Institutional Protocols for Decisions About

Life-Sustaining Treatments

July 1988

NTIS order #PB89-138895
Recommended Citation:

U.S. Congress, Office of Technology Assessment, Institution) Protocols for Decisions About

Life-Sustaining Treatments—Special Report OTA-BA-389 (Washington, DC: U.S. Government Printing Office, July 1988).

Library of Congress Catalog Card Number 88-600547

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

This special report extends the analysis provided in OTA0’s 1987 assessment of LifeSustaining Technologies and the Elderly. That report documented the numerous, serious uncertainties that complicate inherently difficult decisions about the use of medical

technologies that are potentially life-sustaining. OTA described uncertainties regarding: 1) outcomes of treatment—whether the patient will survive and, if so, with what

quality of life; 2) circumstances in which nontreatment may be ethical and legal; and

3) decisionmaking procedures—whose judgment to seek, for what, and when, and how

to resolve conflicts and ensure that a decision, once reached, is carried out.

To help reduce these various sources of uncertainty and their serious consequences,

OTA suggested a variety of actions Congress might take. One of these was to focus

on the policies and guidelines by which health care institutions circumscribe and articulate the procedures they will follow in making decisions whether to initiate, withhold,

or withdraw life-sustaining treatments.

This option struck a responsive chord in Senator John Heinz and Representative

Edward Roybal, requesters of the 1987 OTA report. Representing, respectively, the Senate

Special Committee on Aging and the House Select Committee on Aging, they requested

this study of the development and implementation of institutional policies and guidelines for decisionmaking with respect to life-sustaining treatments.

This report was prepared by OTA based on a contract report by Steven H. Miles,

M. D., and his colleagues at the University of Chicago’s Center for Clinical Medical Ethics.

Other important contributors were the individuals who participated in the OTA workshop on “Institutional Protocols for Decisions About Life-Sustaining Treatments” held

October 15, 1987. The workshop was a forum for discussion of key issues and review

of the contractor’s draft. Participants were selected for their expertise in legal, ethical,

and clinical problems related to the use of life-sustaining treatments and in some cases

also for their representation of major associations of health care institutions and professionals. In subsequent months, workshop participants and additional outside reviewers

(see app. C) commented on the revised draft. This final report incorporates many valuable suggestions from all these individuals.

The authors and the members of the workshop represented a diversity of experience and interests regarding the use of life-sustaining technologies. However, they agreed

unanimously that institutional policies and guidelines such as those discussed here can

be a good approach for encouraging patients’ rights, institutional accountability, and

ethical treatment decisions, These individuals did not endorse any particular policy or

set of guidelines, nor did they say that institutional policies and guidelines alone would

solve the problems in clinical decisionmaking. Project participants’ different views about

what role, if any, Congress should take reflect an incomplete but noteworthy consensus

on these difficult questions.
— .

Workshop Participants: Institutional Protocols for Decisions

About Life-Sustaining Treatments, Oct. 15, 1987

Marshall B. Kapp, Chairman

Professor, Wright State University School of Medicine

Robert Wood Johnson Faculty Fellow in Health Care Finance, 1987-88

C. Ross Anthony

Associate Administrator for Program

Development

Health Care Financing Administration

Mila A. Aroskar

Associate Professor

School of Public Health

University of Minnesota

David Axelrod

Commissioner

New York State Department of Health

Sr. Diana Bader

Senior Associate for Clinical Ethics

Catholic Health Association of the

United States

John H. Burkhart

Chairman

Council on Ethical and Judicial Affairs

American Medical Association

Nancy M. Coleman

Staff Director

Commission on Legal Problems of the Elderly

American Bar Association

Msgr. Charles J. Fahey

Director

Third Age Center

Fordham University

Susan Harris

General Counsel

American Health Care Association

Elma L. Holder

Executive Director

National Citizens Coalition on

Nursing Home Reform

Jane Hoyt

Chairperson

Nursing Home Action Group

St. Paul, MN

Alan Meisel

Professor of Law and Psychiatry

Co-Director

Center for Medical Ethics

University of Pittsburgh

Nicholas Rango

Executive Director

Village Nursing Home

New York, NY

Dorothy Rasinski-Gregory

Associate Chief of Staff/Education

Veterans Administration Medical Center

Long Beach, CA

William A. Read

President

Hospital Research and Educational Trust

American Hospital Association

Paul M. Schyve

Director

Department of Standards

Joint Commission on the Accreditation of

Healthcare Organizations

Alan J. Weisbard

Executive Director

New Jersey Commission on Legal and Ethical

Problems in the Delivery of Health Care

Susan M. Wolf

Associate for Law

The Hastings Center

Stuart J. Youngner

Associate Professor of Psychiatry and Medicine

Case Western Reserve University

School of Medicine

NOTE: OTA is grateful for the valuable assistance and thoughtful critiques provided by the workshop participants. The workshop participants do not, however, necessarily approve or endorse this report. OTA assumes full responsibility for ‘

the report and the accuracy of its contents.

iv
OTA Project Staff—Institutional Protocols for Decisions About

Life-Sustaining Treatments

Roger C. Herdman, Assistant Director, OTA

Health and Life Sciences Division

Gretchen S. Kolsrud, Manager, Biological Applications Program

Claire W. Maklan, Study Director

Katie Maslow, Analyst

Sharon Kay Oatman, Administrative Assistant

Linda Rayford, Secretary/Word Processor Specialist

Linda Starke, Contract Editor

Based on Report Prepared Under Contract,

at The University of Chicago, by:

Steven H. Miles

Assistant Professor of Medicine

Associate Director of the Center for Clinical Medical Ethics

Christine K. Cassel

Associate Professor of Medicine

Chair, Section of General Internal Medicine

Mark Siegler

Professor of Medicine

Director of the Center for Clinical Medical Ethics

Carlos F. Gomez

Pew Scholar in Medicine and Public Policy Studies

Bryan J. Marsh

Pritzker School of Medicine
—

Contents

Page

Chapter 1: Rationale for Institutional Decisionmaking Protocols . . . . . . . . 3

Social and Historical Context of Decisionmaking Protocols . . . . . . . . . . . . . . . . . . . . . . 4

Objectives of Decisionmaking Protocols ., . . . . . . . . . . . . . . . . . . ... , . . . . . . . . . . . . . . 6

Objectives Related to Clinical Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Objectives Related to Institutional Responsibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Chapter Z: Prevalence of Institutional Protocols: Current Status and

Future Prospects.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Current Situation .., . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

In Hospitals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

In Nursing Homes and Other Health Care Institutions . . . . . . . . . . . . . . . . . . . . . . . . 14

In Emergency Medical Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Incentives for Protocol Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Accreditation Standards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Other Incentives in the Private Sector, . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Incentives and Obligations in the public sector . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Legal Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

Barriers to Protocol Development and Implementation . . . . . . . . . . . . . . . . . . . . . . . . . 20

Barriers Within Health Care Institutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Public Policy Barriers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Barriers Within Patient-Provider Encounters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Essential Steps in Protocol Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Recognition of Need.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Formation of a Drafting Committee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Protocol Drafting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Staff Education and Commitment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Congressional Options. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Appendix A: Content and Format of Decisionmaking Protocols . . . . . . . . . 33

General Comments. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

Paradigms of Decisionmaking Protocols . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

Specific Provisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

Appendix B: Sample Decisionmaking Protocols . . . . . . . . . . . . . . . . . . . . . . . . . 45

Appendix C: List of Reviewers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75

Appendix D: Glossary of Acronyms and Terms . . . . . . . . . . . . . . . . . . . . . . . . . 76

Appendix E: References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77

Box

Box Page

A. Profiles of Individuals Facing Decisions About Life-Sustaining Treatments . . . . . . . 7

Figures

Figure Page

l. Public Interests and Institutional Responsibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

2. Adoption of Decisionmaking Protocols in Minnesota Hospitals . . . . . . . . . . . . . . . . . . 14

vi
Chapter 1

Rationale for Institutional

Decisionmaking Protocols

This report focuses on the formal policies and

guidelines’ through which health care institutions articulate decisionmaking procedures and

identify permissible options regarding the use of

life-sustaining treatments for adult patients in their

care. Like the ethical dilemmas they seek to address, these policies and guidelines (referred to

collectively throughout this report as “institutional

protocols” or “decisionmaking protocols”) are recent developments and still controversial. They

are promoted by some—and decried by others—

as facilitators of the complex and momentous decisions made daily in health care institutions

throughout this country.

Protocols for making decisions about life-sustaining treatments are used to reach decisions to

provide and decisions not to provide particular

treatments. Thus, they proceed from the belief

that withholding or withdrawing life-sustaining

treatment is sometimes the right decision. Some

people reject this basic position and, with it, they

categorically reject the idea of decisionmaking protocols. Others reject the idea of decisionmaking

protocols because of their potential for misuse.

It is certainly true that, if poorly designed or

wrongly applied, decisionmaking protocols can

legitimize bad decisions, diffuse responsibility, or

be too rigid.

This report proposes that well-designed decisionmaking protocols at the institutional level offer positive benefits. Institutional protocols are

not held out as a panacea, nor as a way to make

treatment decisions easy. Moreover, no single protocol will suit all institutions. However, thoughtfully designed and accurately implemented protocols are one promising and feasible method to

foster clinical decisions that are responsive simul-

‘See app. D for definitions. The protocols that are the subject of

this report apply to health care decisions for adults of all ages. Protocols for decisions about the care of newborns or minors, for whom

different considerations may be indicated, are not addressed.

taneously to the needs of patients and the obligations of health care institutions and professionals.

The need to improve clinical decisionmaking as

well as the belief that institutional protocols will

help to do so find strong support in OTA’s 1987

report Life-Sustaining Technologies and the Elderly (156). For each of five life-sustaining medical technologies (cardiopulmonary resuscitation

(CPR), mechanical ventilation, renal dialysis, nutritional support (tube and intravenous feeding),

and antibiotic therapy for life-threatening infections), OTA reported on how clinical decisions are

made for elderly persons with life-threatening conditions, including who is involved and how decisionmaking varies from case to case and institution to institution.

Despite general acknowledgment of patients’

rights, OTA found that, in practice, treatment decisions are sometimes made unilaterally by physicians or other caregivers without knowing, or

without following, the wishes of individual patients. Further, the serious clinical, legal, and ethical uncertainties that prevail result in decisions

that are inconsistent and, too often, wrong. In

addition to the exigencies of each case, the type

of institution in which the patient receives care,

the State in which it is located, and the particular

treatment being considered are among the variables that affect how and by whom treatment decisions are made. Frequently, neither patients nor

health care professionals know ahead of time what

an institution’s response to particular treatment

requests will be. OTA found both intense interest in means to reduce decisionmaking problems

and mistakes and widespread optimism about the

potential value of institutional protocols.

The suggestion that there might be a role for

Congress in this matter derives from the fact that

many hospitals and most nursing homes in this

country currently have no formal procedures regarding decisionmaking about life-sustaining treatments. Moreover, the vast majority of existing in3
4

stitutional protocols are narrow in scope and leave

important questions unanswered. There is evidence of considerable interest in decisionmaking

protocols among health care institutions, as well

as forceful incentives in the form of new accreditation standards (see ch. 2). However, serious questions remain about whether voluntary incentives

go far enough and whether they are sufficient

to overcome serious inter- and intra-institutional

barriers to the development and implementation

of effective decisionmaking protocols. Thus, the

central congressional issue can be identified at

the outset: What steps, if any, should Congress

take with respect to institutional protocols for

decisions about lift+ sustaining treatments for

adults?

In this era of concern about health care costs,

skeptics warn that interest in institutional protocols, including the Government’s interest in

them, might be motivated by efforts to reduce

health care costs—by reducing care. Certainly, recent changes in public and private reimbursement

programs (e.g., Medicare’s prospective payment

system and capitated payment agreements) provide strong incentives for health care institutions

to restrain the use of expensive technologies (33).

Institutions’ financial survival is now linked directly to their ability to control costs generated

by individual patient care decisions, Thus, protocols that make it easier to limit care might be

adopted as a way to control costs. This potential

for abuse necessitates careful articulation of the

public interests to which health care institutions

are accountable—in addition to cost containment

and institutional survival.

Cost containment, especially in the form of limited health insurance benefits, also affects patient

decisionmaking, forcing some patients to forgo

beneficial treatments they otherwise would wish

to receive. Institutional protocols that make it easier for patients to refuse treatment must not at

the same time make it harder for those who want

recommended treatment to get it. Questions about

how financial considerations affect treatment decisions are be.vend the scope of this paper. Nevertheless, they warrant careful study.

SOCIAL AND HISTORICAL CONTEXT OF

DECISIONMAKING PROTOCOLS

The impetus for development of decisionmaking protocols can be traced to broad social trends

and to specific events within health care institutions. Traditionally, hospitals and other health care

institutions were seen as places in which patients

would be provided whatever treatments—and

only those--deemed useful and appropriate based

on medical criteria (85). Challenges by patients

to a paternalistic model of health care were rare,

health professionals seldom challenged their colleagues, and administrators entrusted clinical decisionmaking to the clinicians.

Scientific, technological, social, and economic

developments over the past three decades have

brought major changes throughout the health care

system. An impressive array of “life-sustaining”

technologies, including new drugs, devices, and

procedures, emerged, and these technologies rapidly became available in hospitals and other treatment settings throughout the country. These

powerful medical technologies have brought patients, health professionals, and families new

hope—and new, often difficult, choices.

Difficult choices about medical care have been

accompanied by new attitudes and behaviors that

are characterized, at least in part, by greater insistence on accountability. For example, interest

in human rights and consumer advocacy of all

kinds has led to the articulation of and demand

for patients’ rights. A general diminution of respect for and trust in traditional authority, including medical authority, has contributed to increased

malpractice claims, peer review of physicians, and

increased regulation of health care facilities. Multiple caregivers, the patient, and sometimes the

patient’s family members now expect to participate

in treatment decisions. New treatment options,

patient autonomy, the protection of vulnerable

patients, consideration of costs, and institutions’

need to manage all sorts of “risks” have been

added to the decisionmaking equation. In this environment, the complex relationships between phy-
5

sicians and patients, physicians and nurses, staff

and administrators, and institutions and the public have been increasingly tested.

The special requirements of one particular lifesustaining technology stimulated thinking about

and development of decisionmaking protocols. Effective techniques for cardiopulmonary resuscitation were introduced in the late 1950s.2 This

technology is distinguished by the need to apply

it, if at all, immediately. Once a cardiac arrest occurs, taking time to deliberate or to consult would

render efforts at CPR uniformly useless. This fact

resulted in a general presumption in favor of providing CPR, a presumption that came to be embodied in a “standing order.”

Although it was acknowledged that CPR is unwarranted if it is known in advance that a patient

cannot be saved, the standing order could not be

ignored. In response to this dilemma, an Ad Hoc

Committee of the American Heart Association and

the National Academy of Sciences described the

“do not resuscitate” (DNR) order, a physician’s order to countermand the standing order for CPR

(118). The first hospital DNR policies were developed in the late 1960s.

It was another 10 years before institutional protocols regarding other life-sustaining treatments

received explicit attention. Following the 1976 decision in the landmark case of Karen Ann Quinlan (75), an editorial published in the New England Joural of Medicine proclaimed that “limiting

medical treatment” was “out of the closet” (55).

The same issue included the policies of two hospitals regarding how decisions about life-sustaining technologies were to be made in these institutions (99, 132). These were not the first such

institutional protocols, but their assertive presentation marked a new phase.

Institutional resuscitation policies and guidelines

received an important boost a few years later

2(:PR refers to a range of technologies that restore heartbeat and

maintain blood flow and breathing following cardiac or respiratory

arrest, Procedures range from “basic life support ,“ which uses manual, external rardiac massage and mouth-to-mouth ventilation, to

“adlanced life support ,“ which may include prescription drugs and

sophisticated dmices such as an electrical defibrillator, temporar}’

card iac parrmaker and me(hanica] ventilator ( 156).

when they were advocated by the President’s

Commission for the Study of Ethical Problems in

Medicine and Biomedical and Behavioral Research

(130). Presently, DNR policies remain the most

common form of institutional protocol regarding

life-sustaining treatment.

In some institutions, early DNR policies have

now been revised to reflect changes in thinking

and changes in needs. One significant change is

explicit concern with the patient wishes regarding resuscitation, not just medical judgments about

its appropriateness or likely outcome. Also, some

institutions have developed decisionmaking protocols that go beyond considerations of resuscitation to address other life-sustaining treatments.

But many institutions are still struggling to get

resuscitation protocols in place, and others have

not yet reached even that point. Among those

without a protocol in place, the reasons range

from ignorance, to opposition, to practical difficulties (57, 80) (see ch. 2).

Decisionmaking protocols within health care

institutions need to be understood as just one of

several complementary mechanisms for improving clinical decisionmaking for persons with lifethreatening conditions. Legal tools for appointing

a surrogate (or proxy) decisionmaker (especially

durable power of attorney statutes) or for specifying advance directives (living will statutes) now

exist in many States. New Jersey has established

a Commission on Legal and Ethical Problems in

the Delivery of Health Care, and New York State

has a Task Force on Life and the Law, to advise

their respective legislatures. Another approach

is professional education and research by public

and private agencies, professional associations,

and individuals. Complementing this, some educational and advocacy groups (e.g., American Association of Retired Persons, Nursing Home Action

Group, Concern for Dying, Oregon Health Decisions, Vermont’s “Taking Steps, ” Society for the

Right to Die, and Americans Against Human Suffering) direct their activities toward the general

public. Institutional ethics committees, now commonplace in hospitals and beginning to appear

in nursing homes, also fill a combination of relevant educational, advisory, and patient advocacy

roles.
6

OBJECTIVES OF DECISIONMAKING PROTOCOLS

Decisionmaking protocols mediate the various

parties and interests to which health care institutions are accountable. If well-crafted and if implemented, they offer patients and their families

protection from poorly considered or imposed

treatment decisions; offer health care professionals and institutions much needed guidance

about ethical and legal dilemmas and a degree of

protection from censure or liability by directing

them toward acceptable practices; and permit customization to the needs of individual institutions,

It is essential to recognize that the individuals

for whom institutions’ decisionmaking protocols

become important are an extraordinarily heterogeneous population (156). A person dependent on

a mechanical ventilator might be lying in a coma

or, as was so dramatically shown by Senator Jacob

Javits, flying around the country giving speeches,

contributing to public life and savoring his own.

To help illustrate the objectives of decisionmaking protocols (and, in app. A, the implications of

specific design features), it is useful to describe

some of the people who face decisions about lifesustaining treatments, The four hypothetical cases

presented in box A (and referred to throughout

the report) differ in diagnosis, prognosis, wishes

regarding life-sustaining treatments, and capacity to participate in a treatment decision; they are

in different kinds of settings and in very different social and economic circumstances. A hypothetical physician is also described to give some

feel for the ethical dilemmas that confront health

care professionals.

Objectives Related to Clinical Decisions

Although ethical, legal, and professional codes

always presume in favor of sustaining life, there

is wide consensus that this presumption must be

ratified for each patient (62, 129, 130, 156). Lifesustaining treatment may be forgone when an informed patient declines it or when treatment

would be futile. Similarly, withdrawal of treatment

is not permitted without the patient’s (or surrogate’s) consent. Thus, treatment decisions must

be individualized, in light of each patient’s clinical situation, treatment objectives, and the benefits and burdens of the particular treatment being considered.

Encouraging appropriate, individualized

clinical decisionmaking is a major purpose of

protocols for decisions about life-sustaining

treatments. This involves creating treatment

plans that accommodate Robert Swanson’s categorical rejection of CPR as well as his wish to receive other indicated life-sustaining treatments in

some circumstances. It involves creating institutional means to allow Mary Hinkel to reject aggressive life-sustaining treatments while assuring

she will receive care to maintain her comfort and

dignity. It involves creating procedures to ensure

that Thomas Johnson’s appointed surrogate will

be allowed to serve in that capacity. And it involves

procedures that protect Mae Carver from decisions based on the judgment of other persons

about the quality of her life.

In addition to the overriding theme of individualizing clinical decisions, decisionmaking protocols purport to improve clinical decisions through

aiming to: clarify the rights, interests, and obligations of all involved, i.e., patient, family members,

and health care professionals; communicate practice standards; establish mechanisms for implementation of treatment plans, for staff accountability, and for resolution of disputes; provide

evidence of an institution’s effort to educate its

staff as to standards of clinical practice; and facilitate review to confirm either that proper care

has been given or that some changes are in order.

More specifically, proponents believe institutional protocols can improve clinical decisionmaking

●

●

if they:

decrease staff uncertainties about what practices are permitted, particularly in such unclear areas as termination of life-sustaining

treatments, decisionmaking for incompetent

patients, and decisionmaking when family

members disagree;

reduce stress and conflict among health care

professionals, patients, and families concerning controversial, difficult, or complex treatment plans, by focusing discussion and offering ethical guidance;
7

Box A.—Profiles of Individuals Facing Decisions About Life-Sustaining Treatments

Robert Swanson is an 84-year-old resident of the intermediate care section of a private nursing home.

He is without family but active in the affairs of the home. He has stated clearly and consistently that he

does not want any attempt at resuscitation in the event of a cardiac arrest, and he does not want any

form of life-sustaining treatment if he has lost the ability to interact with other persons. However, he has

stated with equal force that, as long as he remains able to interact socially, he does wish to receive aggressive life-sustaining treatment and emergency treatment to relieve symptoms of potentially fatal conditions.

Mae Carver is 64 and aphasic (unable to comprehend or express language), paralyzed on one side,

and incontinent of urine since a massive stroke 2 years ago. She has resided for 8 years in the skilled nursing

section of a private nursing home, at public expense. She appears to enjoy food, television, and the companionship of the nurse’s aides. She is not capable of clearly expressing any preferences regarding her health

care, and she has no family.

Mary Hinkel is a 47-year-old woman whose advanced cancer has progressed despite surgery, chemotherapy, and radiation. She has just been readmitted to the community hospital where she was previously

in the care of an oncologist. Now she is back in the care of her family physician, who had not seen her

for 2 years. Hospital nurses know this patient from her many previous admissions. They have discussed

with her many times her wish to receive only palliative care and to forgo any treatments that would prolong

her life. Mrs. Hinkel is confined to bed and near death.

Thomas Johnson is a 35-year-old with acquired immunodeficiency syndrome who is currently living

at home. He is well aware that, as his disease progresses, he may suffer serious cognitive losses and eventually become incapable of participating in treatment decisions. For now, despite his physician’s reservations,

he says that he wants all life-sustaining measures including CPR. But he strongly opposes life-sustaining

treatment in the event of permanent loss of cognitive function. Mr. Johnson is estranged from his family.

His male companion has offered to serve as his surrogate if one is needed. Mr. Johnson wants to be assured

that his wishes regarding life-sustaining treatments will be honored, whether he is still at home or in a

health care institution, and that, if he cannot do so himself, this friend will be allowed to speak on his behalf.

Dr. Ruth Levin is medical director of Torah Home, a nursing home created and supported by a large

Orthodox Jewish congregation. Torah Home mainly serves elderly members of the congregation but is

open to noncongregants as well. Dr. Levin regularly encourages her staff to reflect on the ethical aspects

of their work. She, the rabbi, and the staff of the home are aware of recent court cases regarding discontinuation of nutritional support. While this is not an immediate clinical issue in their facility, they do not

want ever to be compelled, against their moral beliefs, to withhold or withdraw this particular life-sustaining

treatment from any resident.

● reduce ad hoc decisionmaking procedures

and arbitrary decisions;

● increase patient or family involvement in

treatment decisions, by explicitly affirming

the principles of patient autonomy and shared

decisionmaking, and by empowering patients;

● improve the accuracy with which decisions

about life-sustaining treatments are implemented, by clarifying terminology and procedures for implementing treatment plans;

● decrease confusion and conflict regarding the

implementation of plans or orders to limit

treatment, by clarifying professional duties,

and by suggesting processes and procedures

for making and implementing treatment decisions;

● improve accountability for decisions, by specifying duties and requiring signed documentation;

● reduce unwarranted fear of litigation, by

sanctioning deliberative consideration and by

requiring documentation;

● reduce bad clinical practices such as deliberately ineffective resuscitation efforts, called

“slow codes, ” either by prohibiting them or

by offering morally and administratively

acceptable alternatives;

. increase caregivers' empathy toward dying
8

patients, by creating processes that articulate

positive health care goals other than sustaining life, when this is no longer possible or

wanted; and

● improve the ability to audit the quality of care,

by establishing written accountability for significant treatment decisions.

Objectives Related to Institutional

Responsibilities

The second major focus of decisionmaking protocols is on institutional responsibilities to a variety of public and private interests that are broader

than those of any individual patient (see figure

1). These responsibilities are the substance of “institutional conscience, ” a conscience that is partly

moral (as in the case of Dr. Levin’s Torah Home),

partly practical (as in the need to be Medicarecertified), and partly legal (as in the need to comply with State guardianship regulations). These

diverse interests are embodied in law, accreditation requirements, a facility’s elected mission, or

professional codes. The responsibilities, and perceptions of them, constitute the governance agenda

of the institution, and they powerfully shape the

actions that are permitted or encouraged, and that

are openly or covertly practiced.

protocols for decisions about life-sustaining

treatments provide formal mechanisms to address

Figure 1.- Public Interests and Institutional

Responsibilities

Protection of

vulnerable patients Patient autonomy

I

Institution

institutional responsibilities. Specifically, these institutional policies and guidelines address the following objectives:

1. Promote the institution’s responsibility to

safeguard the patient’s right to exercise autonomy in personal health care decisions.

The principle of patient autonomy (as distinct

from the autonomy of a particular patient) is

widely supported in statutory, constitutional, and

case law and by a consensus of bioethicists (62,

75, 85, 130, 156). Further, the patient’s right to

accept or refuse life-sustaining treatments is the

foundation for institutional practices and procedures to formulate and implement treatment plans

(6, 62, 130, 156).

In practice, however, patient autonomy is often

lost or denied. Many patients are unable to communicate their preferences and did not do so in

advance; health professionals sometimes fail to

fully inform patients about options regarding lifesustaining treatments or they proceed to provide

treatment without a patient’s (or surrogate’s) consent (156). Institutional protocols aim to support

the treatment preferences of all patients—those,

like Robert Swanson and Thomas Johnson, who

are decisionally capable and have expressed clear

and firmly held treatment preferences, as well

as patients like Mary Hinkel, who previously expressed her treatment preferences but can no

longer do so,

Patient autonomy is not, however, absolute.

Thus, when forgoing life-sustaining treatment

would result in direct harm to a patient’s minor

children, autonomy may be restricted (18). Conversely, patient autonomy does not mean there

is an unrestricted right to all health care a person

may want. Decisionmaking protocols intend to ensure that patients receive desired treatments that

offer them a chance of survival or improved

health, but they do not protect a claim on cosmetic surgery or other treatments that are not

medically indicated.

2. (Above and beyond #l): Promote protection

of vulnerable persons from decisions that are

counter to their preferences or interests.

Health care institutions are legally (77) and

morally accountable to the public interest to pro-
9

tect vulnerable patients.3 Protocols seek to advance the welfare of vulnerable persons by ensuring proper oversight and deliberation of treatment

decisions. Surgeon General C. Everett Koop and

others have asserted that nursing home residents

are especially vulnerable to having medical treatment improperly withheld because of prejudiced

evaluations of the quality of their lives (67, 68,

69, 73, 74, 87). This suggests that the protection

of vulnerable persons may be a particularly important objective for nursing home protocols.

3. Promote the institution’s particular medical or moral mission.

Many health care institutions are committed to

a particular medical or moral mission (125, 150)

that determines what treatment options will be

available. This mission may reflect interests of the

community that formed and supports the facility

or it may be a strategy to attract patients with

a certain viewpoint. For example, Dr. Levin’s Torah Home is accountable to a moral view that purports to enrich patient care by serving the needs

of a particular community. By formulating protocols that address their mission, institutions assert and seek to protect their individuality. Thus,

a Catholic hospital might use an institutional protocol to state its policy of not performing abortions (124). Hospices can describe their view of

appropriate care for persons with advanced cancer; tertiary cancer treatment and research centers

can do likewise.

Clear, timely, public statements of an institutional

mission may also help avoid conflict over treatment plans. To a certain extent, patients and health

professionals can choose institutions whose mission is compatible with their personal interests,

or at least avoid institutions with incompatible missions. It is unlikely that an institution’s mission

(whether expressed in standards for minimal care

or commitment to some religious doctrine) would

have legal precedence over the contradictory

3A]] patients with life-threatening conditions are vulnerable. In

this report, the term “vulnerable patients” refers specifically to persons who are so ill or disabled that they are unable to leave a facility

or challenge its practices; lack decisionmaking capacity or the ability to protect their own interests; lack family or friends to advocate

their interests should they be unable to speak on their own behalf;

or belong to classes of persons, like the elderly, whose interests may

be threatened by prejudire or stereotyping.

wishes of patients or their surrogates. However,

if a patient claims a right to treatment that is incompatible with the institution’s mission, it might

be necessary to transfer the person to a different

institution, with a different mission.

4. promote the public interest in protecting the

civil liberties of individual staff, so as not to

compel them to perform duties to which they

have a moral objection.

Health care facilities employ individuals who

often have their own deeply held views about the

use of life-sustaining treatments. The value this

society places on moral pluralism and voluntarism

weighs against compelling health care staff to

carry out treatment decisions to which they object (96). As long as it does not restrict a patient’s

right to refuse treatment, individual staff may be

permitted to excuse themselves from patient care

(39).

Institutional protocols can anticipate possible

staff conflict by making provisions both for excusing staff who have conscientious objections and

for transferring their patients to other providers,

when necessary. For example, by permitting a physician to withdraw from a case, a protocol could

enable Robert Swanson’s physician to stand by

his or her belief that it would be unconscionable

to withhold cardiopulmonary resuscitation from

a previously healthy 84-year-old.

S. Promote clinical practices that conform to

public policies, including statutes, regulations,

and common law, as well as to voluntary

standards.

Health care institutions are accountable to the

rules and norms of society, and practices within

such institutions must be consistent with these.

Thus, certain clinical practices are precluded, and

no protocol will change this. The intentional administration of a lethal drug, for example, is prohibited, even if a patient like Thomas Johnson or

Robert Swanson should request it. Similarly, instituting mechanical ventilation in a patient like

Mary Hinkel, who has a clear, contrary directive,

might constitute battery.

Protocols that encourage conformity to voluntary standards also serve practical goals. For example, regulations of the Health Care Financing
10

Administration requiring physicians to be responsible for treatment orders must be met for eligibility for financial reimbursement, and standards

of the Joint Commission on the Accreditation of

Healthcare Organizations must be met for accreditation. 4 Health care facilities that violate accepted

standards face possible criminal, regulatory, or

civil sanctions—including fines, ineligibility for

reimbursement, loss of required or desired accreditations, loss of licensure, placement in public receivership, suspension of admissions, or loss

of teaching programs or prestigious affiliations

(58, 68, 77, 79).

‘In 1987, the Joint Commission on the Accreditation of Hospitals

was renamed Joint Commission on the Accreditation of Healthcare

Or&iIIkiMiOnS. Hereinafter, it k referred to as JCAHO or as the Joint

Commission.

6. Protect the institution from public notoriety.

Protocols that promote decisions that are consistent, ethical, and humane offer health care

providers a degree of protection from public

notoriety. In addition, it appears that well-designed

decisionmaking protocols can reduce the risk of

legal action, and thereby also remove some of the

unwarranted fear of litigation that at times constrains ethical practice. Neither Robert Swanson’s

nursing home, nor Mary Hinkel’s hospital, nor

Thomas Johnson’s physician has any legitimate

fear that should cause them to fail to record and

honor the preferences of these individuals for

limited life-sustaining treatment. On the contrary,

faithful implementation of decisionmaking protocols that honor the treatment preferences of

individual patients will help keep health care providers out of the public eye.

CONCLUSION

Society has charged health care institutions to

conserve a diverse set of public interests and,

simultaneously, to protect the interests of individual patients. In general, since public interests

are grounded in a vision of good health care, they

converge with the interests of patients. For example, patients are generally served by principles

embodied in accreditation standards, as well as

by an institution’s cautious self-interest in not cutting corners in health care. As members of sectarian communities, patients are served by the

availability of health care facilities that strive to

provide care that respects the patient’s own moral

views. Disabled and vulnerable persons are served

by a special public interest in their welfare.

At times, however, necessary clinical choices pit

public against private interests, or one public (or

private) interest against another. Containment of

Medicare costs versus assuring access to care is

one example. Striving to provide optimal health

care while respecting a patient’s right to refuse

treatment is another. The high stakes in every

decision about initiating, withholding, or withdrawing treatment that is potentially life-sustaining escalate the seriousness and urgency of these

conflicts.

Institutional decisionmaking protocols that establish procedures and identify the range of acceptable choices offer a measure of guidance and

authority to assist the individuals who ultimately

must make treatment decisions. Implementation

of these protocols helps assure that similar cases

will be managed consistently and in accordance

with shared values.
Chapter 2

Prevalence of Institutional Protocols:

Current Status and Future Prospects

This chapter examines the extent to which decisionmaking protocols already exist in hospitals,

nursing homes, and other health care institutions,

and considers current activities within the public and private sectors that may encourage or im -

CURRENT

Several surveys have tried to determine the

prevalence of decisionmaking policies and guidelines in hospitals and nursing homes, but available data are incomplete and inconclusive. The

data do reveal substantial growth in the prevalence of protocols over the last decade, but they

also suggest serious remaining deficits. In addition, differences in focus, methods, and timing

of completed surveys leave some important questions unanswered. Some studies focus exclusively

on do-not-resuscitate (DNR) policies; others report

on broader guidelines to limit treatment. Unspecified definitions leave unclear what it means to have

an “informal” protocol, to be “considering” developing a protocol, or to “accept” orders from

another institution.

National estimates of the prevalence of decisionmaking protocols come from a survey conducted

in 1986 for the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) (93).

Data were obtained from a stratified, random sample of four kinds of health care institutions: acute

care hospitals, long-term care facilities, psychiatric

hospitals, and hospice organizations. The report

provided national estimates of the prevalence of

DNR policies as well as limited information about

the prevalence of policies for “withholding and/or

withdrawal of [other] treatment.”

In Hospitals

Of the four types of institutions surveyed, the

Joint Commission found that acute care hospitals

were the most likely to have a policy regarding

resuscitation. Fifty-seven percent of acute care

pede future development. Taking these existing

incentives and barriers into account, the final section identifies and discusses five congressional options for promoting wider adoption and use of

decisionmaking protocols.

SITUATION

hospitals reported that they had a “formal” DNR

policy in place in 1986; another 28 percent said

they had an “informal” policy. The national survey found (and this is consistent with findings from

smaller surveys) that DNR policies were most common in large, urban hospitals, especially those with

academic or religious affiliations. Most of the hospitals with no resuscitation policy were small and

located in rural areas. Only 20 percent of all responding hospitals reported that they addressed

issues of withholding and withdrawing treatments

other than resuscitation (93).

Published examples of hospital protocols include

those by: F.P. Arena et al. (15); Beth Israel Hospital (26); City of Boston, (36); F. Davila et al. (46);

R.S. Duff (50); M. Halligan and R.P. Hamel (60);

Los Angeles County (94); M. Mahowald et al. (97);

Massachusetts General Hospital (99); A. McPhail

et al. (100); A. Meisel et al. (104); S.H. Miles et al.

(107); Northwestern Memorial Hospital (123); Presbyterian University Hospital (128); T.E. Quill et

al. (131); Somerville Hospital (140); St. Joseph’s

Hospital, St. Paul, MN (143); St. Joseph’s Hospital,

Orange, CA (144); University of Wisconsin Hospital (155); J. Van Eys et al. (159); L. Volicer (162);

and Yale New Haven Hospital (169).

National data obscure possible State-to-State and

regional variations. Information on the prevalence

of decisionmaking protocols in different parts of

the country comes from a handful of surveys conducted within single States and one multi-State

survey. A survey in five Midwestern States (Illinois,

Indiana, Iowa, Michigan, and Wisconsin) found

that 35 percent of the responding hospitals had

13
14

a formal DNR policy in 1982, and an additional

24 percent were in the process of developing one

(117). The next year, a survey of Minnesota hospitals found that 44 percent of acute care hospitals had adopted DNR protocols and another 8 percent had protocols for “supportive care only” (see

figure 2 and app. A) (110). A 1986 survey by New

York State’s Task Force on Life and the Law (122)

found that only 29 percent of the responding hospitals had written guidelines for determining a

patient’s capacity to participate in a treatment decision.

The fact that large numbers of hospitals have

no decisionmaking protocol or have one that deals

only with resuscitation increases the probability

that the treatment preferences of the hypothetical patients described in chapter 1 would be carried out, if at all, only partially, and largely by

chance. The majority of acute care hospitals apparently do have a protocol that provides a means

to implement a DNR order. If Mary Hinkel is adFigure 2.-Adoption of Decionmaking Protocols

In Minnesota Hospitals

0

mitted to one of those hospitals, her advance directive rejecting cardiopulmonary resuscitation (CPR)

is likely to be implemented, But how many patients know, upon admission, whether the hospital has a protocol or what it says? Further, even

while honoring her DNR request, on-call personnel might also provide Mary Hinkel with unwanted

diagnostic tests or unwanted, potentially lifesustaining treatments such as intravenous antibiotics. For patients like Thomas Johnson, even

where there is a protocol permitting the treatment

he wishes, problems can still arise if the protocol

does not specify who may serve as decisionmaking surrogate.

In Nursing Homes and Other Health

Care Institutions

The first nursing home protocols regarding decisions about life-sustaining treatments were developed several years after hospital ones, and their

prevalence remains much lower. In 1986, only 20

percent of nursing homes reported having a written DNR policy and another 29 percent said they

had an “informal” policy (93). Published examples

of nursing home protocols include those by: King

County Medical Society (86); S.A. Levenson et al.

(88); J.D. Hoyt and J.M. Davies (67, 68); Task Force

on Supportive Care (149); and R.F. Uhlmann et

al. (152).

A 1984 sample survey of nursing homes in Minnesota found that only 10 percent of the responding institutions had a DNR protocol and 16 percent had institutional protocols for “limited

treatment .“ At the same time, the majority of these

institutions said that they “accept DNR orders”

(73 percent) or ‘(accept orders for limited treatment” (66 percent) (112). A 1984 survey of all

licensed nursing homes in the Portland, OR, metropolitan area reported that 41 percent of the responding institutions had a policy regarding resuscitation (89). New York State’s Task Force also

surveyed nursing homes, but did not ascertain

the prevalence of resuscitation protocols. It was

determined that only 13 percent of New York’s

nursing homes, in 1986, had written guidelines

for determining residents’ capacity to participate

in treatment decisions, despite the fact that staff

estimated nearly half their residents had no ca-
15

pacity and a fourth had only partial capacity to

make decisions (122).

This low level of formal protocols in nursing

homes means that for a patient like Robert Swanson, refusal of CPR will be difficult to implement.

Moreover, his ability to prevail in rejecting lifesustaining treatments other than CPR would be

limited by the particular provisions of the nursing home’s protocol and by his ability to clearly

express his qualified request. For a patient like

Mae Carver, who cannot speak for herself, the

absence of a protocol that makes the decision

process explicit and opens it to public questioning can invite inattention to her wishes or best

interests.

In 1986, 15 percent of nursing homes reported

that they had protocols addressing withholding

and withdrawing life-sustaining treatments other

than resuscitation (93). Examples described in the

literature consider decisions about nutritional support, antibiotic therapy, and transfer to hospitals

(25, 30, 59, 64, 88, 112).

The Joint Commission’s national survey also obtained data for representative samples of hospice

programs and psychiatric hospitals across the

country (93). In 1986, 43 percent of hospice programs reported that they had a formal DNR policy in place. Among psychiatric hospitals, only 11

percent had such a policy. About 12 percent of

the hospices and fewer than 2 percent of the psychiatric hospitals said they had protocols on withholding or withdrawing other life-sustaining

treatments.

In Emergency Medical Services

Decisionmaking protocols also have a place in

emergency medical services (EMS). Paramedics

and technicians employed by most emergency

medical services are required to provide aggressive life-sustaining treatment, without asking questions. This practice can conflict with an order in

a patient’s record or with a patient’s advance directive, especially in a health care system that tends

to automatically transfer people to a hospital when

a cardiac or respiratory arrest occurs (63).

To date, very few emergency medical services

have developed protocols that allow paramedics

to honor a DNR order received from a nursing

home or hospice home care program (98, 108,

116). Thus, nursing home and home care patients

like Robert Swanson or Thomas Johnson might

have their rejection of life-sustaining treatments

honored so long as they remain in the nursing

home or at home, but they might face unwanted

treatment if transferred. In some places, the only

apparent way to avoid an EMS standing order for

CPR is to not call the service if a patient who has

declined CPR has a cardiac or respiratory arrest

(25, 64, 88). This practice would protect patients

like Robert Swanson and Thomas Johnson from

unwanted CPR, but it could also deprive them of

desired treatment for reversible conditions or for

the prompt relief of severe distress.

Ideally, a single, coordinated set of protocols

would be in place for the emergency medical service and the health care institutions that might call

it, but this exists in very few places. In Minneapolis,

the EMS developed a model protocol for nursing

homes and for home care programs to go along

with its own (108, 116). Detailed discussion of interfacility protocols and the portability of protocols is beyond the scope of this report. (For further information on this subject see, e.g., the article

by S.H. Miles (106) or the forthcoming book by

S.H, Miles and C. Gomez (109).)

INCENTIVES FOR PROTOCOL DEVELOPMENT

Within both the public and the private sector, Accreditation Standards

a variety of incentives and requirements push

health care facilities to develop decisionmaking JCAHO accredits more than 5,000 of the 6,000

protocols. To date, the action likely to have the general hospitals in this country and over 3,000

most far-reaching impact is adoption by JCAHO other health care facilities. Thus any Joint Com -

of an accreditation requirement regarding resub- mission position on decisionmaking protocols carcitation protocols. ries great weight. In spring 1987, the Joint Com-
—

16

mission approved a new standard that requires

all accredited hospitals to adopt a policy on “withholding of resuscitative services” (78). Hospitals

were required to have a resuscitation policy in

place by January 1, 1988; nursing homes must

do so by July 1988; and psychiatric facilities must

have one by January 1989. Similar standards for

hospice programs accredited by the Joint Commission preceded these by a few years.

For hospitals and nursing homes, the Joint Commission’s new standards are essentially the same.

They direct the chief executive officer to provide

for development and implementation of a resuscitation policy that is developed in consultation

with medical staff, nursing staff, and “other appropriate bodies.” The Joint Commission requires

that:

●

●

●

●

●

the resuscitation policy be designed “to assure that patients’ rights are respected,”

procedures be described for reaching decisions about withholding resuscitation and for

resolving conflicts,

orders regarding resuscitation be written by

the physician primarily responsible for the

patient,

orders be documented in the patient’s medical record, and

the medical staff of the hospital (or physician

members of the nursing home’s professional

staff) and governing body of the institution

give formal approval before the resuscitation

policy takes effect.

This action by the Joint Commission will undoubtedly lead to development of a DNR policy

in many institutions that currently do not have

one. Even institutions that are not applicants for

accreditation by the Joint Commission may be

motivated to develop DNR protocols because

standards of that influential body can serve as

quasi-legal standards of practice to which any institution may be held accountable (see section on

legal considerations), For hospitals, moreover, accreditation by JCAHO confers ‘(deemed status” for

purposes of Medicare certification. Still, the influence of any voluntary incentive clearly is not

unlimited. In addition, JCAHO’s requirements are

conservative, in that they say nothing about lifesustaining treatments other than resuscitation.

Other Incentives in the Private Sector

Incentives for developing decisionmaking protocols also come from the professional associations to which institutions or their staff belong.

Numerous associations of health care institutions

have developed position papers or educational materials promoting development of decisionmaking protocols, though most have stopped short

of specifying procedures to follow (156). The “Patient’s Bill of Rights” of the American Hospital Association (AHA) endorses the patient’s right to receive information about his or her diagnosis,

treatment, and prognosis, and to refuse treatment

“to the extent permitted by law” (7). A 1983 position paper of the AHA (134) encouraged development of institutional protocols regarding resuscitation decisions.

The American Health Care Association, representing about 9,000 (out of approximately 17,000)

nursing homes (158), circulated a report on “Health

Care Decisionmaking in Long-Term Care Facilities”

(6). This report encouraged development of institutional protocols for “life-and-death” decisions

and identified topics that should be addressed.

The Catholic Health Association of the United

States (CHA) provides educational programming,

consultation, and publications to encourage establishment of institutional ethics committees, institutional protocols, and use of advance directives.

Upon request, CHA distributes samples of decisionmaking protocols to member hospitals and

nursing homes, currently numbering over 900

(17).

Associations of health care professionals also

support various means of improving and standardizing decisionmaking procedures. The biennial Current Opinions of the Council on Ethical

and Judicial Affairs of the American Medical Association (AMA) spells out standards of conduct for

physicians in relation to withholding or withdrawing a variety of life-sustaining treatments. In 1986

the AMA took the controversial position that “lifeprolonging medical treatment includes medication

and artificially or technologically supplied respiration, nutrition or hydration” (10). In December

1987, the AMA Council on Ethical and Judicial Affairs recommended to the AMA House of Delegates .

that “hospital medical staffs, with the approval
of governing boards, adopt statements of policy

regarding do not resuscitate (DNR) orders. ” The

report stated that “DNR policies should be based

on medical, ethical, legal, and community standards and should be consistent with any religious

principles adhered to by the hospital,” and it included some specific suggestions individual hospitals might consider in draftingaDNRpolicy(11).

State medical societies also influence the activities of their members and the hospitals and nursing homes in which these professionals work. Minnesota’s was the first State medical association to

adopt DNR guidelines, in 1981. This provided a

model for physicians belonging to that association and for the medical associations of some other

States. By 1985, 40 percent of all State medical

associations had adopted a model policy or model

guidelines for DNR decisions (105). One physician

specialist association that has addressed the subject of institutional protocols directly is the American College of Emergency Physicians. The association has resolved to develop a model protocol

on how emergency medical services should address DNR orders (I, 2) and has taken the position that decisions to forgo resuscitation in the

field must be in accord with written protocols (3).

The American Nurses’ Association (ANA) and

some State nurses’ associations encourage their

members to consider the appropriate role of

nurses in decisionmaking about withholding or

withdrawing life-sustaining treatments and to create formal documents on these topics. Examples

include the ANA’s Guidelines for Nurse Participa -

tion and Leadership in Institutional Ethical Review

Processes (12), the California Nurses’ Association

“Statement on the Nurse’s Role in Withholding and

Withdrawing Life-Sustaining Treatment” (32), and

the Florida Nurses Association resolution on

“Clients Rights Regarding Administration of Artificial Sustenance” (52).

Decisionmaking protocols have also been devised and encouraged by individual researchers

and by research organizations. A notable example is a 1987 publication by the Hastings Center,

Guidelines on the Termination of Life-Sustaining

Treatment and the Care of the Dying (62). In addition, citizens’ groups (149, 152) and State and local health departments (36, 94, 145) have promoted decisionmaking protocols.

Incentives and Obligations in the

Public Sector

The Veterans Administration (VA) exemplifies

a large, public network of health care institutions

in which central management now requires decisionmaking protocols for life-sustaining treatments. Throughout the VA system, the norm has

been to provide CPR to every patient who sustains a cardiopulmonary arrest “except where the

medical record contains a DNR order or resuscitation would be futile or useless. ” A new chapter

in the VA Manual makes explicit the autonomy

of terminally ill patients (VA Manual, M-Z, Pt. 1,

ch. 30, change 81, Aug. 18, 1987), requiring that

all VA Medical Centers develop a protocol “for dealing with issues involved when terminally ill patients request no CPR. ” At the discretion of individual VA hospitals, ‘(terminally ill” can be

broadened to include persons who are chronically

ill with no hope of recovery (133).

Another new chapter of the VA Manual will address life-sustaining treatments other than resuscitation and the withholding and withdrawing of

these treatments in situations other than cardiopulmonary arrest. ’ The DNR protocols of individual VA Medical Centers may vary, but all must

address the provisions and principles outlined by

the Central Office. Following the VA model, decisionmaking protocols could be imposed by central management in other public health care systems and in jointly owned or managed private

hospital and nursing home chains.

The approach taken in New York State illustrates

another way public action can lead to decisionmaking protocols in health care institutions. In

July 1987, New York enacted legislation that clarified the rights and obligations of patients, family

members, and health care professionals in making decisions about resuscitation (N.Y. Pub. Health

Law §§ 2960-78). The legislation, effective April

1, 1988, requires all hospitals, nursing homes, and

mental health facilities in the State to develop DNR

protocols consistent with the provisions of the legislation. The law was enacted in response to two

widespread problems: the entry of DNR orders

‘Chapter 31 of the L’A Manual (M-Z, Pt. 1) is currently undergoing final rek’iek~ (133).
18

without the consent of patients or family members, and the provision of resuscitation when it

was medically futile because of fear of liability

for entering a DNR order explicitly.

Legal Considerations

The central legal problem related to institutional

protocols is whether or not they have the force

of law (103). These protocols may be characterized as a form of private, interstitial lawmaking

(35, 103)–private lawmaking in that they are created by nongovernmental entities yet may turn

out to have legal force; interstitial lawmaking in

that they make rules on topics that are not governed (or not governed clearly) by existing judicial, statutory, or regulatory law.

Like judicial, statutory, and regulatory law (i.e.,

public law), institutional protocols establish substantive standards for conduct and set forth rules

of procedure for determining the applicability of

those standards to particular cases. Unlike public law, however, it is uncertain whether institutional protocols will be found by the ultimate arbiters of law—the courts-to have the force of law.

The result is serious uncertainty about the role

of protocols in potential litigation concerning lifesustaining treatments.

The potential role of institutional protocols in

litigation is a key concern of litigation-conscious

health care institutions and health professionals.

To date, the subject has received little explicit consideration, and it remains an “open question” (35).

The possible effects of protocols range from preventing litigation to inviting it. And if litigation does

ensue, protocols may constitute evidence that

ranges from irrelevant to conclusive. In this uncertain environment, counsel for different health

care institutions will continue to offer different

advice about the pros and cons of protocols and

about their particular provisions. However, some

of the factors likely to determine the role of protocols in litigation can be identified and controlled,

thus increasing the probability that protocols are

to the institution’s, as well as the patient’s, advantage.

Whether protocols forestall or invite criminal

or civil litigation depends mainly on three factors:

consistency with existing Federal and State law,

consistency with accepted standards of practice,

and faithful implementation (113). Protocols that

meet these conditions can be expected to provide

a degree of legal protection to institutions and to

persons who are responsible for their adoption

or implementation. Thus implementation of a hospital protocol to withdraw mechanical ventilation

from a brain-dead patient is legally low-risk if the

protocol’s provisions for determining brain death

meet accepted professional standards and if State

law recognizes brain death, On the other hand,

when a protocol conflicts with the law or fails to

meet professional standards, litigation—with a decision against the institution—is a realistic concern. A New York grand jury, for example, concluded that a hospital’s use of colored dots on a

nonpermanent record (rather than use of a written DNR order) “eliminated professional accountability, invited clerical error, and discouraged physicians from obtaining informed consent” (47, 58,

170).

The first factor in determining the effect of institutional protocols is consistency with existing

law. The effect of a protocol is safest, from the

perspective of institutional liability, and most certain when the protocol accurately embodies State

law. While such protocols (or particular provisions

of them) may perform important educational functions within health care institutions, they have no

independent legal effect because health care providers who rely on them are in reality relying on

existing law.

Protocols that go beyond the law–in that they

stake out institutional positions on issues that have

not been addressed (or have not been thoroughly

or clearly addressed) in legislation, regulation, or

judicial decision—are more helpful to health care

professionals, but their legal effect is less certain.

For instance, an institutional protocol may recognize and give effect to living wills, even in States

that have no living will law. (As of January 1987,

38 States and the District of Columbia had enacted

living will laws (156),) The legality of withholding

or withdrawing life-sustaining treatments in reliance on such a protocol is uncertain.

Institutional protocols that clearly and directly

conflict with existing State law are an invitation

to litigation, the result of which may be adverse

to the health care institution, its employees, and
19

staff acting in reliance on the protocol. For example, the living will statutes of at least eight States

specifically proscribe the withholding or withdrawing of nutritional support (156). At the same

time, many institutional protocols regard artificial nutrition and hydration as medical treatments

that may, like other life-sustaining treatments, be

withheld from terminally ill patients who refuse

them. It would appear that to follow such a protocol raises serious legal risk. In fact, however,

courts have repeatedly concluded that the living

will statute is only one way to exercise the right

to refuse treatment and that the right to reject

artificial feeding exists independently (40, 42, 70,

71, 76).

Some institutional protocols conflict with the

spirit, but not the letter, of existing law. An example would be a protocol that permits withholding

or withdrawing of artificial nutrition and hydration at the request of a patient who is able to make

and express a contemporaneous, informed decision, in a State where the living will statute precludes withholding of artificial nutrition and

hydration. Natural death acts apply specifically

to the advance directives of patients who are currently unable to participate in decisions about their

care. It can be inferred that the legislative intent

is to prohibit the withholding of artificial nutrition and hydration. On the other hand, in the absence of clear legislative history, it is also reasonable to conclude that the legislature merely meant

to prohibit the withholding of artificial nutrition

and hydration from patients who lacked the capacity to make a contemporaneous decision about

so significant an issue, rather than to override the

clear preferences of a decisionally capable patient

(103).

An institutional policy is more likely to be

creditable to a court, and thus more likely to provide a defense in litigation, if it is embodied in

writing and formally adopted by the institution.

The New Jersey Supreme Court would not support a nursing home’s wish to discharge a patient

whose treatment preference (discontinuation of

nutritional support) was morally objectionable to

the facility (73). Instead, the Court ordered the

nursing home to discontinue tube feeding for

Nancy Jobes, who was in a persistent vegetative

state for 7 years (72). In doing so, the court noted

that the nursing home’s ‘(policy” against discontinuing nutritional support was unwritten and that

the patient’s family had not been informed of this

policy before requesting that treatment be discontinued. The opinion left open the question of

whether the institution’s obligation might have

been interpreted differently had the patient’s family been prospectively informed of the informal

policy. (Ultimately, Mrs. Jobes was transferred to

Morristown Memorial Hospital, where nutritional

support was discontinued and she died.)

Protocols that go beyond existing law (but do

not clearly conflict with it) are more likely to be

recognized by courts as valid (and therefore to

provide protection from liability) if they are consistent with prevailing professional standards of

practice. In legal procedures, a protocol could be

variously interpreted as evidence of a standard

of care, as a safety code, as defendant’s own rules,

as a Iearned treatise, or as inadmissible evidence

(35). Since the 1965 Darling decision 45), policies

of health care institutions pertinent to their duty

to patients have been consistently admissible as

evidence of a standard of care and, as such, considered along with other relevant evidence.

The standard of care, established by common

law or statute, is the criterion by which health

care professionals can be found liable if their conduct results in injury to a patient, or by which

health care institutions can be found liable for

negligence if conduct of their employees results

in injury to a patient. Traditionally, the standard

of care is established by the common law standard of “reasonable care. ” That is, in order not to

be held liable, an individual must act as a reasonably prudent person would under like circumstances. Where the person sought to be held liable is a professional, the “usual and customary”

standard of practice of the profession is strong

evidence of what constitutes reasonably prudent

care.

In the Darling decision, standards of JCAHO

were for the first time accepted as evidence of

a standard of practice (24, 127). Based on failure

to meet the Joint Commission’s standards of practice regarding appropriate care of a patient’s broken leg, as well as violation of its own internal

policies, the hospital was held directly liable for
20

injuries to the patient. Since Darling, standards

of JCAHO have been used routinely by the courts

to determine negligence by health care institutions. Although such institutions may not be explicitly required to conform to standards proposed

by professional associations or accrediting bodies, nonconformity—if causally connected to a patient injury--can be used as evidence of negligent

institutional administration. This lends added import to the Joint Commission’s new standard calling for resuscitation policies.

differently in different places. However, there is

no evidence that institutional protocols that are

consistent with the law and with standards of

practice increase legal risk, and there is some evidence they reduce risk, especially compared with

resort to ad hoc or halfway procedures, such as

“slow codes” and undocumented DNR orders (82).

Accumulating case law, statutes like New York’s,

and new accreditation standards make a strong

case for the legal benefits of protocols.

In summary, the legal effects of protocols have

not been tested directly, and thus will be viewed

BARRIERS TO PROTOCOL DEVELOPMENT AND IMPLEMENTATIoN

As noted in chapter 1, substantial consensus already exists among the public, the health professions, and the law regarding fundamental principles for shared decisionmaking and patient

autonomy. However, considerable work remains

to be done to realize this consensus in practice,

and theoretical and practical problems impede efforts to develop and implement protocols that have

this goal, Moreover, consensus appears a long way

off on some issues, especially appropriate use of

nutritional support and appropriate care of uncommunicating, dying persons who did not previously express treatment preferences.

Barriers to development and implementation of

protocols for decisions about life-sustaining treatments extend all the way from private fears of

death to political and practical problems in effecting institutional and public policy change. The intensity and complexity of these private anxieties

and public interests suggest there is no simple

means to overcome them. In addition, these barriers are interconnected, each reinforcing the

others. For example, Mary Hinkel’s difficulty in

raising her wishes with her physician accommodates the physician’s reluctance to yield a paternalistic claim on medical decisionmaking, Robert

Swanson’s complex and conditional care plan goes

beyond the simplified assumptions of many nursing homes’ supportive care policies (see app. A).

Health care facilities that are sensitive to the needs

of vulnerable persons like Mae Carver have no

framework for balancing the benefits of treatment, the burdens of overtreatment, and their

own financial interests.

Thus, the first hurdle for those trying to develop

a decisionmaking protocol may be to revise the

goal of accomplishing what is ultimately hoped

for or what seems intellectually complete in favor of goals that are attainable in the short term

and that at least improve the status quo, Development of decisionmaking protocols is best seen as

an incremental process, building over time on an

existing, evolving consensus. In addition, because

the barriers are interrelated, efforts to resolve

them will involve cooperation among health care

institutions, practitioners, educators, patients, associations, foundations, and government agencies.

Barriers to development and deployment of institutional protocols, as well as some potential solutions, are discussed here under three general

rubrics: barriers within health care institutions,

in the domain of public policy, and in interpersonal encounters between patients and health care

professionals. As will be indicated, problems arise

in each stage of protocol development.

Barriers Within Health Care

Institutions

Different kinds of health care institutions face

different problems in attempting to develop and

then implement decisionmaking protocols, Variations in institutional mission, patient population
21

served, staff size and composition, available treatments, regulatory requirements, and organizational complexity are among the major variables

that distinguish health care institutions from each

other and that may facilitate or impede protocol

development. Other distinctions-including whether

nonprofit or proprietary, with academic or without academic affiliation, sectarian or nonsectarian, urban or rural, and government or private—

are also important. The following barriers can occur in any kind of institution.

Inadequate Multidisciplinary

Staff Forums

Health care institutions are staffed by diverse

groups of professionals with different perspectives, knowledge, roles, and interests. Physicians,

nurses, social workers, allied health workers, lawyers, and administrators have different relationships with patients and with each other, (And the

patterns are different in different types of institutions.) As a result, their views on the use of lifesustaining treatments and on what constitutes

appropriate decisionmaking often conflict (54, 156,

168). Forums for communication and exchange

among those who are responsible for making

treatment decisions and those who must carry

them out provide a base for developing protocols

that effectively integrate treatment planning,

caregiving, and legal responsibility.

Several existing types of multidisciplinary forums could be instrumental in protocol development and, later, can play a key role in implementing the protocols by educating staff about their

rationale, interpretation, and use. Ethics committees have already assumed an active role in protocol development. However, one-fourth to onehalf of all hospitals (especially small and rural ones)

still have no ethics committee (156). In nursing

homes, well over 90 percent may have no ethics

committee. (A national survey found “a minimum

of 2 percent” of nursing homes do have an ethics

committee (56).) (For a review of the purposes,

uses, and forms of institutional ethics committees,

see, e.g., the book by R. E. Cranford and A. E.

Doudera (44), the report of the president’s Commission (130)) or the article by F. Rosner (135).)

Patient care conferences are another forum

from which protocols could emerge, provided time

is reserved from talking about day-today details

for more generalized discussion of ways to improve patient care. In some institutions, ad hoc

protocol committees, study groups, or investigative task forces have been convened. Another possible forum for consideration of protocols is utilization review committees; however, because the

primary agenda of these committees is cost containment, some people warn against this (105).

For a variety of reasons, health care institutions

have limited ability to establish and sustain the

multidisciplinary interaction necessary to create

and implement decisionmaking protocols. In some

facilities, especially small nursing homes and rural hospitals, limited staff size (both in absolute

numbers and relative to the workload) is a major

obstacle. Many clinicians resist committee work;

crowded schedules, competing demands, and lack

of interest incline them against it. In most nursing homes, physicians’ limited presence makes collaboration with other staff difficult. This works

against the resolution of role-related tensions and

agreement on treatment plans or policy issues.

Inadequate Expertise

Another substantial barrier to protocol development is inadequate expertise among staff in either clinical ethics or health care law. Health care

staff are often not fully informed of current opinion in clinical ethics, especially in complex, constantly evolving areas such as surrogate decisionmaking. professional ethicists are increasingly

seen in hospitals, but institutions with a staff ethi -

cist are still very exceptional. Approximately 300

professional ethicists are employed by hospitals

in this country (80).

Many health professionals also have mistaken

views of their legal and professional duties (83).

Moreover, misconceptions among health professionals are sometimes amplified by lawyers for

the institution or by insurance companies that issue malpractice policies (23). Also, attorneys who

are unfamiliar with recent developments in medical ethics or with the constraints of clinical practice (as well as those inclined to rely on the judicial process for dispute resolution) may give

inaccurate or unrealistic advice regarding oversight, surrogate designation, or dispute review.

For example, lawyers for health care institutions
22

may conclude that lack of absolute protections

offered by explicit governance of clinical decisionmaking does not warrant the effort required to

develop a protocol. Indeed, as noted earlier, some

lawyers believe that a decisionmaking protocol

could increase the institution’s risk of liability or

public notoriety.

Obtaining or building the necessary expertise

will require personal and institutional commitments of time, money, and support for ethics and

legal education to develop a core of staff to serve

as resources in every health care facility. once

staff are trained and protocols are developed, ongoing programs of staff education will be required

to encourage implementation of improved decisionmaking practices.

Inadequate Leadership

Some health care institutions, especially nursing homes, lack leaders who can identify the need

for decisionmaking protocols and can initiate and

sustain the multidisciplinary effort needed to develop and implement them. Inadequate leadership

may take the form of resistance to protocols. Despite publicity and pressure on health care institutions about the value of decisionmaking policies

and guidelines, observers report that many people still believe such protocols are not needed (80)

or that they will have no effect on health care

(159), will abridge physicians’ prerogatives (100),

will increase patients’ anguish (21, 91, 141, 160),

or will be used to discriminate against persons

with severe disabilities (41). Others charge that

decisionmaking protocols are an attempt to engineer rather than to inculcate values into practice

(84).

Inadequate leadership is often associated with

inadequate resources for ethics activities, especially shortages of financial support, staff time,

and clerical assistance. Lack of leadership to create and sustain multidisciplinary staff forums is

a common problem, as noted earlier. Unpublished

data suggest that many nursing homes have not

developed protocols because no one in the institution has identified their function or need (33).

Leadership might be strengthened through

educational programs within health care facilities,

focused on the fundamental issues of good clinical decisionmaking practices. Such programs

would be appropriate for all staff and administrative groups. One element of this education

might be the dissemination of prestigiously endorsed model protocols that could be adapted to

individual facilities. External pressures,

JCAHO standards, might also effectively

age leadership within institutions.

Public Policy Barriers

Inadequate Theory of

Institutional Governance

such as

encourThe individual goals and responsibilities of institutional governance with regard to decisions

about life-sustaining treatments have not been adequately defined or interrelated. Public attention

has so far focused on distinct clinical decisionmaking principles, such as patient autonomy, not on

how to integrate treatment decisions into a comprehensive understanding of a health care facility’s total governance duties. The uncertainty that

results when diverse responsibilities conflict (see

app. A) is a disincentive to creating institutional

protocols. Another problem is that public policy

(in the form of statutes, case law, and institutional

protocols) can leave unclear the interpretation of

such key concepts as “decisionmaking capacity”

and medical “futility.” In addition, as discussed,

basic questions about the legal status of institutional decisionmaking protocols remain unanswered. All these problems impede both development and implementation of protocols.

For nursing homes, an additional public policy

problem is related to the highly regulated environment in which they operate. Federal and State

regulations, and especially what some people perceive as their inconsistent interpretation, create

what may be a unique and serious barrier to development of protocols in nursing homes. A nursing home surveyor may judge a decisionmaking

protocol either as an asset or as an outrage. Un-

. .
23

able to predict which, some nursing home administrators believe that a protocol with which a nursing home surveyor might find fault is worse than

no protocol at all (61). This kind of uncertainty

argues for examining the regulations and making sure they are understood by those who enforce them.

Questions involving the interrelationships of the

various responsibilities that health care institutions must balance warrant careful study. Better

understanding of these interrelationships would

help guide both public policy and clinical policies

toward the goal of improving decisions and advancing public interests.

Inadequate Financial Support

for Ethics Programs

The costs to health care institutions of employing professional ethicists, establishing and maintaining an ethics committee, and training health

care staff in clinical ethics are high. Health care

institutions that undertake these initiatives currently do so without public support, often by absorbing the expense into their net costs. Ethics

consultations, education, and related activities

(especially ethics education of those who teach

core staff in all health care disciplines) are essential to improving health care decisionmaking. Requiring certain minimum standards of ethics programming would help ensure that health care

facilities allocate funds, staff, and other support.

Financial support might come from Federal,

State, or private sources. Grants would be especially appropriate for support of academic or research initiatives, such as evaluative research on

protocol design and pilot programs for staff and

patient education and counseling, as discussed

earlier. The day-to-day operation of ethics programs within health care facilities will probably

need to be supported as a general administrative

cost. Some commentators have proposed that physician time to educate and inform patients about

options regarding life-sustaining treatments be

directly reimbursed by health insurance (53).

Present data and auditing procedures do not

allow good estimates of the costs of protocol design, staff education, the operation of ethics committees, or related activities. To a certain extent,

the reduction of misdirected or unwanted medical treatment and litigation would offset the costs

of this programming.

Barriers Within Patient-Provider

Encounters

Patients’ Inadequate Knowledge

or Motivation

Implementation of a decisionmaking protocol

requires a degree of support and cooperation on

the part of patients or their surrogates. That is,

while protocols specify procedures to follow when

the patient cannot participate in a treatment decision and when no surrogate has been designated,

they assume that when the patient is able to participate and when a surrogate is designated, he

or she will in fact do so—either by taking part

in discussions at the time the treatment is being

considered or by making a clear directive or appointing a surrogate in advance.

However, some patients who are decisionally

capable and the surrogates for some patients who

are not decisionally capable have great difficulty

discussing such personal and serious problems

frankly, or they are unable to grasp the medical

and legal information presented to them. Some

patients choose to defer decisionmaking responsibility to their physician or to a family member

(156). Others resist giving an advance directive,

fearing its mere existence might preclude discussion even while they remain able to participate

in a decision (66). After 15 years of spirited public debate, only a small percentage of patients have

discussed treatment preferences with their families or physicians or have written an advance

directive such as a living wiill.2

Whe only known data on this subject ~ome from a 1986 surle~’

of Oregon households. Researchers found that adults in 82 percent

of sampled Oregon households had heard about li\ing t~ills, Hot\ -

e~’er, respondents in only 16 percent of households said the} had

a Ii\’ing will. In households tiith one or more person(s) oi’er age

65, 23 percent reporting haling a ]il ing Jvill (20)
24

One way to reduce this problem is public education regarding patients’ rights and principles for

responsible decisionmaking. A major objective

would be to foster dialog within families as well

as between patients and health professionals. Such

public education would primarily aim to protect

patient autonomy through encouraging advance

planning for health care decisions. For efficiency,

the educational effort could be directed to individuals whose progression toward death or incompetence is foreseen.

Health Professionals’ Inadequate

Knowledge or Motivation

Like patients, staff of health care institutions

often have a poor understanding of decisionmaking principles or, more likely, lack the fortitude

to apply them in difficult clinical cases. In caring

for patients who are critically or terminally ill,

health professionals’ personal fear of death and

fear of failure as a healer may make them delay

raising the subject of life-sustaining technologies

or may make them unable to discuss treatment

options with sensitivity and openness. Timely and

skillful communication with patients and their

loved ones are basic to the implementation of decisionmaking protocols.

One solution is to translate the principles for

good communication and shared decisionmaking

into practical terms so that health professionals

are motivated and capable of applying them consistently and in timely fashion. Professional training of those who care for persons with potentially

life-threatening conditions must also inculcate realistic attitudes toward death and dying and toward

the role of health care professionals, to promote

beneficial communication. Part of this education

would focus on clinical ethics and, in particular,

respect for persons who are elderly, disabled, or

otherwise vulnerable.

ESSENTIAL STEPS IN PROTOCOL DEVELOPMENT

Development and adoption of decisionmaking

protocols appear to have four distinct stages. The

resources and routines of health care institutions

may be challenged at each stage, and the incentives and barriers just described can influence developments throughout the process.

Recognition of Need

The first step in developing a decisionmaking

protocol is to recognize that decisionmaking problems exist, to embrace the idea that a formal protocol will reduce these problems, and to put protocol development on the institutional agenda.

Anecdotal accounts (100, 159) suggest that the specific events and individuals within a facility that

propel protocol development are quite varied: a

new kind of case may raise legal and ethical uncertainties; difficult treatment decisions for a favorite patient may cause staff conflict; a lawsuit

against the facility (actual or threatened) or a publicized legal case elsewhere may heighten legal

fear; awareness that a neighboring facility has a

protocol may stimulate competition; concerned

staff may believe that a decisionmaking protocol

will improve responsiveness to patients’ needs;

or consumer groups such as nursing home residents’ councils may push for clarification of decisionmaking practices.

The events and perspectives that sometimes

stimulate development of protocols exist in all

kinds of health care institutions. These may reinforce and help prepare the way for any legal or

accreditation requirements that, in effect, force

institutions to recognize their need for a decisionmaking protocol. Because the events and their

interpretation vary, they may lead to different

kinds of protocols. For example, if a CPR case triggers discussion, CPR maybe all the resulting protocol addresses. Conversely, if the precipitating

problem concerns other treatments, the protocol

that is developed may be more inclusive.

Formation of a Drafting Committee

Another prerequisite to protocol development

is committed leadership. This may come from the
25

administration, ethics committee, chaplaincy office, or clinical staff. Protocol drafting maybe assigned to an existing group, often an ethics committee, or to a special task force (e.g., of a medical

practice review board). Self-selected, ad hoc drafting committees are seldom empowered by the

highest governing boards, though they may receive encouragement from senior administrators.

Rather, their strength stems from their internal

leadership and the commitment of a core group

of respected staff associated with their effort. Official empowerment may come later, when the

group’s purpose and track record are clearer.

For reasons discussed in the preceding section,

successful protocol development is greatly facilitated by a multidisciplinary staff team. Typically,

this includes physicians, nurses, social workers,

clergy, ethicists, and administrators. The actual

composition depends in part on the size and nature of the facility’s staff: physicians tend to be

more prominent in hospital committees; nurses

and social workers, in nursing home committees.

Other staff members will round out the group.

Some people believe that involvement of the institution’s legal counsel throughout the process

of protocol drafting is especially valuable. This

helps ensure that counsel has an understanding

of clinical and ethical issues, without which he

or she may be unable to provide either constructive evaluation of the finished protocol or realistic advice during the drafting process.

Protocol Drafting

The drafting process commonly begins with several meetings to allow members to express their

concerns and set an agenda for member education. To start, drafting committees need familiarity with and understanding of current policies and

practices within their institution regarding decisions about life-sustaining treatments. The head

of one drafting committee reported that an informal survey of staff helped identify sources of

confusion, conflict, and consensus, and thereby

helped focus the work of the committee (80).

Although decisionmaking protocols are meant

to fit the specific interests and circumstances of

individual institutions, this does not mean that

each drafting group must “recreate the wheel. ”

Published protocols provide a range of starting

points and ideas. Some drafting committees start

with a published policy or set of guidelines or use

a protocol of a neighboring facility as the basic

structure. Other committees rely on “model” protocols to guide their work. These are advisory documents, developed by institutions or individuals

claiming special expertise or authority, for the express purpose of assisting health care facilities in

developing their own policies or guidelines. (Examples of model protocols include those by: American Hospital Association (9); Bar Association of

San Francisco (19); Hastings Center (62); J.D. Hoyt

and J.M. Davies (67, 68); Joint Commission (78);

Medical Association of Alabama (101); Medical Society of NY (102); Minnesota Medical Association

(115); Task Force on Supportive Care (149); R.F.

Uhlmann et al. (152); Veterans’ Administration

(161); and S.H. Wanzer et al. (165).)

Amendments to a good model should be vigorously debated, but they may be necessary when,

to cite one consideration, external agencies impose requirements on a facility that are not adequately addressed in the model. For example, existing models for DNR protocols will have to be

amended if they fail to meet specifications of the

Joint Commission’s new standard. Models also

might be amended to conform to local usage of

key terms, in order to decrease confusion among

practitioners working at several different institutions, or to improve communication in interfacility transfers (106).

Adaptations may be made to conform to special moral (150) or medical (159) missions, or to

identify specific officers or bodies responsible for

implementing and revising the protocols (114). A

nursing home chain operating within a single State

should be able to design a model that can be used

by all its facilities with a minimum of modification. However, models proposed by national

groups may need to be substantially changed if

they are to work in diverse facilities in different

States. In anticipating the diverse needs of the

institutions starting from a single model, some

models provide a “menu” of optional provisions,

applicable or acceptable to certain institutions and

certain purposes. After dissemination of a model,

followup research could look at the adaptations

made by different institutions and evaluate whether
26

these suggest needed changes in the model itself

(111).

Drafting an original protocol or adapting an

available model does more than produce a protocol for a particular facility. The process is a crucial one, through which health care staff can learn

the intent and operation of the protocol and come

to “own” its provisions. This is another reason it

is important to have wide representation in the

drafting and review process. Restricting discussion to the administrative or trustee level, as has

sometimes been done, is bound to create problems later.

Health care institutions usually crosscheck the

proposed protocol at several levels. Most protocols

go through numerous drafts within the committee, where terms and concepts are vigorously debated. Early drafts might be circulated among clinical supervisors and other key personnel, and later

drafts among the entire staff for comment and

revision. In addition to permanent medical staff,

it is important to include housestaff and nurses—

the individuals who often must implement the protocols. This process is crucial if a facility like Torah Home is to claim that the protocol represents

the moral position of staff or of the institution.

Institutions may enlist outside ethics consultants

or lawyers before finalizing a decisionmaking protocol. Some people take the position that representatives of all groups that will be affected by

the protocol should have a say in its development.

This suggests that patients and family representatives should also be involved in the drafting or

review (23, 80).

Protocol drafting is a difficult process that can

take a longtime. Moreover, the importance of the

protocol and the educational value of the process

itself argue against rushing (171). Personal accounts of experience in several large university

hospitals suggest that, from start to finish, protocol drafting and adoption often takes a full year,

and sometimes 2 years (16, 80, 104, 171).

Staff Education and Commitment

It can never be assumed that creation and adoption of a decisionmaking protocol ensures its accurate and reliable implementation. Ideally, the

process of protocol development has created a

multidisciplinary core of staff who understand

the rationale for the policy or guideline and its

application to their work, and who will help to

educate their trainees and coworkers. Provision

for ongoing staff education to promote familiarity with, understanding of, and commitment to

the protocol is an important component of the

total effort to develop a decisionmaking protocol.

Moreover, the agenda for staff education is

broader than the procedures outlined in the protocol. It includes education in the ethical and legal principles that underlie good decisionmaking

and their application to clinical care.

Protocol implementation also requires sustained

and coordinated leadership and commitment by

the institution’s administration. This must extend

beyond the leadership of the individuals or committees that initiated development of the protocol.

Only institutional leadership can establish mechanisms for the periodic review of adopted protocols and for allocation of funds and staff time

for ethics committees and in-service training.

CONGRESSIONAL OPTIONS

The central issue for congressional consideration was identified at the outset of this report.3

3Many of the congressional policy options presented in chapter

1 of OTA’S report Life-Sustaining Technolo&”es and the Elderly (156)

pertain to improved decisionmaking. In particular, OTA identified

strategies that address access to health care, patients’ rights, and

support for research to improve clinical decisionmaking. The options presented here expand on that discussion.

What steps, if any should Congress take with

respect to institutional protocols for decisions

about life-sustaining treatments for adults?

The potential range of congressional responses

is as follows:

● Option 1: Take no action.

● Option 2: Seek more information.

● Option 3: Encourage and facilitate, within
27

●

●

the private sector and the States, voluntary

approaches to addressing problems in clinical decisionmaking.

Option 4: Encourage States and voluntary

agencies to adopt consistent and enforceable

standards for decisionmaking.

Option 5: Instruct the Health Care Financing Administration (HCFA), the Public Health

Service, other agencies of the Department of

Health and Human Services (DHHS), the VA,

and the Department of Defense to adopt regulations to require health care facilities under their authority to do one of the following:

5a: Adopt a resuscitation protocol comparable to that required by JCAHO;

5b: Adopt a decisionmaking protocol that

contains, as a minimum, elements specified directly or indirectly by Congress; or

5C. Adopt a protocol prescribed by Federal

law.

Any congressional action to encourage and improve institutional protocols for decisions about

life-sustaining treatments will proceed in the context of ongoing private-sector and State and local

initiatives. It could be argued that the activities

of non-Federal legislatures, courts, and regulatory

bodies, as well as private voluntary organizations,

collectively provide sufficient incentives and assistance to promote better decisionmaking regarding life-sustaining treatments. If this is the case,

congressional initiatives in this area would be unnecessary or redundant, and no congressional action is warranted (Option 1).

Among the members of OTA’s workshop panel

for this project, representing many of the major

associations of health care institutions and professionals, the option of no congressional action received only one strong vote of support. The chairman of AMA’s Council on Ethical and Judicial

Affairs indicated that he “and probably most doctors” would find congressional action in this area

unwarranted and unnecessary.

Many people, including the vast majority of

OTA’s workshop panelists, argue that Congress

could play a helpful role by actively seeking more

information on how treatment decisions currently

are made, on the effects of decisionmaking protocols, and on the adequacy of voluntary measures to promote them (Option 2). This could be

accomplished by holding hearings or by appropriating support for research through DHHS. Advocates of such research include the American Bar

Association, whose February 1988 conference on

Birth, Death and Law recommended that research

on treatment decisions precede any effort to encourage new legislation, since existing law may

be adequate (92).

Various aspects of the research agenda for supporting optimal decisionmaking protocols have

been discussed in the preceding sections. These

include study of how best to meet the objectives

of protocols and how to overcome barriers to their

adoption and implementation, specifically:

●

●

●

●

If

research that tests the basic assumptions of

institutional protocols—i.e., that they improve

clinical decisionmaking and reduce legal risk

to health care institutions;

trials of various model protocols and of methods to train health care professionals in their

use, especially addressing protocols in nursing homes, emergency medical services, and

home care, where experience is most limited,

to determine what specific design features

work best;

research to refine definitions of critical concepts used in decisionmaking protocols and

health law, e.g., “decisional capacity,” “terminal illness, ” and “treatment futility”; and

research on model legislation for advance

directives and interfacility communication of

them.

such research substantiates the presumed

benefits of institutional protocols, its dissemination might help to encourage their wider adoption. Also, specification of the impact of various

protocol designs could assist Congress, as well as

the States and individual health care institutions,

to formulate effective solutions to meet particular needs.

Option 3 is for Congress to encourage and promote, within the States and the voluntary sector,

activities that are related broadly to reducing problems in clinical decisionmaking. Activities already

occurring at the State level that may warrant congressional acknowledgment and support include

passage of living will legislation; development of

commissions to advise State legislatures on mat-
28

ters of health care ethics (New Jersey and New

York); and development of grassroots organizations concerned with ethical dilemmas in health

care (California, Oregon, Vermont, and elsewhere).

The contributions of professional associations, individual health care institutions, and private organizations include education, advocacy, and research. Emphasizing State-level and voluntary

activities would maximize flexibility and creativity,

and take advantage of existing initiatives. A serious reservation, however, is that many States do

not have the committed leadership or resources

to take up matters of health care decisionmaking

in an effective or timely way. The Federal Government could facilitate dissemination of information among the States.

Another approach is for Congress to encourage

States and non-Federal health care systems to

voluntarily develop and adopt enforceable standards that support consistent and ethical decisions

about life-sustaining treatments (Option 4). Among

the diverse examples are the decisionmaking

guidelines developed for nursing homes in California by that State’s department of health, New

York’s legislation on resuscitation, and JCAHO’s

standard requiring resuscitation protocols in the

institutions it accredits. Development of such

standards might be encouraged by Federal grants

to support State and local legislation, research,

education, and institutional initiatives. Financial

support would facilitate and stimulate a variety

of local solutions, from which much could be

learned. It would also signal the seriousness and

urgency with which Congress views this matter.

Option 5 would provide more definitive congressional leadership by imposing Federal regulation

on decisionmaking practices within health care

institutions. This could be accomplished by mandating the adoption of decisionmaking protocols

in all Federal health care institutions and by adding decisionmaking protocols to the requirements

for certification for Medicare and Medicaid. The

vast majority of hospitals and nursing homes in

the country would thus be affected.

In mandating decisionmaking protocols, Congress could leave a great deal, or nothing at all,

to the discretion of individual institutions. One

possibility (Option 5a) is to require that institutions adopt the resuscitation standard of JCAHO.

This standard indicates general topics that must

be addressed in any resuscitation protocol without specifying what the protocol will or will not

allow. Alternatively, Congress could require all

Federal health care institutions as well as nonFederal institutions that receive Medicare or Medicaid reimbursement to adopt decisionmaking protocols that go beyond decisions about resuscitation and that include certain specific features

(Option 5b). Finally, Congress could prescribe complete decisionmaking protocols and insist on their

adoption without modification (Option 5C).

The idea of congressionally mandated protocols

(whatever the degree of specificity) assumes that

private-sector and local initiatives are and will remain inadequate. Such a mandate was strongly

advocated by only one OTA workshop participant,

the director of a nursing home. He argued that

protocols are far less likely to be developed if left

to voluntary efforts and that, in many places, for

Congress to “not mandate” is equivalent to “allow

not to be done. ” The majority of workshop participants believed that the intense pursuit of these

questions by the health care sector, State legislatures, legal groups, patient advocacy groups, and

academic centers suggests no lack of will. Still,

some would argue, Congress could assume leadership in this area.

If Congress were to mandate adoption of decisionmaking protocols, this could be in accord with

one or more long-range goals. For example, the

goal might be for all health care institutions to

have a protocol in place by some specified future

date, say 1990 or 1992. Alternatively, Congress

could set target dates by which hospitals, then

nursing homes, and then other kinds of health

care institutions would have a protocol in place.

This type of long-range plan would encourage experimentation and permit time for research and

accumulating experience to be put to good use.

With Option 5a, resuscitation protocols would

be adopted throughout the health care system,

based on the most current and most widely accepted of private-sector standards, namely those

of JCAHO. Determination of specific provisions

of protocols would be left to the individual institutions, as would be the work of protocol devel-
29

opment, but the standards of JCAHO would provide guidance. Current HCFA regulations for

Medicare and Medicaid certification have no analog to the recent JCAHO requirement for a resuscitation protocol.

Option 5a is really a conservative step in that

the new decisionmaking protocols it requires

would not necessarily address life-sustaining

treatments other than resuscitation, despite a

growing consensus that this is important. Further,

the majority of non-Federal hospitals are already

obliged to meet the Joint Commission’s resuscitation standard, and many Federal institutions (notably VA facilities) are already required to have a

resuscitation protocol. The main effect of Option

5a would thus be to increase the adoption of resuscitation protocols in private institutions that are

currently not accredited by the Joint Commission.

The effect in nursing homes would be more significant than in hospitals since the majority of

nursing homes are not accredited by JCAHO.

Option 5b is for Congress to mandate that all

Federal hospitals and nursing homes and all nonFederal institutions that receive Medicare or Medicaid funds adopt a decisionmaking protocol that

meets certain specified, minimal requirements.

Regulations associated with Option 5b could, for

example, specify that protocols must address decisions about life-sustaining treatments in addition to resuscitation. Minimal, essential elements

of protocols could be identified without imposing rigid solutions and without attempting to be

comprehensive. For example, Congress could insist that protocols indicate how the patient’s capacity to participate in a decision will be assessed,

without imposing a method for this assessment,

Further, Congress could insist that all protocols

address assessment of capacity and documentation of decisions without suggesting that these essential elements make a complete protocol.

Support for mandatory decisionmaking protocols that are partially or totally prescribed by

Congress assumes that Congress or the agency

to which protocol design would be assigned is wellqualified for this task. Among participants at OTA

workshop, some strongly opposed the idea of Congress mandating protocols with content even partially specified. Some people reject, in principle,

legislative involvement in the details of clinical

practice. Others appreciate the laudatory intent,

but fear that the actual regulations would quickly

exceed the few ideas on which there is a sound

and stable consensus.

The most active congressional role would be to

dictate specific conditions and procedures for decisions about the use of life-sustaining treatments

(Option 5c). This approach would eliminate the

variability that now exists from institution to institution and State to State. However, objections

to Option 5b apply and are multiplied. I.ack of

empirical research on the strengths and weaknesses of particular features of protocols suggests

it would be premature for Congress (or for any

other group) to attempt to write an acceptable

“national” protocol. Congressional action to direct

clinical decisionmaking in advance of a consensus

from leadership within the health care industry

would be immensely controversial, would be unlikely to succeed, and might preempt constructive public discussion,
Appendix A

Content and Format of

Decisionmaking Protocols

General Comments

Decisionmaking protocols currently in use differ in

scope, content, format, and style. In this section, three

general protocol designs and some significant differences of style and content are described.

While considering the differences among protocols,

it is useful to remember that all have the same principal goal: to help a physician and patient (or surrogate)

choose the most appropriate care for an individual patient. Each approach to protocol design has advantages

as well as disadvantages, and each has features that

fit particular circumstances better or worse. It is probably premature to conclude that any single approach

is best or that any approach should be avoided.

Some advocates of institutional protocols believe that

the essential test is whether a protocol indeed works,

i.e., whether it successfully encourages dialog about

treatment questions and subsequent development and

implementation of appropriate treatment plans (16).

Delineating the effects of different types of protocols

and of specific features will require careful empirical

studies. Such evaluative studies could accompany the

ongoing process of protocol design and updating.

There has so far been very little investigation of the

effects of institutional protocols on decisionmaking

practices. Thus, numerous studies have reported that

physicians often do not involve patients in decisions

about resuscitation (21, 22, 51, 138, 153, 156, 166, 172,

173) but very few studies relate this finding to the presence or absence of a do-not-resuscitate (DNR) protocol.

Two hospital studies reported that the use of DNR

orders increased after a DNR protocol was introduced

and that understanding of DNR orders improved (22,

131). Another study reported that hospital staff read

the DNR protocol and said it helped their practice because it clarified the processes of making and implementing decisions to withhold life-sustaining treatment

and encouraged more open dialog (100). More detailed

studies of protocols and of specific design features

could lead to more effective protocol design.

Voice: Prescriptive v. Advisory

One key distinction among decisionmaking protocols

is the “voice” with which the processes of making and

implementing decisions are addressed. These processes

may be addressed either by a prescriptive voice (characteristic of policies) or an advisory voice (characteristic of guidelines). The difference should be kept in

mind in order to avoid using prescriptive language for

principles that are intended to be advisory, or vice

versa.

Hallmarks of the prescriptive voice are precise assignment of responsibility for decisions and detailing

of procedures to be followed in implementation. “The

nurse acknowledges the order by co-signing the ‘levels

of treatment order sheet ’,” for example, is a policy statement (154). This is quite unlike the advisory statement

“It is wise for the primary physician to ensure through

further discussion that the patient family has full understanding of the decision” (37). The prescriptive voice

is especially appropriate for stating fundamental institutional precepts, directing that essential procedures

be accomplished, and coordinating interactions among

health care professionals. Prescriptive language is less

well suited to directing the subtle encounters of physicians, patients, and family (84), especially in areas

where practice standards are incompletely defined.

(Published policies include those by: Beth Israel Hospital (26); City of Boston (36); Los Angeles County (94);

Massachusetts General Hospital (99); A. McPhail et al.

(100); Northwestern Memorial Hospital (123); Presbyterian

University Hospital (128); Somerville Hospital (140); E.V.

Spudis et al. (142); University of Wisconsin Hospital

(155); L. Volicer et al. (163); and Yale New Haven Hospital (169).)

The advisory or teaching voice of guidelines seems

better suited for assisting health care professionals.

33
34

Guidelines suggest approaches to morally and legally

difficult decisions about life-sustaining treatment while

allowing interpretive latitude to accommodate the ambiguity of clinical situations. Guidelines can elaborate

on fundamental principles (e.g., patient autonomy), explain the rationale for policy provisions (e.g., the role

of an ethics committee), or suggest approaches for difficult clinical situations (e.g., assessment of decisionmaking capacity or initiation of discussion about limiting treatment). (Examples of published guidelines

include those by: M. Halligan and R.P. Hamel (60); Hastings Center (62); S.A. Levenson et al. (88); J. Van Eys

et al. (159); St. Joseph’s Hospital, St. Paul, MN (143);

St. Joseph’s Hospital, Orange, CA (144); and S.H, Wanzer et al. (165).)

The flexibility of guidelines can accommodate the

nuanced and idiosyncratic physician-patient-family encounter (129, 139). This flexibility also allows for an

initial, provisional articulation of an emerging consensus within an institution regarding how to address

decisions about life-sustaining treatments, Some people believe that the flexibility of guidelines should be

retained in the final protocol; others maintain that

guidelines are an agreement on principles for decisionmaking about life-sustaining treatments, from which

more detailed procedural duties might later be derived

(159).

Prescriptive and advisory language are often combined in a single protocol (e.g., 26, 104, 107). Ideally,

the prescriptive language sets minimal standards for

procedural accountability and implementation, and the

advisory language elaborates on subjects or ideals that

are too elusive to be captured in prescriptive language.

Protocols that employ prescriptive language to state

advisory principles lead to confusion. Examples include

protocols that restrict the right to refuse life-sustaining

treatment to persons who are “terminally ill. ” Omission of any reference to persons who have not been

diagnosed as terminally ill implies that they do not have

the same right (100, 161).

Other Elements of Style

Several general principles can be recommended

based on experience to date with protocols in health

care facilities across the country.

Protocols are intended to influence medical, nursing, and social work practice and should be written

for the practitioners who use them. This suggests that:

s protocols should not employ arcane or legalistic

language,

● protocols should be formatted to facilitate locating desired information, and

c protocols should be as brief as possible so that

health care staff can grasp the totality of their intent and implementation (though a longer, companion protocol could include rationale and fuller

explanations).

With model protocols, designed to address the diverse needs of numerous health care facilities, length

is less important, The expectation is that models will

be shortened in creating individual protocols. Because

it is assumed that model protocols will be interpreted

and adapted by a facility’s “ethics experts,” models may

also be relatively complex. Still, designers of a model

should recognize that expertise in medical ethics or

law may be scarce among those charged with adapting it.

Paradigms of Decisionmaking

Protocols

There are three basic types of decisionmaking protocols, distinguished by whether they provide for donot-resuscitate orders only, care categories based on

either “treatment levels” or “treatment goals,” or

detailed treatment plans. (Examples of each appear in

app. B.)

Do-Not-Resuscitate Protocols

Protocols providing for implementation of do-notresuscitate orders were the first, and remain the most

prevalent, form of decisionmaking protocol (65, 110,

117). Numerous samples have been published. (Examples of DNR protocols include those by: Beth Israel Israel Hospital (26); City of Boston (36); Cleveland Clinic

(38); Los Angeles County (94); M. Mahowald et al. (97);

A. McPhail et al. (100); S.H. Miles et al. (107); National

Institutes of Health (120); Northwestern Memorial Hospital (123); Somerville Hospital (140); St. Joseph’s Hospital, St. Paul, MN (143); St. Joseph’s Hospital, Orange,

CA (144); and University of Wisconsin Hospital (155).)

DNR orders provide an exception to a unique standing order to provide cardiopulmonary resuscitation

(CPR). The order is directed to on-call staff who, because of the urgency of cardiac arrest, are unable to

consult with the patient or primary physician about

the desired course of therapy (170), DNR orders are

commonly written on general medical wards and in

intensive care units (ICUs) (51, 90, 153, 166, 172). The

DNR protocol (usually called a “policy”) typically indicates the conditions under which DNR orders maybe

written; the roles of the patient, physicians, and other

parties; and how the order is to be documented and

carried out.
35

Protocols concerning CPR, more than any other lifesustaining treatment, became an urgent institutional

need. The practice of universal standing orders for

CPR could not be abandoned in favor of individual CPR

orders upon admission because the latter approach

would seriously endanger patients for whom a CPR

order might inadvertently be omitted, either because

of oversight or failure to anticipate a cardiac arrest.

Experts agree that DNR orders should apply exclusively to CPR and should not restrict other life-sustaining treatments or lessen measures to prevent cardiac

arrest (9, 48, 107, 119, 130, 134, 156, 161). Some clinical studies document this intended effect (34, 131, 172);

however, other studies show that DNR protocols can

lead to limitation of a cluster of life-sustaining treatments (22, 51, 90, 104, 138, 151). A DNR protocol invites this mistake if it fails to include clear definitions

of the specific procedures that constitute resuscitation

and the intent of the order (170).

Experience with DNR protocols has helped to focus

discussions of protocol design and to identify crucial

content areas (such as documentation and decisionmaking principles, for persons with and without decisionmaking capacity) that may be applicable to other

types of decisionmaking protocols as well. In addition,

the uniquely auditable written DNR order has permitted research about CPR decisions that maybe helpful in understanding decisionmaking about other lifesustaining treatments (21, 51, 90, 151, 153, 156, 166,

172).

DNR protocols address a decision of limited scope,

a single element in a treatment plan. As such, DNR

protocols do not fully address the needs of any of the

hypothetical patients described in chapter 1: not Robert

Swanson, whose DNR request is made in concert with

conditional decisions that address other treatments;

not Thomas Johnson, who wants CPR now but wants

it withheld if he becomes irreversibly incompetent; and

not Mary Hinkel, who wishes to reject all forms of lifesustaining treatment.

Care-Category Protocols: Treatment

Levels and Treatment Goals

The narrow scope of DNR protocols has engendered

interest in approaches that address a broader range

of treatment issues. Care-category protocols are one

result. This type of protocol is based on the assumption that patients can be classified into one of several

categories that signify a particular treatment plan. Two

major types of care-category protocols have been proposed, one based on categories of treatment levels and

the other on categories of treatment goals.

Treatment-level protocols define clusters of treatments, order them hierarchically, and assign each patient to a single category. (Examples have been published by: F.P. Arena et al. (15); F. Davilla et al. (46);

S.A. Levenson et al. (86); Massachusetts General Hospital (99); A. Meisel et al. (104); Presbyterian University Hospital (128); T.E. Quill et al. (131); L. Volicer (162);

and Yale New Haven Hospital (169).) Patients in a given

category are considered eligible for all treatments in

that category and any lower categories, but ineligible

for treatments in higher categories. The protocol of

Pittsburgh-Presbyterian Hospital (104, see app. B) sets

up the following levels of “acceptable orders” to facilitate communication when detailed orders are not

available:

1. All But Cardiac Resuscitation (i.e., vigorous treatment, including measures to prevent cardiac arrest, but no CPR except in special, defined circumstances);

2. Limited Therapy (i.e., no new therapy except for

hygiene and comfort; new drug therapy included

in special circumstances); and

3. Comfort Measures Only (i.e., discontinue all treatments not related to comfort and hygiene).

Other protocols differentiate treatment levels by the

decisions on whether to provide CPR, whether to hospitalize, or whether to admit to an intensive care unit.

Treatment-goal protocols define categories of treatment in terms of goals such as to “palliate without

prolonging life” or to “preserve comfort, hygiene and

dignity, but not to prolong life” (28, 60, 110, 149). These

care categories are typically referred to as “Supportive Care,” “Comfort Care,” or “Routine Terminal Care.”

Implementation of this type of protocol, most commonly found in nursing homes, presumes that prolongation of life is no longer a treatment goal (112).

Conceptual and operational difficulties attend both

types of care-category protocols. First, specification of

the care categories is very problematic. Although

health professionals might place all antibiotic therapy

in a single treatment level, patients might place intravenous antibiotics in one category and oral antibiotics

in another. This problem becomes acute in determining “comparable” treatments that constitute a category.

Some protocols would place Robert Swanson, based

on his refusal of CPR, in a care category that precludes

other treatments he might elect. In this way, predetermined treatment categories may abridge the patient’s

ability to autonomously define his or her overall treatment plan (95, 151).

Similar problems occur with categories of treatment

goals. Patients like Robert Swanson may reject CPR
36

in order to avoid the burden of that particular treatment, not because they reject the goal of prolonged

life (164). In contrast, Mary Hinkel has rejected all treatments that might sustain her life. These individuals

do not have the same goal; there maybe no single care

category that meets both their needs. In addition,

treatment-goal categories are too broad to address

some patient goals, such as to stay at home as long

as possible, to see a sister one last time, or to protect

life savings,

Conceptual difficulties with care categories become

practical concerns when they must be interpreted by

staff who are unfamiliar with particular patients and

must make momentous decisions about their care. Care

categories aggregate urgent, discrete interventions

like CPR with less urgent or more complex interventions like the use of antibiotics or transfer from a nursing home to a hospital.

Care categories that limit transfers from chronic to

acute care settings or from a general hospital unit to

an ICU seem especially arbitrary. Patients maybe more

closely monitored in an ICU, and treatment more

closely supervised. Intensity of care is not a clear principle by which to distinguish acceptable from unacceptable therapies. Even patients who have rejected

all life-sustaining treatments, Mary Hinkel for example, might opt for transfer to an ICU if severe pain

could not be controlled elsewhere (95).

Likewise, a “supportive care plan” would be a dangerous way for Robert Swanson to avoid CPR and mechanical ventilation. If he were to develop dysuria and

fever during the night, on-call staff implementing this

plan could legitimately withhold antibiotics, a step that

could lead to Mr. Swanson’s premature death.

Care-category protocols may help patients, families,

nurses, and physicians who are grappling with complex

questions about the nature and purpose of medical

care, by clarifying their thinking or communication

about medical treatment. They may have a continuing role in patient education and counseling. For instance, the concept of treatment-goal categories may

help Robert Swanson understand whether he means

to reject medical care altogether, or only to avoid the

burdens associated with particular treatments. As the

patient comes to understand the options implicit in

choosing among categories, he or she can be offered

the opportunity to individualize the treatment plan,

and the individualized plan can be entered in the medical record.

Still, use of care categories for counseling is not a

substitute for individualized treatment planning. The

use of such categories as orders or as designations in

the medical record or nursing plans could foster

stereotyping and undermine the nuances of autonomous decisionmaking. This, in turn, could endanger

patients by inviting on-call personnel to implement

sweeping life-or-death decisions without consulting the

primary physician,

Treatment-Plan Protocols

Treatment-plan protocols allow for fully individualized treatment plans in a manner analogous to traditional medical orders. They attempt to be more comprehensive than DNR protocols and to avoid the problems

of care categories. Some, like the new policy called

“Limiting Life-Sustaining Treatment” from University

Hospitals of Cleveland (154) (see app. B), offer specific

nontreatment choices. The first consideration is DNR,

which is specifically defined as a decision to withhold

resuscitation (defined to include mechanical ventilation, endotracheal incubation, chest compression, and

the administration of emergency medication or fluids)

in the event of an arrest.

Once the DNR order is written, nontreatment of lifethreatening conditions short of an arrest (but likely

to lead to one) maybe considered. The potential treatment limitation and the clinical situation in which it

applies, e.g., “no incubation” in the event of dyspnea

or “no defibrillation” for ventricular fibrillation, are

clearly spelled out, to avoid the possibility of misinterpretation. A patient designated DNR but not designated “no defibrillation” would thus be defibrillate

in the event of a severe arrhythmia, but would not

be resuscitated in the event of an arrest (171).

Another example of a treatment-plan protocol is the

model developed by the Minnesota Hospital Association (114). In this, the available treatments are not

listed, but critical terms that must be understood, including “life-sustaining treatment, ” “DNR,” and “DNI”

(do-not-intubate), are clearly defined (see app. B).

Treatment-plan protocols are a quite recent development; longer experience with them is required before they can be evaluated. These protocols probably

point to the eventual development of a new section

in the medical chart, for recording treatment objectives, treatment decisions, conditions in which the patient’s wishes change, and designated proxies. Forerunners of this type of chart section are seen in some

unpublished nursing home protocols (although many

of these bear the name of a care-category protocol,

i.e., “Supportive Care Plan”),

Treatment plans address the individuality of Mary

Hinkel’s, Robert Swanson’s, or Thomas Johnson’s

wishes, but sacrifice the simplicity of DNR or care-
37

category protocols. Critics of treatment-plan protocols

suggest that it is impractical to prospectively consider

every potential life-sustaining treatment. Supporters

of these protocols argue that the relative complexity

of treatment-plan protocols could be managed with

more intensive staff education—which is required in

any event to prevent misinterpretation of DNR or carecategory protocols, as has been discussed.

Specific Provisions

A protocol for decisionmaking about life-sustaining

treatments must be designed with full understanding

of what the instrument is to accomplish, with respect

to both clinical care and other institutional responsibilities, and with a realization of the various constraints

that need to be overcome in order for it to be effective.

Provisions for Meeting Institutional

Responsibilities

Health care institutions are responsible to a diverse

set of public interests that pertain to decisions about

life-sustaining treatment (see ch. 1). This section examines ways that decisionmaking protocols may articulate and help in fulfilling these responsibilities.

Assurance of Patient Autonomy.—Protocols often

explicitly state the institution’s commitment to the principle of patient autonomy (60, 68, 104, 114, 132, 152).

This commitment requires that protocols provide a

decisionmaking process that identifies and honors the

current or previously expressed wishes of patients.

An explicit affirmation of the principle of patient autonomy can serve several useful purposes. It helps focus the development of the rest of the protocol’s procedures. It may be appealed to as a way to resolve

dilemmas not anticipated by other provisions of the

protocol. For example, though a hospital or nursing

home may not have anticipated a request like Thomas

Johnson’s for a nonfamily proxy, a formal expression

of commitment to patient autonomy would go a long

way toward clarifying duties in this specific case. An

explicit affirmation of autonomy can also help educate

staff to view treatment decisions as involving more

than clinical indications and professional judgment. Finally, patients, when informed of the institution’s commitment to patient autonomy, may feel reassured about

their future and may be empowered to speak to staff

forthrightly about their treatment preferences.

Surgery raises special considerations that can be addressed in decisionmaking protocols. Typically, surgery is performed by someone other than the patient’s

primary physician; it sometimes entails use of invasive life-sustaining technologies, either during or immediately after the operation. Some protocols suspend

all orders to withhold life-sustaining treatment during and immediately following surgery. Honoring patient autonomy requires that patients are informed of

this practice prior to consenting to elective surgery,

for example, for a hernia repair (114).

Protection of vulnerable Patients.—Decisionmak -

ing protocols can promote this interest with language

affirming the equal value of the lives of elderly, disabled, or indigent persons, and a commitment to nondiscrimination against them in the provision of treatment (68, 114). An institutional commitment to protect

patients who are vulnerable due to decisional incapacity or other causes can also be advanced by procedural

provisions (5, 43, 46, 87, 124) that include:

1.

2.

3.

4.

5.

6.

7.

requiring or encouraging the use of an ethics committee or prognosis committee, particularly for patients who are decisionally impaired or when the

institution has a financial or other interest in the

outcome of a treatment decision (44);

having surrogates to advocate on behalf of all patients who lack decisionmaking capacity (43, 152);

ensuring that staff are aware of State or local laws

regarding decisions for vulnerable persons who

have neither a surrogate nor an advance directive (73);

ensuring that staff, families, and patients are

aware of decisionmaking principles, procedures,

and advocacy resources (68, 146);

ensuring that staff and other caregivers are aware

of procedures and duties to report any abuse of

vulnerable patients (68);

facilitating formation of independent patients’

rights committees and/or quality assurance mechanisms to audit protocols and individual decisions

to limit treatment (68); and

providing for accountability of health care professionals in all aspects of treatment planning and

implementation (discussed later in this app.).

Some commentators have suggested that protocols

that facilitate the patient’s choice to refuse life-sustaining treatment by privatizing decisionmaking within

the health care staff, patient, and family encounter may

endanger vulnerable patients (13, 49, 68, 87). A private decision based on “substituted judgment” or “best

interests” by even well intentioned professional caregivers regarding life-sustaining treatment for an incontinent, aphasic, isolated, financially dependent patient like Mae Carver raises troubling issues about

social prejudices, caregiver fatigue or frustration, and

public resources. (If Mae Carver is under public guardianship, the facility may be obliged to follow very spe -
38

cific procedures; if there is no guardian, she may still

be protected by regulatory or professional standards,

such as vulnerable adult protection acts. )

The duty to ensure that vulnerable persons are

respectfully and equitably treated is a serious and difficult challenge. Fundamentally, this responsibility rests

with individual staff who are sensitive to the needs,

values, and perspectives of vulnerable patients, and

who are aware of the special dangers that arise from

social stigmatization and patients’ inability to protect

their own interests. Such sensitivity will need to be

inculcated and cannot be fully protected by procedural

mechanisms.

Promotion of Institutional Mission.–All health

care institutions are members of a professional tradition that strives to promote beneficence, especially

health, life, restoration of function, and alleviation of

suffering. Many protocols explicitly state their commitment to this moral mission (68, 104, 114). A commitment to beneficence underlies the “fail-safe” provisions of decisionmaking protocols, like the universal

standing order for CPR. It also guides treatment decisions in cases of attempted suicide and in emergencies when a patient’s prognosis and preferences are

unknown.

Some authorities have proposed that the principle

of beneficence be formulated in standards for minimal care, consisting of specific treatments (usually

nourishment) that may never be withheld (87, 112).

A few nursing home protocols have done so.

Some health care institutions have specific medical

missions that determine the treatment options that will

be available to patients and that staff will be expected

to carry out. Hospices are one example. In addition,

some institutions are associated with sectarian communities or organizations that have religiously based

positions regarding the provision or discontinuation

of life-sustaining treatments. A decisionmaking protocol is one mechanism by which to state this mission,

for the benefit of both patients and staff.

Accommodation of Staff Objections.—Some protocols affirm respect for the personal moral sentiments

of staff and exempt designated staff from participating in treatment plans to which they object (60, 62,

104, 152). For example, the guidelines of Pittsburghpresbyterian Hospital permit physicians, but not nurses,

to excuse themselves from participation in treatments

to which they have a moral objection (104). This type

of provision goes beyond the section of the Health Programs Extension Act of 1973 (Public Law 93-45) that

prohibits hospitals receiving certain Federal funds

from requiring staff with moral objections to participate in abortions and sterilizations (42 U.S.C.

300a- 7(b,d)).

Such provisions can foster moral deliberation by staff

and help maintain staff morale. These provisions need

not be based on an interest in the general “moral integrity of the medical profession, ” an interest that has

not been found to outweigh a particular patient’s

preferences. They might, however, be supported by

an affirmation of a mutually voluntary treatment relationship between patients and health care staff (129).

Thus, Torah Home may choose to inform residents that

it supports Dr. Levin’s personal right to refuse, on

moral grounds, to participate in certain treatment

plans, even if those plans are not inconsistent with

standards of the institution. Torah Home might promise, in such cases, to try to find another physician who

is willing to provide the full range of treatment options implicitly or explicitly promised.

Reconciliation of Conflicting Responsibilities.—

The diversity of institutional responsibilities brings the

potential for tension or conflict. This is manifested in

two particularly troublesome ways, both of which bear

on protocol design. First, a tension exists between the

unencumbered exercise of patient autonomy and the

procedural oversight needed to protect the interests

of vulnerable persons. Procedures to advance the public interest in the protection of vulnerable persons such

as Mae Carver should not be so complex or costly as

to effectively destroy Robert Swanson’s ability to direct his care. Thus, it is unreasonable to propose a legal requirement that all life-sustaining treatments be

given unless prior court approval to do otherwise has

been obtained. However, procedures to permit patients

to decline life-sustaining treatments cannot be so perfunctory as to compromise protection for patients who

might be improperly induced to refuse treatment or

misconstrued as having refused life-sustaining treatment (87, 95). For example, a nursing home policy that

leaves all orders regarding life-sustaining treatments

in the hands of the physician would make it easier to

act in accordance with Robert Swanson’s clearly stated

treatment preferences. But the same policy may not

provide adequate oversight to protect Mae Carver, who

cannot express her treatment preferences.

Second, there is sometimes tension between patient

autonomy and institutional mission. A patient beliefs

can and often do diverge from customary sectarian

positions or from an institution’s expressed view of

its mission. It is important to note that the diversity

of missions reflects the diversity of moral communities in this society. Thus, differences between a patient

preference and Torah Home’s mission do not constitute a gratuitous threat to patient autonomy, but rather
39

the meeting of moral differences between a patient

and persons who have joined together to provide

health care in a manner consonant with their moral

views. If moral communities are to be able to operate

institutions that reflect their values, an accommodation on this issue is needed.

Public policy could preemptively solve the difficulties raised by contending public and patient interests

either by dispensing with some of them or by arranging them in a rigid hierarchy. One way would be to

compel health care institutions to obey any patient or

proxy wish. However, this would undermine the institution’s accountability to other public interests. The

complexities and tensions that emerge from institutions’ diverse responsibilities indicate the importance

of the competing claims and values to which institutions are accountable. In the last analysis, this debate

cannot be preempted.

Provisions for Good Decisionmaking

Protocols can include provisions to facilitate a good

decisionmaking process without proposing rigid algorithms that would dictate a particular treatment plan

(156). This prudent approach reflects the complexity

of decisions about life-sustaining treatments and respect for moral pluralism and patient autonomy.

Some protocols contain principles for making decisions about life-sustaining treatments but do not suggest any procedures for implementation (28, 60, 159,

165). Others mandate detailed procedures for implementing decisions. While some discussions of good

decisionmaking allude to professional virtues, such as

compassion, respect for life, and beneficence (159),

others emphasize patients’ rights (7, 68, 146).

Assessment of Decisional Capacity. -Decisional capacity is a watershed assessment: Adult patients who

are decisionally capable have the legally protected right

to accept or refuse any medical treatment, whereas

patients who are deemed decisionally incapable or adjudicated incompetent can participate in treatment decisions only through a proxy or an advance directive.

A large proportion of patients for whom life-sustaining

treatment is considered are in the latter categories due

to permanent or temporary loss of consciousness, profound confusion, or depression (156). Victims of cardiac

or respiratory arrest, for example, are typically unconsciousness or in a severely compromised mental

state. A survey in New York nursing homes found that

almost half of all elderly residents are disoriented or

have impaired memory (157). (Disorientation or memory impairment was defined in this survey as inability

to remember dates or time, to identify familiar locations or people, to recall important aspects of recent

events, or to make straightforward judgments.)

Decisionmaking protocols area vehicle for addressing the essential concept of decisional capacity, to help

ensure that it is clearly understood and accurately

assessed. The two major definitions are: “competence, ”

a global assessment that can be determined only in

a legal proceeding, and “decisionmaking capacity, ” a

task-specific assessment that is determined without legal involvement (13, 130, 156).

Protocols handle this topic in a variety of ways. Some

discuss definitions of decisional capacity (62, 114, 169).

Others note the procedural significance of this assessment without proposing definitions (100, 115).

Some protocols include precautionary provisions for

assessment of decisional capacity. One such safeguard

is to state a presumption in favor of the direct participation of all patients in treatment decisions unless a

basis for the conclusion of decisional incapacity has

been recorded in the medical record. For example, the

protocol of University Hospitals of Cleveland states,

“competent patients must be consulted and have a right

to refuse treatment” (154). Some protocols point out

that a patient preference that contradicts medical advice (e.g., Thomas Johnson’s request for CPR should

it be needed, despite his physician’s contrary view)

should never, by itself, be taken as proof of decisional

incapacity.

Few protocols address the issue of who should assess decisional capacity; most that do so leave it to the

attending physician (60, 104, 130) or a consulting psychiatrist.

Patients Who Are Decisionally Capable.—In support of patient autonomy, institutional protocols often

state that decisionally capable patients, like Robert

Swanson or Thomas Johnson, should be fully informed

of treatment options and given an opportunity to express their treatment preferences. Many protocols also

state that the institution will honor an advance directive of a patient who later loses decisionmaking capacity.

To further patient participation, institutions often

try to foster communication between their staff and

patients. protocols may advise patient counseling, stating that health care staff are responsible for initiating

dialog about life-sustaining treatments or for creating

a climate in which Robert Swanson or Thomas Johnson’s friend would feel comfortable raising treatment

issues (62, 137). Hospital protocols often assign to the

physician the responsibility for initiating this conversation (60, 104, 107). Nursing homes are more likely
40

to give more responsibility to nurses or social workers in initiating these discussions (112), reflecting their

role in creating treatment plans for nursing home residents and the more limited presence of physicians (25,

130). Some protocols, while presuming that physicians

play a central role in the treatment decision, encourage

nurses to record patients’ preferences in the chart,

to inform physicians of these preferences, and then

to record that the physician has been so informed (110,

134).

Recognizing that many acute life-threatening events

can be expected to leave their victims, at least temporarily, incapable of expressing treatment preferences, newer protocols commonly encourage prospective decisionmaking through advance directives like

living wills or proxy designations (62, 94, 100, 107, 130,

152). Some facilities distribute forms for advance directives upon admission. In some nursing homes and hospitals, admitting social workers or nurses are responsible for informing persons like Robert Swanson or

the families of patients like Mary Hinkel of the possibility of writing an advance directive. This practice

has been criticized by people who believe that initiating discussion of life-sustaining treatments before staffpatient relationships are established may increase patient or family fear and distrust. Fears that the hospital or nursing home is a place to die, that the facility

would try to save money by limiting treatment, or that

the patient will be abandoned might lead some patients

or families to initially express treatment preferences

they later disavow. Advocates of advance directives

view these forms as a way to prevent the unnecessary

circumvention of patient preferences in medical emergencies.

Patients Who Are Not Decisionally Capable.–Published reviews emphasize that medical decisionmaking for patients who are not decisionally capable should

still respect their autonomy and should honor their

previously expressed treatment preferences and values,

by seeking a surrogate who has intimate, loving knowledge of the patient, and by being mindful of social

prejudices (14, 62, 129, 130, 156). In addition, because

many patients have medical histories that portend loss

of decisional capacity, health professionals and institutions share responsibility for ascertaining treatment

preferences while this is still possible.

Institutional protocols have addressed the special features of decisionmaking for decisionally incapable patients in several ways. As with decisions for capable

patients, the decisionmaking process can begin in advance of medical crises, sometimes in advance of institutionalization, so that appropriate parties and proxies can be fully empowered and so that important

clinical decisions can be fully considered. To this end,

some protocols, especially in nursing homes or in hospital units working with persons with dementia, require prospective family conferences with physicians,

nurses, and social workers (100, 162). Such conferences

can help ensure that interdisciplinary communication

occurs. In such meetings, for example, Mary Hinkel’s

nurses would be able to communicate to her new physician her wish to have only palliative care.

Increasingly, protocols recognize that decisionally impaired patients may need a proxy decisionmaker (5,

62). For patients with caring and involved family members, many protocols simply accept family members

into treatment planning. Family members can be invaluable sources of information about a patient’s

preferences, and family acceptance of a treatment plan

as being in the patient’s best interest or consonant with

the patient wishes is an important safeguard for vulnerable persons. Family involvement is also evidence

of a prudential approach to decisionmaking. Despite

the value of family in these roles, health care facilities

should be mindful of State laws that pertain to family

proxies; family members are not legally empowered

to act as surrogate decisionmakers in all States (14, 136).

In several situations, selection of proxies is of special concern. Some protocols propose or require legally appointed proxies for decisions to forgo certain

life-sustaining treatments, especially when family members are not available or are in disagreement, or when

a treatment decision is not adequately supported by

substituted judgment (5, 104). Thus, even though it

seems clear that Robert Swanson desires to have no

life-sustaining treatments when he loses his ability to

interact, to ensure his preference is interpreted as he

would wish, he should be encouraged to appoint a

proxy as a part of creating his treatment plan. Thomas

Johnson, like many patients with acquired immunodeficiency syndrome (147), wishes to designate a nonfamily proxy even though family members are available. When prospective planning is possible, such

patients might use a durable power of attorney to appoint a proxy of their choice and to avoid any deference to family. Even without formal assignment, however, nonfamily proxies may be given great weight if

they have demonstrated significant, caring knowledge

and regard for the patient’s preferences and interests.

For patients like Mae Carver who are without family

or proxies to represent their interests, protocols might

provide for referral to appropriate Government offices

when reporting is legally mandated or when the treatment decisions are of great consequence (5).

Medical Criteria for Limiting Treatment.—Some

protocols establish medical criteria that must be met
41

before certain treatment decisions are allowed. For

example, some require that patients be diagnosed as

“terminally ill” before withholding of life-sustaining

treatment will be permitted (100, 110, 112, 126, 161).

Some suggest conditions, like “serious disability, ” where

treatment might be limited (112, 149).

The use of medical criteria in protocols for decisions

about life-sustaining treatments is controversial, in part

because of conceptual difficulties. ‘(

Terminal illness”

is not clearly distinguished from chronic, progressive

disease. Treatment “futility” can be defined as either

the inability to prolong life or the inability to reverse

disability. Moreover, reliable clinical measures of these

concepts are not available (156).

There are also fears that negative and sometimes

subjective assessments like ‘(terminally ill, ” “brain

damaged, ” or ‘(severely disabled” may lead health care

staff to withhold life-sustaining treatment unjustly

from people described by these terms (67, 68). Furthermore, some people believe that using criteria like

terminal illness as a prerequisite for decisions to forgo

life-sustaining treatments wrongly restrains patient autonomy (126) by discouraging or preventing a person

who is not terminally ill from articulating or effectively

communicating treatment preferences.

Despite objections to including medical criteria in

decisionmaking protocols, many people argue that decisions about life-sustaining treatments are not an issue when the treatment in question cannot prevent

an imminent death (27). Thus, even some protocols that

strenuously protect the rights of vulnerable patients

have attempted to differentiate patients who are “imminently dying” from those who are not (68). For a

patient like Mary Hinkel, this type of provision may

permit health care staff to suspend customary aggressive care in the event of cardiac arrest.

The Role of Ethics Committees.--Ethics committees

have a role in the creation of protocols, in their implementation through staff education, and in prospective

treatment conferences. Ethics committees can also assist health staff by providing information pertinent to

controversial procedural questions (such as Thomas

Johnson’s nonfamily proxy) or by advising on difficult

clinical decisions. Ethics committees provide a forum

for collection and communication of information among

multiple caregivers and perspectives.

Few institutional protocols require that ethics committees be routinely involved in treatment decisions

(11 O). Some protocols propose or require use of such

groups to address controversial or disputed decisions

or as a safeguard for vulnerable patients (44, 62, 100,

104, 121, 132, 169). Some require ethics committees

to review decisions to limit life-sustaining treatment

for decisionally incapable patients (5, 29).

It is not clear whether health care institutions can

lessen their risk of adverse legal action by imposing

procedural consultation requirements, and such requirements sometimes create obstacles to decisionally

capable patients who would decline life-sustaining

treatment. Courts have been variously disposed toward

the necessity or authority of ethics committees in decisions about life-sustaining treatments (167).

The Role of the Courts.—There is wide agreement,

especially among health care providers and lawyers,

that the courts should be drawn into decisions about

life-sustaining treatments only in exceptional cases (62,

121, 156). Court hearings are used routinely to name

legal guardians or surrogate decisionmakers for persons who lack decisional capacity, Courts may also be

called upon when there is an irreconcilable controversy about proxy selection, about a decision made

by a proxy, or when no proxy is available and life-ordeath decisions are being made (5). Some protocols

state that, as a general principle, judicial intervention

or guidance is unnecessary except where all other

means of dispute resolution have failed (104). Others

specify the situations in which resort to the courts is

appropriate.

Provisions for Implementing Decisions

A major purpose of institutional decisionmaking protocols is to provide for proper implementation of treatment decisions once they have been made (62, 81, 130,

156). Health care facilities are complex institutions;

many persons are involved in creating and carrying

out treatment plans. There are many opportunities for

miscommunication, disagreement, and errors. often,

the staff who carry out a treatment plan are unfamiliar

with the patient or have not been involved in treatment decisions. In this environment, the role of protocols in trying to facilitate the proper implementation of treatment decisions is as important as their

facilitation of good decisionmaking itself.

Protocols can address treatment plan implementation through provisions for:

●

●

●

●

accurate communication of treatment intentions;

treatment plans that are “fail-safe)” to prevent

unintended withholding of life-sustaining

treatment;

accountability of individual staff for the implementation of decisions to limit treatment;

assistance to health care staff, families, and patients in complex, controversial decisions;
42

● ensuring compliance with the requirements of

agencies external to the health care institution; and

. implementation of the protocol itself.

Accurate Communication.—To facilitate accurate

implementation of decisions about life-sustaining treatments, protocols need to provide for unambiguous

communication of the treatment plan from decisionmakers to on-call staff. It maybe inadequate to simply

assert that the physician should convey information

about the treatment plan to health care staff involved

in the patient’s care (26, 115, 132, 169), especially in

long-term care settings, where physicians frequently

are not available.

Protocols usually state that treatment intentions,

such as Robert Swanson’s DNR request, are to be implemented by explicit, permanently recorded medical

orders signed by the physician (62, 78, 130). In addition to orders, many protocols say that the medical

record should contain a note by the physician discussing the genesis and intent of the treatment plan (19,

26, 104, 114, 132). This note should record the diagnosis, prognosis, patient or proxy wishes, recommendations of the treatment team, treatment objectives, and

a discussion of key treatment decisions. In the case

of decisionally incapable patients, the note should document the finding of incapacity, record the basis of

that assessment, the identity of the proxy decisionmakers, the rationale for selecting them as proxies,

and the proxy’s directive. This more complete

documentation can convey the complexity of Robert

Swanson’s or Thomas Johnson’s treatment plan and

also Johnson’s wish to have a nonfamily proxy,

Protocols that apply to patients who are terminally

ill, imminently dying, or permanently unconscious require definitions of these terms and documentation

that the criteria are fulfilled (67, 100). Some nursing

home protocols establish separate areas of the medical record for documentation of the assumptions that

are to govern decisions about life-sustaining treatments, For outpatients, like Thomas Johnson, the treatment plan will be maintained in the physician’s office

record. Patients and their proxies should be aware of

the location of this material, to help bring it to the attention of hospital staff in a medical emergency. Some

hospitals give patients DNR wristbands so that off-ward

staff can be instantly aware of each person’s treatment

intentions (114).

To promote accurate communication, protocols often

define important and commonly used terms, like DNR,

do-not-intubate, or care categories (19, 108, 115, 130,

154). Misinterpretation of terms, as has been discussed,

may also be anticipated and addressed.

Accurate and reliable communication of treatment

plans for patients transferred between health care facilities poses especially difficult problems. So that interfacility transfers can proceed smoothly, protocols

should conform to the procedural format used by ambulance services (108). Most importantly, the possibility of an interfacility transfer should be anticipated

so that patient preferences with regard to such transfers or to the treatment provided at the receiving facility can be elicited and incorporated into treatment

planning (62).

Interfacility protocols need to provide for common

usage of terms, to ensure accurate communication of

treatment intentions (62, 108). This type of protocol

also helps to assure the receiving institution that treatment directives have been properly made, since patients often will be unable and proxies unavailable to

reconstruct the decisionmaking process. For Mae

Carver and Robert Swanson, interfacility communication can occur in the context of an agreement between the emergency medical service and community

nursing homes and hospitals, For outpatients like

Thomas Johnson, good communication is needed between individual physicians and community hospitals.

The latter is much more difficult and, to date, depends

on the initiative of individual physicians, institutions,

and patients or their proxies,

Fail-Safe Provisions. -Many decisionmaking protocols contain provisions that intend to ensure that,

in the absence of unambiguous and properly formulated directives, treatment assumptions will “fail safe”

in favor of sustaining life. Standing orders for emergency life-sustaining treatment, especially CPR, are a

common fail-safe provision (19, 46, 114). In nursing

homes, another normal provision is a standing order

to call an ambulance service in every medical emergency. The rationale for such provisions is that some

individuals who desire a potentially beneficial treatment (especially CPR) would otherwise not get it.

Some emergency medical systems that accept DNR

orders do not accept vague directives to limit life-sustaining treatments, e.g., orders for “supportive care.”

For patients like Robert Swanson, whose wishes are

tied to his ability to interact with others, an order for

“no heroic measures” is confusing. If an unclear order

is presented, customary standing orders for CPR are

to be followed (108, 140),

Some health care institutions provide for the revocation of an order to limit treatment when there is

reason to believe it no longer reflects the patient’s

wishes or interests. This type of provision recognizes
43

the possibility that a patient’s condition or his or her

acceptance of it may change.

Many protocols state that a decision about life-sustaining treatment may be changed at any time. One

unpublished nursing home protocol allows patients to

revoke a DNR order by notifying a nurse, who is empowered to revoke the DNR order in the name of the

medical director. The patient’s attending physician is

notified of this revocation so that further discussions

between the patient and physician can occur. Comparable provisions in some hospital protocols authorize

family members to revoke a DNR order with the same

ease (100). A Minneapolis area emergency medical

service policy covering CPR specifies that for home

care patients, like Thomas Johnson, a patient’s destruction of the home care form restores the standing order for aggressive treatment.

As a further fail-safe measure, some protocols revert to a presumption in favor of treatment unless the

treatment decision is reaffirmed. Thus, some protocols

provide for automatic expiration of orders to limit

treatment after a certain time in order to ensure that

orders undergo continual review by the patient and

his or her physician (26, 46, 114, 140). In nursing

homes, the period of time is usually from 1 to 3 months;

in hospitals, it is typically from 1 to 7 days (110, 112).

Some facilities prohibit discharge documents from

carrying orders to limit medical treatment beyond the

time required to transfer the patient to another health

care facility (114). The intent is to ensure that a physician is continually responsible for treatment orders.

Other protocols provide for continuity by recommending that transferring physicians inform receiving physicians of any decisions about life-sustaining treatments

(62). Information about the patient’s history is especially important when the patient has become decisionally incapable. New York State’s 1987 legislation

allows the receiving physician to accept a DNR designation from a transferring facility, to enter it in the

patient’s record, and to accept responsibility for it (121).

Provisions for Accountability

Accountability to Coworkers.—Professional accountability for decisions about life-sustaining treatments is addressed by two principal provisions: assignment of staff responsibilities for the formulation and

implementation of decisions about life-sustaining treatments, and requirements for signed staff documentation during this process.

Protocols define a variety of physician responsibilities. The consensus is that physicians should sign all

treatment orders in the medical record (78, 130). In

addition, many protocols require a signed description

of the intent of limited treatment plans. Most teaching

hospitals require attending staff physicians to countersign any orders to limit treatment that are written

by interns or residents. This ensures that senior physicians are aware of and accountable for all such decisions.

Some protocols require nurses to record critical procedures for implementing decisions about life-sustaining treatments (110, 112). These include any discussions between nurses and patients about treatment

decisions, notification of physicians about such discussions, the implications of treatment decisions for nursing care, and the communication to emergency medical

service personnel of directives to withhold life-sustaining treatment. Specification of these duties can be an

effective way to ensure that critical information, like

the conversations between Mary Hinkel and her nurses,

are entered into the medical record. Some policies direct nurses to challenge resuscitation orders if the patient has not been involved in decisionmaking (110,

134).

Some protocols address orders that physicians occasionally give to nurses by telephone to withhold lifesustaining treatment. A telephone order may represent an ad hoc decision, rather than a carefully thought

out plan based on discussion with the patient. Other

protocols prohibit telephone directives (104). Those

that do permit telephone orders might require that

nurses record all such telephone conversations, or they

might provide for the automatic expiration of any telephone order that the physician does not countersign

within 24 to 72 hours (111, 112, 123).

Accountability to Patients—The effect of protocols

in promoting optimal communication and understanding between health care staff and patients or their

proxies is a matter of considerable dispute. Certainly,

the protocol framework emphasizing good decisionmaking principles, articulating institutional mission,

detailing staff responsibilities, establishing reliable

interstaff communication, and providing ongoing staff

education contributes to a good decisionmaking environment. Some protocols go farther and promote specific decisionmaking encounters (62).

Some institutions, mainly nursing homes, give all

newly admitted residents or their family members an

opportunity for initial discussion of the purposes of

life-sustaining treatments and the possibility of requesting that their use be limited. New York State’s law regarding resuscitation requires that physicians discuss

resuscitation with all decisionally capable patients and
44

enter a DNR order only with the patient’s prior consent, unless such discussion would cause “severe and

immediate harm to the patient” (121). Similarly, some

hospitals require that, for all patients admitted to an

ICU, physicians note the objectives of and possible

limits on the use of life-sustaining treatments.

The use of admission conferences to determine the

patient’s wishes regarding life-sustaining treatments

has some limitations. First, this could be the first meeting of patient and health care staff, and trust may be

lacking. Second, crucial prognostic information may

not yet be available. Third, it is difficult within the compressed time of an admission to inform patients and

their families fully about the range of choices available. Fourth, patients newly admitted to a health care

facility are usually ill and under considerable stress;

their ability to participate in treatment decisions may

be severely compromised.

Despite these reservations, admission or soon thereafter can be a good time to raise questions about lifesustaining treatments and to make patients aware

there will be future opportunities to discuss any concerns and preferences. Some institutions distribute information packets that include forms for designating

treatment preferences or surrogate decisionmakers

(148), or that introduce care categories as a way to

inform patients of the range of treatment options. Some

admission procedures include asking patients to designate a surrogate decisionmaker in the event one will

be needed. The opportunity for knowledgeable counseling should be offered whenever such information

is distributed and when such questions are asked. In

some institutions, nurses or social workers coordinate

initial discussions with patients, to prepare them for

more detailed discussions with their physicians (112).

Some institutions require all patients for whom lifesustaining treatments are to be limited to sign a living

will. This provision may be difficult to implement in

that many people are not psychologically able to commit themselves in writing to a course of action they

otherwise might affirm. A less rigid variation on this

type of provision is Pittsburgh-Presbyterian Hospital’s

requirement that when a signed advance directive is

available, it must be included in the patient’s chart

(104). Another is Yale New Haven Hospital’s policy asking the patient (or surrogate) to sign an authorization

for a DNR order if there is reason to believe that the

order will be disputed (169).

Compliance With External Agencies—Protocols

must be consistent with legal requirements regarding

living wills, durable powers of attorney, and other relevant matters (e.g., organ donation, brain death) (152).

Many local or State governments have requirements

as to the handling of DNR orders for incompetent patients who are under State guardianship or without

close family. Some protocols identify the classes of persons to whom such laws apply and refer decisions to

the institution’s lawyer or to the identified government

body. Generally, protocols do not list the special requirements or restrictions that pertain to orders to

limit treatment for such persons, in order to avoid giving the impression that such restrictions apply to all

persons.

Provisions for Implementing

the Protocol

Implementation of protocols occurs within the much

broader context of administrative responsibilities for

monitoring health care practice and assuring quality

care. Some protocols include a provision identifying

the individual office or official with specific responsibility for ensuring that the protocol is used routinely

and as intended. For example, the Joint Commission

on the Accreditation of Healthcare Organizations assigns responsibility for implementation (as well as development) of DNR policies to the hospital’s chief executive officer. The model protocol by the Minnesota

Hospital Association provides for similar specification

in stating “Implementation of this policy is the responsibility of [officer]” (114).

Beyond this, the protocol may indicate what means

will be used to ensure implementation by staff. The

Minnesota Hospital Association model indicates that

the “[named officer] shall establish procedures to familiarize medical staff in its provision and provide for

its implementation,” It further specifies that this officer is responsible for “regular review and updating

of the policy,” to ensure it meets current legal, clinical, ethical, and procedural needs.

Staff involvement in the process of developing the

protocol helps establish initial familiarity with the protocol as well as commitment to it, but this is not enough.

Changes in staff as well as revisions in the protocol

necessitate ongoing efforts to educate staff regarding

the rationale for and specific provisions of the protocol. Without continuing staff education, breakdowns

in the implementation of protocols are likely to occur.

In addition, implementation of a decisionmaking protocol assumes that administrators will supply any documents or agents referred to in the protocol. This includes, for example, establishing and supporting ethics

committees, retaining legal counsel, and making living will documents available.
Appendix B

Sample Decisionmaking Protocols

Do-Not-Resuscitate Protocol (see pp. 46-50)

‘

(Guidelines for Orders Not to Resuscitate, ”

Beth Israel Hospital, Boston, MA

Care-Category Protocols:

Treatment Levels (see pp. 51-62)

‘(Guidelines on Foregoing Life-Sustaining Treatment, ”

Presbyterian-University Hospital, Pittsburgh, PA

Treatment Goals (see pp. 63-67)

“The Supportive Care Plan—Its Meaning and Application:

Recommendations and Guidelines, ” Task Force on Supportive Care, St. Paul, MN

Treatment-Plan Protocol (see pp. 68-72)

“Limiting Life-Sustaining Treatment, ”

University Hospitals of Cleveland, Cleveland, OH

Model Guidelines (see pp. 73-74)

“Medical Management Decisions in Nursing Home Patients,

Principles and Policy Recommendations, ”

King County Medical Society, WA

45
46
47
48
49
50
51

PRESBYTERIAN-UNIVERSITY HOSPITAL

GUIDELINES ON FOREGOING LIFE-SUSTAINING TREATMENT

Prepared by: Ethics and Human Rights Committee

Approved: Executive Committee, May 30, 1985

I . INTRODUCTION
52

life-sustaining treatment . Thus, the Guidelines ar e

adopted and promulgated to deal specifically wit h

decisions to forego futile life-sustaining treatment .

3 .

4 .

5 .

6 .

7 .

8 .
53

(c)

(d)
54

(b)

(c)

(d)

(e)
—

—

55
58

legal status of any aspect, including a lack of clarity a s

to who should act as the patient’s surrogate . The goal of

such a consultation may include: correcting misunderstandings, helping in the acquisition of neede d

information, allowing ventilation of emotions an d

otherwise aiding in the resolution of disputes. In order

for patients and surrogates effectively to exercise this

prerogative, they must be made aware of the existence and

purpose of the Ethics and Human Rights Committee.

1.

2.

(b)

(c)

(d)

(e)

(f)
57
58

v.

1.

2,

3.
59

2.
60

3 .

a.

b.

c*

d.

e .

(a)

(b)

(c)
—

SUMMARY OF GUIDELINES ON FOREGOING LIFE-SUSTAINING TREATMENT
62
63

THE SUPPORTIVE CARE PLAN—ITS MEANING AND APPLICATION:

RECOMMENDATIONS AND GUIDELINES

I. What Is Supportive Care?

A decision to provide supportive care

to an individual means a decision to

provide care and treatment to preserve comfort, hygiene and dignity,

but not to prolong life. Supportive

care is not considered to be part of

the concept of euthanasia or causing

death, but rather should be viewed as

not extending life in hopeless situations. See Section II, For Whom Supportive Care Might Be Considered.

Once it has been determined that

supportive care is appropriate, after

utilizing the decision-making procedures outlined below, written orders

for the individual plan of care must

be established. The primary aims of a

supportive care plan should be to promote the dignity of the individual and

to minimize pain or discomfort.

There should also be active support

for the psychological, social, emotional and spiritual needs of the individual and family.

An individual supportive care plan

for a resident in a long term care facility should include consideration of

the following guidelines:

A. A specific disease or life-threatening condition which could end life

but which does not cause pain or discomfort normally would not be

treated. For example, pneumonia not

causing dyspnea or pleuritic pain

would not be treated.

B. Specific medical conditions which

compromise comfort, hygiene, and

dignity would be treated. For example, oxygen would be provided to alleviate dyspnea; pneumonia causing

pleuritic pain would be treated; a

clear airway would be maintained as

by suctioning; localized infections

and fractures would be treated,

C. Specific nursing care for comfort,

hygiene, bowel care, skin care, pasBy The Task Force on Supportive

sive range of motion (PROM) and positioning, and catheter care would be

given.

D. Hospitalization or more extensive

medical intervention would not ordinarily be indicated. There may be exceptions to this (see above).

E. In most cases, a resident with a

supportive care plan would have a do

not resuscitate (DNR) order in the

medical record. 1

F. Life sustaining nutrition and hydra-

[ion needs would ordinarily be met.

There is no consensus within the task

force on the controversial issue of

when and under what circumstances

food and fluids may be withheld. We

do agree, however, that the existence

of a supportive care plan does not in

itself predetermine whether artificial

means of providing fluids and nutrition will be continued or discontinued. Each individual case must be

given careful and sensitive consideration.

G. The resident and family shall have

as much control as possible over the

care and activity level of the resident,

II. For Whom Supportive Care

Might be Considered

Residents in long term care facilities

who fall within the following major

categories of medical conditions may

be considered potential candidates

for supportive care plans, when there

exists clear documentation of the

medical condition, and a high degree

of certainty of the diagnosis and prognosis. Our intent in setting forth these

categories is to limit rather than expand the numbers of long term care

residents who may be considered for

supportive care plans.

A. Terminally Ill and Imminently

Dying, for example, from cancer or

cardiac disease.

B. Severe and Irreversible Mental

Disability, where the resident demonstrates a significant inability to communicate, or to interact meaningfully

with the environment, and an unawareness of self and/or the environment; for example, those with pre-senile and senile dementia (Alzheimer’s disease) and cerebral vascular disease (strokes).2

C. Severe and !rreversible Physical

Disability, where there may exist normal mental functioning but, because

of pain and suffering, or severe motor

impairment, the resident demonstrates a significant inability to interact physically in a meaningful way

with the environment; for example,

spinal cord injury, head trauma, emphysema, and amyotrophic lateral

sclerosis. 3

111. Procedures for Initiation of a

Supportive Care Plan

A. When a Supportive Care Plan

Should Be Considered. There is no

need for any haste in evaluating a resident for initiation of a supportive

care plan. Time should be allowed to

carefully and thoroughly consider all

aspects of the resident’s condition.

1) A supportive care plan is generally inadvisable as part of the initial

admission care plan. Before the appropriateness of supportive care can

be fully determined, a complete medical record, including a full analysis of

rehabilitative potential, should be created within the long term care setting

itself. However, in some cases a supportive care plan on admission may

be appropriate depending on the resident’s condition, previous course of

care, completeness of previous record, and so forth. The physician and

the facility should be open to full discussion of the issue if it is raised at

admission.

Care, Law, Medicine and Health Care, 97-102, June 1984. Reprinted with permission.
64

2) We recommend that the facility

not affirmatively suggest the initiation

of a supportive care plan. Such a plan

is a very personal medical, religious

and ethical matter for the resident,

family and attending physician. However, we do recommend that the facility staff be open and receptive to discussions of death and the dying process. The facility staff may serve as a

valuable resource to residents and

families, but should also act as a

champion for any rehabilitative potential that may exist.

3) If a resident is admitted to a facility with physician orders for a supportive care plan, we recommend that

the order not be followed without

going through the decision-making

process outlined below, or, at the

very least, without thoroughly assuring, and carefully documenting, that a

decision-making process raising all

relevant issues had previously been

undertaken. In all cases, the facility

should clarify the orders received so

that no ambiguity exists about the intentions of the physician and the resident.

B. Participants in a Supportive Care

Decision.

1 ) Resident: The resident must always be involved to the fullest extent

possible, even if the resident is underguardianship. The procedures recommended here are intended to involve all interested persons to the

fullest extent possible in the final decision so that all viewpoints are represented and thoroughly aired, and so

that legal risks are minimized if the

resident is unable to make the final

decision,

Since supportive care may be

viewed by some as placing a resident

in a life-threatening situation, any

such plan for an incompetent or questionably competent resident involves

considerable exposure to serious legal risks. Such a plan may, however,

be in the best interests of the resident

if all viewpoints, including medical,

religious, ethical and personal, as

well as legal, are weighed against one

another.

There is some question under

guardianship law as to whether a

guardian of a person has the legal authority to consent to a supportive care

plan. Therefore, while these guidelines recommend having a guardian

appointed if at all possible, a guardian’s consent is not an absolute guarantee of proper authority to undertake

a supportive care plan.

a) Competent Resident: When

the resident is clearly competent, the

resident has the full authority to make

the decision on a supportive care

plan, one way or the other.

b) Questionably Competent Resident: When there are questions about

the resident’s competence, but the

resident is not under guardianship

and is still able to express his or her

wishes, the following principles

should govern:

(i) If the resident does not

want a supportive care plan, no plan

should be initiated.

(ii) If the resident seems to

want a supportive care plan, the initiation of a guardianship for the resident

should be encouraged so that someone is legally designated to speak for

the resident.

(iii) If the resident seems to

want a supportive care plan and if

guardianship is not a viable alternative, a supportive care plan may properly be initiated after thorough family,

physician, staff and Bio-medical Ethics Committee involvement, as outlined below.

c) Incompetent Resident Not Under Guardianship: If the resident is

clearly incompetent but not under

guardianship, and the resident is unable to express himself or herself, the

following principles should govern:

(i) Without a guardian, no one

is legally authorized to speak for the

resident. This situation involves serious risks for the physician, the facility

and the family. However, we all agree

that an incompetent resident should

not be deprived of the right to a supportive care plan merely because of

incompetence. Therefore, we recommend the initiation of a guardianship

for the resident, so that someone is

legally authorized to speak for the

resident.

(ii) If guardianship is not a viable alternative, but a supportive care

plan seems highly appropriate under

all the circumstances, a supportive

care plan can be initiated after the

careful involvement of family, interested parties, staff, physician and Biomedical Ethics Committee. Be aware,

however, that such a situation does

pose great risks to all Involved.

(iii) If there is no guardian and

no family to involve in the decisionmaking process, but a supportive care

plan seems highly appropriate, a physician and a facility should carefully

consider whether to initiate a supportive care plan without receiving court

approval. In this case, the involvement of the Bio-medical Ethics Committee is particularly important and

strongly recommended. Facilities and

physicians are cautioned, however,

that deciding against a supportive

care plan in highly appropriate circumstances because of potential legal

risks for themselves may in itself violate the rights of the resident, both

legally and ethically’.

d) Incompetent Resident Under

Guardianship:

(i) The consent of both the

guardian and the resident should be

obtained, if the resident can in any

way express his or her wishes. The

family should be involved as outlined

below.

(ii) A guardian may wish to

seek probate court approval of a supportive care plan; however, at this

point, it is not at all clear how the

court would view such a request.

2) Family and Interested Persons:

a) Whenever possible, unless the

resident is clearly competent and forbids it, the family should be fully involved in t-he decision-making process. All family members who are in-
65

volved with the resident’s care and activitles should be included, and all

family members as close or closer in

degree of relationship to the resident

as the involved persons should be notified of the discussion. Any other

family members who may reasonable

wish to be included in the decisionmaking process should also be notified.

b) Other persons or groups involved in the resident’s care and/or

activities, or in support of the family

should also be involved.

c) We recommend that the resident’s attending physician take primary responsibility for the notification and involvement of family and

others. Each physician and facility

could, however, develop cooperative

procedures in this respect.

3) Resident's Attending Physician:

a) A supportive care plan should

be initiated by orders of the resident’s

attending physician only, never by the

facility medical director unless the

medical director is the attending physician.

b) If the resident and family are

strongly in favor of supportive care

and the physician is not, they have

the right to consult another physician

whose philosophy is more akin to

their own. However, the resident and

family should be strongly encouraged

to consider why the physician is opposed and we encourage the involvement of the Biomedical Ethics Committee.

c) If the physician questions a

family's motivation for initiation of

supportive care plan, or if there is irresolvable conflict among family

members, the matter should be referred to the facility Bio-medical Ethics Committee for additional guidance.

4) Long Term Care Facility Involvement:

a) Administrative and Professional Staff:

(i) The Director of Nursing

Services, the Resident Services Director and the Social Services Director,

or their delegates, should be involved

in the discussion. Minimally, the Administrator should be informed of the

existence of the discussion.

(ii) General supportive care

policies should be developed, along

with a basic evaluation sheet, to ensure that all relevant information is

gathered and assessed.

b) Direct Care Givers: Input

should be solicited from those directly involved in care of the resident

as they may notice small details or

patterns of significance in the condition of the resident. Careful note

should be given to the observations

and opinions of the direct care givers.

particularly when they conflict with

the recommendation of the resident

or the physician that a supportive care

plan is appropriate.

c) Medical Director: The medical

director of a long term care facility

should not direct a supportive care

plan unless he or she is also the resident’s attending physician.

We recommend involvement of the

medical director in each supportive

care decision-making process, but do

not see this as an absolute requirement. He or she should at least be

informed of the existence and progress of the consideration, and should

be available for counsel or conflict

resolution, if necessary.

The medical director should participate in the development of, and ultimately approve, all general supportive

care policies developed by the facilit}’.

d) Biomedical Ethics Committee: We encourage consideration of

each potential supportive care plan by

an inter-disciplinary Bio-medical Ethics Committee. In most facilities, the

beginnings of such a committee may

already exist (e.g., Utilization Review),

Even when it is quite certain that a

competent resident may authorize a

supportive care plan for himself or

herself, we nevertheless would encourage committee review. In cases

of questionably competent or incompetent residents, we feel it very important to have the committee’s more

objective involvement.

While the use of a facility’s Utilization Review Committee as a Bio-medical Ethics Committee may be reasonable for the present, we would recommend future development of an

expanded committee to include lay,

religious, medical, legal and other

professional representation.

C. Supportive Care Decision Making

Process

1 ) The decision. making process

should be designed to encourage full

discussion of all relevant facts and options so that the meaning and significance of supportive care is fully

understood by all participants, and to

ensure that all views are expressed

and weighed, and so that full documentation of the plan will be possible. The following steps are recommended:

a) The issue is raised by the resident, family or physician.

b) The attending physician and

facility should obtain complete medical and psycho-social information

from the resident’s records, at both

the hospital and the long-term care

facility. Observations and other comments which may not be completely

reflected in the medical records

should be solicited from direct care

givers.

c) The physician and/or facility

staff should privately discuss the potential supportive care plan and the

significance with the resident, if at all

possible, so that an assessment can be

made in the absence of any pressure

by family members.

d) The physician should participate in a full discussion with family

members and/or other interested and

involved persons, with the consent of

the resident if competent. Other family members should be notified of the

discussions by the physician.
66

e) The resident’s physician and

facility staff should discuss the issue

thoroughly among themselves. The

facility should assure itself that full

discussion between the physician and

the resident and family has taken

place.

f) All issues should be raised and

discussed with facility staff in a care

conference format.

g) The proposed plan should be

considered by the Bio-medical Ethics

Committee, particularly if the plan is

for an incompetent or questionably

competent resident.

2) GeneralAdmonitions:

a) Document all conferences

carefully and thoroughly.

b) Do not force a final decision

too soon after ail discussions have

taken place. Let all involved have

rime to mull matters over.

3) Conflict Resolution Principles:

a) If the resident can express

himself or herself and does not want

a supportive care plan, it should not

be initiated, or, if initiated by the physician, it should not be carried out by

the facility.

b) If the resident and family want

a supportive care plan and the resident’s physician will not initiate one,

the resident and family have the right

to consult another physician. In such

cases, however, the facility should ensure that the initial physician’s concerns and viewpoints are fully considered.

c) If the resident is unable to express himself or herself and family

seems to be pressing for a plan, the

physician and facility should carefully

weigh all factors before initiating and

carrying out the plan to ensure its appropriateness. The physician and facility should carefully consider the

family’s intentions and motivations

and should refer the case to the Biomedical Ethics Committee before initiating the plan.

d) If there is an intra-family dispute over the appropriateness of a

plan, we recommend careful consideration by the physician and facility as

this poses a great risk of legal challenge. We also recommend utilization

of the Bio-medical Ethics Committee

or other facility or community resources to resolve the conflict prior to

initiating the plan.

e) If the facility staff, medical director or Bio-medical Ethics Committee do not concur with the resident,

family or physician on the appropriateness of a plan (for example, if the

facility feels significant rehabilitation

potential exists), the facility should

forcefully express such opinion to the

resident, family and physician to ensure that its objections are heard and

understood. The facility may choose

to refuse to implement the plan and

recommend discharge, or may even

consider resort to the courts.

D. Documentation of a Supportive

Care Plan.

1) Physician authorization for a supportive care plan should be a specific,

individualized set of orders, stating

explicitly what will and will not be

done for the resident. It must be part

of the medical record. An order saying just “Supportive Care” (unlike

“DNR”) is not sufficient.

2) Written authorization for the

plan should be obtained from the resident whenever possible, even if under guardianship. The guardian

should also authorize the plan.

3) Written acknowledgment of the

plan should be obtained from those

interested persons who have been involved in the decision-making process whenever possible.

4) The specific plan and the facility

policies on supportive care should be

given to the resident and family so

that no ambiguity exists.

5) The decision, the nature of the

plan, and other relevant matters

should be thoroughly discussed with

all staff involved with the resident.

E. Re-Evacuation of a Supportive

Care Plan.

1 ) The plan must be t-e-evaluated

whenever the facts or conditions

which led to the initial plan change,

or whenever the resident, family or

other involved person requests it. The

same persons should be involved in

re-evaluation as were included in the

initial decision.

2) The supportive care plan should

be reviewed periodically, when the

general plan of care is reviewed. We

recommend review on a 30-day basis,

in any event.

3) We recommend that criteria and

an input sheet be developed for reevaluation, to ensure that direct care

givers are given guidance on what

changes in conditions to look for.

IV. Conclusion

The task force does not view these

recommendations and guidelines as

the definitive resolution of the dilemmas raised by the supportive care

concept, but rather as part of an ongoing dialogue on supportive care issues and practices. Comments are

welcome and may be directed to individual members of the task force.

The recommendations and guidelines set forth in this report represent

the views of the signatories as individuals. They do not necessarily reflect

the policy of any institution, professional organization or governmental

agency with which the signatory is affiliated.

References

1. See Minnesota Medical Association,

DNR Guidelines (adopted by the Board of

Trustees of the Minnesota Medical Association) (January 1981).

2. The life of a physically or mentally

disabled person is just as valuable as that

of a person described as normal or

healthy. It is not appropriate to consider a

supportive care plan on the basis of a

physical or mental disability alone.

3. Id.
67

Task Force on Supportive Care

Barbara J. Blumer, J.D. Iris C. Freeman Pamela J. Parker

Broeker, Hartfeldt, Hedges & Director Former Long Term Care OmbudsGrant Nursing Home Residents’ Advo- man

Bloomington, Minnesota cates Minnesota Board on Aging

Minneapolis, Minnesota St. Paul, Minnesota

M. Chervenak, J.D.

Legal Aid Sociecy of Minneapolis Paul Goldstein Arnold Rosenthal

Minneapolis, Minnesota Assistant Director of Social Serv- Director, Office of Health Facility

ices Complaints

Ronald E. Cranford, M.D. Hennepin County Medical Center Minnesota Department of Health

Associate Physician in Neurology Minneapolis, Minnesota St. Paul, Minnesota

Hennepin County Medical Center

Minneapolis, Minnesota F. Allen Hester, J.D. Lisa Laffoley Schmidt, J.D.

Adjunct Professor of Law Minnesota Legal Services Coalition

Julie L. Ditzler, R. N., B.S.N. William Mitchell College of Law Minneapolis, Minnesota

Resident Services Director St. Paul, Minnesota

Cedar Pines Health Care Facility Jim Varpness

Minneapolis, Minnesota Grace Nelson Long Term Care Ombudsman

Long Term Care Committee Minnesota Board on Aging

Jenean Erickson, R. N., FACNHA Minnesota Senior Federation St. Paul, Minnesota

Administrator Minneapolis, Minnesota

Yorkshire,Manor

Minneapolis, Minnesota

Affiliations are provided only to aid in the identification of the signatories. The

views expressed are not necessarily chose of the organizations.
 ..

68

ADMINISTRATIVE POLICY

and

PROCEDURE MANUAL II

LIMITING LIFE-SUSTAINING

TREATMENT

Policy:

A. Statement of Purpose

It is the policy of University Hospitals of Cleveland to provide

high quality medical care to it’s patients with the objective of

saving and sustaining life. However, this commitment involves

recognition that initiation or continuation of treatment may not

constitute optimum care when the burdens of such treatment

outweigh its benefits to the patient. At these times, the

objective is to allow as peaceful a death as possible.

B. Guidelines and Principles

When such treatment limitation is considered, the following

guidelines and principles should apply:

1.

2.

3.

4.

5.

6.

7.

8.

9.

Competent patients must be consulted and have a right to

refuse treatment.

The wishes of incompetent adults and legal minors should be

given consideration.

Plans to limit treatment must be discussed with the family

unless the patient requests otherwise.

Consultation with other health professionals involved with

the care of the patient is strongly recommended.

Members of the health care team, particularly physicians and

nurses, have the responsibility to provide an appropriate

level of assistance to patients in reaching decisions about

their care. Such efforts should be carefully coordinated.

Maintaining the dignity and comfort of the patient will

receive the highest priority.

Limitation of life-sustaining treatment in no way implies

abandonment.

There is no morally relevant distinction between withholding

and withdrawing a life-sustaining treatment when its burdens

outweigh its benefits to the patient.

If treatment limitation is not documented in the patient’s
—

69
—

70

1.

2.

3.

4.

5.
71

1.

2.

3.

4.
72

I

I
73

MEDICAL MANAGEMENT DECISIONS IN NURSING HOME PATIENTS

PRINCIPLES AND POLICY RECOMMENDATIONS

A Model Developed by the King County Medical Society

Principle Practice

Patients have “autonomy,” the right to

choose health care options, including

those at the end of life.

Patients should be provided with adequate

information to make informed choices regarding health care options.

Unpleasant information should not be withheld from patients simply because it is

unpleasant.

Although the patient’s desires are primary,

the physician is not required to follow

them if they violate professional ethics

or judgment, or if they violate the physician’s moral or religious beliefs.

When patients and physicians irrevocably

disagree on treatment options, patients

may obtain another physician and physicians may withdraw from the patient’s

care.

The preeminence of the patient’s choice

does not preclude physicians from sharing with the patient a personal judgment

about treatment options.

Advance care directives in the form of “instruction” (living wills) or “proxy” (durable power of attorney) carry moral authority and are helpful guides to caregivers

should patients become unable to communicate their treatment preferences.

Patients lacking full decisionmaking capacity should be consulted to the degree

feasible.

When the patient is not capable of choosing a course of action and does not have

an advance directive, the physician should

seek to discover the patient’s preferences.

When a patient’s desires cannot be discovered, a substituted judgment or determination of best interest should be made.

Physicians have the responsibility to elicit patient preferences about

treatment decisions, including life-sustaining treatment.

Comprehensible information pertaining to rationale, benefits, risks,

and alternatives should be provided to allow patient to make informed choices.

The provision of information, even if unpleasant, allows the patient

to make informed choices. Information regarding poor prognosis

may also allow the patient to attend to personal matters at the

end of life. Such information can be communicated in a humane

and compassionate manner.

As examples, assisting patients with suicide or treating them with

unapproved drugs violates the physician’s ethic. Some treatments

in terminally ill patients maybe medically futile. Limitation of lifesustaining treatment, such as cardiopulmonary resuscitation, may

violate the physician’s moral or religious beliefs.

Either the patient or the physician may terminate the patientphysician relationship. The physician is responsible for the patient’s

care until another physician has assumed the patient’s care,

The physician may share his judgment with the patient, but alternatives should also be made apparent. Statements such as “You have

no choice” and “You must . . .“ are inappropriate.

Physicians and other caregivers should make advance directives available to nursing home patients early in their institutionalization

when they are maximally competent to make choices. Advance

directives are legal, under specific circumstances, in most states.

Although living wills refer only to “terminal” conditions they may

be legally enforceable for other conditions.

Although a patient’s memory may be impaired, he or she may understand the ramifications of certain decisions. In these situations,

patients’ preferences deserve preeminence.

Often patients have previously declared to family, friends or caregivers how they would choose to care for themselves at the end

of their lives. If the patient is no longer competent, his or her previous desires should be respected if they can be discovered.

Some patients who are incapable of decisionmaking have never been

capable (such as the congenitally mentally retarded) or were capable at one time but never made their wishes known. For these

persons family (especially spouses) or, if available, existing legal

guardians are preferred surrogates. They should provide substiReproduced, with permission, from R.F Uhlmann, H. Clark, R.A. Pearlman, et al.,“Medical Management Decisions in Nursing Home Patients:

Principles and Policy Recommendations,” Annals of Internal Medicine, 106: 879-885, 1987.
74

Principle Practice

In the absence of these preferred decisionmaking surrogates, a surrogate must,

nevertheless, be sought to represent the

patient.

When decisions to limit treatment are

baeed on substituted judgments or determinations of best interest, consensus

among involved parties is preferable.

When in doubt about the appropriate

course of action, the physician should

presume in favor of life.

The physician’s desire to sustain the patient’s life can conflict with two venerable values in medicine, the relief of suffering and the avoidance of harm.

For patients who are in a chronic vegetative state, it is morally justifiable to limit

life-sustaining treatment, allowing the patient to die.

No-code status never means withdrawing

personal attention from the patient or

limiting attention to the relief of suffering.

Resuscitation status of nursing home patients should be determined prospectively,

defined in terms of specific interventions,

and communicated to caregivers.

As the patient’s advocate it is inappropriate for the physician to deny treatment

on the basis of cost or social allocation

priorities.

tuted judgment, that is, seek to choose as the patient would have

chosen. If the surrogate is uncertain as to what the patient’s preference would have been, they should act according to their interpretation of what would have been in the patient’s best interest.

Several options for alternative surrogate decisionmaking exist. These

options include but are not limited to legal guardians, ethics committees, and physicians. Although physicians may have a longstanding relationship with the patient, they may also be heavily

invested in the patient’s medical outcome. From this perspective,

guardians and ethics committees may provide a more balanced

perspective for the patient and are preferable surrogates. The physician, however, may function as surrogate if designated by the

patient,

Irrevocable differences may be resolved by third parties, such as

institutional ethics committees or the courts.

If patients’ desires are not known or their prognosis is unclear, the

physician should act to support life.

When further intervention has only the prospect of prolonging the

dying process, it may be preferable to limit life-sustaining treatment if this enhances patient comfort.

Nutrition and hydration provided by vein or gastric tube and treatment for life-threatening intercurrent illness may be withheld from

such patients.

Continuation of care and support must be explicitly expressed to

the patient and other caregivers and documented in the medical

record. Orders may direct action for the relief of pain, thirst, dyspnea, anxiety, and other discomforts and may take priority over

correcting physiologic conditions in the dying patient. In addition,

vigorous treatment of potentially reversible superimposed conditions may be appropriate.

patients’ resuscitation preferences can usually be determined on admission and made readily identifiable in the medical record. Decisionmaking at the time of cardiac arrest is a suboptimal standard

of care.

Withholding costly or scarce medical resources should be based on

explicit normative standards such as laws, regulations, or institutional policies and not on physicians’ personal values.
. —

Appendix C

List of Reviewers

OTA acknowledges and wishes to thank the following individuals for their comments on drafts of this report.

Faye Abdullah

Deputy Surgeon General

U.S. Public Health Service

Washington, DC

Robert A. Arnold

Division of General Internal Medicine

University of Pittsburgh

Pittsburgh, PA

Elena Cohen

Society for the Right to Die

New York, NY

Timothy M. Cook

Public Interest Law Center of Philadelphia

Philadelphia, PA

Edward R. Grant

Hinshaw, Coulbertson, Moelmann, Hoban & Fuller

Chicago, IL

Brian Hines

Executive Director

Oregon Health Decisions

Portland, OR

George A. Kanoti

Director

Dept. of Bioethics

The Cleveland Clinic Foundation

Cleveland, OH

Shelah Leader

Public Policy Institute

American Association of Retired Persons

Washington, DC

John Lombard

Morgan, Lewis, and Bockius

Philadelphia, PA

Joanne Lynn

Associate Professor

George Washington University

Washington, DC

Tracy E. Miller

Executive Director

New York State Task Force on Life and the Law

New York, NY

Michael Nevins

River Vale, NJ

Susan Nobel

Society for the Right to Die

New York, NY
Appendix D

Glossary of Acronyms and Terms

AHA

AMA

ANA

CHA

CPR

DHHS

DNR

DOD

EMs

HCFA

Acronyms

—American Hospital Association

—American Medical Association

—American Nurses’ Association

Catholic Health Association of

States

-cardiopulmonary resuscitation

the United

—Department of Health and Human Services

-do-not-resuscitate (order)

—Department of Defense

-emergency medical service

—Health Care Financing Organization

JCAHO—Joint Commission on-the-Accreditation of

Healthcare Organizations (formerly the Joint

Commission on the Accreditation of Hospitals)

OTA Officeof Technology Assessment (U.S. Congress)

PHS —Public Health Service

VA —Veterans’ Administration

Terms

Health Care Institution (or Facility): Health care institution refers to any hospital, nursing home, emergency medical service, hospice, or home care program that is engaged in direct patient care.

Life-Sustaining Treatment: Life-sustaining treatments

are drugs, medical devices, or procedures that can

keep alive a patient who would otherwise die within

a foreseeable, though usually uncertain, time. Examples include cardiopulmonary resuscitation, mechanical ventilation, renal dialysis, nutritional support

(i.e., tube or intravenous feeding), and antibiotics

to fight life-threatening infections.

Protocol: Protocol refers collectively to decisionmaking guidelines, policies, and models, defined as

follows:

Guidelnes: Guidelines are advisory documents. This

report considers guidelines that are intended to

assist health care providers by suggesting morally

and legally acceptable approaches to the difficult questions related to the provision, withholding, or withdrawing of life-sustaining treatment.

Policy: A policy is an instrument of health care facility governance that is designed to ensure that

essential administrative objectives are met. Policies can state fundamental principles for conduct, provide for orderly, accountable interactions between practitioners within an institution,

and ensure that social expectations or legal requirements for health care are met. The hallmarks

of policies are their prescriptive language, their

precise assignment of responsibility for decisions,

and their detailing of procedures to be followed

in implementing decisions.

Model: A model protocol is an advisory document

intended to assist health care institutions in developing their own policies or guidelines.

78
Appendix E

References

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

American College of Emergency Physicians, “Medical, Moral, Legal, and Ethical Aspects of Resuscitation for the Patient Who Will Have Minimal Ability to Function or Ultimately Survive, ” Annals of

Emergency Medicine 14:919-926, 1985.

American College of Emergency Physicians, Board

of Directors, “Directors Consider Council Resolutions,” ACEP News, Oct. 4, 1986.

American College of Emergency Physicians, Board

of Directors, ‘(Policy Statements)” ACEP News, Jan.

2, 1987.

American Health Care Association, “AHCA Policy

Paper: Patients’ Rights,” American Health Care

Association Journal 7(5):55-60, 1981,

American Health Care Association, “Questionably

Competent Long-Term Care Residents: Problems

and Possible Solutions)” Washington, DC, 1982.

American Health Care Association, “Views of the

American Health Care Association: Health Care

Decisionmaking in Long-Term Care Facilities)”

Washington, DC, 1982.

American Hospital Association, “Statement on a

Patient’s Bill of Right)” Hospitals 47(4):41, 1973.

American Hospital Association, Policy and Statement: The Patient Choice of Treatment Options,

Catalogue No. 157628 (Chicago, IL: 1984).

American Hospital Association, Values in Conflict:

Resolving Ethical Issues in Hospital Care (Chicago,

IL: 1985).

American Medical Association, Council on Ethical and Judicial Affairs, Current Opinions of the

Council on Ethical and Judicial Affairs of the

American Medical Association-1986 (Chicago, IL:

1986).

American Medical Association, Council on Ethical and Judicial Affairs, “Report on Do Not Resuscitate Orders, ” presented by John H. Burkhart,

chairman, to the AMA House of Delegates, December 1987.

American Nurses’ Association, Committee on

Ethics, “Guidelines for Nurse Participation and

Leadership in Institutional Ethical Review Processes,” Kansas City, MO, 1984.

13. Annas, G.J., and Glantz, L. H., “The Right of Elderly

Patients to Refuse Life-Sustaining Treatment, ’’Milbank Quarterly 64(Suppl. 2):95-162, 1986.

14. Areen, J., “The Legal Status of Consent Obtained

From Families of Adult Patients to Withhold or

Withdraw Treatment, ” Journal of the American

Medical Association 258:229-235, 1987.

15. Arena, F. P., Perlin, M., and Turnbull, A. D., “Ini16.

17

18.

19.

20.

21.

22.

23.

24.

25.

26.

27

28

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Medicine, University Hospitals, Cleveland, OH,

persona] communication, March 1988.

172. Youngner, S.J., Lewandowski, W., McClish, D. K.,

et al., “Do-Not-Resuscitate Orders: Incidence and

Implications in a Medical Intensive Care Unit,”

Journal of the American Medical Association

253:54-57, 1985.

173. Zimmerman, J.E., Knaus, W.A., Sharpe, SM., et

al., ‘The Use and Implications of Do Not Resuscitate Orders in Intensive Care Units,” Journal of

the American Medical Association 255:351-356,

1986.
— . .

List of Related OTA Reports

● Life-Sustaining Technologies and the Elderly.

This assessment focuses on five life-sustaining technologies: cardiopulmonary resuscitation, mechanical ventilation, renal dialysis, nutritional support, and life-sustaining antibiotic therapy. It describes the use of these

technologies for life-threatened elderly patients, presents data on use and cost in different settings, and discusses aspects of treatment and outcomes that distinguish elderly patients from younger ones. Ethical and

legal questions, particularly those related to patients’ rights and surrogate decisionmaking are reviewed. Also

addressed are manpower and training issues and likely future developments in life-sustaining technologies.

472 p.

OTA-BA-306, July 1987, GPO stock #052-003-01074-7. NTIS order #PB 87-222 527/AS.

(Contractor Docments/Working Papers, available from NTIS)

● Summary: Life-Sustaining Technologies and the Elderly.

OTA-BA-307, July 1987, GPO stock #052-003-01078-0.

NOTE: Reports are available through the U.S. Government Printing Office, Superintendent of Documents, Washington, DC 20401-9325, (202)

783-3238; and the National Technical Information Service, 5285 Port Royal Road, Springfield, VA 22161-0001, (703) 487-4650.

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