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*Last Updated in 2002*
Background
Health professionals and others involved in the
lives of older adults are often faced with the problem of making
treatment decisions for patients who lack decisional capacity. AGS
has long encouraged the use of oral and written advance directives,
or the participation of traditional surrogates, such as close family
members, to aid in this process. However, many older patients who
lack decisional capacity have neither executed an advance directive
nor previously discussed their preferences regarding medical treatments.
Even when there are traditional surrogates, there may be disagreement
among parties, legal or regulatory obstacles, or other problems
that impede decision-making.
Position 1
Except in cases of obvious and complete incapacity,
an attempt should always be made to ascertain the patient's ability
to participate in the decision-making process.
Rationale
Respect for autonomous decision-making is a fundamental
ethical principle that should be adhered to whenever possible.
Decisional capacity is specific to each patient
and to each medical decision. Patients with mild cognitive impairment
may still have decisional capacity for some choices, including the
ability to designate a surrogate decision-maker. Furthermore, those
who cannot comprehend complex situations may still possess the capacity
to make simple decisions, or to convey their opinions regarding
the burdens and benefits of ongoing treatments.
Position 2
It should not be assumed that the absence of traditional
surrogates (next-of-kin) means the patient lacks an appropriate
surrogate decision-maker. A nontraditional surrogate, such as a
close friend, a live-in companion who is not married to the patient,
a neighbor, a close member of the clergy, or others who know the
patient well, may, in individual cases, be the appropriate surrogate.
Health professionals should make a conscientious effort to identify
such individuals.
Rationale
The most appropriate surrogate for the incapacitated
patient is one who has loving and intimate knowledge of the patient's
wishes or value systems. In some cases, surviving family members
have only remote knowledge of the patient's values, or are estranged,
whereas close friends or others might better represent the patient's
most fully developed value system. If such a patient has developed
other intimate relationships, there may well be an identifiable
and appropriate surrogate.
Position 3
After a conscientious effort has failed to identify
an appropriate surrogate, a group of individuals who care for the
patient may appropriately determine treatment goals and design a
humane care plan to meet those goals. This group might consist of
a multidisciplinary health care team, including physician, nurse,
nurse's aide, clergy, or others who have worked most closely with
the patient. If an institutional ethics committee has been established
to aid in decision-making, the abovementioned individuals or their
representatives should participate in any proceedings.
The standard of decision-making regarding treatment
should consider any present indications of benefits and burdens
that the patient can convey, and should be based on any knowledge
of the patient's prior articulations, cultural beliefs if they are
known, or an assessment of how a reasonable person within the patient's
community would weight the available options.
For some particularly difficult cases, such as
where motives might be in conflict, external advice or review should
be considered.
Rationale
There are patients whose backgrounds are completely
unknown, or who have never had decisional capacity and whose values
would be unknown. For such individuals, a community of health care
providers often has come to know the patient best and is best situated
to understand how to advance the patient's best interests. However,
the growth of risk contracts and other financial pressures to limit
expensive care raise the possibility that patients without surrogates
may be at risk of having treatment withheld or withdrawn too soon.
External advice or review would be most important when such potential
conflicts of interest arise.
Position 4
Patients with long-term incapacity and no surrogate
available are best served by having a continuous surrogate. The
broader community should ensure that an appropriate guardian is
appointed, or that other decision-making procedures are followed,
as established by laws of each state.
Rationale
There are many incapacitated patients, such as
those in long-term care institutions, for whom decisions about health
care will be recurrent over their remaining lifetime.
Position 5
For urgent, life-threatening situations, such
as imminent cardiopulmonary arrest, health care providers and institutions
should develop methods to make decisions for incapacitated persons
without surrogates. These methods might include allowing the attending
physician and a consulting physician to make certain choices within
established protocols subject to retrospective review.
Rationale
Resuscitation of patients with serious underlying
illness is associated with a poor outcome (1-3). Although physiologic
resuscitation can sometimes be achieved, function is not restored
or may worsen despite resuscitation, consigning the patient to a
lingering death on artificial life support. Patients should not
be forced to receive inappropriate treatment because they lack a
surrogate decision-maker.
Position 6
In order to mediate situations when surrogates
have been identified but disagree, or when surrogates with uncertain
legal standing emerge, or when a traditional and nontraditional
surrogates disagree, institutions should establish mechanisms for
intra-institutional conflict resolution, such as ethics committees.
Court proceedings should be a last resort.
Rationale
Most apparent conflicts are resolved within a
few days (15). Institutional conflict-resolving mechanisms that
seek to enhance dialogue and communication can speed and facilitate
this process. In contrast, court proceedings are divisive, expensive,
and time-consuming.
Position 7
Surrogate decision-making laws and policies should
not hinder the patient's ability to die naturally and comfortably.
Evidence from competent patients in similar circumstances should
shape the plan of care for an individual patient, in the absence
of evidence that the patient would want otherwise. This principle
should apply in all settings, including hospital, nursing home,
and the home.
Rationale
Although in the courts there is often a presumption
in favor of life prolongation in the absence of a clear advance
expression to the contrary, there is ample evidence that most people
would prefer a natural death to prolongation of dying by artificial
means (4-8). There is no evidence that the majority of people would
prefer prolonged or painful dying.
Position 8
Rigid criteria such as having a specific disease,
time-limited prognosis, or specific degree of impairment (persistent
vegetative state; "permanent unconsciousness"), or being
placed in a poorly-defined category ("terminal condition,"
"imminent death") are inadequate alone to determine whether
a surrogate should have the authority to refuse life-sustaining
treatment for a patient.
Rationale
There is often substantial uncertainty about prognosis
and the effects of treatment in serious illness (9-11). Most patients'
preferences for life-sustaining treatments are based more on projected
quality of life rather than length of life (12-14).
Position 9
In jurisdictions where laws and regulations are
cumbersome, impractical, or do not advance the widespread preferences
for natural and comfortable dying, health professionals should work
to educate legislators as to the need for change in these laws.
Laws should be based on needs and interests of the patient as he
or she might have defined them, not as the physician, the institution,
or the state would define them.
Rationale
Existing laws and pending legislation governing
surrogate decision-making are not uniform and are often unclear.
There are differences among jurisdictions as to the extent of the
surrogate's authority, the authority of nonfamily members, the permissibility
of the patient's physician to act as a surrogate in certain circumstances,
the degree of illness or disability that a patient must have in
order for the surrogate to make decisions regarding life-sustaining
treatment, and what means are to be used when limits are placed
on specific surrogates.
In addition, some jurisdictions require "clear
and convincing evidence" of the patient's previously expressed
wishes, a standard that might be interpreted to require such compelling
evidence that it is of little practical use. Decision-making standards
that depend on knowledge of the patient's wishes, whether clearly
known or merely presumed, will be insufficient for patients who
lack both an advance directive and a surrogate decision-maker, or
who have never had decisional capacity, such as those with severe
mental retardation.
REFERENCES
1. Applebaum GE, King JE, Finucane TE. The outcome
of CPR initiated in nursing homes. J Amer Geriatr Soc 1990; 38:197-200.
2. Blackhall LJ. Must we always use CPR? N Engl
J Med 1987; 317:1281-1285.
3. Taffet GE, Teasdale TA, Luchi RJ. In-hospital
cardiopulmonary resuscitation. JAMA 1988; 260: 2069-2072.
4. Gallup G, Newport F. Mirror of America: Fear
of dying. The Gallup Poll News Service 1991; 55(33): 1-6.
5. Boston Globe/Harvard School of Public Health
poll on U.S. attitudes towards death and dying:1991.
6. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson
LM, Emanuel EJ. Advance directives for medical care-- a case for
greater use. N Engl J Med 1991; 342: 889-95.
7. Danis M, Southerland LI, Garret JM, et al.
A prospective study of advance directives for life-sustaining care.
N Engl J Med 1991; 324: 882-888.
8. Finucane TE, Shumway JM, Powers RL, D'Alessandri
RM. Planning with elderly outpatients for contingencies of severe
illness: a survey and clinical trial. J Gen Intern Med 1988; 3:322-325.
9. Forster LE, Lynn J. Predicting life span for
applicants to inpatient hospice. Arch Intern Med 1988; 148: 2540-2543.
10. Pearlman RA. Variability in physician estimates
of survival in acute respiratory failure in chronic obstructive
pulmonary disease. Chest 1987; 91: 515-521.
11. Shewmon DA, DeGiorgio CM. Early prognosis
in anoxic coma. Reliability and rationale. Neurologic Clinics 1989;
7: 823-843.
12. Murphy DJ, Burrows D, Santilli S. et al. The
influence of the probability of survival on patients' preferences
regarding cardiopulmonary resuscitation. N Engl J Med 1994; 330:
545-549.
13. Schneiderman LJ, Pearlman RA, Kaplan RM, Anderson
JP, Rosenberg EM. Relationship of general advance directive instructions
to specific life-sustaining treatment preferences in patients with
serious illness. Arch Intern Med 1992; 152: 2114-2122.
14. Frankl D, Oye RK, Bellamy PE. Attitudes of
hospitalized patients toward life support: a survey of 200 medical
inpatients. Am J Med 1989; 86: 645-648.
15. Smedira NG, Evans BH, Grais LS, et al. Withholding
and withdrawal of life support from the critically ill. N Engl J
Med 1990; 322: 309-315.
Developed by the AGS Ethics Committee and approved
by the AGS Board of Directors in November 1995. Reviewed and updated
in May 1998. The American Geriatrics Society, The Empire
State Building, 350 Fifth Avenue, Suite 801, New York, NY 10118,
212-308-1414, Fax: 212-832-8646, info.amger@americangeriatrics.org.
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