Patient Self-Determination Act: Providers Offer Information on Advance
Directives but Effectiveness Uncertain (Letter Report, 09/01/95,
GAO/HEHS-95-135).
Pursuant to a congressional request, GAO provided information on the
implementation of the Patient Self-Determination Act (PSDA), and the
effectiveness of advance directives in ensuring a patient's desired
care.
GAO found that: (1) health care institutions and the Department of
Health and Human Services (HHS) are generally complying with most PSDA
requirements; (2) most health care providers inform patients of their
right to have an advance directive, but fewer consistently document
whether the patient actually received an advance directive; (3) HHS has
incorporated PSDA provisions into Medicare and Medicaid provider
requirements, expanded the Medicare handbook, and engaged in a limited
public education campaign, but HHS has not informed Social Security
recipients about advance directives as required by PSDA; (4) only 10 to
25 percent of Americans have documented their end-of-life choices or
appointed a health care agent to do so; and (5) an advance directive
decision takes into consideration the availability or specificity of a
living will, family wishes, physicians' attitudes, and legal issues.
--------------------------- Indexing Terms -----------------------------
REPORTNUM: HEHS-95-135
TITLE: Patient Self-Determination Act: Providers Offer Information
on Advance Directives but Effectiveness Uncertain
DATE: 09/01/95
SUBJECT: Patient care services
Health care services
Medical records
Legal opinions
Physicians
Constitutional rights
Compliance
Information dissemination operations
IDENTIFIER: Medicare Program
Medicaid Program
**************************************************************************
* This file contains an ASCII representation of the text of a GAO *
* report. Delineations within the text indicating chapter titles, *
* headings, and bullets are preserved. Major divisions and subdivisions *
* of the text, such as Chapters, Sections, and Appendixes, are *
* identified by double and single lines. The numbers on the right end *
* of these lines indicate the position of each of the subsections in the *
* document outline. These numbers do NOT correspond with the page *
* numbers of the printed product. *
* *
* No attempt has been made to display graphic images, although figure *
* captions are reproduced. Tables are included, but may not resemble *
* those in the printed version. *
* *
* A printed copy of this report may be obtained from the GAO Document *
* Distribution Facility by calling (202) 512-6000, by faxing your *
* request to (301) 258-4066, or by writing to P.O. Box 6015, *
* Gaithersburg, MD 20884-6015. We are unable to accept electronic orders *
* for printed documents at this time. *
**************************************************************************
Cover
================================================================ COVER
Report to the Ranking Minority Member, Subcommittee on Health,
Committee on Ways and Means,
House of Representatives
August 1995
PATIENT SELF- DETERMINATION ACT -
PROVIDERS OFFER INFORMATION ON
ADVANCE DIRECTIVES BUT
EFFECTIVENESS UNCERTAIN
GAO/HEHS-95-135
Advance Directives
Abbreviations
=============================================================== ABBREV
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
Letter
=============================================================== LETTER
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 July 1995 in
accordance with generally accepted government auditing standards.
--------------------
\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.
RESULTS IN BRIEF
------------------------------------------------------------ Letter :1
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
------------------------------------------------------------ Letter :2
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.
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 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.
--------------------
\3 In re Quinlan, 355 A.2d 647, (N.J.), cert. denied, 429 U.S. 922
(1976).
\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.
\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.
INSTITUTIONAL PROVIDERS AND HHS
APPEAR TO COMPLY WITH MOST PSDA
REQUIREMENTS
------------------------------------------------------------ Letter :3
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 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
---------------------------------------------------------- Letter :3.1
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 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.
--------------------
\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."
\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."
\10 JCAHO 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.
\11 For 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.
HHS COMPLIED WITH MOST PSDA
PROVISIONS
---------------------------------------------------------- Letter :3.2
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.
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
Table 1
HHS/HCFA Compliance With PSDA's Public
Education Provisions
Requirement Implementation activities
----------------------------- -----------------------------
Develop or approve nationwide In September 1991, HCFA
informational materials to be released a technical
distributed by providers 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, HHS required each state,
associations, or other acting through a state
private entities in agency, association, or other
developing state-specific private nonprofit entity, to
documents to be distributed develop a written description
by providers of the state law (statutory
or judge-made) concerning
advance directives.
Assist state agencies, HCFA sent a letter to each
associations, or other state Medicaid director,
private entities in ensuring along with a sample public
that providers receive copies information document
of the documents suggestive of the written
information to be
disseminated by providers.
Mail information to Social HHS has not conducted a
Security recipients mailing to Social Security
recipients.
Add a page on advance HCFA inserted a section on
directives to the Medicare advance directives in the
handbook Medicare handbook.
------------------------------------------------------------
--------------------
\12 See, 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.
FEW INDIVIDUALS COMPLETE
ADVANCE DIRECTIVES
------------------------------------------------------------ Letter :4
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.
MORE PEOPLE EXPRESS INTEREST
IN ADVANCE DIRECTIVES THAN
ACTUALLY COMPLETE ONE
---------------------------------------------------------- Letter :4.1
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.
Table 2
Selected Surveys of Advance Directive
Awareness and Completion Rates
Study author Population Awareness
and date surveyed rate Completion rate
------------- ------------- ------------- ---------------
Teno and Over 3,000 Living will- Advance
others (1994) severely ill 62% directive-20%
patients HCPA-42%
HHS/OIG 1,500 patient Advance Advance
(1993) charts at directive- directive-21%
hospitals, 67%
nursing
facilities,
home health
agencies
Janofsky and 191 nursing Living will- Living will-
Rovner home 87% 18%
(1993) residents HCPA-82% HCPA-48%
Elpern and 46 Heard of Advance
others inpatients; living will directive-29%
(1993) 50 or HCPA-77%
outpatients
Daly and 116 home care Living will- Living will-
Sobal (1992) patients and 33% 5%
caregivers HCPA-60% HCPA-50%
Emanuel and 405 Advance Advance
others (1991) outpatients directive- directive-15 to
and 102 90% 18%
general
public
Cohen- 97 elderly HCPA-62% HCPA-16%
Mansfield and inpatients
others (1991)
------------------------------------------------------------
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.
--------------------
\13 Patient Advance Directives: Early Implementation Experience.
BARRIERS TO DEVELOPING
ADVANCE DIRECTIVES REMAIN
---------------------------------------------------------- Letter :4.2
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 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.
--------------------
\14 A 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.
\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.
\16 S. 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).
\17 The 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.
\18 R.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.
\19 The 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.
\20 Markson, Fanale, Steel, and others, p. 2324.
\21 If 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.
\22 A hospital official noted that the shortening of hospital stays
limits the hospital's ability to make further information available.
ADVANCE DIRECTIVES MAY HAVE
LIMITED EFFECTIVENESS
------------------------------------------------------------ Letter :5
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 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.
--------------------
\23 M. 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.
DIRECTIVES ARE OFTEN
UNAVAILABLE
---------------------------------------------------------- Letter :5.1
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.)
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
--------------------
\24 Patient Advance Directives: Early Implementation Experience.
\25 In 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.
\26 Personal communication with Dr. J.M. Teno.
DIRECTIVES OFTEN LACK
CLARITY
---------------------------------------------------------- Letter :5.2
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
--------------------
\27 E.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.
\28 J. 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.
\29 For an example of this type of form, see appendix I.
CONFLICT WITH FAMILY WISHES
---------------------------------------------------------- Letter :5.3
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.
--------------------
\30 J.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.
\31 Contrary 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.
PHYSICIAN AUTONOMY
---------------------------------------------------------- Letter :5.4
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 futility\33 without
the consent--or sometimes the knowledge--of the patient or family.
In addition, 3 percent 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
--------------------
\32 D. Orentlicher, "The Limits of Legislation," Maryland Law
Review, Vol. 53, No. 4 (1994), pp. 1281.
\33 In general, medical futility refers to treatments that will not
positively affect the patient.
\34 D.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.
ETHICAL AND LEGAL ISSUES
---------------------------------------------------------- Letter :5.5
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.
--------------------
\35 Even 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.
\36 M.Z. Solomon, L. O'Donnell, B. Jennings, and others.
CONCLUSIONS AND RECOMMENDATION
------------------------------------------------------------ Letter :6
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 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
------------------------------------------------------------ Letter :7
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.
---------------------------------------------------------- Letter :7.1
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
SAMPLE ADVANCE DIRECTIVE FORMS
=========================================================== Appendix I
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.
Figure I.1: Excerpt from the
1993 Uniform Health-Care
Decisions Act
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
Figure I.2: Medical Directive
Form Developed by L. L.
Emanuel and E.J. Emanuel
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
Figure I.3: Values History
Form Developed at the
University of New Mexico
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
(See figure in printed
edition.)
DEVELOPMENTS IN STATE LAW
REGARDING ADVANCE DIRECTIVES
========================================================== Appendix II
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.
--------------------
\37 497 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.
ADVANCE DIRECTIVE LAWS ARE
WIDESPREAD AND VARIED
-------------------------------------------------------- Appendix II:1
When PSDA was passed in November 1990, 46 states\38 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 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.
Table II.1
Variation in Qualifying Conditions Among
State Statutes, 1995
Health care
Living will agent
Qualifying conditions statutes\b statutes\c
------------------------------ ------------ ------------
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 1 --
circumstances
Not addressed in statute 12 16
Withholding/withdrawing life support from
pregnant patients
----------------------------------------------------------
Explicitly forbid 34\d 14\e
Explicitly permit 3 4
Not addressed in statute 11 31
----------------------------------------------------------
\a "States" refers to the 50 states plus the District of Columbia.
\b Three states (Massachusetts, Michigan, and New York) do not have
living will statutes.
\c Two states (Alabama and Alaska) do not have statutes authorizing
the appointment of health care agents.
\d In 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.
\e In 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.
--------------------
\38 In this appendix, "states" refers to the 50 states plus the
District of Columbia.
\39 Information 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.
\40 Many 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.
\41 In 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.
\42 Most 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.
SOME LEGAL ISSUES REMAIN
UNSETTLED
-------------------------------------------------------- Appendix II:2
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
------------------------------------------------------ Appendix II:2.1
Some individuals are concerned that an advance directive that
complies with the requirements of one state may not be honored in
another state. 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
------------------------------------------------------ Appendix II:2.2
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.
CONFLICT WITH EMERGENCY
MEDICAL SERVICE REQUIREMENTS
------------------------------------------------------ Appendix II:2.3
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
------------------------------------------------------ Appendix II:2.4
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
------------------------------------------------------ Appendix II:2.5
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 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
--------------------
\43 Elbaum v. Grace Plaza of Great Neck, Inc., 544 N.Y.S.2d 840
(1989).
LIMITED CONDITIONS FOR
APPLICATION OF ADVANCE
DIRECTIVES
------------------------------------------------------ Appendix II:2.6
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 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.
--------------------
\44 Virginia'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).
UNIFORM HEALTH-CARE DECISIONS
ACT COULD EASE CONCERNS
-------------------------------------------------------- Appendix II:3
Recognizing the benefits of more uniformity among state advance
directive laws, the National Conference of Commissioners on Uniform
State Laws\45 approved the model Uniform Health-Care Decisions Act\46
(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.
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.
--------------------
\45 Established 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.
\46 UHCDA 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.
MAJOR CONTRIBUTORS TO THIS REPORT
========================================================= Appendix III
Rosamond Katz, Assistant Director, (202) 512-7148
Anita Roth, Evaluator-in-Charge, (410) 965-8964
Craig Winslow, Senior Attorney, (202) 512-8225