawing or continuing therapy. When

they do not, some mechanism of resolution of conflict

should exist. In some hospitals this may be a standing

ethics committee. In other hospitals it could be an ad

hoc committee. In many instances it is clergy known

to the family. In a few instances, the courts have been

involved in this decisionmaking process, although it is

generally agreed that the courts are not well equipped

to deal with this problem and their intervention should

only be sought when an irreconcilable conflict arises.

3. When and if a consensus is reached that further

ventilator support is neither benefiting nor is desirable for the patient, the following events should occur.

4. A signed and witnessed note should be placed in

the medical progress notes by the responsible physician that it is the patient’s or the surrogate’s decision

that mechanical ventilation will be withdrawn. This documentation can briefly outline the events that led up

to the decision, the patient’s likely prognosis, and the

parties to the decisionmaking process.

5. Once the documentation has occurred in the medical progress notes, an order can then be written to

withdraw mechanical ventilation. This withdrawal procedure should provide for the patient’s comfort and dignity. Although no details of a recommended withdrawal

procedure are given here, in most cases the responsible physician should direct the procedure personally.

Withdrawal procedures that result in great dyspnea or

discomfort to the patient should be avoided, and the

use of narcotics to blunt dyspnea and discomfort may

be desirable.

Further Studies and New Directions

A diversity of further studies is needed. The medical literature is still imprecise about prognosis in many

severe illnesses. More precise prediction of outcome

is needed in both adult and pediatric illnesses that necessitate mechanical ventilation. Early predictors of

the emergence of a persistent vegetative state would

be useful. Subgroups of patients requiring mechanical ventilation who have a particularly high mortality

rate or permanent loss of cognitive function (nearly

100 percent) need early identification.

There is a lack of study of the psychosocial implications of withholding and withdrawing mechanical ventilation. Very little is know about the perceptions of

the healthy elderly and their desires regarding critical care and withdrawing and withholding mechanical ventilation. Most medical orders that withhold

resuscitation or mechanical ventilation are ambiguous,

and it is not clear to many physicians how to write

a “do not resuscitate” order (13,14). Physicians perceive

many problems when they withhold and withdraw mechanical ventilation, Their perceptions and fears are

not well understood and only recently have studies

begun to explore this area (15,16). While there are no

ethical or legal differences between withholding or

withdrawing mechanical ventilation, caregivers continue to be confused about the legal significance of

withdrawal of therapy, and efforts should be undertaken to correct this misunderstanding (17).

In a practical manner it is difficult to communicate

advance directives to emergency medical and intensive care unit personnel. Innovative devices and procedures are needed in this area. Few people know

about living wills and durable power of attorney and

how to implement them. Health care professionals

should be encouraged to include information about

prior directives with maintenance medical programs

for chronically ill patients.

Careful collection of information about functional

status and quality of life following weaning from mechanical ventilation would be useful since there is widespread fear that data about quality of life is currently

being misinterpreted and inappropriately applied.

With the extensive use of home ventilator therapy in

this country, studies are needed of the psychosocial

implications of long-term ventilation. There is little pub-
App. E—NIH Workshop Summary: Withholding and Withdrawing Mechanical Ventilation ● 433

lished information on the social adjustment of premature infants or adults who receive long-term mechanical ventilation. Reimbursement schemes for patients

receiving mechanical ventilation at home are poorly

developed. Some of this information will be difficult

to obtain and much of it is subject to change as new

technology and treatments are applied. However, taken

as a whole, this body of information will help patients

and caregivers make more informed decisions about

life-sustaining treatments.

Appendix E References

1. Knaus, W. A., Draper, E.A, Wagner, D. P., et al.,

“APACHE II: A Severity of Disease-Classification

System,” Critical Care Medicine 13:818-829, 1985.

2. Levy, D. E., Bates, D., Caronna, J. J., et a]., “Prognosis in Non-Traumatic Coma, ” Annals of Internal

Medicine 94:293-301, 1981.

3. Levy, D. E., Knin-Jones, R. P., Plum, F., Annals of the

New York Academy of Science 315:293-306, 1978.

4. President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Behavioral Research, “The Elements of Good DecisionMaking,” Deciding To Forego Life-Sustainz”ng Treatment (Washington, DC: U.S. Government Printing

Office, March 1983), pp. 43-90.

5. Conroy reviewed, 188 N.J. Super 1983: 523, 457,

A. 2d. 1232.

6. Conroy reviewed, 190 N.J. Super 1983; 453, 464,

A. 2d. 303.

7. Superior Court v. Barber, 195, Cal. 491.

8. Eisendrath, S.J., and Jensen, A. R., “The Living Will–

Help or Hindrance? ’’.kxmud of the American Medical Association 249:2054-2058, 1983.

9.

10.

11

12<

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Behavorial Research, “Statutes and Proposals To Empower Appointment of Proxies,” Deciding To

Forego h“fe-Sustaining Treatment (Washington,

DC: U.S. Government Printing Office, March 1983),

pp. 390-422.

Gilfix, M., Raffin, T. A., “Withholding or Withdrawing Extraordinary Life Support ,“ Western Journal

of Medicine 141:387-394, 1984.

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Behavioral Research, “Patients Who Lack DecisionMaking Capacity, ’’Deciding To Forego h“fe-Sustain -

ing ‘Treatment (Washington, DC: U.S. Government

Printing Office, March 1983), pp. 141-153.

Jensen, A. R., “Dying Right in California: The Natu -

ral Death Act,” Clim”ca] Research 26:55-60, 1978.

13. Rabkin, M.T., Gillerman, G., Rice, N. R., “Orders Not

To Resuscitate,” New England Journal of Medicine

295:364-366, 1976.

14. Evans, A.L., and Brody, B. A., “The Do-Not-Resuscitate Order in Teaching Hospitals, ” Journal of the

American Mech”calAssociation 253:2236-2239, 1985.

15. Bedell, S. E., Delbanco, T.L., “Choices About Cardiopulmonary Resuscitation In the Hospital: When Do

Physicians Talk With Patients?” New England Journal of Medicine 310:1089, 1984.

16. Miller, A., and Lo, B., “How Do Doctors Discuss DoNot-Resuscitate Orders?” Western Journal of Medicine 143:256-258, 1985.

17. ‘!Principles and Guidelines Concerning the Foregoing of Life-Sustaining Treatment for Adults, ” c/o

Mr. Marvin Wakers, Director of Community Relations, Los Angeles County Medical Association, P.O.

Box 3465, Los Angeles, CA 90051-1465.
Appendix F

The Effect of Normal Aging on the

Assessment of Nutritional Status

Introduction

Dietary histories, anthropometric, biochemical, and

hematologic measurements, and measurements of immune response are used to assess nutritional status

in individuals of all ages. Changes in body composition and metabolism associated with normal aging affect many of the indices of nutritional status used in

these assessment methods and may alter the nutritional

standards needed to interpret findings for an individual patient. Some of these effects were discussed in

chapter 8. Others are discussed below.

Dietary Histories

Dietary histories provide information about total caloric intake and fat, carbohydrate, protein, vitamin,

and mineral components of the diet. The interpretation of this information requires a standard with which

to compare findings for an individual patient. At present, no comprehensive standard for elderly patients

is available.

In the absence of information about ideal dietary requirements for elderly people, the results of surveys

of the actual dietary intake of healthy elderly individuals are sometimes used as a standard with which to

compare dietary findings for an individual. The most

comprehensive information about the nutritional status of healthy Americans was obtained from the Ten

State Survey, conducted from 1968 to 1970 and the

National Health and Nutrition Examination Surveys,

conducted from 1971 to 1974 and from 1976 to 1980

(12).

There are several problems with the use of these

survey findings as a nutritional standard, however.

First, although the survey data provide information

about actual average intake for healthy individuals over

age 65, they may not accurately reflect average intake

for subgroups of the elderly population, such as people with different ethnic and socioeconomic background than the surveyed population. Second, persons

over 74 were not included in some surveys, and findings from other surveys were not broken down by agedefined subgroups of the elderly population (i.e. age

75 to 84 and 85+) (12,20). Finally, the use of findings

based on the dietary intake of healthy elderly people

as a standard for chronically or acutely ill elderly people may be inappropriate. Research on the dietary intake of older people in hospitals and nursing homes

may provide a more appropriate basis for the development of nutritional standards for these populations

(12).

Use of dietary histories for elderly people has been

questioned because of the possibility that for some individuals declining memory may affect accurate recall. Dietary recall for the past 24 hours and prospective l-week dietary histories have been shown to be

relatively accurate in healthy older people who are

living at home. Prospective l-week dietary histories

were found to be more accurate than retrospective

reports of 24-hour food consumption for these individuals (14, 18). For critically and terminally ill patients,

accurate dietary histories may be more or less difficult to obtain depending on the patient’s mental status and whether the caregivers have recorded food

and fluid intake consistently.

Anthropometric Measurements

Measures of weight, lean body mass, and fat stores

provide important information about nutritional status, but analysis of these measurements for elderly

patients is complicated by changes in physiological

characteristics and body composition associated with

normal aging. Lean body mass decreases, resulting in

an increase in the proportion of body weight as fat.

In addition, a redistribution of fat occurs, particularly

in females (12), Thus measurements that are abnormal for younger patients may be normal in elderly

people.

Interpretation of anthropometric measurements is

further complicated by the reduction in height that

is associated with normal aging. Height is commonly

used as a reference for other anthropometric measures, such as weight, but loss of height in elderly people, averaging 2.9 cm in men, and 4.9 cm in women,

makes its use as a reference standard difficult. Moreover, accurate heights are often difficult to obtain in

persons who are bedfast or confined to a wheelchair.

Some experts have suggested the use of total arm

length or knee to ankle measurements instead of height

for elderly people because these characteristics are

less affected by aging and easier to measure in a bed

or chairfast patient (6,16). Assessment of height remains an important area of research in nutritional

assessment of elderly people (12,17).

434
App. F—The Effect of Normal Aging on the Assessment of Nutrition/ Status ● 435

Accurate standards for weight in elderly people are

also needed (7). The best weight-for-height information is that described by Master, et al. (15). This information was developed from a relatively small population of older, white Americans, however, and does not

represent other ethnic and socioeconomic subgroups

of the elderly population (12). New standards of ideal

weight for height in elderly people have been proposed

but remain controversial (1).

Weight loss as an indicator of malnutrition is discussed in chapter 8. Dramatic weight gain in elderly

patients can also indicate disease-related nutrient deficiencies that are causing fluid retention (4).

As discussed in chapter 8, skinfold thickness is often

used as a measure of fat stores. However, research

indicates that alterations in fat distribution, altered skin

turgor and elasticity, and other characteristic changes

of the aging skin make skinfold measurements difficult to interpret after age 60. The tricep skinfold is

used to estimate body composition, and, with a measure of midarm circumference, can be used to calculate midarm muscle circumference and midarm muscle

area. Studies have confirmed the ability of midarm

muscle area to predict lean body mass and formulas

have been developed that allow the calculation of corrected arm muscle area for adults (3,10). Although

standards for midarm muscle area have been reported

for elderly subjects (9), they are limited by the fact

that the oldest subject examined was age 75.

Creatinine excretion is another frequently used

measure of lean body mass. Twenty-four-hour excretion of urinary creatinine varies directly with muscle

mass of the body with reasonable accuracy. Creatinine

excretion related to height has been used as an indicator of lean body mass in the diagnosis of nutritional

deficiencies in hospitalized patients (2,19). The normal

values for creatinine excretion were developed on the

basis of a small sample of young adults, and there are

no standards for elderly people. Moreover, some experts believe that creatinine excretion maybe affected

by age-related changes in renal function and that its

usefulness in assessing nutritional status of older subjects may therefore be limited (12).

Biochemical Measurements

Serum albumin level is the most frequently used biochemical index of nutritional status, and low serum

albumin levels often indicate poor nutritional status

in patients of all ages. However, many factors alter the

serum concentration. For example, marked reductions

in serum albumin occur in kidney and liver disease,

cancer, congestive heart failure, and other diseases that

cause excessive urinary or gastrointestinal loss of protein. These conditions must be ruled out before malnutrition is diagnosed on the basis of low serum albumin concentration (8,12).

Most surveys show that the range of serum albumin levels in elderly people is broader than in younger people, but the majority still fall within the normal range. Significant reductions outside the lower

limits of normal are rare in the healthy elderly. Thus,

this measure is one of the most reliable indices of nutritional status in the elderly (5,12),

Serum transferring is another biochemical index of

nutritional status, but there are difficulties with its

interpretation. Iron deficiency anemia increases transferrin concentration, whereas the anemia of infection

and inflammatory diseases decreases transferring concentration. Transferring levels also vary inversely with

tissue iron stores. Since iron stores are higher in the

elderly than in younger subjects, their transferring

levels are lower. Thus, many apparently healthy elderly

subjects have serum transferring levels in the range usually described as deficient, not because of nutritional

deficiencies but because of an increase in tissue iron

stores. For this reason, serum transferring levels for

elderly patients must be interpreted with caution (12).

Other biochemical measurements, such as pre-albumin and retinol binding protein, have been suggested

as protein status indicators, but these measurements

have rarely been used in the elderly. Further work

will be required to determine the importance of these

measurements in detecting nutritional deficiencies in

older people (12).

Hematologic Measurements

Low hemoglobin levels generally indicate poor nutritional status, but low hemoglobin levels are more

common among healthy elderly people, particularly

elderly men, than among younger individuals. The decrease in hemoglobin that occurs with aging is generally not due to the commonly recognized causes of anemia, such as iron deficiency, folate deficiency, or

chronic disease, but instead is probably due to a reduction in the production of blood cells that may be

related to normal aging. Thus, a mild decrease in hemoglobin levels may not indicate nutritional deficiency

in elderly people. A severe decrease, however, usually does indicate a hematologic or nutritional abnormality that requires diagnosis and treatment (12, 13)

Immunologic Assessment

Malnutrition causes changes in immune functioning

of the individual, and tests of immune function are

frequently used to assess nutritional status (11). Two

commonly used tests of cell-mediated immunity are

total lymphocyte count and delayed cutaneous hyper-
436 ● Life-Sustaining Technologies and the Elderly

sensitivity. While total lymphocyte count is not affected

by normal aging, the proportion of certain types of

lymphocytes is changed. Moreover, 50 percent of

healthy persons over the age of 50 have impaired

delayed cutaneous hypersensitivity (21). Since the

changes in immune function that occur as a result of

aging are almost identical to those caused by malnutrition, findings from immunologic measures for elderly

patients must be interpreted with caution (8,12).

Appendix F References

1. Andres, R., “Effect of obesity on Total Mortality,”

Advanced Pathobiology 7:238-246, 1980.

2. Bistrian, B. R., Blackburn, G. L., Sherman, M., et

al., “Therapeutic Index of Nutritional Depletion

in Hospitalized Patients, ” Surgery, Gynecology,

and Obstetrics 141:152, 1975.

3. Blackburn, G. L., Bistrian, B. R., Maini, B. S., et al.,

“Nutritional and Metabolic Assessment of the Hospitalized Patient,” .Journal of Parenteral and Enteral Nutrition 1:11-22, 1977.

4. Chernoff, R., Associate Director, GRECC for Education and Evaluation, John L. McClellan Memorial Veterans Hospital, Little Rock, AR, personal

communication, Sept. 4, 1985.

5. Chernoff, R., and Lipschitz, D. A., “Total Parenteral Nutrition: Considerations in the Elderly,”

Clinical Nutrition, Vol II: Total Parenteral Nutrition, J.L. Rombeau and M.D. Caldwell (eds.) (Philadelphia, PA: W.B. Saunders, in press).

6. Chumlea, W .C., Roche, A.F., and Mukherjee, D.,

Nutritional Assessment of the Elderly Through

Anthropometry (Columbus, OH: Ross Laboratories, 1984).

7. Clark, N.G., and Bistrian, B. R., “Recognition of

ProteinCalorie Malnutrition in the Hospitalized

Elderly,” Geriatric Medicine Today 3(10):45-59,

1984.

8. Cooper, J. K., “Does Nutrition Affect Surgical Outcome?” Journal of the American Geriatrics Society 35(3):229-232, 1987.

9. Frisancho, A.R., “Triceps Skinfold and Upper Arm

Muscle Size Norms for Assessment of Nutritional

Status,” American Journal of Clinical Nutrition

27:1052-1058, 1974.

10<

114

12,

13,

14,

15,

16.

17.

18.

19.

20.

21

Gray, G. E., and Gray, L. K., “Validity of Anthropometric Norms Used in the Assessment of Hospitalized Patients, ” Journal of Parenteral and Entera] Nutrition 3:366-368, 1979.

Kaminski, M. V., Pinchofsky-Devin, G.D., and

McCormick, D.C., “DCH Testing as a Nutritional

Assessment Tool,” Nutritional Support Services

5(3):21-23, 1982.

Lipschitz, D.A., and Chernoff, R., “Nutritional Support and Hydration for Critically and Terminally

Ill Elderly,” prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC,

December 1985.

Lipschitz, D.A., Mitchell, C. O., and Thompson, C.,

“The Anemia of Senescence,” American Journal

of Hematology 11:47-54, 1981.

Madden, J.P., Goodman, J. S., and Guthrie, H. A.,

“Validity of 24-Hour Recall,” Journal of the American Dietetic Association 68:143, 1978.

Master, A. M., Lasser, R. P., and Beckmen, G., “Tables of Average Weight and Height of Americans

Aged 65 to 94 Years,” Journal of the American

A4edical Association 172:658-662, 1960.

Mitchell, C.O., and Lipschitz, D. A., “Arm Length

Measurement as an Alternative to Height in Nutritional Assessment of the Elderly, ” Journal of

ParenteraZ and EnteraZ Nutrition 6(3):226-229,

1982.

Morley, J. E., Silver, A.J., Fiataroni, M., et al., “Geriatric Grand Rounds: Nutrition and the Elderly, ”

Journal of the American Geriatrics Society 34(11):

823-832, 1986.

O’Hanlon, P., and Kors, M. B., “Dietary Studies of

Older Americans,” American Journal of Clinical

Nutrition 31(7):1257, 1978.

Rowe, J. W., Andres, R., Tobin, J.D., et al., ‘(

The

Effect of Age on Creatinine Clearance in Man: A

Cross-Sectional and Longitudinal Study,” Journal

of Gerontology 31:155-163, 1976.

Sherman, M.N,, Lechich, A., Brickner, P.W,, et al.,

“Nutrition] Parameters in Homebound Persons

of Greatly Advanced Age)” Journal of ParenteraZ

and Enteral Nutrition 7(4):378-380, 1983.

Whittinham, S., and McKay, I. R., “Depression of

Cell-Mediated Immunity in Old Age and The

Immunopathic Diseases, Lupus Erythrematosis,

Chronic Hepatitis, and Rheumatoid Arthritis, CZinical Experimental Immunology 14:193-202, 1973.
Appendix G

Recommended Antibiotic Regimens

for Elderly Patients With Selected

Life-Threatening Infections

The following tables present recommended antibiotic by D.W. Bentley, W.H. Barker, K.M. Hunter, et al.,

regimens for elderly people with life-threatening bac - University of Rochester, New York. The cost informaterial pneumonias, urinary tract infections, infected tion is based on the cost of the antibiotics purchased

decubitus ulcers, and septicemia associated with total from a Rochester hospital pharmacy and may not be

parenteral nutrition (TPN), and estimates of the cost representative of the cost of the same antibiotics

of the treatments. The tables were prepared for OTA nationwide.

437
Table G-1 .—Recommended Antibiotic Regimens for Elderly Patients With Life-Threatening Bacterial Pneumonias

Maximum Minimum

Setting

Cost per

Usual pathogen(s) Antibiotic(s) a b daily dose Cost per dayc

durationdcourse

Community . . . . . . . . . . . . . . . . Streptococcus preumoniae [3rd-generation cephalosporine

]

Mixed flora

Hemophilus influenza [chloramphenicol]

Gram-negative bacilli plus

aminoglycosidef

Nursing home . . . . . . . . . . . . . . Mixed flora Antipseudomonal penicillins

Streptococcus pneumonia or [3rd-generation cephalosporine

]

Gram-negative bacilli or trimethoprim (TMP11 sulfamethoxazole (SMX)

plus

aminoglycosidef

Hospital

Not immunocompromised. . Gram-negative bacilli

Staphylococcus aureus

Streptococcus pneumonia

Mixed flora

Immunocompromised . . . . . As above plus

Legionella pneumophilia

[3rd-generation cephalosporine]

plus

aminoglycosidef

[3rd-generation cephalosporine]

plus

aminoglycosidef

plus

[erythromycin]

plus

[TMP-SMX]

— e

4.0g

– f

— 9

— e

TMP 1.2g

SMX 6.Og

– f

— e

– f

— e

– f

4.0g

TMP 1.2g

SMX 6.Og

[$50.70-$ 168.12]e 7 days ‘--

[$14.76]

$13.40-$57.06f

$76.57-$138.40 9 14 days

[$50.70-$ 168.12e

[$9.10]

plus

$13.40-$57.06f

[$50.70-$ 168.12e 14 days

$13.4%.;:7.06f

[$57.70-$ 168.12]e 14 days

$13.4:-::7.06f

plus

[$39.16]

plus

[$9.10]

$354.90-$1,175.54

$103.32

plus

$187.60-$399.42

$1,072-$1,937.60 or

$709.80-$2,353.68 or

$127.40

plus

$315.00-$798.84

$709.80-$2,353.68

plus

$315.00-$798.84

$709.80-$2,353.68

plus

$315.00-$798.84

plus

$.548.24

plus

$127.40

aThe antibiotic(s) listed first is (are) the drug(s) of choice.

oThe first antibiotic listed within the brackets u is an alternate choice for penicillin-allergic patients with a htstory of a delayed hypersensitivity-type reaction. The second antibiotic listed within the brackets

is an alternate choice for patients with a history of anaphylactic reaction or interstitial nephritis from either penicillin or cephalosporin.

cTotal cost to patient is purchase cost plus 5 percent (inventory carrying cost) + $2.40 (dispensing fee).

dThe recommended minimum duration (days) is an “average” duration for the empirically selected parenteral antibiotics OnlY.

eThird.generation Cephalosporins (mmimum daily dose and cost per day) include cefot~ime (12 g; $127,44), cefoperazone (12 g; $I~,llJ, moxalactam (12 g; $168.12), ceftizoxinle (12 g; $134.22), ceftazidime

(6 g; $78.80), and ceftraxone (2 g; $50.70).

fAmin~glycosides (mwimum dally dose and cost per day) include amikacin (1,5 g; $57,~), gentamicin (5 mg/kg; $13,40), netilnlicin (65 mg/kg; $24.02), and tobramycin (5 mg/kg; $32.01) (all based Ofl 60 kg. patient).

gAntipseudomonal penicillins (maximum daily dose and cost per day) include Carbenicillin (41J g; $76.57), ticarcillin (24.30 g; $87.92), pipracillin (24 g; $108.24), mezlocillin (24 g; $77.16), and azlocillin (24 g; $138.40).

hNo

t currently approved by the Food and Drug Administration for this indication.

SOURCES: Usual pathogen and recommended antibiotics: D.W. Bentley, “Bacterial Pneumonia in the Elderly: Clinical Features, Diagnosis, Etiology and Treatment,” Gerorrto/ogy 30:297, 1964; and C.J. Rozas

and A.L. Goldman, “Responses to Bacterial Pneumonia,” Geriatrics 37:61, 1982. Maximum daily dose: S.M. Norris, and G,L. Mandell, “Tables of Antimicrobial Agent Pharmacology, Prirrcip/es and

Practices of h?fectious Diseases, G.L. Mandell, R.G. Douglas, Jr., and J.E. Bennett (eds.) (New York, NY: John Wiley & Sons, 1965). Cost per day: Strong Memorial Hospital Pharmacy, Rochester,

NY. Minimum duration: D.W. Bentley, “Infectious Diseases,” Clinical Geriatrics, 1. Rossman (cd.) (Philadelphia, PA: J.B. Lippincott, 1966, in press).
Table G-2.—Recommended Empiric Antibiotic Regimens for Elderly Patients With Life-Threatening Urinary Tract Infections

Maximum Minimum Cost per

Setting Usual pathogen(s) Antibiotic(s)a b daily dose Cost per dayc duration d course

Community, nursing home,

or hospital . . . . . . . . . . . . . . . Escherichia coli Ampicillin or 12.0 g $22.84 or 14 days $319.76 or

Klebsiella sp. [vancomycin] 2.0 g [$83.10] $1,163.40

Proteus sp. plus plus plus

Pseudomonas aeruginosa aminoglycoside e —e $13.40-$57.06e

$315.00-$798.40

Enterococcus or

Polymicrobial antipseudomonas penicillins – f $76.57-$38.40 f

$1,072.00-$1,937.60

[3rd-generation cephalosporins]g

$50.70-$168.12 g$70930%353.68

aThe antibiotic(s) listed first is (are) the drug(s) of choice.

bThe first antibiotic listed within the brackets D is an alternate choice for ~enicillin.allergic patients with a history of a delayed hypersensitivity-type reaction. The second antibiotic listed within the brackets

is an alternate choice for patients with a history of anaphylactic reaction or Interstitial nephritis from either penicillin or cephalosporin.

CTotal cost t. patient is purChase cost pIus 5 percent (inventory carrying Cost) + $2.40 (dispensing fee).

dThe ~ecommended ~inimum duration (days) is an “average” duration for the empirically selected parenteral antibiotics Oflly.

eAminoglycosides (maimum daily dose and Cost per day) include amjkacin (1.5 g; $57.@, gentamicin (5 mg/kg; $13,40), netilmicin (6.5 mg/kg; $24.02), and tobramycin (5 mg/kg; $32.01) (all based On 80 kg, patient).

fAntipseudomonal penicillins (mmimum daily dose and cost per day) include carbenicillin (40 g; $76,57), ticarcillin (24-30 g; $87.92), pipracillin (24 g; $108.24), mezlocillin (24 g; $77.16), and azlocillin (24 g; $138.40).

gThird-generation cephalosporins (rnaxlrnUrn daily dose and cost per day) include cefotaxime (12 g; $127.44), cefoperazone (12 g; $134.10), moxalactam (12 g; $168.12), ceftizoxime (12 g; $134.22), ceftazidime

(6 g; $78.80), and ceftraxone (2 g; $50.70).

SOURCES: Usual pathogen and recommended antibiotic: R. Gleckman, N. Blagg, D. Hibert, et al., “Community-Acquired Bacteremic Urosepsis in the Elderly Patients: A Prospective study of 34 Consecutive

Episodes, Journal of Urology 128:79, 1982; D. Kaye, “UrinaW Tract Infections in the Elderly,” Bulletin of the New York Academy of Medicine 56:209, 1984); A.R. Ronald, “Current Concepts in the

Management of Urinary Tract infections in Adults, ” Medical Clinic of Norfh America 68:355, 1984; and E.T. Sherman, V. Tucci, L.S. Libow, et al., “Nosocomiai Urinary Tract Infections in a Skilled

Nursing Facility,” Journal of the Amedcan Geriatrics Society 28:458, 1980. Maximum daiiy dose: S.M. Norris, and G.L. Mandell, “Tables of Antimicrobial Agent Pharmacology, Principles and Practices

of Infectious Dkeases, G.L. Mandell, R.G. Douglaa, Jr., and J.E. Bennett (eds.) (New York, NY: John Wiley & Sons, 1985). Minimum duration: D.W. Bentley, “infectious Diseases,” C/irrica/ Geriatrics,

1. Rossman (cd.) (Philadelphia, PA: J.B. Lippincott, 1986, in press). Cost par day: Strong Memorial Hospital Pharmacy, Rochester, NY.

Table G.3.— Recommended Antibiotic Regimens for Elderly Patients With Life-Threatening Infected Decubitus Ulcers

Setting

Maximum Minimum

Usual pathogen(s)

Cost per

Antibiotic(s) a b daily dose Cost per dayc duration d

course

Community, nursing home,

or hospital. . . . . . . . . . . . . Proteus sp. IClindamycin] or 4.8 g

Escherichia coli

[$120.32] or 14 days $1,684.48 or

[metronidazole] or 4.0 g [$44.64] or $624.96 or

Pseudomonas aeruginosa [chloramphenical] — [$14.76] $206.64

Staphylococcus aureus plus plus plus

Bacteroides fragilis aminoglycoside e —e

Polymicrobial

$13.40-$57.06e

$315.00-$798.84

or

antipseudomonal penicillins – f $76.57-$138.40f

$1,072.00-$1,937.60

[3rd-generation cephalosporins]g —9 $50.70-$168.129 $709.80-$2,353.68

aThe antibiotic(s) listed first is (are) the drug(s) of choice. LDThe first antibiotic listed within the brackets O is an alternate choice for penicillin-allergic patients with a history of a delayed hypersensitivity-type reaCtiOn. The second antibiotic listed within the brackets

is an alternate choice for patients with a history of anaphylactic reaction or interstitial nephritis from either penicillin or cephalosporin,

cTotal cost to patient is purchase cost plus 5 percent (inventory carrying cost) + $2.40 (dispensing fee).

dThe recommended minimum duration (days) is an “average” duration for the empirically selected parenteral antibiotics onlY.

eAminoglycosides (mMimum daily dose and cost per day) include amikacin (1.5 g; $57.06), gentamicin (5 mg/kg; $13.40), netilmicin (6.5 mglkg; $24.02), and tobramycin (5 mglkg; $32.01) (all based on 60 kg. Patient).

fAntipseudomonal penicillins (maximum daily dose and cost per @) irlclurje carbenicillin (40 g; $76.57), ticarcillin (24-30 g; $87.92), pipracillin (24 9; $106.24), meZIOcillin (24 g; $77.16), and SzIocillin (24 9; $138.40).

gThird.generation cephalosporins (m~lmum daily dose and cost per day) include cefot~ime (12 g; $127.44), cefoperazone (12 g; $134.1 O), moxalactam (12 g; $166.12), ceftizoxime (12 g; $134.22), ceftazidime

(6 g; $78.8o), and ceftraxone (2 g; $50.70).

SOURCES: Usual path~erl and recornrnerld~ antibiotics: A.W. Chow, and D.R. Burdge, “Pressure Sores, ” hrfections in the E/der/y, R.A. Gleckman and N.M. Gantz (eds.) (Boston, MA: Little Brown & Co,, 1983);

and D.W. Bentley, unpublished observations. Maximum rjaiiy dose: S.M. Norris, and G.L. Mandell, “Tables of Antimicrobial Agent Pharmacology, f’rincip/es and Practices of Infectious Diseases,

G.L Mandell, R.G. Douglas, Jr., and J,E, Bennett (eds.) (New York, NY: John Wiiey & Sons, 1985). Cost per day: Strong Memorial Hospital Pharmacy, Rochester, NY. Minimum duration: D.W. Bentley,

‘“Infectious Diseases,” Clinical Geriatrics, 1. Rossman (cd.) (Philadelphia, PA: J.B. Lippincott, 1986, in press).
Table G-4.-Recommended Antibiotic Regimens for Elderly Patients With Life-Threatening Total-Parenteral-Nutrition-Associated Septicemia

Maximum

Setting

Minimum Cost per

Usual pathogen(s) Antibiotic(s) ab daily dose Cost per dayc

a

duration course

Community or hospital . . . . . . Canida albiacans Penicillinase-resistant —e $46.20-$74.76e 10 days

Candida sp.

$460.20-$740-76

penicillins or

Staphylococcus [3rd-generation cephalosporinf

] – f $50.70-$168.12f

$500.70& ,680.12

epidermidis

Gram-negative bacilli [vancomycin] or 2 g $83.10 or $830.1O or

amphotericin B 1 mg/kg (60 kg) $20.98 $209.80

%he antibiotic(s) listed first is (are) the drug(s) of choice.

%he first antibiotic listed within the brackets o is an alternate choice for penicillin-allergic patients with a history of a delayed hypersensitivity-type reaction. The second antibiotic regimen listed within the

brackets Is an alternate choice for patients with a history of anaphylactic reaction or interstitial nephritis from either penicillin or cephalosporin.

cTot~ cost t. patient iS purchase cost ptus 5 percent (inventory carrying cost) + $2.40 (dispensing fee).

dThe recommended minimum duration (days) is an “average” duration for the empirically selected Parenteral antibiotics On~Y.

epennicillin~e-resistant Penicillins include methiciiiin (12 g; $74.76), oxacillin (12 g; $62.66), and nafcillin (9 9; $46.20).

fThird-generation cephalosporins (m=imum daily dose and cost per day) include cefot~ime (12 g; $127’ .44), cefoper~one (12 g; $l~,ltJ, moxalactam (12 g; $168.12), Ceftii!oxime (12 g; $lM.22), ceftazidime

(6 g; S78.60), and ceftraxone (2 g; $50.70).

SOURCES: Usual pathogan and rscommonded antibiotics: D.W. Bentley, unpublished obsemations. Maximum daily dosa: S.M. Norris, and G.L. Mandell, “Tables of Antimicrobial Agent Pharmacology, Principles

and FVactlces of /nfect/ous Diseases, G.L. Mandell, R.G. Douglas, Jr., and J.E. Bennett (ads.) (New York, NY: John Wiley & Sons, 1965). Coat per day: Strong Memoriai Hospital Pharmacy, Rochester,

NY. Minimum duration: D.W. Bentley, “Infectious Diseases,” C//nka/ Geriatrics, 1. Rossman (ad.) (Philadelphia, PA: J.B. Lippincott, 1986, in press).
Appendix H

Glossary of Acronyms and Terms

AACN

AARC

AARP

ABC

ADAMHA

AGS

AHA

AHA

ALS

ALS

AMA

AoA

APACHE

ASPEN

BLS

CAPD

CAVH

CBO

CCPD

CCRN

CCU

COBRA

COPD

CPI

CPR

CRNI

CRT

CRTT

DHHS

DME

DNI

DNR

DRG

ECC

ECMO

Glossary of Acronyms

—American Association of Critical-Care

Nurses

—American Association for Respiratory

Care

—American Association of Retired

Persons

—Airway, Breathing, and Circulation;

OR Assess, Breathe, and Circulate

—Alcohol, Drug Abuse, and Mental

Health Administration (DHHS, PHS)

—American Geriatrics Society

—American Heart Association

—American Hospital Association

—advanced life support

—amyotrophic lateral sclerosis

—American Medical Association

—Administration on Aging

—Acute Physiology and Chronic Health

Evaluation

—American Society for Parenteral and

Enteral Nutrition

—basic life support

-continuous ambulatory peritoneal

dialysis

-continuous arteriovenous

hemofiltration

-Congressional Budget Office (U.S.

Congress)

-continuous cycling peritoneal dialysis

-Critical Care Registered Nurse

-coronary care unit

-Consolidated Omnibus Budget

Reconciliation Act (of 1985)

-chronic obstructive pulmonary

disease

-Consumer Price Index

-cardiopulmonary resuscitation

-certified registered nurse, intravenous

-cathode ray tube

-certified respiratory therapy

technician

—U.S. Department of Health and

Human Services

-durable medical equipment

—Do-Not-Intubate order

—Do-Not-Resuscitate order

-diagnosis-related group

-emergency cardiac care

-extracorporeal membrane

oxygenation

EDTA

EKG

EMT

ESRD

FDA

GAO

GAU

GEC

GNP

GRECC

HCFA

HFV

HMO

HRSA

ICD-9

ICF

ICU

IPD

IV

JCAH

LVAD

LVPPV

MMSE

NCHS

—European Dialysis and Transplant

Association

-electrocardiogram (also ECG)

-emergency medical technician

-end-stage renal disease

—Food and Drug Administration

(DHHS, PHS)

-General Accounting Office (U.S.

Congress)

–geriatric assessment unit

-Geriatric Education Center

–gross national product

—Geriatric Research, Education, and

Clinical Center

—Health Care Financing Administration

(DHHS)

—high-frequency ventilation

—health maintenance organization

—Health Resources and Services

Administration (DHHS, PHS)

—International Classification of

Diseases, 9th edition

—intermediate care facility

—intensive care unit

—intermittent peritoneal dialysis

—intravenous

—Joint Commission on the Accreditation of Hospitals

—left ventricular assist device

—low-frequency, positive pressure

ventilation

—Mini-Mental Status Exam

—National Center for Health Statistics

(DHHS)

NCHSR/HTA-National Center for Health Services

NG

NHLBI

NIA

NIAID

NIH

NIMH

OCCPR

OHTA

Research and Health Technology

Assessment (DHHS, PHS)

—nasogastric (tube)

–National Heart, Lung, and Blood

Institute (DHHS, PHS, NIH)

–National Institute on Aging (DHHS,

PHS, NIH)

—National Institute of Allergy and

Infectious Diseases (DHHS, PHS, NIH)

–National Institutes of Health (DHHS,

PHS)

–National Institute of Mental Health

(DHHS, PHS, ADAMHA)

-open-chest cardiopulmonary

resuscitation

-Office of Health Technology Assessment

(DHHS, PHS, NCHSR/HTA)

441
442 ● Life-Sustaining Technologies and the Elderly

OTA

PHS

PPS

PRO

ProPAC

QALY

R&D

RDA

RICU

RN

RRT

SCO

SNF

TPN

VA

WAK

-Office of Technology Assessment

(U.S. Congress)

–Public Health Service (DHHS)

—prospective payment system

(Medicare, Part A)

—peer review organization

—Prospective Payment Assessment

Commission

-quality adjusted life years

—research and development

—required daily allowance

—respiratory intensive care unit

—registered nurse

—registered respiratory therapist

—supportive care only

—skilled nursing facility

—total parenteral nutrition

—Veterans’ Administration

—wearable artificial kidney

Glossary of Terms

Acute illness: An illness or condition characterized

by sudden onset, marked symptoms, and short

course. Compare chronic illness.

Advance directive: Instructions from a decisionally

capable individual regarding decisions about future

medical treatment in the event that he or she becomes decisionally incapable. An advance directive

may specify medical treatment the individual consents to or refuses, designate a surrogate decisionmaker, or both. See also durable power of attorney, living will.

Advanced cardiac life support: Sophisticated procedures used to restore and/or maintain breathing and

circulation in a person who has experienced cardiac

and/or respiratory arrest. Procedures include the

administration of drugs, electric shock, and incubation. Compare basic life support.

Allied health professionals: Health care personnel

whose roles supplement those of physicians and

nurses. Includes the many kinds of therapists and

technicians trained in resuscitation, respiratory

care, dialysis, nutrition, and intravenous therapy

who have varying levels of responsibility for patient

care and/or the medical equipment used in diagnosis and treatment.

Alzheimer’s disease: The most common form of dementia, a chronic organic brain disease leading to

severe, progressive loss of brain function and eventual death.

Amyotrophic lateral sclerosis (ALS): A motor neuron disease characterized by progressive weakening and wasting of the muscles that usually causes

death within 2 to 5 years. Also called “Lou Gehrig’s

disease.”

Anemia: A condition in which the blood is deficient

in red blood cells, hemoglobin, or total volume. Associated with a lack of well-being in patients with

chronic renal failure,

Antibiotic: Any one of many drugs that can inhibit

or destroy microorganisms, and that is administered

to cure or control numerous kinds of infections. See

life-sustaining antibiotic therapy.

Arrhythmia: Any variation from normal, regular

rhythm. Usually refers to abnormalities of cardiac

rhythm, including ventricular fibrillation, tachycardia, and bradycardia.

Arteriovenous fistula: A surgically created connection between an artery and a vein, commonly used

as part of the blood access system for hemodialysis.

Artificial airway Surgically created route for passage

of air into and out of the lungs.

Asystole: Absence of electrical activity in the heart.

Atherosclerosis: A common condition, in which deposits of fibrous and cellular tissue, cholesterol, and

fat accumulate in the arteries, impeding blood flow.

Autonomy: Derived from the Greek “autos” (self) and

“nomos” (rule, governance, or law), first used in

reference to self-rule or self-governance in Greek

city-states. In ethics, it is the principle that independent actions and choices of an individual should not

be constrained by others.

Bacteremia: A pathological state characterized by the

presence of bacteria in the blood.

Basic life support: The relatively simple resuscitative

procedures used to restore and maintain breathing and circulation in a person who has experienced

cardiac or respiratory arrest. Procedures include

clearing the victim’s airway, administering mouthto-mouth resuscitation, and manually compressing

the chest to stimulate the heart. Compare advanced

cardiac life support.

Beneficence: Mercy, kindness, or charity to others.

In ethics, it is the principle that one has a duty to

convey benefits or to help others further their important and legitimate interests.

Best interest (standard): A legal standard to guide surrogate decisionmaking. By this standard, the surrogate makes the decision from the point of view

of a hypothetical “reasonable person, ” on the basis

of objective, socially shared criteria. Compare substituted judgment.

Biocompatible: Able to exist in harmony with living

tissues, unlikely to cause infection, wear, or other

deleterious effects.

Brain death: Irreversible cessation of all function of

the entire brain, including the brainstem, as evi-
App. H—Glossary of Acronyms and Terms . 443

denced by loss of all reflexes and electrical activity.

Since 1970, many States have enacted legislation recognizing brain death as a criterion for determining

death.

Cardiac arrest: Cessation of the mechanical function

of the heart, resulting in the loss of arterial blood

pressure and irreversible brain damage and death

if blood circulation is not restored within minutes.

Cardiopulmonary resuscitation (CPR): A range of

technologies used to restore and maintain blood circulation and breathing in a person who has experienced cardiac and/or respiratory arrest. See advanced cardiac life support, basic life support.

Cardiovascular disease Any of a diverse group of diseases characterized by the debilitation of the heart

and/or blood vessels.

Caregivers: In this assessment, all persons who administer care to patients, i.e., health professionals including physicians, nurses, and allied health personnel; and lay persons, especially family members.

Case law: The aggregate of reported cases that form

a body of jurisprudence, or the law of a particular

subject as evidenced or formed by the decided cases,

in distinction to statutes and other sources of law.

Catheter: A long, thin tube through which fluids may

be introduced (e.g., nutritional formulas, drugs,

blood) or drained (e.g., urine, blood) in the course

of diagnosis or treatment.

Charge: The amount billed for products or services.

Chronic illness: An illness characterized by extended

duration or frequent recurrence, and slow development. Chronic illnesses vary in severity and impact on a person’s functional capacity. Some chronic

illnesses are life-threatening and require continual

medical treatment.

Chronic obstructive pulmonary disease (COPD): A

diagnostic term that designates several diseases

characterized by chronic airflow limitation: asthma,

chronic bronchitis, emphysema, and less common

diseases such as bronchiectasis and cystic fibrosis.

COPD is a major cause of respiratory failure in

elderly persons. Also called chronic obstructive lung

disease.

Chronic renal failure: An irreversible condition in

which the kidneys function at about one-quarter

or less their normal level.

Chronological age: An individual’s numerical age, dating from the time of his or her birth.

Code: Hospital terminology to designate the extent of

resuscitative measures to be taken in the event of

sudden cardiac arrest. See Do-Not-Resuscitate.

Code blue: A hospital’s emergency call for professionals to respond to a patient in cardiac arrest.

Cognitive ability: The ability to comprehend, remember, reason, and judge information. In the context

of this assessment, the content and the stability of

cognitive ability are of major importance.

Cognitive impairment: Diminished cognitive ability.

Comorbidity: The simultaneous occurrence of multiple medical conditions or diseases in a single person.

Competent In this assessment, any adult who has not

been determined by a court to be incompetent, as

there is legal presumption of competence. Compare

decisional’y capable.

Continuous ambulatory peritoneal dialysis (CAPD):

A method of peritoneal dialysis that maximizes patient ambulation and self-care. CAPD is performed

continuously, with exchange of dialysis fluid every

4 to 8 hours. CAPD is the most popular form of

peritoneal dialysis and the most widely used form

of home dialysis.

Continuous cycling peritoneal dialysis (CCPD): A recently developed form of peritoneal dialysis that

combines nightly use of a machine to cycle the dialysate in and out of the peritoneal cavity (see intermittent peritoneal dialysis) and daytime use of

ambulatory peritoneal dialysis (CAPD).

Cost: The actual amount spent to make facilities and

services available and to provide them. Also see

charges and payment. ‘

(Cost” is also used in a generic

sense when the distinction between cost, charges,

and payments is not clear.

Critically ill: In this assessment, a patient who is experiencing an acute life-threatening episode or who

is believed to be in imminent danger of such an episode. A critically ill patient is medically unstable and,

if not treated, likely to decline.

Decisionally capable: A patient who is assessed, without the involvement of a court, to possess the mental ability to make decisions or to participate in decisionnmaking. Compare competent.

Decisionally incapable: A patient who is assessed,

usually without the involvement of a court, to lack

the mental capacity to make a particular decision.

Compare incompetent.

Decubitus ulcers: Lesions or cavities on the skin frequently caused by lying in bed for a long period

of time. Also called bed sores or pressure sores.

Defibrillator An electrical device used to terminate

atrial or ventricular fibrillation. High-voltage electrical shock is delivered to the heart through two

paddles placed on the patient’s chest.

Dementia Severe impairment of mental function and

global cognitive abilities of long duration (months

to years) in an alert individual. Some forms (especially Alzheimer’s disease) are permanent; others

are reversible.

Diabetes mellitus: A chronic disease characterized by

inadequate secretion or utilization of insulin, by elevated blood sugar or the presence of sugar in the
444 ● Life-Sustaining Technologies and the Eider/y

urine, by thirst, hunger, and weight loss. Long-term

complications include disorders of the kidney, circulatory system, and retina.

Diagnosis-related groups (DRGs): Diagnostic categories used by Medicare (Part A) as case-mix measures, under the prospective hospital payment system. Categories are drawn from the International

Classification of Diseases and modified by the presence of a surgical procedure, patient age, comorbidities or complications, and other criteria.

Dialysate: The fluid into which impurities removed

from the blood by dialysis are passed. Also called

“dialysis fluid.”

Dialysis: In general, any process in which components

of a liquid or solution are separated on the basis

of the selective movement of different kinds of

molecules through a semipermeable membrane. In

renal dialysis, impurities are separated and removed

from the blood. The two main types of renal dialysis are hemodialysis and peritoneal dialysis.

Dialyzer: A machine for performing hemodialysis. It

consists of a compartment for the blood, a compartment for the dialysate, and a semipermeable membrane separating the two.

Distributive justice: Theories and principles for the

fair allocation of resources in general and scarce

resources in particular. See justice.

DoNot-Intubate (DNI) order: A directive by a physician not to intubate a patient for mechanical ventilation. Other life-sustaining efforts short of incubation are not ruled out.

DeNot-Resuscitate (DNR) order: A directive by a physician to withhold cardiopulmonary resuscitation

in the event that a patient experiences cardiac or

respiratory arrest. Also called “no code. ”

Durable power of attorney: A legal instrument empowering a designated person to act on another’s

behalf. Unlike the traditional power of attorney, the

“durable” power does not lapse if the person who

executed it becomes decisionally incapable. Originally intended to permit financial or property transactions, durable powers of attorney are also used

to delegate medical decisionmaking authority.

Elderly population: In this assessment, all persons

who are age 65 and over.

Electrocardiogram (ECG or EKG): A graphic record

of the electrical activity of the heart as detected by

an electrocardiograph machine.

Endotracheal tube: A tube designed to be inserted

through the natural opening of a patient’s trachea

(windpipe), usually for mechanical ventilation. The

two types of endotracheal tubes are nasotracheal

tubes (inserted through the trachea via the patient’s

nose) and orotracheal tubes (inserted via the patient’s mouth).

End-stage renal disease (ESRD): A late stage of chronic

renal failure in which kidney function is less than

10 percent of normal, and regular dialysis or kidney transplantation is required to maintain life.

Enteral nutrition: The infusion of nutrients into a person’s stomach or intestine via tubes placed through

the nose or a surgical opening into the gastrointestinal tract. (Though the term is sometimes defined

to include oral nutrition supplements, in this assessment it refers only to tube feeding.) Compare parenteral nutrition.

Ethics committee: Consultative committee in a hospital or other institution whose role is to analyze

ethical dilemmas and to advise and educate health

care providers, patients, and families regarding difficult treatment decisions.

Euthanasia: An act intended to cause the merciful

death of a person who is suffering from what is believed to be an incurable condition.

Extubation: Removal for any reason from a patient

of a nasogastric, tracheotomy, or other tube used

in treatment.

Family consent laws Laws that empower a family

member to take over decisionmaking for a decisionally incapable patient without going through guardianship proceedings.

Gastrostomy tube: An enteral feeding tube inserted

through the patient’s abdomen into the stomach.

Geriatrician A physician who possesses special knowledge of geriatrics or geriatric medicine. See geriatrics.

Geriatrics: The medical knowledge of physical disability in older persons—including the prevention, diagnosis, and treatment of disorders. Also called “geriatric medicine. ”

Gerontology The study of aging in all its aspects, including biological, psychological, sociological, economic, and historical perspectives.

Glomerulonephritis: Acute or chronic inflammation

of the kidneys characterized by inflammation of the

capillary loops in the glomeruli. A serious risk for

chronic renal failure.

Guardian: A person appointed by a court to protect

the interests of a person who is decisionally incapable.

Hemodialysis: The oldest and most widely used form

of renal dialysis. Blood is pumped in a continuous

extracorporeal loop, from an artery, through a dialyzer, and back through a vein. Treatments are

typically three times weekly, with each session lasting 3 to 5 hours.

Hemofiltration: An extracorporeal process of filtering the blood to correct various imbalances.

Hospice: A method of care that provides supportive

medical and social services for dying individuals and
App. H—Glossary of Acronyms and Terms • 445

their families. Hospice services can be provided in

the patient’s home, a nursing home, hospital, a special hospice facility, or a combination of these.

Hydration: The addition of water, as by intravenous

fluids, to the body.

Hypercapnia: Elevated concentration of carbon dioxide in the blood. Also called “hypercarbia. ”

Hypertension: A common and significant cardiovascular disorder characterized by persistently high

arterial blood pressure. Important risk factor for

life-threatening conditions, including cardiac arrest,

stroke, and chronic renal failure.

Hypoxia: Deficiency of oxygen in the tissues.

Iatrogenic: Complication, injury, or unfavorable result that is due to medical care. Especially drug reactions and hospital-acquired infections. Compare

nosocomial.

Incidence: The number of new occurrences of a disease in a specified population and period of time.

Incidence is often expressed as a rate (e.g., the number of new cases of pneumonia per 1,000 nursing

home residents during a 12-month period). Compare prevalence.

Incompetent: A person who has been determined by

a court of law to be unable to make and articulate

rational decisions.

Infection: An illness caused by an organism such as

a bacterium, virus, or fungus.

Informed consent: A legal term that refers to a person’s consent to a proposed medical intervention

after being provided information deemed relevant

to that decision. The information that is legally required include: diagnosis, nature and purpose of

proposed intervention, risks and consequences of

proposed treatment, probability that the treatment

will be successful, feasible treatment alternatives,

and prognosis if the treatment is not given.

Intensive care unit (ICU): A special hospital unit for

complex treatment and continuous monitoring of

critically ill patients.

Intermittent peritoneal dialysis: A form of peritoneal

dialysis that involves the use of a machine to pump

sterile dialysate into a patient’s peritoneal cavity and

to remove the spent dialysate. Typically performed

for 10 to 12 hours, 3 nights per week.

Intravenous Through a vein. Intravenous procedures

are commonly used for nutritional support, and for

administration of antibiotics and other drugs.

Intravenous feeding: Nutritional support provided

through a vein. See parenteral nutrition.

Incubation: Insertion of a tube into a body canal or

hollow organ, e.g., insertion of an endotracheal tube

into the trachea for mechanical ventilation.

Justice: Generally refers to fair and equal treatment.

In ethics, it is the principle that one should act in

such a manner that no one person or group bears

a disproportionate share of benefits or burdens. See

distributive justice.

Kidney failure: See renal failure.

Life-sustaining antibiotic therapy The use of any antibiotic against a life-threatening infection. Not a particular drug or family of drugs.

Life-sustaining technologies: Drugs, medical devices,

or procedures that can keep individuals alive who

would otherwise die within a foreseeable, though

usually uncertain, time.

Living will: A document in which a decisionally capable person expresses in advance his or her wish

not to receive certain life-sustaining treatments in

the event that he or she becomes decisionally incapable in the future.

Maintenance dialysiis: Hemodialysis or peritoneal dialysis that is required indefinitely or until renal

transplantation. Also called ‘(chronic dialysis.”

Mechanical ventilation: The use of a machine to take

over the role of a patient’s respiratory muscles, inducing rhythmic inflation and emptying of the lungs,

to permit adequate transport of oxygenation and

ventilation. See ventilator.

Medicaid: A joint Federal/State program that provides

medical benefits for certain low-income persons.

Medicaid eligibility, coverage, and reimbursement

regulations are determined by each State within

Federal guidelines and vary significantly among

States.

Medicare: A nationwide, federally administered health

insurance program that pays for medical care for

elderly and disabled beneficiaries and persons with

end-stage renal disease. Part A (Hospital Insurance)

covers hospital care, some posthospital nursing

home care, and some home health care services.

Part B (Supplementary Medical Insurance) covers

physician services, hospital outpatient services, outpatient physical therapy and speech pathology services, and various other limited ambulatory services

and supplies such as durable medical equipment.

Part B also covers home health services for Medicare beneficiaries who have Part B coverage only.

Morbidity: 111 health. Within a population, the number of sick persons or cases of disease in a specified

time period.

Myocardial infarction: Damage to a portion of the myocardium (heart muscle) as a result of insufficient

blood to the heart. Commonly called “heart attack.”

Nasogastric (NG) tube: An enteral feeding tube inserted through a patient’s nose, down the esophagus, and into a patient’s stomach.

Natural death acts: State statutes that authorize living wills.

Negative pressure ventilator: A device that induces

breathing by the application of negative (i.e., below

atmospheric) pressure. These relatively simple de-
446 . Life-Sustaining Technologies and the Elderly

vices are effective for some medically stable patients

with paralysis of the respiratory muscles. The iron

lung is a well-known early example.

Nonmaleficence: Generally associated with the maxim

“primum non nocere” (above all, do no harm). In

ethics, it is the principle that one has a duty not

to inflict evil, harm, or risk of harm.

Nosocomial: An infection or disease acquired in a hospital or other health care facility.

Nutritional support: Artificial methods of providing

nourishment and fluids. See enteral nutrition,

parenteral nutrition.

(DRG) Outlier: An atypical case that has an extremely

long length of hospital stay or extraordinarily high

costs when compared to most discharges classified

in the same diagnosis-related group.

Oxygenation: The delivery of oxygen to the blood.

(Cardiac) pacemaker: A device that substitutes for the

heart natural ability to regulate heartbeat, by generating electrical pulses to the heart. May be implanted within the chest wall or applied externally.

Also called “pacer.”

Palliative care: Care intended to keep a patient comfortable, but not intended to prolong life.

Parens patriae: A legal term that refers to the sovereign power of guardianship over persons who are

disabled, such as minors, insane, or incompetent

persons. Grants courts authority to appoint a

guardian.

Parenteral nutrition: Refers to any form of nutrition

that does not utilize the gastrointestinal tract but

usually refers to the infusion of nutrients directly

into the bloodstream via catheter. One form of

parenteral nutrition is total parenteral nutrition.

Compare enteral nutrition.

Payment: The dollar amount actually paid for a product or service. Also called “expenditure, ”

Peritoneal dialysiis: One of two major forms of renal

dialysis. Dialysis occurs inside the patient’s peritoneum, See intermittent peritoneal dialysis, continuous ambulatory peritoneal dialysis, and continuous cycling peritoneal dialysis.

Peritoneum: The semipermeable membrane lining the

abdominal cavity. In peritoneal dialysis, this is the

membrane through which impurities are passed

from the blood into the dialysate.

Peritonitis: Inflammation of the peritoneum. Peritonitis is the single most important complication of

peritoneal dialysis.

Pneumonia: An acute or chronic inflammation of

lungs, caused by exposure to a wide variety of

microbial pathogens or to toxic substances. Pneumonia is one of the five leading causes of death in

the elderly population.

Polypharmacy: The concurrent use of multiple medications by one patient.

Positive pressure ventilator: A ventilator that delivers respiratory gas to a patient by the application

of positive (i.e., above atmospheric) pressure to the

patient’s airway.

Prevalence: In epidemiology, the number of existing

cases of a disease present during a particular time

period and in relation to the size of the population.

Often expressed as a rate, e.g., the prevalence of

diabetes per 1,000 persons per year. Compare incidence.

Prognosis: An informed judgment about the likely

course and probable outcome of a disease based on

knowledge of the facts of a particular case.

Prospective payment: A method of payment for medical care in which the amount of payment is set prior

to the delivery of services. The basis for Medicare

Part A (hospital) payment since 1983. Compare retrospective cost-based reimbursement.

Renal: Pertaining to the kidneys.

Renal dialysis: See dialysis.

Renal failure: Acute or chronic loss of renal function to a level that is incompatible with life. Also

called “kidney failure.” See chronic renal failure.

Respect for persons: In ethics, the principle that individuals should be treated as ends in themselves

and never merely as means to the ends or goals of

others.

Respirator: See ventilator.

Respiratory arrest: Complete cessation of effective

breathing.

Respiratory failure: Life-threatening condition in

which the respiratory system does not provide adequate oxygenation and/or ventilation.

Respiratory insufficiency: Acute or chronic, lifeaffecting (in children, growth-affecting) disorder in

oxygenation and/or ventilation.

Respiratory intensive care unit (RICU): A specialized

unit in an acute care hospital for critically ill patients requiring mechanical ventilation and continuous monitoring of respiration.

Resuscitation: Procedures for the restoration of heart

rhythm and maintenance of blood flow and breathing following cardiac or respiratory arrest. See also

advanced cardiac life support and basic life support.

Resuscitation policies: Guidelines adopted by some

hospitals, nursing homes, and other institutions to

govern decisions about the use of resuscitation.

Retrospective cost-based reimbursement: A method

of payment for health care services in which the

amount of payment to a health care provider or patient is based on the costs that were already incurred in providing the services. Compare prospec-
App. H—Glossary of Acronyms and Terms . 447

tive payment.

Severely debilitated: In this assessment, a patient who

has serious or multiple impairments or comorbidities, with severely compromised functional capacity and physiological reserve. A severely debilitated

person is medically stable but highly vulnerable to

new physiological stress.

Substituted judgment (standard): A legal standard for

surrogate decisionmaking. By this standard, the surrogate makes the decision on the basis of what is

known about the patient’s personal values and

preferences. Compare best interest.

Surrogate decisionmaker: A person who is designated to make decisions on behalf of a person who

is incapable of making decisions. A surrogate decisionmaker may be selected in advance of a person’s

becoming decisionally incapable by means of a durable power of attorney or living will or may be

selected after a patient has become decisionally

incapable.

Terminally ill: A person for whom a prognosis of

death has been made, based on diagnosis of an illness that has a predictably fatal progression that

cannot be stopped by any known treatment.

Time-limited trial: Clinical trial of a treatment for a

predetermined time period.

Total parenteral nutrition (TPN): An intravenous

feeding technique that is capable of supplying sufficient nutrients to maintain a person’s normal weight

and growth over a prolonged period.

Tracheotomy: An artificial opening in a patient’s trachea, which is created by cutting through the patient’s neck into the trachea, often for the purpose

of inserting a tube for mechanical ventilation.

Tube feeding: See enteral nutrition.

Uremia: A symptom complex that accompanies ESRD,

characterized by retention in the blood of excessive byproducts of protein metabolism.

Urinary tract infection: Any infection of one or more

parts of the urinary tract.

Ventilation: The removal of carbon dioxide from the

blood.

Ventilator: A medical device that assists or replaces

the natural mechanisms for breathing. The terms

ventilator and respirator are used interchangeably,

but ventilator is currently the preferred term.

Ventilator-dependent: A patient who must rely on a

ventilator for survival, whether for a short time,

intermittently but frequently, or constantly.

Ventricular fibrillation: Twitching or beating of the

ventricles of the heart in an uncoordinated pattern,

without effective contraction and cardiac output.

The form of arrhythmia that most frequently precedes cardiac arrest.

Weaning: The step-by-step process of decreasing a patient’s dependence on mechanical ventilation until

the patient’s ability to breathe independently is fully

restored and the ventilator can be removed.
Index
Index

Acess

to health care, 17-18, 30-32, 73-76, 151-161

policy issues and options concerning, 30-32

Administration on Aging (AoA), 35, 362

Administrative Days Program, 75

Advance directives. See Durable power of attorney; Living wills

Advanced life support. See Resuscitation, advanced

Age

CPR use and, 174-175, 180, 181, 182, 184-185, 187

dialysis use and, 249, 250, 256-257, 259, 261-262, 266,

256, 259

effects of, on nutritional status, 277-278, 287, 288-290,

293, app. F

mechanical ventilation use and, 217-218, 225-226, 218

physiological functioning changes by, 78, 168, 207,

250, 279, 334, 79

technological resource allocation and, 151, 156-161

See also Elderly

Ageism

as barrier to recruitment in geriatrics, 364-365

life-sustaining treatment and, 30-31, 78-80, 108, 151,

156-161, 184-185

Albany Medical Center Hospital, 294, 302

Allied health professionals, 360-361, 382-383

See Health care professionals

Alzheimer’s disease. See Dementia

American Association of Critical-Care Nurses, 234, 360

American Association of Critical-Care Nurses’ Certification Corp., 382

American Association for Respiratory Care (AARC), 216,

217, 219, 222-223, 239

American Association for Respiratory Therapy (AART).

See American Association for Respiratory Care

American Board of Emergency Medicine, 382

American Board of Family Practice, 381

American Board of Internal Medicine, 381

American Board of Medical Specialties, 381, 382

American Cancer Society, 41

American College of Chest Physicians, 223, 239

American College of Physicians, 44

American Dietetic Association, 362, 382

American Geriatrics Society, 61, 381

American Health Care Association, 239

decisionmaking guidelines of, 62

nursing home survey by, 279-298

nutritional support education and, 299

American Heart Association (AHA)

biomedical research funding by, 41

certification by, 382

CPR programs of, 167

legal education by, 369

resuscitation standards of, 173, 174, 180

NOTE: Page numbers appearing in italics refer to information included in tables or figures.

American Hospital Association

“Baby Doe” regulations and, 64

employment data of, 376

medical technology assessment by, 44

Patient’s Bill of Rights by, 61-62

American Lung Association of Massachusetts, 217

American Medical Association (AMA), 383

“Baby Doe” regulations and, 64

decisionmaking guidelines of, 61

euthanasia policy of, 55

geriatric specialists and, 364

humanities and human values education and, 367

life-sustaining treatment statements by, 22, 129, 145,

315

medical technology assessments by, 44

PPS poll by, 74

treatment withholding/withdrawing poll by, 48

American National Standards Institute, 212

American Nephrology Nurses Association, 382

American Nurses’ Association

certification by, 381, 382

geriatric training and, 361

American Pharmacy Association, 383

American Red Cross, 167, 383

American Society for Parenteral and Enteral Nutrition,

287, 303

American Society of Allied Health Professions, 362

American Society of Internal Medicine, 74

American Society of Testing and Materials, 212

Antibiotics

administration of, 338

choosing, 336-338, 337

Antibiotic therapy, 4, 333-354

adverse reactions to, 343-345

costs of, 340

credentials for, 383

findings and implications involving, 349-351

need for, 334-336

outcomes of life-sustaining, 341-345

recommended, regimens for life-threatening infections,

336-338, 337, app. G

reimbursement for, 340-341

See also Technologies

APACHE II, 287

See Patient classification systems

Arteriovenous fistula, 253, 253

Association of American Medical Colleges, 381

Association of Community Cancer Centers, 194

“Baby Doe” regulations, 33, 63-64

Baltimore Longitudinal Study on Aging, 78

Barber v. Superior Court (California), 130-131, 134, 237,

239, 306, 309

Bartling v. Superior Court (California), 107-108, 125

Basic life support. See Resuscitation, basic

“Best interest standard,” 118

Beth Israel Hospital (Boston), 181, 196

451
452 . Life-Sustaining Technologies and the Elderly

Bethesda Lutheran Hospital (Minneapolis), 226

Blue Cross and Blue Shield Association of America, 44,

295, 304, 341

Bly v. Rhoads (Virginia), 95

Board of Nephrology Examiners, 382

Bouvia v. County of Riverside (California), 99, 100-101

Bouvia v. Glenchur (California), 100-101

Brophy v. New England Sinai Hospital, Inc. (Massachusetts), 99, 306, 309-310

Bureau of Health Professions, 380

California

durable power of attorney form used in, 110,111-114

incompetency judgments in, 104

judicial review of surrogate decisions in, 130-131

living will statute in, 59, 121, 122, 125, 345

Medicaid reimbursement in, 221

public guardianship in, 117

California Natural Death Act, 345

Canterbury v. Spence (District of Columbia), 94

Cardiac arrest, resuscitation and, 167, 168-169

Cardiopulmonary resuscitation (CPR)

See Resuscitation

Cardozo, Justice, 92, 93

Care Centers of Michigan, 213, 215

Care for Life, mechanical ventilation survey by, 216-219

Caregivers

for mechanical ventilation, 215, 231-232

roles of, 358-361

stresses on, 25-26, 369

See also Family; Health care professionals; Manpower

Child Abuse Prevention and Treatment Act, 63, 64

Chronic Obstructive Pulmonary Disease (COPD), 207,

208, 214, 223, 232

Chronic ventilator dependence, 226, 230-231

Clark, Barney, 151

Classification systems

See Patient classification systems

Cobbs v. Grant (California), 94

Cognitive impairment

treatment decisions and, 7, 22, 80, 104, 291, 298, 301,

346-349, 367

See also Competency

Colorado, 61

Committeeship. See Surrogate

Commonwealth v. Edelin (Massachusetts), 130

Competency

decisionmaking capacity and, 102-107

See also Cognitive impairment

Complications, 19, 20, 25

dialysis-related, 249, 250, 255, 260-261

DRGs and, 73, 75

malnourishment and, 295

nutritional support-caused, 317

positive pressure ventilation-associated, 211, 226-227

resuscitation-associated, 181, 182

total parenteral nutrition-related, 284-286

Congregate housing, 214

Congressional Budget Office (CBO), 3, 217, 221, 223

Conservatorship. See Surrogate

Consolidated omnibus Budget Reconciliation Act

(COBRA), 221, 379

Continuous ambulatory peritoneal dialysis (CAPD), 254-

255, 256, 254

Continuous cycling peritoneal dialysis (CCPD), 254, 255

Corbett v. D'Alessandro (Florida), 307, 311

Comorbidities, 5-6, 19, 25

DRGs and, 73, 75

infection vulnerability and presence of, 334

mechanical ventilation setting choice and, 213

renal dialysis and, 250

costs

of antibiotics, 340

of ESRD program, 249, 257-258, 258

of establishing public guardianship, 116, 117

of health care, 12-15, 18, 27, 65-67, 151

of life-sustaining technologies, 12-13

intergenerational responsibility for treatment, 160-161

mechanical ventilation, 12-13, 218-220, 219

nutritional support, 12-13, 295-297, 299-300, 303-304

prognostic uncertainty’s effect on, 19, 68

resuscitation, 177

technology’s effects on health care, 27, 70-71

courts

assessment of decisionmaking capacity by, 105-106

institutional ethics committees’ relationship with,

128-129

surrogate decision review by, 120-121, 130-131

surrogate decisionmaker appointment by, 116-117

Critical care

credentials in, 382-383

perspective of, 372-373

specialists in, 359-360

Cuirass, 209

Data

Federal role in life-sustaining technology, 28-29

on mechanical ventilation utilization, 216-218, 216,

217, 218

on resuscitation utilization, 175-176

unreliability of, for life-sustaining

17, 28, 44-45

Death, 19-20

CPR use and, 174, 179-180

determination of, 59

education, 368-369

ethical distinction between direct

of, 143-145

from infectious diseases, 342-343,

technologies, 11-13,

and indirect cause

346, 347

physicians’ reluctance to discuss issues related to, 187,

368

trends in, 77, 78

Decisionmaking

antibiotics, 345-349

capacity, 5, 7, 80, 95-97, 102-107

changing context of, 26-27

dialysis, 262-268

education for, 370

ethical distinctions between direct and indirect effects

of, 143-146
Index . 453

findings involving, 19-27

guidelines for, 20-22, 60-62, 57

interdisciplinary collaboration in, 371-375

legal aspects of, for elderly patients, 107-127

mechanical ventilation, 232-240, app. E

model of medical, 96, 97, 132

nonjudicial consultative sources for, 127-130

nutritional support, 305-318

policy issues and options involving, 32-34

project advisory panel’s principles for, 22, 23

prospective payment system’s effects on, 9-10, 18, 74-

75, 264, 266-267, 280, 295-297, 302, 303, 308

“quality of life” as factor in, 51-52

resuscitation, 183-194

surrogate, 22, 23, 34, 54-55, 109-117, 235-237, 238,

265, 267, 54

See also Institutional policies for decisionmaking

Dementia, 5, 7, 22

antibiotic therapy treatment and, 346, 347, 349

competency and, 104

in dialysis patients, 261, 267

hospice programs and, 65

infection diagnosis in patients with, 336

nutritional support and, 313-314

relationship of eating disorders with, 291

research, 26

resuscitation use and, 184

Demographics

of elderly population, 6, 27, 76-77, 77

intergenerational, and treatment responsibilities,

160-161

Department of Agriculture, U. S., 292

Department of Defense, U. S., (DOD), 32, 33, 41

Department of Energy, U. S., (DOE), 41

Department of Health and Human Services, U. S.,

(DHHS), 29, 30, 31, 35

“Baby Doe” regulations of, 64

health-related research funding by, 41

See also Health Care Financing Administration

Department of Transportation, U. S., (DOT), 383

Depression, 22

after resuscitation, 181

in ESRD patients, 261

Diagnosis-related groups (DRGs), 73-75

antibiotic therapy and, 340

“losers,” 18, 31, 74, 75, 296

mechanical ventilation and, 216, 220

nutritional support and, 295-296

“outliers” and, 73, 220, 296

resuscitation and, 177-178

Dialysis, 4, 249-271

clinical outcomes of, 259-261, 259

credentials for, 382

decisionmaking involving, 262-268

findings and implications involving, 268-269

home, 255, 256

peritoneal, 254-255

procedures for, 251-255

psychosocial outcomes of, 261-262

use of, 11, 256-258, 256, 257, 258

See also Technologies

Distributive Justice. See Justice, distributive

District of Columbia, 116-117

Doctors. See Health care professionals

Do-Not-Intubate (DNI) orders, 192, 193, 240

Do-Not-Resuscitate (DNR) order, 167-168

age and, 185

decisionmaking involving, 186, 187, 189-192, 193,

239-240

illness type and, 183-184

Medicare reimbursement and, 194

treatment given after issuing, 193-194, 195

use of, 189-192

Do-Not-Treat (DNT) orders, 192

Duke Longitudinal Study of Normal Aging, 78

Durable power of attorney, 21, 22, 34, 60, 63, 110-116,

125

antibiotic therapy and, 348

sample form for creating, 115

Dutch Association for Voluntary Euthanasia, 56

Education

CPR, 167, 169

death and dying, 368-369

health law, 369-370

humanities and human values, 367-368

PPS impact on health care, 376-380

See also Training; Geriatrics

Egalitarianism, 153, 155-156, 157, 158, 159-160

Eichner v. Dillon, 237

Elderly

antibiotic therapy utilization by, 334-336, 339-349

assessing decisionmaking capacity in, patients, 103-105

CPR use and, 174-175, 176, 177, 180-181, 182, 185,

187

dialysis use and, 249, 250, 256-257, 259, 261-262, 266,

256

distinguishing characteristics, 5-6

distributive justice theory and technology use by, 152,

153-156

heterogeneity of life-threatened, 6-7, 158, 8

legal aspects of decisionmaking for, 107-127

life-threatening infections affecting, 334, 335

mechanical ventilation use by, 216-217, 217

nutritional status assessment of, 277-278, 287, 288-290,

293, app. F

nutritional support and, 277-278, 287-291, 292, 294,

300-301, 304, 311-312, 314

physiological factors affecting drug distribution in,

343-345, 344

proportion of, requiring life-sustaining technologies, 12

report’s definition of, 5

training and education needs for treating, 336-371

treatment decisions for, 78-80

variation in decisionmaking capacity of, 7

variation in physical status of, 6-7

See also Age

End-stage renal disease (ESRD)
454 • Life-sustaining Technologies and the Elderly

data collection about, 11

decisionmaking and, 262-268

dialysis therapy for, 4, 249, 251-258

stress associated with, 261-262

End-stage renal disease (ESRD) program, 249, 250-251,

255

age as criterion for, 156

amendments to (1978), 257

costs of, 249, 257-258, 258

utilization of, 256-257, 256, 257

Enteral feeding. See Tube feeding

Estate of Leach v. Shapiro, 237

Ethics, 141-162

decisionmaking guidelines and, 20, 21, 57, 142-151

dialysis decisionmaking and, 266-268

direct v. indirect effects of decisionmaking and treatment, 143-146

findings and implications involving, 161

of life-sustaining technology distribution, 151-161

mechanical ventilation decisionmaking, 235-237

nutritional support, 290, 305-310

relationship between law and, 141

religion and, 62, 143, 145, 150, 159

resuscitation withholding decisions and, 187, 192

treatment methods and, 145-149

See also Institutional ethics committees

Euthanasia, 55-57, 62

ethical considerations involving, 143-145, 149

Expenditures. See Costs

Family

antibiotic therapy administration by patient’s, 339

attitude towards nutritional support, 312, 316

mechanical ventilation effects on patient’s, 231-232

nutritional support given by patient’s, 302-303, 316

resuscitation decision involvement by patient’s, 186,

187, 188

stress on patient’s, 25, 26, 231-232

Federated Council for Internal Medicine, 381

Food and Drug Administration (FDA), 35

antibiotic dosage recommendation by, 345

regulatory process of, 16, 42-43, 212, 281

Framingham Heart Study, 78

France

euthanasia use in, 56

support progams for ventilator-dependent patients in,

36, 215

General Accounting Office (GAO), 3, 74, 76

Geriatrics

barriers to recruitment in, 364-366

clinical education in, 366-367

credentials in, 381-382

Federal support for training in, 362-363, 379

historical context of, 361-366

roles of specialists in, 358-359

shortage of expertise in, 363-364

Gerontology

See Geriatrics

Goldwater Memorial Hospital (New York City), 214, 226

Griswold v. Connecticut, 93

Guardianship, 116-117

See Surrogate

Guidelines

antibiotic therapy treatment, 349, 351

ESRD treatment, 266

for mechanical ventilation, 239-240

nutritional support, 287

See also Standards

Hamilton v. Hardy (Colorado), 94

Handicapped Rehabilitation Act (1973), 63, 64

Health Care Financing Administration (HCFA), 28, 30-31,

32, 33, 36

coverage decisions by, 43

health statistics maintained by, 216

life-sustaining technologies data collection by, 11

PPS poll by, 74

reimbursement policy for nutritional support by, 299-

300, 303-304

See also Department of Health and Human Services,

U.S. (DHHS)

Health care professionals

conflicting perspectives of, 371-374

credentialing of, 380-383

education and training of, 16, 17, 19, 25-26, 292-293,

295, 298-299, 302-303, 366-371, 378-380

employment patterns, 376-378

interdisciplinary collaboration by, 371, 374-375

nutritional support attitudes of, 277, 308-309

reimbursement’s impact on training and employment

of, 376-380

roles of, 358-361

shortage of geriatric, 364

stresses on, 25-26, 231-232

Health Care Technology Assessment, 35

Health Industry Manufacturers Association, 43

Health maintenance organizations (HMOs), 42, 75

Health Resources and Services Administration (HRSA),

35, 36, 362, 364, 380

Hebrew Home of Greater Washington, 63

Hemodialysis, 252-253, 258, 253

Home health care, 14-15, 16, 46

antibiotic therapy use in, 338, 339, 340

dialysis in, 255, 256

mechanical ventilation charges in, 219-220

mechanical ventilation use in, 209, 214, 215

nutritional support use in, 300-304, 316-318

personnel needs for, 377-378

reimbursement for, 76, 214

Home ventilators, 209, 210, 212

Hospice

antibiotic therapy use in, 339

as alternative to life-sustaining technologies, 18-19,

64-65

Hospitals, 44-45

antibiotic therapy use in, 338, 339-340

life-sustaining technology use policies of, 21-22, 33-34,

193, 195-197

mechanical ventilation charges in, 219, 219
Index ● 455

mechanical ventilation use in, 209-210, 213, 214, 215

nutritional support costs and reimbursement to,

295-297

nutritional support decisionmaking in, 311-312

nutritional support use in, 293-295

personnel needs of, 376-377

PPS use in, 73-75

ICD-9 (coding system), 294

Idaho, 61

Illinois, 223, 297, 377

incompetency judgments

Medicaid reimbursement

in, 104

in, 221

Incompetence. See Cognitive impairment; Competence

Infection

diagnosis of, 336

recommended antibiotic regimens for life-threatening

recurring, 343

See also Antibiotics; Antibiotic therapy

Informed consent, 22-24

development of, doctrine, 93-94

exceptions to, requirement, 95

obtaining, for antibiotic therapy, 347-348

obtaining, for mechanical ventilation, 238

obtaining, for nutritional support, 312, 316

obtaining, for resuscitation, 188-189

practical problems involving, 95-97

standards for, 94-95

In re Colyer (Washington State), 93, 119, 120, 128

In re Conroy (New Jersey), 119, 120, 129, 306, 307

In re Dinnerstein (Massachusetts), 121

In re Farrell (New Jersey), 108

In re Guardianship of Hamlin, 120

In re Hier (Massachusetts), 306

In re Jobes, 307

In re L.H.R. (Georgia), 128

In re Qackenbush (New Jersey), 106

In re Quinlan (New Jersey), 93, 99, 120, 128

In re Requena (New Jersey), 99, 310

In re Spring (Massachusetts), 121, 130, 266, 267

In re Torres (Minnesota), 128

In re Yetter (Pennsylvania), 106

In the Matter of Application of Plaza Health and Rehabilitation Center (New York), 108, 306

Institutional ethics committees, 21, 60, 63

function and role of, 127-129, 141-142

President’s Commission support of, 60

resuscitation policy and, 195

Institutional policies for decisionmaking, 21-22, 33-34,

62-63, 130, 168, 193, 195-197, 297, 300, 304-305,

312, 315, 321

Insurance, private health, 18, 42, 154, 158

antibiotic therapy reimbursement by, 341

ESRD treatment reimbursement by, 257

mechanical ventilation reimbursement by, 221

nutritional support reimbursement by, 303

International Standards Organization, 212

Intravenous feeding

techniques and risks of, 283-286, 284, 285

See also Nutritional support; total parenteral nutrition

Incubation. See Intravenous feeding; Mechanical ventilation; Total parenteral nutrition

Iron lung, 207, 209

Joint Commission on Accreditation of Hospitals (JCAH)

accreditation standards of, 34, 240

institutional policy study by, 62

living will recognition and, 126-127

resuscitation policy and, 21, 34, 62, 168, 195, 197, 198,

321

Joint Review Committee for Respiratory Therapy, 383

Justice, distributive, 152-160

Kolff, Wilhelm, 151, 252

Kouwenhoven, W.B., 169

Lane v. Candura (Massachusetts), 106

Law Reform Commission (Canada), 62

Laws. See Legislation

Leach v. Shapiro (Ohio), 102

Legal Advisors Committee of Concern for Dying,

125-126

Legal issues, 91-131

concerning antibiotic therapy, 345

concerning dialysis, 267, 268

concerning mechanical ventilation, 237-239, 237

concerning nutritional support, 305-310

concerning withholding resuscitation, 192-193

criminal liability, 130-131

decisionmaking guidelines and, 20-21, 57

findings and implications involving, 132-135

in health education, 369-370

in withholding/withdrawing of treatment, 57-59, 58

Legislation

durable power of attorney, 21, 22, 60, 110

family consent, 21, 22, 60, 117

guardianship, 60, 116-117

living will, 21, 24, 59-60, 116, 121-122, 124, 125, 126,

127, 310-311, 345

Libertarianism, 152, 154, 158-159

Life-sustaining technology. See Technologies

Living wills, 21, 24, 34, 59-60, 63, 116, 121-122

antibiotic therapy and, 345, 348

criticisms of, 124-125

enforcement of, 125, 126-127

future of, 126-127

nutritional support and, 310-311

revocation of, 122, 124

variation in, statutes, 122

Malnutrition, prevalence of, 294-295, 298

Malpractice, 20, 94, 239

Manpower, 357-390

Massachusetts

judicial reviews of surrogate decisions in, 120-121

substituted judgment standard use in, 118

Maximin theorists, 153, 155-156, 157

Mechanical ventilation, 4, 205-245

certification for, 383

charges for, 13
456 • Life-Sustaining Technologies and the Elderly

clinical outcomes of, 224-227, 225

costs of, 218-220, 219

decisionmaking involving, 232-240, app. E

effects on mental and physical functioning of, 227-229

findings and implications involving, 240-241

psychological outcomes of, 228, 229-231

reimbursement for, 220-223

respiratory failure and, 207-208

utilization of, 11, 216-218, 216-218

See also Technologies

Medicaid, 18, 71, 377

antibiotic therapy reimbursement by, 340-341

home and community-based waiver, 221

living will recognition policy of, 126-127

mechanical ventilation reimbursement by, 221

nursing home reimbursement by, 45, 76

nutritional support reimbursement by, 297, 298, 299-

300, 304

regulations affecting elderly people, 71-72

Medical Device Amendments (1976), 42-43

Medical model, 371-372

Medicare, 30, 31, 71, 72

access to, funding, 9-10, 14, 17-18, 30-32, 72, 73-75,

76, 220-221, 222-223, 249, 257-258, 295-296, 299-

300, 303-304, 340-341

diagnosis-related groups, 18, 31, 73-75, 177-178, 216,

220, 295-296

DNR orders and reimbursement by, 194

End-Stage Renal Disease program of, 11-12, 14, 156,

249, 250-251, 255, 256-258, 256, 257, 258

expenditures at end of life, 9-10, 67-70, 68

home health care coverage under, 76

hospice coverage under, 64-65

nursing home coverage under, 45, 75

nutritional support coverage under, 295-296, 299-300,

303-304

“outliers)” 73, 220, 296

prospective payment system, 9-10, 18, 42, 43, 71, 72,

73-76, 177-178, 220-221, 223, 258, 295-297,

376-380

Mercy killing. See Euthanasia

Mills v. Rogers, 93

Mini-Mental State Exam (MMSE), 291

Minnesota, 61

Minnesota Medical Association, 61

Mortality, 77-78

Natanson v. Kline (Kansas), 92, 94

National Ambulatory Medical Care Survey (1980), 339

National Association of Home Care, 76

National Board for Respiratory Therapy, 383

National Board of Nutrition Support Certification, 382

National Center for Health Services Research, 35

National Center for Health Statistics (NCHS), 28, 216

National Center for Nursing Research, 292

National Conference of Commissioners of Uniform State

Laws, 124

National Heart, Lung, and Blood Institute (NHLBI), mechanical ventilation workshop by, 233, 234, 235,

238, app. E

National Hospice Study, 65

National Hospital Discharge Survey (1984), 176

National Institute on Aging (NIA), 29, 35

Last Days of Life study by, 70

geriatric specialist study by, 363

geriatric training support by, 362

research funding by, 292

National Institute of Mental Health (NIMH), 35, 362

National Institutes of Health (NIH), 29, 30, 35, 36

critical care education and, 359, 372

health-related research by, 3, 41, 292

medical assessment programs of, 44

treatment withholding/withdrawal conference sponsored by, 17

National Intravenous Therapy Association, 383

National Medical Care Utilization and Expenditure Survey (1980), 339

National Nursing Home Surveys, 101, 297, 298, 338

National Registry of Emergency Medical Technicians,

383

National Research Council

nutrition education and, 292

Recommended Dietary Allowances formulated by, 288

Natural Death Act (California), 59, 121, 122, 125, 345

Natural death acts. See Living wills

Netherlands, euthanasia use in, 56

New Jersey, 282

decisionmaking guidelines study in, 61

judicial review of surrogate decisions in, 120

ombudsman’s role in, 129

New York State

decisionmaking guidelines study in, 61

living will recognition in, 127

substituted judgment standard use in, 118

Northwest Kidney Center (Seattle), 259-261

Nurses. See Health care professionals

Nursing homes, 45-46, 75-76

antibiotic therapy use in, 338, 339

institutional policies in, 62-63

mechanical ventilation use in, 213-214, 215

nutritional support costs and reimbursement in,

299-300

nutritional support decisionmaking in, 312-316

nutritional support use in, 297-299

personnel needs of, 377

resuscitation policies and, 34

resuscitation use in, 175, 176, 179, 184, 189, 192, 190,

191

Nutritional status, effects of aging on, 277-278, 287, 288-

290, 293, app. F

Nutritional support, 4, 275-329

certification in, 382-383

charges for, 13

controversy surrounding, 26, 58-59, 131, 147-148, 155,

275-278

costs of, 295-297, 299-300, 303-304, 297

decisionmaking involving, 305-318

efficacy of, 287-288

elderly and, 277-278, 287-291, 292, 294, 300-301, 304,

311-312, 314
Index . 457

findings and implications involving, 318-321

mechanical ventilation and, 227

techniques for, 280-286

utilization of, 11, 293-295, 297-299, 300-303, 294

See also Intravenous feeding; Technologies; Total

parenteral nutrition; Tube feeding

Oak Forest Hospital (Illinois), 214

Office of Health Technology Assessment (OHTA), 35, 43

Older Americans Act, 129

Ombudsmen, 120, 129

Omnibus Budget Reconciliation Act (1981), 257

Oregon Health Decisions Project, 61

“Outliers, ” 73, 220, 296

Parens patriae powers, 98, 116

Parenteral feeding. See Intravenous feeding; Total

parenteral nutrition

Patient classification systems, 19-20, 29-30, 68-69, 287

Patient selection committees, 249, 263

Patients’ rights, 92-102

Peer review organizations (PROS), 31, 75

Peter, Hilda, 307

Physicians

See Health care professionals

Policy

CPR use, 34, 148-149

ESRD in the United Kingdom, 263

issues and options for Congress, 28-36

resource distribution, 152-156

See Institutional policies for decisionmaking

Presbyterian-University Hospital (Pittsburgh), 219

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral

Research, 3, 47, 53

decisionmaking capacity tests proposed by, 107

decisionmaking guidelines and, 21, 143, 144, 349

reports and recommendations issued by, 59, 60, 63,

72, 197

Prognosis, uncertainty of, 19, 29-30, 153, 206, 234

“Proportionality)” ethical traditions and criterion of, 146

Prospective Payment Assessment Commission (ProPAC),

296

medical technology assessments by, 43-44

PPS monitoring by, 74, 75

Prospective payment system (PPS)

effects of, on health care decisions, 9-10, 18, 74-75,

264, 266-267, 280, 295-297, 302, 303, 308, 341,

376-380

See Medicare

Public opinion

about euthanasia, 55-57

about surrogate decisionmaking, 54-55, 54

about use of life-sustaining technologies, 48-49, 53-54,

146, 54

Quality of care, 15-16, 35-36, 73-76

“Quality of life,” 10

age as a measure of, 156-157

effect on, of dialysis, 249-250, 259-262, 266-268

relationship of, to nutritional support decisions, 314,

317

treatment decisionmaking and, 18, 51-52

Quinlan, Karen Ann, 57, 63, 118, 128

Rand Corp. geriatrics manpower study, 364

Rawls, John, and theory of justice, 153

Recommended Dietary Allowances (RDAs), 288

Regional Kidney Disease Center (Minnesota), 262, 265

Reimbursement, 5, 13-14, 30, 31

antibiotic therapy, 340-341

ESRD patients, 257-258, 258

impact of, on health care professionals training and

employment, 376-380

mechanical ventilation, 220-223

nutritional support, 295-297, 299-300, 303-304

resuscitation, 177-178

See also Insurance, private health; Medicaid; Medicare;

Prospective payment system

Religion, ethical traditions of, 62, 143, 145, 150, 159

Renal dialysis. See Dialysis

Renal failure

functions of the kidney and their alteration in chronic,

250, 251

types of and treatment for, 250-251, 258

Research and development, app. C

Resource allocation

age as a criterion for life-sustaining technological, 151,

156-161

ethical, 152-161

intergenerational responsibility and, 158, 160-161

Respirator. See Ventilator

Respiratory arrest, See Respiratory failure

Respiratory failure

diagnoses associated with, 207-208, 208

mechanical ventilation and, 207-208

survival of, 224-226

Resuscitation, 4, 167-201

ABCs of, 169-170, 171

advanced, 170-174, 172

basic, 169-170

cardiac arrest and, 167, 168-169

certification in, 383

clinical outcome of, 178-181

complications associated with, 181, 182

costs of, 177

decisionmaking involving, 183-194

definition of, 4

findings and implications involving, 197-198

history of, 169

in-hospital, 170-174, 175, 176-178, 179-180, 181, 192

procedures involved in, 169-174

psychological outcomes of, 181-182

reimbursement for, 177-178

use of other life-sustaining technologies after, 181,

235, 239-240

utilization of, 12, 175-177

Right to refuse treatment, 98-102, 309-310

Right To Refuse Treatment (model) Act, 125-126

Roe v. Wade, 93
458 . Life-Sustaining Technologies and the Elderly

St. Michael’s Hospital (Toronto), 225-226, 225

Salgo v. Stanford University Board of Trustees (California), 94

Satz v. Perlmutter (Florida), 107, 237

Schloendorff v. New York Hospital, 92, 93

Scribner shunt, 253

Selfdetermination, common law right to, 92

Setting, treatment, 13, 14, 16, 31-32, 44-46

antibiotic therapy, 338-339, 347

mechanical ventilation, 213-215, 218, 222-223, 217, 218

renal dialysis, 255-256

resuscitation, 175

See Home health care; Hospitals; Nursing homes

“Slow codes,” 192, 193

Social Security Amendments (1983), 379

Society of Critical Care Medicine, 359

Standards

for determining decisionmaking capacity, 106-107

health care licensing, 380-383

informed consent, 94-95

for institutional ethics committees, 142

for nutritional support at home, 303

for nutritional support specialists, 293

mechanical ventilator performance, 212

of care, for mechanical ventilation, 239-240

resuscitation, 168, 173, 174, 180, 197, 198

for surrogate decisionmaking, 117-119

See also Guidelines

State Department of Human Services v. Northern

(Tennessee), 106-107

“Substituted judgment standard,” 118-119

Suicide, 149-151

Superintendent of Belchertown State School v. Saikewicz

(Massachusetts), 93, 109, 118, 120-121, 128, 129,

267

Surgeon General, Office of the, 3, 241

Surrogate

advance appointment of, by patient, 110-116

court-appointed, 116-117

decisionmaking by, 22, 33, 34, 54-55, 235-237, 238,

265, 267, 316, 54

designation of, decisionmaker, 109-116

informal designation of, 117

qualities of, 110

substantive basis for decisions by, 117-119

Technologies, 11-12, 154, 11

advances in life-sustaining, 16, 27, 35, 40-44,

app. C

affects on health care costs of, 70-71

age as basis for allocation of, 151, 156-161

alternatives to life-sustaining, 18, 36

costs of, 5, 70-71, 151

development and diffusion of, 41-42, 70-71, 41, app. C

ethical principles for life-sustaining, 142-149, 151-161

infection risk as result of life-sustaining, use, 334-335

life-sustaining, focused on in report, 4-5

perspectives and opinions on life-sustaining, 47, 52

professional training and, 370-371

Terminal illness

antibiotic therapy and, 342-343, 346, 347, 349

CPR use in, 167, 183-184

definitions of, 7, 122

ethical considerations of using life-sustaining technologies in, 153, 154-156

ventilator weaning in, 234-235

Total parenteral nutrition (TPN), 4, 5, 275, 287, 290,

293, 296, 304-305

consent requirements for, 24

decisionmaking involving, 308, 310, 311, 312, 316-317

techniques and risks of, 283-286, 289-290, 335, 284,

285

use of, 293-295, 297-299, 300-303

Tracheotomy, 211

Tracheotomy, 211

Training

acute care orientation in medical, 16, 17, 348, 367-369,

371-373

findings and implications involving health care professional, 384-385

health care professionals, 16, 17, 19, 25-26, 35-36, 366-

371, 378-380

lay caregivers, 215

nutritional support, 292-293, 295, 298-299, 302-303

See also Education

Transplant, kidney, 249, 251-252, 256, 261

Travenol Laboratories, 217

Treatment

bias towards, 16, 17, 22, 45, 99-101, 183, 188, 333,

345, 348, 367-369, 371-373

ethical distinction between direct and indirect effects

of, 143-146

ethics and methods of, 145-149

given after DNR order, 193-194, 195

practical problems in refusing, 99-102

right to refuse, 98-102, 309-310

setting, 13, 14, 16, 31-32, 44-46, 101-102, 175, 213-215,

218, 222-223, 255-256, 338-339, 347, 217, 218

trial period for, 17, 264-265

withholding and withdrawal of, 17, 36, 49-51, 142-143,

149-151, 183.194

Trial treatment period, 17, 264-265

Tube feeding

techniques and risks of, 280-283, 286, 281, 282

See also Nutritional support; Total parenteral nutrition

(TPN)

Tune v. Walter Reed Army Medical Hospital, 239

Uniform Rights of the Terminally Ill (model) Act, 123-

124, 125

Union Pacific Railway Co. v. Botsford, 92

United Kingdom

ESRD treatment in, 263

support programs for life-sustaining technologydependent patients in, 36, 215
Index • 459

Utah, living will form used in, 122, 123 nutritional support study by, 296

Utilitarianism, 152-153, 154-166, 157, 159 resuscitation policy of, 197

Ventilators, 209-213 Western Massachusetts Kidney Center, 268

Veterans Administration (VA), 28, 32, 33, 35 Wilkinson v. Vesey (Rhode Island), 94

DNR policy of, 239, 240 Wisconsin

geriatrics training support by, 362 reimbursement for mechanical ventilation, 22 I

health care by, 71-72, 178, 297, 300 Woolley v. Henderson (Maine), 95

health-related research funding by, 41, 292