United States General Accounting Office

GAO Report to the Ranking Minority Member,

Subcommittee on Health,

Committee on Ways and Means,

House of Representatives

August 1995 PATIENT SELFDETERMINATION ACT

Providers Offer

Information on Advance

Directives but

Effectiveness Uncertain

GAO/HEHS-95-135

GAO United States

General Accounting Office

Washington, D.C. 20548

Health, Education, and

Human Services Division

B-257739 

August 28, 1995

The Honorable Fortney (Pete) Stark

Ranking Minority Member

Subcommittee on Health

Committee on Ways and Means

House of Representatives

Dear Mr. Stark:

In 1990, the Congress passed legislation commonly referred to as the

Patient Self-Determination Act (PSDA) to reinforce individuals’

constitutional right to determine their final health care.1

 The act requires

health care providers to increase public awareness about the use of

“advance directives”—a living will or health care power of attorney. An

advance directive specifies how life-support decisions should be carried

out should the patient become terminally ill and unable to communicate

his or her wishes.2

As you requested, this report provides information on PSDA implementation

and the effectiveness of advance directives in ensuring patient

self-determination. Specifically, we looked at the extent to which

(1) institutional health care providers and the federal government are

complying with the act’s provisions, (2) the public uses advance directives

to express their end-of-life treatment wishes, and (3) an advance directive

effects a patient’s desired care.

In preparing this report, we interviewed federal officials, representatives

of health care provider associations including hospitals, physicians, and

nursing home associations), interest groups, and medical ethicists. We

reviewed federal regulations as well as written comments submitted by

interested parties. We also reviewed the literature and surveys conducted

by public and private entities and met with researchers conducting studies

on advance directives. We did not attempt to systematically measure

either the number of people with advance directives or institutional

compliance with PSDA. We conducted our review from July 1994 to

1

Omnibus Budget Reconciliation Act of 1990, P. L. 101-508, sec. 4206 and 4751, 104 Stat. 1388, 1388-115,

and 1388-204 (classified respectively at 42 U.S.C. 1395cc(f) (Medicare) and 1396a(w) (Medicaid)

(1994)).

2

In current medical practice, it is presumed that the patient wants all possible care to be provided,

unless otherwise stated. PSDA further assumes that the treatment preferences expressed by people

when they are competent are also desired by them when they become incompetent. This issue is being

addressed in several court cases.

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July 1995 in accordance with generally accepted government auditing

standards.

Results in Brief Health care institutions and the Department of Health and Human Services

(HHS) generally appear to comply with most PSDA requirements. Surveys,

facility inspections, and industry officials indicated that nearly all

providers inform patients about their right to have an advance directive,

but fewer consistently document in the medical record whether a patient

has one. HHS has incorporated PSDA provisions into Medicare and Medicaid

provider requirements, expanded the Medicare handbook, and engaged in

a limited public education campaign. However, the agency has not

conducted a mailing to Social Security recipients about advance

directives—a specific requirement of the act.

We also found that advance directives have been advocated more than

they have been used. Surveys indicated that, in general, only 10 to

25 percent of Americans have documented their end-of-life choices or

appointed a health care agent. Lack of communication between patients

and physicians and misunderstandings about the appropriateness and

purpose of advance directives may explain why completion rates remain

low.

The provider groups we spoke with generally support advance directives.

Yet, advance directives may not always be implemented as patients intend.

A variety of factors affects whether an advance directive actually controls

end-of-life care decisions, including the availability or specificity of a living

will, family wishes, physicians’ attitudes, and legal issues.

Background The controversy over patients’ rights escalated in the 1970s, coinciding

with dramatic advances in medical technology. The early legal cases

concerned the “right to die,” testing what medical treatment can be

administered in the face of a patient’s desire to die naturally, without

artificial, life-prolonging equipment. In the Quinlan case, for example, the

court held that the Constitution guarantees individuals the right to direct

their own medical care.3

 Over time, the right to die concept came to be

seen as part of a patient’s right to self-determination, including a

recognition that some patients prefer that all possible treatments and

procedures be used to treat them.

3

In re Quinlan, 355 A.2d 647, (N.J.), cert. denied, 429 U.S. 922 (1976).

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PSDA, which became effective in December 1991, applies to most

institutional providers and prepaid plans that participate in Medicare or

Medicaid. These include hospitals, nursing homes, home health care

providers, hospices, and health maintenance organizations, but not

providers of outpatient services or emergency medical teams.4

Specifically, the provider or organization is required to

• provide to all adult patients, residents, and enrollees written information

on their rights under state law to make decisions concerning medical care,

including the right to execute an advance directive, as well as maintain the

policies of the provider regarding implementation of advance directives;

• document in the medical record whether the individual has an advance

directive;

• educate the staff and the community about advance directives;

• not condition the provision of care, or otherwise discriminate, on the basis

of whether a patient has an advance directive; and

• ensure compliance with state law respecting advance directives.

In addition, PSDA requires that HHS conduct a public education campaign

about advance directives and oversee provider compliance.

An advance directive sets out an individual’s preferences about treatment

should the person become incompetent or unable to communicate these

preferences to medical personnel.5

 In addition to directing physicians to

withdraw or withhold life-sustaining procedures, advance directives may

be used to record a patient’s wish to receive all available medical

treatment. (See app. I for examples of advance directive forms.) There are

essentially two types of advance directives: living wills and health care

powers of attorney.

A living will is a document that informs health care providers of the kind

of medical care the individual wants provided or withheld. Living wills can

be nonspecific statements, scenario- and treatment-specific statements, or

include value profiles. Under state laws, a living will typically takes effect

when the patient (1) is diagnosed as close to death from a terminal illness

4

Ambulance staff may not honor a living will because to do so they generally need a physician’s

certification that the patient is dying.

5

Situations involving people who are incompetent and receiving life-sustaining treatment are not rare.

For example, one study of intensive care units (ICU) found that although life-sustaining care was

withheld or withdrawn relatively infrequently, about half of all deaths in the ICU were precipitated by

decisions to do so. Virtually all of the patients for whom support was withheld or withdrawn were

incompetent at the time. See N.G. Smedira, B.H. Evans, L.S. Grais, and others, “Withholding and

Withdrawal of Life Support from the Critically Ill,” The New England Journal of Medicine, Vol. 322

(1990), pp. 309-15.

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B-257739 

or is permanently comatose and (2) cannot communicate his or her wishes

for medical care. In general, once a physician receives a living will, he or

she either must honor its instructions or transfer the patient to another

physician who will honor them. State laws on living wills typically exempt

physicians from liability for complying with advance directives and

prescribe minimal penalties for physicians who refuse to follow them. As

discussed in appendix II, states have imposed requirements on what

medical conditions can make a living will operative.

A health care power of attorney is a document that identifies a health care

agent as decisionmaker for the patient. The health care agent has

decision-making authority when the individual is terminally ill or

permanently comatose. In addition, the agent may be given the authority

to make any other kind of health care decisions regardless of the condition

of the patient, thereby giving the agent broader decision-making authority

than typically specified in a living will.6

 Under state law, a health care

power of attorney typically becomes operative when a physician decides

the patient is unable to make a decision.7

Advance directives are not universally supported. A number of groups

have expressed concerns about the ethics of patient self-determination

laws and the laws’ potential effects. They are concerned that a lower

standard of care for all patients, active euthanasia, or discrimination

against people with disabilities could result. Some physicians also have

raised concerns about advance directives. Some believe that such

documents will reduce their authority over treatment decisions and could

produce an adversarial physician-patient relationship. More generally,

physicians may oppose any extension of legal regulation into medical

practice.

Institutional Providers

and HHS Appear to

Comply With Most

PSDA Requirements

Institutional providers and HHS generally appear to be complying with

most of the act’s requirements. Limited data indicate that most providers

offer information to patients about executing an advance directive, but

problems may occur in documenting whether a patient actually has one.

HHS, through the Health Care Financing Administration (HCFA), has

6

While a patient may appoint a representative in his or her living will, that representative may be able

to make decisions for the patient only about life-support treatments and only if the patient is in one of

the medical conditions specified in the state law.

7

Before a health care agent can make life-support decisions, many states require that a second

physician confirm that the patient is unable to make treatment decisions.

Page 4 GAO/HEHS-95-135 Advance Directives
B-257739 

complied with most PSDA provisions. However, it has not conducted a

required mailing to Social Security beneficiaries about advance directives.

Limited Information

Suggests That Institutions

Comply With Most

Requirements

Under PSDA, Medicare and Medicaid hospitals, nursing facilities, and other

providers must inform patients of their decision-making rights, distribute

state-specific information about advance directives, and inquire and

document whether a patient has an advance directive. Information on the

degree to which providers fulfill these requirements is limited. Few

surveys have looked specifically at compliance with advance directive

requirements. These sources indicate that most health care institutions

comply with the requirement to develop and distribute information on

advance directives. However, it also appears that fewer facilities meet the

requirements that the existence of an advance directive be documented in

an individual’s medical record and that an organization provide for

community education on advance directives.

In early 1992, the HHS Office of the Inspector General (OIG) conducted a

survey of the institutional implementation of PSDA.

8 OIG concluded that

most of the facilities sampled were complying with the administrative

requirements of the act. All, or almost all, facilities had (1) developed

written policies and procedures about advance directives; (2) developed

written materials on advance directives and provided them to each adult

patient on admission or when commencing services; (3) provided

materials to patients, including an explanation of state law; and

(4) educated staff about advance directives. At about three-quarters of the

facilities, the materials provided to the patient clearly state that a patient

does not have to have an advance directive to receive treatment.

Approximately two-thirds of the facilities had planned or provided

community education on advance directives.

However, the report also concluded that “performance in clearly and

consistently documenting the existence of an advance directive in the

chart needed improvement.” At 15 percent of the facilities, more than half

of the charts had missing or incomplete documentation on whether a

8

Department of Health and Human Services, Office of Inspector General, Patient Advance Directives:

Early Implementation Experience, OEI 06-91-01130 (Aug. 1993), pp. 6-7. The inspection included 24

hospitals, 24 nursing facilities, and 24 home health agencies; 1,553 charts were reviewed. The

information from charts was projected to all Medicaid- and Medicare-participating organizations. The

report states that “while some of the projections have poor precision due to the limited number of

facilities and the four stage sampling technique, it is still felt that they represent a reasonable estimate

of initial implementation efforts.”

Page 5 GAO/HEHS-95-135 Advance Directives
B-257739 

patient had an advance directive.9 The report noted that personnel in many

sampled facilities attributed chart documentation problems to confused or

disoriented patients, emergency room admissions, or pregnant patients not

qualified to implement an advance directive under state law.

Additional information on compliance is available from accreditation

surveys performed by the Joint Commission on Accreditation of

Healthcare Organizations (JCAHO).10 While JCAHO’s standards pertaining to

advance directives are somewhat different than the PSDA requirements,

they overlap on most of the requirements.11 Results from 514 hospitals

surveyed from January through May 1994 showed that almost all hospitals

were complying with the standards common to PSDA and JCAHO. According

to a JCAHO official, these results are similar to those for the 1992 and 1993

surveys.

Furthermore, HCFA officials we spoke with believe that, based mainly on

self-reported information, nearly all Medicare and Medicaid facilities are

complying with PSDA’s administrative and documentation provisions.

Similarly, officials in HCFA’s Office of Managed Care noted that, to their

knowledge, almost no health plans have been found noncompliant with

PSDA requirements. Compliance is determined through providers’ written

assurances to state survey agencies or routine on-site validation surveys.

HHS Complied With Most

PSDA Provisions

PSDA requires HHS to take several actions to ensure provider compliance

and to educate the general public. HCFA incorporated PSDA requirements

into Medicare contracts and survey protocols for prepaid plans, home

health agencies, nursing homes, and skilled nursing facilities. HCFA also

released state Medicaid manual instructions containing guidelines for

implementing PSDA provisions.

9

In agency comments on the OIG report, the HCFA Administrator noted, “We believe it is contradictory

to assert that most facilities are complying with the legislative requirements, but at the same time find

that only 26 percent of facilities clearly and consistently document whether the patient has an advance

directive. Significantly, this report measured initial implementation efforts only 1 month after the

regulation was in place.”

10JCAHO provides “deemed” certification for roughly 85 percent of participating hospitals. That is,

HCFA “deems” hospitals that meet JCAHO accreditation standards to be certified to participate in

Medicare.

11For example, JCAHO did not have a standard requiring community education as required by PSDA.

Conversely, until the 1995 surveys, JCAHO standards included a provision that a copy of the patient’s

advance directive be kept in the medical record and reviewed periodically with the patient or health

care agent.

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In addition, PSDA requires HHS to provide technical assistance to the states

and to conduct a public education campaign on advance directives. As

shown in table 1, HHS has fulfilled some but not all of these responsibilities.

HCFA prepared and distributed a brochure and videos to provider

organizations and groups that work with Medicare beneficiaries and also

placed brochures in information displays at targeted locations. However,

HHS did not mail information about advance directives to all Social

Security beneficiaries as mandated. A HCFA representative we spoke with

explained that HHS had not been appropriated the funds needed to comply

with this provision. He estimated that such a mailing would cost HHS

several million dollars.

HCFA also did not fully assist states in developing documents describing

state-specific laws or help states ensure that providers receive documents

that are to be distributed. According to a HCFA official, there was no need

to duplicate efforts of private organizations that had developed summaries

of state laws regarding advance directives and made them available to

providers and state agencies. In fact, we found that the American Bar

Association and Choice In Dying (a national, not-for-profit advocacy group

concerned with the rights and needs of the dying, their families,

caregivers, and health care providers) prepared state-specific information

on advance directives that would meet this need.12

12See, for example, American Bar Association, Commission on Legal Problems of the Elderly, Patient

Self-Determination Act State Law Guide (Washington, D.C.), a comprehensive guide to assist states

and other groups in implementing the PSDA mandate to develop written descriptions of state laws. It

explains PSDA, outlines the basic principles and a process for developing written descriptions,

provides background on patients’ rights, and includes a model statement.

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Table 1: HHS/HCFA Compliance With

PSDA’s Public Education Provisions Requirement Implementation activities

Develop or approve nationwide

informational materials to be distributed by

providers

In September 1991, HCFA released a

technical assistance information package.

It included a sample public information

document about advance directives for

use by national news media, consumer

publications, and state agencies on aging.

Also, HCFA issued a press package that

included a list of organizations and

publications that have information on the

issue.

Assist state agencies, associations, or other

private entities in developing state-specific

documents to be distributed by providers

HHS required each state, acting through a

state agency, association, or other private

nonprofit entity, to develop a written

description of the state law (statutory or

judge-made) concerning advance

directives.

Assist state agencies, associations, or other

private entities in ensuring that providers

receive copies of the documents

HCFA sent a letter to each state Medicaid

director, along with a sample public

information document suggestive of the

written information to be disseminated by

providers.

Mail information to Social Security recipients HHS has not conducted a mailing to Social

Security recipients.

Add a page on advance directives to the

Medicare handbook

HCFA inserted a section on advance

directives in the Medicare handbook.

Few Individuals

Complete Advance

Directives

The underlying assumption of PSDA is that individuals will prepare advance

directives if given sufficient information. Despite improved public

awareness of patient self-determination issues, however, the number of

individuals completing formal advance directives has been estimated at

between 10 and 25 percent (with some estimates as low as 5 percent) of

the adult population.

Discomfort with the subject of death and dying is not typically the reason

people fail to complete advance directives. Rather, a number of social

factors, particularly poor communication among individuals, physicians,

and family members, present barriers to developing the required

documents. Noting that only 50 percent of the population completes an

estate will, a leading researcher we spoke with predicted that the

proportion completing an advance directive will likely never be any

greater than that.

Page 8 GAO/HEHS-95-135 Advance Directives
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More People Express

Interest in Advance

Directives Than Actually

Complete One

There are no recent nationally representative studies on how many

Americans have completed advance directives. However, researchers have

conducted many small studies on discrete populations, such as nursing

home residents or hospital patients. These studies are consistent in their

finding that completion rates are one-third to one-half awareness rates.

These proportions vary depending on the sex, age, and health of the

population surveyed. A representative of Choice In Dying told us that most

people who complete advance directives are white, middle- to upper-class,

educated, older females. A 1993 study by the HHS OIG found that only

18 percent of hospital patients had advance directives, compared with

almost 50 percent of patients in a nursing facility.13 The OIG study also

reported that only 9 percent of patients under 30 had a directive, while

35 percent of patients over 75 had one. Table 2 shows the results of several

studies that measured the public’s familiarity with and completion of

advance directives.

13Patient Advance Directives: Early Implementation Experience.

Page 9 GAO/HEHS-95-135 Advance Directives
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Table 2: Selected Surveys of Advance

Directive Awareness and Completion

Rates

Study author and

date

Population

surveyed Awareness rate Completion rate

Teno and others

(1994)

Over 3,000 severely

ill patients

Living will-62%

HCPA-42%

Advance

directive-20%

HHS/OIG (1993) 1,500 patient charts

at hospitals, nursing

facilities, home

health agencies

Advance

directive-67%

Advance

directive-21%

Janofsky and Rovner

(1993)

191 nursing home

residents

Living will- 87%

HCPA-82%

Living will-18%

HCPA-48%

Elpern and others

(1993)

46 inpatients; 50

outpatients

Heard of living will

or HCPA-77%

Advance

directive-29%

Daly and Sobal (1992) 116 home care

patients and

caregivers

Living will-33%

HCPA-60%

Living will-5%

HCPA-50%

Emanuel and others

(1991)

405 outpatients and

102 general public

Advance

directive-90%

Advance

directive-15 to 18%

Cohen-Mansfield and

others (1991)

97 elderly inpatients HCPA-62% HCPA-16%

Legend

HCPA = Health Care Power of Attorney

Sources:

J.M. Teno, J. Lynn, R.S. Phillips, and others, “Do Formal Advance Directives Affect Resuscitation

Decisions and the Use of Resources for Seriously Ill Patients,” The Journal of Clinical Ethics, Vol.

5, No. 1 (Spring 1994), pp. 23-30.

Department of Health and Human Services, Office of Inspector General, Patient Advance

Directives: Facility and Patient Responses, OEI 06-91-01131 (Aug. 1993).

J.S. Janofsky and B.W. Rovner, “Prevalence of Advance Directives and Guardianship in Nursing

Home Patients,” Journal of Geriatric Psychiatry and Neurology, Vol. 6 (Oct.-Dec. 1993), pp.

214-16.

E.H. Elpern, S.B. Yellen, and L.A. Burton, “A Preliminary Investigation of Opinions and Behaviors

Regarding Advance Directives for Medical Care,” American Journal of Critical Care, Vol. 2, No. 2

(Mar. 1993), pp. 161-67.

M.P. Daly and J. Sobal, “Advance Directives Among Patients in a House Call Program,” Journal of

the American Board of Family Practice, Vol. 5, No. 1 (Jan.-Feb. 1992), pp. 11-15.

L.L. Emanuel, M.J. Barry, J.D. Stoeckle, and others, “Advance Directives for Medical Care—A

Case for Greater Use,” The New England Journal of Medicine, Vol. 324 (1991), pp. 889-95.

J. Cohen-Mansfield, J.A. Droge, and N. Billig, “The Utilization of the Durable Power of Attorney for

Health Care Among Hospitalized Elderly Patients,” Journal of the American Geriatrics Society, Vol.

39, No. 12 (Dec. 1991), pp. 1174-78.

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Barriers to Developing

Advance Directives

Remain

Individuals may not complete advance directives for a number of reasons.

How a patient learns of advance directives may be an important factor.

Many experts with whom we spoke believe that to improve completion

rates, patients must discuss advance directives with their physicians or

health care agents.14 This communication would ideally occur before a

patient reached a state that made the necessity of end-of-life planning

imminent to allow adequate time for thoughtful and in-depth discussions.

Although the importance of communication is understood, the frequency

of discussions between patients and physicians on advance directives has

not significantly increased. According to a 1991 Harvard study, one of the

most frequently cited barriers to completing an advance directive was the

patient’s expectation that the physician would take the initiative.15 Other

studies have shown that some patients may not want to initiate such

discussions because they have not established a personal relationship with

the physician or they feel that such a discussion may present the physician

with a conflict of interest.16 However, many health care providers assume

patients will bring up the issue.

Physicians are often reluctant to discuss end-of-life care because they

(1) lack the knowledge or the training on how to formulate advance

directives;17 (2) believe directives are unnecessary for young, healthy

patients;18 (3) are not compensated for the time it takes to carefully

discuss the topic;19 or (4) feel death is not an appropriate outcome of care.

As one study noted, “The notion of shared medical decision making is a

14A study of physician-initiated discussions of advance directives found that a high proportion of

patients at a nursing home and in home care completed advance directives after they were approached

by a physician. L.J. Markson, J. Fanale, K. Steel, and others, “Implementing Advance Directives in the

Primary Care Setting,” Archives of Internal Medicine, Vol. 154 (1994), pp. 2321-27.

15L.L. Emanuel, M.J. Barry, J.D. Stoeckle, and others, “Advance Directives for Medical Care—A Case

for Greater Use,” The New England Journal of Medicine, Vol. 324 (1991), pp. 889-95.

16S. Evans and P. Clarke, “Rethinking How We Communicate About Advance Directives: Hidden Errors

in Our Assumptions About Planning for Care,” presented at the Annenberg Washington Program and

the American Association of Critical Care Nurses (Nov. 9-10, 1992).

17The American Medical Association has developed two companion booklets on advance directives.

The version for physicians explains PSDA, discusses the role of the physician, and gives specific

suggestions for working with patients. The patient brochure includes commonly raised questions and

suggestions for discussing treatment options. According to an association spokesman, there has been

little demand for these materials.

18R.S. Morrison, E.W. Morrison, and D.F. Glickman, “Physician Reluctance to Discuss Advance

Directives,” Archives of Internal Medicine, Vol. 154 (1994), pp. 2311-18.

19The American Medical Association and others believe that financial incentives would encourage

discussion of advance directives. They would like insurance companies to reimburse physicians for

time spent counseling patients about advance directives.

Page 11 GAO/HEHS-95-135 Advance Directives
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relatively recent phenomenon, and physicians traditionally have placed

greater value on protecting patient welfare than respecting patient

rights.”20

Another possible barrier is that PSDA requires providers and organizations

to discuss advance directives at the time a patient is admitted to a medical

facility or comes under the care of a home health agency or hospice.

Providers, researchers, and interest groups agree that admission is not a

particularly good time for people to first think about their end-of-life

treatment preferences, although it may be an appropriate time to

reconsider them. Hospitals and nursing homes, in particular, find that such

timing could be problematic, since newly admitted patients are often ill,

traumatized, or simply overwhelmed.21 Furthermore, hospitals generally

use nurses, social workers, patient representatives, and clergy to distribute

a limited amount of information on advance directives such as forms and

brochures.22 One medical ethicist we spoke with suggested that this could

pose a problem if medical questions or issues arise that the people

providing the information cannot respond to appropriately.

A number of other issues may also present barriers to developing advance

directives. Some individuals misunderstand advance directives, believing

that they are only relevant for older people or those in poor health. For

others, social impediments may interfere. For example, individuals may

not have family members or friends who can serve as surrogate

decisionmakers or may fear that family members would be upset by the

discussion or the document. In addition, individuals who have difficulty

gaining access to the health care system may be suspicious of advance

directives, fearing that if they express a preference to terminate care under

certain conditions, it will be used to limit other or all types of care.

Advance Directives

May Have Limited

Effectiveness

The provider groups we spoke with generally supported advance

directives. Yet, advance directives may not always be implemented as

patients intend. Although providers generally are legally required to

implement a patient’s advance directive, it is not clear that they always do

20Markson, Fanale, Steel, and others, p. 2324.

21If a patient is incapacitated at the time of admission and is unable to receive information, the facility

should give advance directive information to the patient’s family or surrogate.

22A hospital official noted that the shortening of hospital stays limits the hospital’s ability to make

further information available.

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so. In one study, for example, patient care as expressed in living wills was

provided 75 percent of the time.23

A variety of factors affects whether an advance directive actually controls

end-of-life care decisions, including the availability or specificity of a living

will, family wishes, physicians’ attitudes, and legal issues. Although

advance directives may be effective in designating proxy decisionmakers,

there is evidence that health care agents may not accurately express the

patients’ wishes. Furthermore, some patients may want their physicians or

agents to override their advance directives in some cases or at least

interpret them with broad discretion.

Experts agree that the effectiveness of an advance directive is contingent

upon the patient’s discussions of end-of-life treatment preferences with

those who may need to make such medical decisions, be they providers or

health care agents. Better communication with patients may help

physicians in interpreting living wills and improve the accuracy of proxy

assessment of patient treatment wishes.

Directives Are Often

Unavailable

The patient’s advance directive may not be followed simply because it is

not available when needed. PSDA does not require that the provider keep a

copy of the patient’s directive with the patient’s chart. In fact, the 1992 OIG

survey of facilities found that only 60 percent of patients with advance

directives had copies with their medical charts.24 Similarly, in its 1994

hospital survey, JCAHO found that only 79 percent of hospitals fully met its

standard that “any advance directive(s) is in the patient’s medical record

and is reviewed periodically with the patient or surrogate decision maker.”

It is not unusual for a patient to keep the only copy in a safe deposit box.25

In addition, the directive may not accompany a patient who is transferred

from one institution to another. In one study, an advance directive was

with the nursing home chart for 74 percent of the patients transferred to a

hospital, but the document was successfully delivered to the hospital and

incorporated into the hospital record for only about one-third of the cases.

(Staff at the nursing home suggested staff turnover as a cause.)

23M. Danis, L.I. Southerland, J.M. Garrett, and others, “A Prospective Study of Advance Directives for

Life-Sustaining Care,” The New England Journal of Medicine, Vol. 324 (1991), pp. 882-88.

24Patient Advance Directives: Early Implementation Experience.

25In a self-administered questionnaire distributed to 200 outpatients, 50 percent of those who had

completed an advance directive kept the only copy of the document(s) in a safe deposit box. See A.W.

Broadwell, E.V. Boisaubin, J.K. Dunn, and others, “Advance Directives on Hospital Admission: A

Survey of Patient Attitudes,” Southern Medical Journal, Vol. 86, No. 2 (1993), pp. 165-68.

Page 13 GAO/HEHS-95-135 Advance Directives
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Simply having advance directives available is not necessarily enough to

make these documents effective. One study indicated that physicians are

often not aware of patients’ advance directives. Only one-third of the

physicians providing care to terminally ill patients with advance directives

knew that the directives were in the patients’ charts on day 10 of their

hospital stays. Some physicians do not treat the documents as important.26

Directives Often Lack

Clarity

Some advance directives may not be followed because how they should be

interpreted is unclear. Living wills may specify conditions that cannot

easily be translated into medical terms. For example, “heroic measures”

may or may not include cardiopulmonary resuscitation, and “no hope of

recovery” may actually mean “very remote chance” since absolute

certainty is impossible. Similarly, the definition of “terminal” can be

subject to interpretation or the care being given may be said to be only

palliative. Such linguistic or medical vagueness commonly found in

predrafted forms may cause physicians to disregard the document.

Another problem is that an individual with an advance directive may not

have previously discussed specific treatment preferences with a

designated health care agent. A study of discharged hospital patients

found that although 73 percent had general discussions with their agents,

only 33 percent had discussions about specific end-of-life interventions,

such as mechanical ventilation.27 Some studies have shown that proxy

assessments, and even physician predictions, of patient preferences vary,

but are sometimes no better than chance. One study found “the only

predictor of accurate surrogate decision making was specific discussion

between patient and surrogate about life support.”28

In addition, many people are not clear in their own minds what they would

want. Medical decisions can be particularly complicated. Anticipating all

the possible facts and variables is a daunting, if not impossible, task. That

is why some ethicists focus on the importance of discussing values rather

than specific instructions.29

26Personal communication with Dr. J.M. Teno.

27E.J. Emanuel, D.S. Weinberg, R.G. Gonin, and others, “How Well Is the Patient Self-Determination Act

Working?: An Early Assessment,” The American Journal of Medicine, Vol. 95 (1993), pp. 619-28.

28J. Suhl, P. Simons, T. Reedy, and others, “Myth of Substituted Judgment: Surrogate Decision Making

Regarding Life Support Is Unreliable,” Archives of Internal Medicine, Vol. 154 (1994), pp. 90-96.

29For an example of this type of form, see appendix I.

Page 14 GAO/HEHS-95-135 Advance Directives
B-257739 

Conflict With Family

Wishes

Even if a patient has an advance directive, physicians still consult the

family. Although it is contrary to law, physicians sometimes do not

implement an advance directive if it conflicts with the family’s wishes.

This is most likely to occur if the treatment is somewhat controversial,

such as the withdrawal of artificial nutrition and hydration. For example, a

study of tube feeding found that family opinion was the most influential

factor affecting the physician’s recommendation and that most physicians

said they would follow family preferences even when contrary to the living

will.30 Similarly, a physician may try to influence the family or other health

care agent’s decision.31 Family members may not be assertive enough

about their rights to continually question and assert themselves with the

physician.

Physician Autonomy Physicians’ traditional pattern of practicing independently may also affect

the implementation of directives. According to ethicists and provider

representatives with whom we spoke, physicians typically handle

end-of-life decisions appropriately. However, they noted that some

physicians may be substituting their own values in not implementing

directives as written. A review of recent trends in health care

decision-making laws stated that

“The evidence suggests that physicians generally still consider it their responsibility to

make treatment decisions that they believe are in the patient’s best interest and that patient

preferences should be ignored if they are inconsistent with the physician’s view of the

patient’s best interests. In other words, it appears that end-of-life decisions are frequently

driven by the physician’s values rather than the patient’s values.”32

Examples of this predominance of physicians’ values are becoming more

evident. A recent study at the University of Pennsylvania Medical Center

found that 39 percent of ICU doctors surveyed had ended life-sustaining

treatment on the basis of medical futility33 without the consent—or

sometimes the knowledge—of the patient or family. In addition, 3 percent

30J.W. Ely, P.G. Peters, S. Zweig, and others, “The Physician’s Decision to Use Tube Feedings: The Role

of the Family, the Living Will, and the Cruzan Decision,” Journal of the American Geriatric Society, Vol.

40 (1992), pp. 471-75.

31Contrary to public opinion, physicians may actually be more willing than family members to withhold

or withdraw life-sustaining treatment. There is some evidence that physicians and nurses are more

troubled about the provision of overly burdensome treatment than about undertreatment. See M.Z.

Solomon, L. O’Donnell, B. Jennings, and others, “Decisions Near the End of Life: Professional Views on

Life-Sustaining Treatments,” American Journal of Public Health, Vol. 83, No. 1 (1993), pp. 14-23.

32D. Orentlicher, “The Limits of Legislation,” Maryland Law Review, Vol. 53, No. 4 (1994), pp. 1281.

33In general, medical futility refers to treatments that will not positively affect the patient.

Page 15 GAO/HEHS-95-135 Advance Directives
B-257739 

said they had made similar decisions over the objection of a patient’s

family, and 34 percent “declined to withdraw” life support despite a

family’s wishes.34

Ethical and Legal Issues Physicians’ ethical views may also influence implementation of advance

directives.35 Although some experts hold that there is little or no legal or

ethical distinction between withholding and withdrawing treatment, be it

“ordinary” or “extraordinary” care, a significant proportion of providers do

see a distinction. Similarly, some state statutes allow the termination of

artificial nutrition and hydration only when explicit statements are present

in the directive. However, many providers believe that such care should

always be continued, even if other life supports, such as ventilation and

dialysis, are stopped.36

Concern over litigation may be an issue for both the facility and the direct

provider. For example, nursing homes and home care agencies, which are

closely regulated, are especially concerned about litigation. Physicians

may be apprehensive about being sued by a family member who wants a

different level of care provided than specified in the patient’s directive.

While this concern is largely unfounded, deviating from the directive

leaves a physician susceptible to being sued by other family members,

insurers, or other patient advocates.

Conclusions and

Recommendation

With the exception of the mailing to Social Security recipients, HHS and

most institutional providers appear to be complying with PSDA’s provisions.

Although they have not done as much as many legal and health care

experts feel they should have to educate the public about advance

directives, there is some question about the effectiveness of such

activities. First, few people have chosen to exercise this form of

self-determination in spite of public and private efforts to encourage its

use. Second, even in cases of completed advance directives, the lack of

34D.A. Asch, J. Hansen-Flaschen, and P.N. Lanken, “Decisions to Limit or Continue Life-Sustaining

Treatment by Critical Care Physicians in the United States: Conflicts Between Physicians’ Practices

and Patients’ Wishes,” American Journal of Respiratory and Critical Care Medicine, Vol. 151 (1995), pp.

288-92.

35Even philosophies of medical treatment can influence implementation of advance directives. The

Hippocratic tradition was one of the first to question ethical limits of medicine and consider when and

when not to intervene—emphasizing a balance of nature and man. In contrast, Baconian science was

intended to conquer nature. Thus Hippocratic medicine would be more amenable to withholding or

withdrawing care, while Baconian would not. See N.S. Jecker, “Knowing When to Stop: The Limits of

Medicine,” Hastings Center Report (May-June 1991), pp. 5-8.

36M.Z. Solomon, L. O’Donnell, B. Jennings, and others.

Page 16 GAO/HEHS-95-135 Advance Directives
B-257739 

appropriate discussions with physicians and health care agents about

specific preferences may diminish the documents’ effectiveness. As a

result, some experts in the field are rethinking how best to ensure that

patients’ wishes for end-of-life care are known and acted on.

Although PSDA does not impose a deadline for compliance, HHS, because of

the related costs, has not mailed information about advance directives to

Social Security recipients as required under the law. For that reason, we

recommend that the Secretary of Health and Human Services analyze

whether such a mailing would be a cost-effective way of further meeting

the needs addressed by the Congress in PSDA and, if not, seek a legislative

amendment repealing the requirement.

Agency Comments The Secretary of Health and Human Services acknowledged that not every

Social Security recipient was sent a mailing on advance directives, noting

that such a mailing could cost $4 million to $6 million. She believes,

however, that “a substantive number of activities have been undertaken to

provide such information.” For example, HCFA plans to distribute the 1996

Medicare handbook containing specific information about PSDA and

advance directives to approximately 40 million beneficiaries. While we

recognize that HHS has taken an alternative approach to providing

information to recipients, these activities are not consistent with the

legislative mandate. If HHS believes that its public education campaign

activities fully satisfy the needs addressed by the Congress in PSDA, the

Secretary should specifically seek legislative relief from the requirement to

conduct a mass mailing to Social Security beneficiaries, as we recommend.

We are sending copies of this report to the Secretary of Health and Human

Services, interested congressional committees, and others. Copies will

also be made available to others on request. If you or your staff have any

questions about this report, please call me at (202) 512-7119. Major

contributors are listed in appendix III.

Sincerely yours,

Mark V. Nadel

Associate Director,

 Health Financing and Public Health Issues

Page 17 GAO/HEHS-95-135 Advance Directives
Contents

Letter 1

Appendix I 

Sample Advance

Directive Forms

20

Appendix II 

Developments in State

Law Regarding

Advance Directives

40

Advance Directive Laws Are Widespread and Varied 40

Some Legal Issues Remain Unsettled 42

Uniform Health-Care Decisions Act Could Ease Concerns 46

Appendix III 

Major Contributors to

This Report

48

Tables Table 1: HHS/HCFA Compliance With PSDA’s Public Education

Provisions

8

Table 2: Selected Surveys of Advance Directive Awareness and

Completion Rates

10

Table II.1: Variation in Qualifying Conditions Among State

Statutes, 1995

42

Figures Figure I.1: Excerpt from the 1993 Uniform Health-Care Decisions

Act

21

Figure I.2: Medical Directive Form Developed by L.L. Emanuel

and E.J. Emanuel

27

Figure I.3: Values History Form Developed at the University of

New Mexico

34

Page 18 GAO/HEHS-95-135 Advance Directives
Contents

Abbreviations

CPR cardiopulmonary resuscitation

HCFA Health Care Financing Administration

HCPA health care power of attorney

HHS Department of Health and Human Services

ICU intensive care unit

JCAHO Joint Commission on Accreditation of Healthcare

Organizations

OIG Office of the Inspector General, HHS

PSDA Patient Self-Determination Act

UHCDA Uniform Health-Care Decisions Act

Page 19 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

Some experts and interest groups believe that a good advance directive

combines medical care instructions and a designation of a health care

agent who can “resolve apparent uncertainties.” Three samples of advance

directives are shown in this appendix. All three have sections for assigning

a health care power of attorney and personal preferences for medical

treatment, and two have a section on patient wishes about organ donation.

The instructions accompanying two of these forms state that any or all of

the sections may be completed.

Figure I.1 is the form included in the Uniform Health-Care Decisions Act of

1993. (For further discussion of the act, see app. II.) This form does not

refer to specific treatments except for artificial nutrition and hydration

and relief from pain. It does, however, provide room to list additional

preferences.

Figure I.2 is the medical directive form developed by Linda L. Emanuel

and Ezekiel J. Emanuel. The medical directive portion includes various

scenarios and treatment options; individuals indicate whether they want

specific treatments and under what conditions. The patient may also

check off a general statement for each scenario without specifying

treatments.

Figure I.3 is a values history form from the University of New Mexico. The

stated intent of the form is to assist people in thinking and writing about

what is important about their health. The first section provides an

opportunity to discuss values, wishes, and preferences about issues such

as personal relationships, overall attitude toward life, and thoughts about

illness. The second portion of the form includes sections to identify which

written legal documents have been completed and where they are located,

and to express wishes concerning specific medical procedures. The packet

also includes a copy of a New Mexico living will and a form to assign

power of attorney.

Page 20 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

Figure I.1: Excerpt From the 1993

Uniform Health-Care Decisions Act

4. Optional Form.

The following form may, but need not, be used to create an

advance health-care directive. The other sections of this [Act]

govern the effect of this or any other writing used to create an

advance health-care directive. An individual may complete or

modify all or any part of the following form:

ADVANCE HEALTH-CARE DIRECTIVE

Explanation

You have the right to give instructions about your own health

care. You also have the right to name someone else to make healthcare decisions for you. This form lets you do either or both of

these things. It also lets you express your wishes regarding

donation of organs and the designation of your primary physician.

If you use this form, you may complete or modify all or any part of

it. You are free to use a different form.

Part 1 of this form is a power of attorney for health care.

Part 1 lets you name another individual as agent to make healthcare decisions for you if you become incapable of making your own

decisions or if you want someone else to make those decisions for

you now even though you are still capable. You may also name an

alternate agent to act for you if your first choice is not willing,

able, or reasonably available to make decisions for you. Unless

related to you, your agent may not be an owner, operator, or

employee of [a residential long-term health-care institution] at

which you are receiving care.

Unless the form you sign limits the authority of your agent,

your agent may make all health-care decisions for you. This form

has a place for you to limit the authority of your agent. You need

not limit the authority of your agent if you wish to rely on your

agent for all health-care decisions that may have to be made. If

you choose not to limit the authority of your agent, your agent

will have the right to:

a) consent or refuse consent to any care, treatment, service,

or procedure to maintain, diagnose, or otherwise affect a

physical or mental condition;

b) select or discharge health-care providers and institution;

c) approve or disapprove diagnostic tests, surgical

procedures, programs of medication, and orders not to

resuscitate; and

d) direct the provision, withholding, or withdrawal of

artificial nutrition and hydration and all other forms of

health care.

Page 21 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

Part 2 of this form lets you give specific instructions about

any aspect of your health care. Choices are provided for you to

express your wishes regarding the provision, withholding, or

withdrawal of treatment to keep you alive, including the provision

of artificial nutrition and hydration, as well as the provision of

pain relief. Space is also provided for you to add to the choices

you have made or for you to write out any additional wishes.

Part 3 of this form lets you express an intention to donate

your bodily organs and tissues following your death.

Part 4 of this form lets you designate a physician to have

primary responsibility for your health care.

After completing this form, sign and date the form at the end.

It is recommended but not required that you request two other

individuals to sign as witnesses. Give a copy of the signed and

completed form to your physician, to any other health-care

providers you may have, to any health-care institution at which you

are receiving care, and to any health-care agents you have named.

You should talk to the person you have named as agent to make sure

that he or she understands your wishes and is willing to take the

responsibility.

You have the right to revoke this advance health-care

directive or replace this form at any time.

*********

PART 1 POWER OF ATTORNEY FOR HEALTH CARE

1) DESIGNATION OF AGENT: I designate the following individual

as my agent to make health-care decisions for me:

___________________________________________________________________

(name of individual you choose as agent)

___________________________________________________________________

(address) (city) (state) (zip code)

___________________________________________________________________

(home phone) (work phone)

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Appendix I 

Sample Advance Directive Forms

OPTIONAL: If I revoke my agent’s authority or if my agent is

not willing, able, or reasonably available to make a health-care

decision for me, I designate as my first alternate agent:

___________________________________________________________________

(name of individual you choose as first alternate agent)

___________________________________________________________________

(address) (city) (state) (zip code)

___________________________________________________________________

(home phone) (work phone)

OPTIONAL: If I revoke the authority of my agent and first

alternate agent or if neither is willing, able, or reasonably

available to make a health-care decision for me, I designate as my

second alternate agent:

___________________________________________________________________

(name of individual you choose as second alternate agent)

___________________________________________________________________

(address) (city) (state) (zip code)

___________________________________________________________________

(home phone) (work phone)

2) AGENT’S AUTHORITY: My agent is authorized to make all

health-care decisions for me, including decisions to provide,

withhold, or withdraw artificial nutrition and hydration and other

forms of health care to keep me alive, except as I state here:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________ (Add additional sheets if needed.)

3) WHEN AGENT’S AUTHORITY BECOMES EFFECTIVE: My agent’s

authority becomes effective when my primary physician determines

that I am unable to make my own health-care decisions unless I mark

the following box. If I mark this box [], my agent’s authority to

make health-care decisions for me takes effect immediately.

4) AGENT’S OBLIGATION: My agent shall make health-care

decisions for me in accordance with this power of attorney for

health care, any instructions I give in Part 2 of this form, and my

other wishes to the extent known to my agent. To the extent my

wishes are unknown, my agent shall make health-care decisions for

me in accordance with what my agent determines to be in my best

interest. In determining my best interest, my agent shall consider

my personal values to the extent known to my agent.

Page 23 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

5) NOMINATION OF GUARDIAN: If a guardian of my person needs

to be appointed for me by a court, I nominate the agent designated

in this form. If that agent is not willing, able, or reasonably

available to act as guardian, I nominate the alternate agents whom

I have named, in the order designated.

PART 2

INSTRUCTIONS FOR HEALTH CARE

If you are satisfied to allow your agent to determine what is

best for you in making end-of-life decisions, you need not fill out

this part of the form. If you do fill out this part of the form,

you may strike any wording you do not want.

6) END-OF-LIFE DECISIONS: I direct that my health-care

providers and others involved in my care provide, withhold, or

withdraw treatment in accordance with the choice I have marked

below:

[ ] a) Choice Not To Prolong Life

I do not want my life to be prolonged if (i) I have an

incurable and irreversible condition that will result in my death

within a relatively short time, (ii) I become unconscious and, to a

reasonable degree of medical certainty, I will not regain

consciousness, or (iii) the likely risks and burdens of treatment

would outweigh the expected benefits, OR

[ ] b) Choice To Prolong Life

I want my life to be prolonged as long as possible within the

limits of generally accepted health-care standards.

7) ARTIFICIAL NUTRITION AND HYDRATION: Artificial nutrition

and hydration must be provided, withheld, or withdrawn in

accordance with the choice I have made in paragraph (6) unless I

mark the following box. If I mark this box [ ], artificial

nutrition and hydration must be provided regardless of my condition

and regardless of the choice I have made in paragraph (6).

8) RELIEF FROM PAIN: Except as I state in the following

space, I direct that treatment for alleviation of pain or

discomfort be provided at all times, even if it hastens my death:

__________________________________________________________________

__________________________________________________________________

9) OTHER WISHES: (If you do not agree with any of the

optional choices above and wish to write your own, or if you wish

to add to the instructions you have given above, you may do so

here.) I direct that:

__________________________________________________________________

__________________________________________________________________ (Add additional sheets if needed.)

Page 24 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

PART 3

DONATION OF ORGANS AT DEATH (OPTIONAL)

10) Upon my death (mark applicable box)

[ ] a) I give any needed organs, tissues, or parts, OR

[ ] b) I give the following organs, tissues, or parts only

____________________________________________________________

[ ] c) My gift is for the following purposes (strike any of the

following you do not want)

(i) Transplant

(ii) Therapy

(iii)Research

(iv) Education

PART 4

PRIMARY PHYSICIAN (OPTIONAL)

11) I designate the following physician as my primary physician:

_________________________________________________________________

(name of physician)

___________________________________________________________________ (address) (city) (state) (zip code)

___________________________________________________________________

(phone)

OPTIONAL: If the physician I have designated above is not

willing, able, or reasonably available to act as my primary

physician, I designate the following physician as my primary

physician:

_________________________________________________________________

(name of physician)

___________________________________________________________________

(address) (city) (state) (zip code)

___________________________________________________________________

(phone)

*********

Page 25 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

12) EFFECT OF COPY: A copy of this form has the same effect as

the original.

13) SIGNATURES: Sign and date the form here:

____________________ ___________________________________________ (date) (sign your name)

____________________ ___________________________________________

(address) (print your name)

____________________

(city) (state)

Optional SIGNATURES OF WITNESSES:

First witness Second Witness

___________________________ __________________________

(print name) (print name)

___________________________ __________________________

(address) (address)

___________________________ __________________________ (city) (state) (city) (state)

___________________________ ___________________________

(signature of witness) (signature of witness)

___________________________ ___________________________

(date) (date)

Page 26 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

Figure I.2: Medical Directive Form

Developed by L.l. Emanuel and E.j.

Emanuel

Page 27 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

Figure I.3: Values History Form

Developed at the University of New

Mexico

Page 34 GAO/HEHS-95-135 Advance Directives
Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

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Appendix I 

Sample Advance Directive Forms

Page 39 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

Although the Patient Self-Determination Act (PSDA) and the U.S. Supreme

Court’s landmark right-to-die decision, Cruzan v. Director, Missouri Dept.

of Health,

37 were significant developments at the federal level, they came

well after states had begun to grapple with the legal issues related to

end-of-life decisions. State law, in fact, is generally considered the most

reliable source of guidance on advance directives. As a result, medical

personnel and others may reasonably assume that an advance directive

may only be used if a state statute permits. However, several legal experts

with whom we spoke suggested that many statutory limitations on the

scope of advance directives may be unconstitutional.

Advance Directive

Laws Are Widespread

and Varied

When PSDA was passed in November 1990, 46 states38 had laws providing a

statutory basis for some type of advance directive.39 Between 1990 and

1995, 45 states amended or enacted laws dealing with advance directives.

As of March 1995, 46 states had laws providing for both living wills and

appointments of health care agents. Of the remaining five states, two have

laws providing only for living wills and three only for appointments of

health care agents.

The requirements and application of state living will and health care agent

statutes vary significantly. Although health care agent statutes in 49 states

permit an agent to make decisions when a patient is permanently

unconscious, living will statutes in only 38 states include permanent

unconsciousness as a qualifying condition.40 (Nancy Cruzan, whose care

was at issue in the Cruzan case, was characterized not as terminally ill but

37497 U.S. 261 (1990). The Supreme Court held that individuals have a right to refuse life-sustaining

treatment, a right that may, in some circumstances, be exercised for them by another. The Court went

on to conclude, however, that states may impose procedural safeguards to ensure that another’s

exercise of that right conforms to the individual’s true wishes. For example, as was the case in Cruzan,

a state may require clear and convincing evidence before permitting the withdrawal of life-sustaining

treatment. The most reliable evidence of an individual’s wishes is a written document directly

expressing such wishes.

38In this appendix, “states” refers to the 50 states plus the District of Columbia.

39Information regarding the number of states with each type of law was provided by Choice In Dying,

which tracks and distributes information about state and federal legislation dealing with end-of life

decisions and has been instrumental in the development of such legislation.

40Many of the medical and legal experts with whom we spoke identified medical conditions other than

terminal illness, such as locked-in state and severe Alzheimer’s disease, in addition to permanent

unconsciousness, as conditions for which individuals frequently indicate they do not want

life-sustaining treatment. Locked-in state refers to a condition in which a patient may be fully aware of

his or her condition and surroundings but unable to move or respond in any way, except possibly by

coded eye movements. Because such patients presumably experience pain and can comprehend the

suffering their condition is causing others, some consider this condition more horrific than permanent

unconsciousness.

Page 40 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

as permanently unconscious.) Similarly, only about two-thirds of the states

have statutory language permitting living wills or health care agents to

withhold or withdraw artificial nutrition and hydration.41 Also, 34 states

have living will statutes that explicitly forbid the withholding or

withdrawal of life support from pregnant patients, and 14 states forbid

health care agents from making such a decision.42 Table II.1 shows the

variation among state living will and health care agent statutes.

41In Cruzan, the Supreme Court assumed that a competent person would have the right to refuse

life-saving hydration and nutrition. Yet, difficulties have been reported in connection with requests to

withhold or withdraw artificial nutrition and hydration. The consensus among experts with whom we

spoke was that when an individual’s wishes are clear, such difficulties typically arise from confusion

about the legal implications and not an actual legal impediment.

42Most legal experts with whom we spoke indicated that statutes restricting the application of advance

directives with respect to pregnant women may, depending on their specific provisions, be vulnerable

to legal challenge. For a discussion of this issue, which concludes that the Supreme Court would be

unlikely to find such restrictions unconstitutional, see Molly C. Dyke, “A Matter of Life and Death:

Pregnancy Clauses in Living Will Statutes,” Boston University Law Review, Vol. 70 (1990), p. 867.

Page 41 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

Table II.1: Variation in Qualifying

Conditions Among State Statutes,

1995

Number of statesa

Qualifying conditions

Living will

statutesb

Health care agent

statutesc

Permanent unconsciousness

Explicitly include/permit 30 22

Implicitly include/permit 8 27

Implicitly exclude 6 •

Explicitly exclude 1 •

Applicability unclear 3 •

Refusal of artificial nutrition and hydration

Explicitly permit 35 33

Forbid except in limited circumstances 1 •

Not addressed in statute 12 16

Withholding/withdrawing life support from pregnant patients

Explicitly forbid 34d 14e

Explicitly permit 3 4

Not addressed in statute 11 31

a“States” refers to the 50 states plus the District of Columbia.

bThree states (Massachusetts, Michigan, and New York) do not have living will statutes.

cTwo states (Alabama and Alaska) do not have statutes authorizing the appointment of health

care agents.

dIn 14 of these states, life support cannot be withdrawn or withheld if the fetus is viable or can

develop to the point of live birth with continued life support.

eIn five of these states, life support must be continued unless it is unlikely that the fetus will

develop to the point of live birth.

Source: Choice In Dying, March 1995.

Some Legal Issues

Remain Unsettled

Although state legislation related to end-of-life decisions is widespread,

there are legal issues that, at least in many states, remain largely unsettled:

Are advance directives written in one state valid in another? Must an

advance directive be in writing? Does a living will apply to emergency

medical services? Who makes decisions if a patient has not designated a

health care agent? Are advance directives binding on all physicians and

institutions? What about “futile” treatment or assisted suicide?

Reciprocity of Advance

Directives

Some individuals are concerned that an advance directive that complies

with the requirements of one state may not be honored in another state.

Page 42 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

Although we could not document such a problem, evidence suggests that

an advance directive should be honored in any state, regardless of where it

was originally executed. The statutes of 29 states explicitly recognize the

validity of living wills that are in accord with either laws of their own state

or another state. Similarly, 29 state statutes recognize the powers of health

care agents appointed by documents executed in other states.

Even beyond state statutes, a living will should be valid in any state

because Cruzan and a long tradition of state courts have found that the

constitutional right to refuse medical treatment is not lost upon incapacity.

Just as a competent person has the right to refuse unwanted medical

treatment in any state, an incompetent person’s previously articulated

wish should also be honored in any state. On the other hand, we are

unaware of any court that has held there is a constitutional right to

appoint a health care agent although, in her concurrence in Cruzan, Justice

O’Connor speculated that there may be such a right. Thus, an agent who

attempts to exercise authority in one of the 22 states without a reciprocity

provision in its health care agent statute is more apt to encounter some

justifiable resistance.

Validity of Oral

Instructions or

Nonconforming Advance

Directives

Courts have consistently held that a clearly and convincingly expressed

oral statement of an individual’s treatment wishes should be honored.

However, in part because PSDA defines “advance directive” to include only

written instructions, medical personnel may erroneously assume that an

incompetent individual’s previously expressed wishes must be in writing

to have legal effect.

Some states include a detailed form in their statute for use in drafting an

advance directive, which may reinforce the belief that only written

instructions are valid. However, if a patient’s clearly expressed treatment

wishes generally must be followed even if they are not in writing, it should

not matter whether written instructions follow the detailed form included

in a state law. The PSDA definition of advance directives states that the

form directives take may be specified by state statute or precedents set in

court decisions. Legal experts we consulted said that clearly expressed

treatment wishes should be honored whether or not they are in writing or

follow a statutorily prescribed format; but until clarified in statute,

confusion about the validity of oral instructions or what constitutes a valid

advance directive is apt to continue.

Page 43 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

Conflict With Emergency

Medical Service

Requirements

Another issue is the potential conflict between advance directive statutes

and laws involving the provision of emergency medical services. In an

emergency, it may not be clear that an individual has an advance directive.

Even when emergency medical technicians are presented with a valid

advance directive, they are frequently unwilling to comply unless they

have authorization specifically applicable to them because they are

generally required to administer life-saving procedures. This has resulted

in seriously ill patients being resuscitated against their stated wishes and

over the objections of their families.

To address this issue, 25 states authorize nonhospital do-not-resuscitate

orders. (Such orders, however, cover a narrower spectrum of treatments

than typical living wills.) In Virginia, for example, certain individuals may

complete a form ordering emergency medical technicians not to revive

them. In Oregon, individuals who are terminally ill or permanently

unconscious, and only those individuals, can wear bracelets saying “no

CPR” (cardiopulmonary resuscitation).

Uncertainties About

Surrogate Decision-Making

Most people believe that in the absence of a written advance directive,

their family or partner will decide their final care. As of March 1995, 25

states have statutes providing for surrogate decision-making in the

absence of an advance directive. These laws typically establish a hierarchy

of related persons (similar to the order of inheritance) who, if the patient

has not designated an individual to act as his or her health care agent, may

make health care decisions for the incompetent patient. In states with

surrogate decision-making laws, families are expected to make decisions

consistent with the patients’ wishes.

In some states, however, families have no legal right to make end-of-life

decisions unless patients have explicitly given them that right. In Cruzan,

the Court rejected the argument that the Constitution compels the state to

accept the substituted judgment of close family members and to permit

them to make medical decisions for an incompetent patient. This gives rise

to concern that in states without surrogate laws, there may be a reluctance

to rely on the guidance of family members when making end-of-life

decisions about a patient.

Concerns Related to

Conscience Exceptions

In legal terms, any provision of unwanted medical care is generally

considered to be an assault on the patient. Yet, if a physician morally

objects to the withholding or withdrawal of life-sustaining treatment from

Page 44 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

a particular patient, he or she cannot be compelled to be involved in that

patient’s care. (Such a physician cannot abandon a patient until a new

physician agrees to take over the patient’s care.) Similarly, a health care

institution may refuse to honor a living will or the decision of a health care

agent if it has established policies based on religious beliefs or moral

convictions. PSDA requires both individual providers and health care

institutions to inform patients upon admission if they cannot implement an

advance directive as a matter of conscience.

Although patients may be able to choose another physician who will honor

their advance directive, they may have little meaningful choice about what

organization will provide their medical care, especially in the event of an

emergency. Legal experts we consulted suggested that provider

organizations should be required to arrange an appropriate transfer when

they are unwilling, as a matter of conscience, to implement an individual’s

advance directive. Even so, transfers may not always be practical. Other

provider organizations may be reluctant to admit an individual for the sole

purpose of withholding life-sustaining treatment, and some communities

may have only one hospital or nursing home. At least one court has held

that when a transfer is not possible, the provider must comply with a

patient’s clearly stated wishes regarding treatment.43

Limited Conditions for

Application of Advance

Directives

Although advance directives are frequently thought of as instruments only

for facilitating the refusal of treatment, they can also be used to ensure

that individuals receive all possible treatment. Yet, a conflict may arise

when medical treatment requested in a living will or by a health care agent

is considered futile (unnecessary or of no benefit) by the provider. Medical

professionals may also disagree about when a medical treatment is truly

futile. Some states have begun to address this issue through case law or

statute. For example, Maryland’s 1993 advance directives law states that

physicians do not have to provide treatment that is “medically ineffective

or ethically inappropriate.”44

Another issue centers on states’ limiting the use of advance directives to

only incapacitated individuals who are terminally ill or in a permanent

vegetative state. Since a competent person always has the right to refuse

43Elbaum v. Grace Plaza of Great Neck, Inc., 544 N.Y.S.2d 840 (1989).

44Virginia’s statute dealing with advance directives also states that a physician need not provide

medical treatment the physician considers medically or ethically inappropriate. However, in 1994, a

federal court held that the Emergency Medical Treatment and Active Labor Act preempts the Virginia

law, and required a hospital to continue life-sustaining treatment for an anencephalic infant. In the

Matter of Baby K, 16 F.3d 590 (4th Cir.), cert. denied, 115 S. Ct. 91 (1994).

Page 45 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

treatment, some legal experts have suggested that an incompetent

individual in any medical condition should be free to refuse treatment

through living wills or health care agents.

At some point, however, the line blurs between the right to refuse

treatment and suicide, raising the issue of assisted suicide. Thirty-two

states have laws that explicitly criminalize assisted suicide and 11

criminalize assisted suicide through the common law, while in 7 states the

law concerning assisted suicide is unclear. Although a few states have

considered allowing assisted suicide, there is no clear consensus on the

issue. In 1994, Oregon became the first state to have an assisted suicide

statute that specifically allows terminally ill patients to obtain lethal

prescriptions. But this law, the result of a ballot initiative, has been

blocked until a court can rule on its constitutionality. In 1995, a federal

appeals court upheld as constitutional the state of Washington’s

prohibition on physician-assisted suicide, overturning a lower court ruling.

Uniform Health-Care

Decisions Act Could

Ease Concerns

Recognizing the benefits of more uniformity among state advance

directive laws, the National Conference of Commissioners on Uniform

State Laws45 approved the model Uniform Health-Care Decisions Act46

(UHCDA) in 1993. Although UHCDA has been adopted in only one state, New

Mexico, many states have enacted laws containing substantially similar

provisions. (According to one legal expert we spoke with, by the time

UHCDA was passed, most states already had advance directive laws that

incorporate many UHCDA provisions.) Widespread adoption of UHCDA would

not only lessen state variations discussed earlier, but could clarify a

number of unsettled legal issues, including the following:

• An advance directive that complies with UHCDA would be valid regardless

of where executed or communicated, which would ease concerns about

portability.

• The appointment of a health care agent would have to be in writing, but an

individual instruction, authorized in lieu of a living will, could be oral or

written.

45Established in 1892, the Conference has a dual identity as an organization closely affiliated with the

American Bar Association, representing the legal profession, and the original state government

association, predating the National Governors Association. The purpose of the Conference is to

provide uniform model laws for the states to enact; each state is represented by an average of six

commissioners, typically appointed by the governor.

46UHCDA supersedes earlier, less comprehensive model acts related to advance directives. A state that

has passed one of these predecessor or other laws related to advance directives would be expected to

repeal that law if enacting UHCDA.

Page 46 GAO/HEHS-95-135 Advance Directives
Appendix II 

Developments in State Law Regarding

Advance Directives

• Uncertainties about surrogate decision-making would be lessened by

establishing a hierarchy for identifying an appropriate surrogate, including

selection of a nonfamily member if no family member is available.

• Health care providers could decline to comply with a living will or other

health care decision for reasons of conscience. Organizational providers

could decline to comply only if the decision were contrary to a policy

expressly based on reasons of conscience and the policy had been

communicated in a timely fashion to the patient or person authorized to

make health care decisions for the patient.

• An individual would not have to be terminally ill or in a permanent

vegetative state for an advance directive to take effect. The authority of a

health care agent would be effective whenever an individual lacks capacity

unless otherwise specified in the instrument appointing the agent.

• Providers would not have to provide medically ineffective health care or

care contrary to generally accepted medical standards.

Page 47 GAO/HEHS-95-135 Advance Directives
Appendix III 

Major Contributors to This Report

Rosamond Katz, Assistant Director, (202) 512-7148

Anita Roth, Evaluator-in-Charge, (410) 965-8964

Craig Winslow, Senior Attorney, (202) 512-8225

(108208) Page 48 GAO/HEHS-95-135 Advance Directives
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