Chapter 6 - Crafting Public Policy on Assisted Suicide and Euthanasia
Chapter 6 page 117
CRAFTING PUBLIC POLICY ON ASSISTED
SUICIDE AND EUTHANASIA
Modern medical advances have posed unprecedented dilemmas. The
introduction of new medical procedures such as life-sustaining treatment,
in vitro fertilization, and organ transplantation has forced us to examine
our most basic values and relationships. Often the issues are presented
in stark human terms by highly publicized cases. They are frequently
unavoidable; society must either abandon use of the technology or find its
way to some solution.
The current debate about assisted suicide and euthanasia is different
in this regard. Dr. Jack Kevorkian's machine was not a technological
breakthrough. Morphine, barbiturates, and other drugs prescribed to
assist a suicide were developed long ago and have long been employed in
medical practice for other purposes. Indeed, suicide is a practice with
ancient roots, although often achieved with messier and more painful,
nonmedical means.
Suicide, then, is not a new phenomenon, arising in the wake of medical
advances. What is new about the current debate in the United States is
the serious consideration of placing suicide and direct killing under the
stewardship of medicine in accord with policies devised and sanctioned by
the state.
The issue arises today in part because the advent of life-sustaining
treatment and other aggressive treatments to prolong life has generated
the need to make choices about the timing and manner of death. Medical
advances have also spurred public fear about losing control over the dying
process. Undoubtedly, many Americans have now cared for loved ones whose
dying was protracted by unwanted medical interventions. At the same time,
public policies about medical treatments to sustain life have promoted
patient autonomy and choice. Starting in 1976 with the landmark case of
Karen Ann Quinlan, respect for autonomy has been a critical guidepost for
court decisions and legislation about life-sustaining measures. The
personal nature of
118 WHEN DEATH IS SOUGHT
treatment choices and the emphasis on individual rights in other
spheres of public life have contributed to this trend.
In its recommendations for public policy on decisions about
life-sustaining treatment, the Task Force on Life and the Law has
consistently promoted autonomy as a fundamental principle in choices about
medical treatment. Prized in its own right for its connection to human
freedom and identity, autonomy has also been advocated by the Task Force
as a means to understand and attain the patient's best interests. In the
absence of an identified consensus about what is best for patients in
diverse medical circumstances, the patient's own values offer important
guidance. The Task Force also regards respect for the personal, moral,
and religious beliefs of each person as crucial in a pluralist, diverse
society such as ours.
Based on recommendations by the Task Force, many of New York's laws on
treatment decisions reflect this judgment. The health care proxy and
do-not-resuscitate laws seek to further the patient's wishes and best
interests, looking to guidance from the patient whenever possible.(1)
Pending legislation on treatment decisions for incapacitated patients also
relies on the patient's own wishes as the preferred benchmark for
treatment decisions.(2)
Although cherished, autonomy has never been the only value embraced by
the Task Force. Nor has it always been paramount. In devising
recommendations on organ transplantation, the Task Force considered
whether patients in need of a transplant should be allowed to place
themselves on a waiting list at more than one transplant center, thereby
giving themselves an advantage over others waiting for a scarce donated
organ. The Task Force concluded that fairness should override autonomy in
the distribution of organs, and proposed a ban on the practice of multiple
listing.(3) That ban became law in 1991, along with other policies to
promote equity of access to transplantation.(4)
Similarly, the issue of surrogate parenting called for judgments about
the scope of individual liberty when weighed against other social
concerns. Proponents of surrogacy urged that both women who wished
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(1) N.Y. Public Health Law, Article 29-C (McKinney 1993).
N.Y. Public Health Law, Article 29-B (McKinney 1993).
(2) New York State Assembly Bill No. 7166.
(3) New York State Task Force on Life and the Law, Transplantation in New York
State: The Procurement and Distribution of Organs and Tissues, 2d ed.
(New York: New York State Task Force on Life and the Law), 1989.
(4) N.Y. Public Health Law,' 4363 (McKinney 1993).
CHAPTER 6 - CRAFTING PUBLIC POLICY 119
to serve as surrogates and intended parents should be granted the
right to engage freely in the arrangements as an extension of the right to
reproduce. The Task Force disagreed, concluding that other values the
best interests of children, the prohibition against the sale of human
beings, the commercialization of reproduction, and the dignity of women -
should not be sacrificed.(5) It proposed that surrogacy contracts should be
declared void and that fees to surrogate brokers and to surrogates should
be banned. These policies now provide the basis for New York law on
surrogate parenting.(6)
Suicide is not prohibited by law in New York or in any other state in
the nation. However, assistance to commit suicide is legally barred by
New York's criminal law, while direct measures to end the patient's life,
such as a lethal injection, would constitute second-degree murder.(7)
Although some doctors, protected by a promise of confidentiality, report
that they and an uncertain number of their colleagues now provide these
alternatives to patients, their actions are not legally sanctioned.
Legalization of assisted suicide and/or euthanasia would be a profound
shift in public policy and professional standards. Nonetheless, public
support for legalizing the practices appears to be significant. This
support rests on an appeal to the two basic prongs of the argument
favoring legalization - the rights of individuals and compassion or mercy
for those who are suffering. For many individuals, the issue is best
captured by a single question: are these options they might want for
themselves at some future time? If so, many people assume that government
should support, or at least not hamper, access to medical assistance to
achieve death.
The Question of Legal Change
In the course of their deliberations, it became clear that the Task
Force members hold different views about the ethical acceptability of
assisted suicide and euthanasia. These differences persisted throughout
the many months of their inquiry and discussion. Some of the members
believe that it is always wrong for one human being to assist the suicide
of another or to take another person's life -
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(5) New York State Task Force on Life and the Law, Surrogate Parenting:
Analysis and Recommendation. for Public Policy (New York: New York State
Task Force on Life and the Law, 1988).
(6) N.Y. Domestic Relations Law, Article 8 (McKinney 1993).
(7) For a discussion of New York law on assisted suicide and euthanasia,
see chapter 4.
120 WHEN DEATH IS SOUGHT
they regard both actions as a violation of principles fundamental to our
social fabric and to the medical profession.(8) Other members believe that
assisted suicide is ethically acceptable in certain cases, although they
consider the circumstances that would justify the practice as rare. A few
members believe that euthanasia might also be ethically acceptable in
even more exceptional circumstances. Despite these differences about the
underlying ethical questions, the Task Force members unanimously recommend
that existing law should not be changed to permit assisted suicide or
euthanasia. Legalizing assisted suicide and euthanasia would pose profound
risks to many individuals who are ill and vulnerable. The Task Force members
concluded that the potential dangers of this dramatic change in public policy
would outweigh any benefit that might be achieved.
The risk of harm is greatest for the many individuals in our society
whose autonomy and well-being are already compromised by poverty, lack of
access to good medical care, advanced age, or membership in a stigmatized
social group. The risks of legalizing assisted suicide and euthanasia for
these individuals, in a health care system and society that cannot
effectively protect against the impact of inadequate resources and
ingrained social disadvantages, would be extraordinary.
For purposes of public debate, one can posit "ideal" cases in which
all the recommended safeguards would be satisfied: patients would be
screened for depression and offered treatment, effective pain medication
would be available, and all patients would have a supportive, committed
family and doctor. Yet the reality of existing medical practice in
doctors' offices and hospitals across the state generally cannot match
these expectations, however any guidelines or safeguards might be framed.
These realities render legislation to legalize assisted suicide and
euthanasia vulnerable to error and abuse for all members of society, not
only for those who are disadvantaged. The argument for mercy or
compassion then is complex. Constructing an ideal or "good" case is not
sufficient for public policy, if it bears little relation to prevalent
medical practice.
The appeal to autonomy is also far more complex in practice. From the
perspective of good health, many individuals may believe that they would
opt for suicide or euthanasia rather than endure a vastly diminished
quality of life. Yet, once patients are confronted by illness, continued
life often becomes more precious; it is not so readily discarded. Given
access to appropriate relief from pain and other
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(8) These members would, however, recognize the legitimacy of killing in
certain well-identified exceptions such as self-defense or as a
participant in a just war.
CHAPTER 6 - CRAFTING PUBLIC POLICY 121
debilitating symptoms, many of those who consider suicide during the
course of a terminal illness abandon their desire for a quicker death in
favor of a longer life made more tolerable with effective treatment.
Undoubtedly, the desire for "control" at life's end is widely shared
and deeply felt. Yet, as a society, we have better ways to give people
greater control and relief from suffering than by making it easier for
patients to commit suicide or to obtain a lethal injection. In
particular, we must help patients and their families realize the
opportunity to refuse life-sustaining measures in accord with policies
that are humane and thoughtful. We must also make good pain relief and
palliative care standard, not exceptional, treatment for all patients. In
Chapter Eight the Task Force presents specific recommendations to achieve
these goals.
Evaluating the Risks
Pressure and Persuasion
Physicians who provide suicide assistance or euthanasia despite
existing legal prohibitions report that they do so in response to repeated
requests for help from patients. The request, and the ensuing dialogue
with the physician, are patient-initiated. This will change if assisted
suicide and euthanasia are legalized. Both practices would become options
in the panoply of alternatives that physicians offer their patients. As
with other "treatments," judgments about when and for whom assisted
suicide and euthanasia are provided would be managed principally by
physicians, not their patients. While we advocate patient autonomy and
accept something far short of this ideal for other treatments, the
consequences of doing so for assisted suicide and euthanasia are too severe.
Illness is a quintessential state of vulnerability; it entails a loss
of confidence in one's body and one's future. Serious illness also brings
with it a loss of physical freedom and the ability to engage in the
activities by which we define ourselves. Patients bring this
vulnerability to their relationship with physicians. Physicians in turn
hold the knowledge and expertise patients may desperately need, adding to
the profound dependence that characterizes the doctor patient relationship.
This dependence is manifested in many aspects of the doctor patient
relationship. Patients turn to their doctors for information about their
diagnosis and prognosis, the likely symptoms of illness, and treatment
alternatives. Through their tone, the encouragement they
122 WHEN DEATH IS SOUGHT
provide or withhold, and the way they present the information available,
physicians can often determine the patient's choice. A 25 percent chance
of survival, with good supportive care, sounds quite different from a 75
percent chance of failure, with significant disability and pain.
For all medical treatments, ranging from simple procedures such as
blood tests to surgical procedures and treatments such as chemotherapy,
physicians also decide which patients are candidates for the treatment.
If assisted suicide and euthanasia were accepted as "therapy," physicians
would make a medical judgment about which patients are "good" candidates
for the practices. Physicians would also do what is routinely called for
in good medical practice - they would make a recommendation. Even
assuming that all physicians would act in good faith, never attempting to
pressure their patients to commit suicide or to accept euthanasia,
physicians' recommendations would be a powerful factor in their
patients' choices. Indeed, patients generally do what their doctors
recommends
Once the physician suggests assisted suicide or euthanasia, some
patients will feel that they have few, if any, alternatives but to accept
the recommendation. Most patients are unaware of the options to relieve
pain and minimize symptoms. Even those who are more sophisticated about
the options for continued care may fear that if they embrace the decision
to live, they will do so without the medical support and care needed to
make that decision tolerable. In an outpatient setting, patients can
change physicians, although not all feel empowered to do so. For hospital
patients, this option is harder to attain and more remote.
It is also significant that "neutrality" about the course of treatment
is neither encouraged nor prevalent in medical practice. Physicians
generally seek to persuade patients to accept treatment they have
recommended." Physicians do so out of a sense of benevolence and
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(9) This dependence gives rise to some of the same concerns for decisions
about life-sustaining treatment. However, as discussed below,
decisions to forgo treatment are an integral part of medical practice.
The risks and benefits of these decisions lead to a different
assessment for public policy.
(10) As described in the conclusion of a major study of informed consent,
"In addition to making a recommendation, the doctor's self-perceived
role is to get the patient to go along with this recommendation if
there is any hesitancy on the patient's part. This is done by some
explanation about the need for the recommended treatment and the
consequences of not heeding the recommendation. But in the doctor's
view there is no decision for the patient to make, except whether or
not to get proper medical care." C. W. Lida and A. Meisel, "Informed
Consent and the Structure of Medical Care," in President's Commission
for the Study of Ethical Problems in Medicine and Biomedical and
Behavioral Research, Making Health Care Decisions (Washington D. C.:
U.S. Government Printing Office, 1982), vol. 2, p. 400.
CHAPTER 6 - CRAFTING PUBLIC POLICY 123
confidence in their own judgments; they often believe that they know what
is best for their patients. Yet, physicians' judgments about the value of
continued life for the patient will be shaped by the physician's own
attitudes about illness, physical dependence, pain, and disability. The
patient's social and personal circumstances will also influence how some
physicians respond to the patient and to the value of continued life for
the patient.(11) Moreover, in some cases, offering assisted suicide and
euthanasia may reflect physicians' own frustration in situations when
medicine can provide only care but not cure.
Physicians are also increasingly aware of and subject to pressures
generated by the need to control costs. Limits on hospital reimbursement
based on length of stay and diagnostic group, falling hospital revenues,
and the social need to allocate health dollars may all influence
physicians' decisions at the bedside. In many respects, physicians serve
as gatekeepers in medical practice. Risk managers, administrators, and
third-party payers also now have a less visible, but still significant
role in treatment decisions. The growing concern about health care costs
will not be diminished by health care reform. Under any new system of
health care delivery, as at present, it will be far less costly to give a
lethal injection than to care for a patient throughout the dying
process. (12)
The current debate about medical futility reflects, in part, the
extent to which the cost of treatment is viewed as relevant to decisions
at the bedside. Some physicians have argued that they should determine
when the benefits of treatment are too low to justify the cost in order to
allocate health care resources. To date, the futility debate has focused
on certain aggressive treatments, such as cardiopulmonary resuscitation,
or on continued treatment for certain patients, such as those who are
permanently unconscious. But once a decision is made not to pursue cure
or treatment, and assisted suicide and euthanasia are available, the
economic logic will be inescapable. The care provided to dying or very
ill patients, not just their treatment, is
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(11) Several studies have demonstrated that factors independent of clinical
considerations, including race, economic status, and age, affect
physicians'judgments about the course of treatment. See p.125, n. 14.
(12) 6.6% of Medicare beneficiaries who died in 1990 accounted for
21.5% of all medicare expenditures. Health Care Financing Review,
1992 Annual Supplement (Baltimore: U.S. Department of Health and Human
Services, Health Care Financing Administration, office of Research
and Demonstrations, 1993), 34.
124 WHEN DEATH IS SOUGHT
expensive and demanding for health care professionals. The extra weeks or
months of caring for patients who do not opt for assisted suicide or
euthanasia will seem all the more "futile" and costly.
Nor will the commitment to care or treat remain unaffected by the
existence of a neat, fast solution to medicine's hardest or least
satisfying cases. Physicians who determine that a patient is a suitable
candidate for assisted suicide or euthanasia may be far less inclined to
present treatment alternatives, especially if the treatment requires
intensive efforts by health care professionals. Nurses, social workers,
and other health care professionals, crucial to the emotional support and
day-to-day care of patients, may also be more likely to experience the
survival of some patients - and their refusal to die more quickly - as a
heavier burden.
Care and support for terminally and chronically ill patients also
impose serious burdens on family members and other caregivers. The
burdens are both financial and emotional. Family members may be drained
by these demands or may conclude, based on their own perspective, that the
patient's life is no longer worth living. Out of this benevolence, or
from sheer frustration or exhaustion, family members may suggest or
encourage the patient to accept assisted suicide or euthanasia. Motivated
by a sense of guilt or abandonment, many patients will feel that they have
no choice once the option is presented. Indeed, if assisted suicide and
euthanasia are widely available, patients may feel obligated to consider
these options to alleviate the burden their illness and continued life
imposes on those closest to them.
These subtle but potentially pervasive changes will have the most
significant impact on certain groups of patients - patients most likely to
be considered "hopeless," such as those with acquired immunodeficiency
syndrome (AIDS); patients who pose a risk to health care providers and
family members, including those with multidrugresistant tuberculosis; or
patients who are least compliant, such as those who are mentally ill or
drug addicted. Some health care professionals already regard caring for
these patients as a special burden. Given the overall life circumstances
of some of these patients, both health care professionals and family
members may find it easy to rationalize that euthanasia or assisted
suicide would be in these
CHAPTER 6 - CRAFTING PUBLIC POLICY 125
patients' best interests.(13) Establishing a quick, painless death as a
state-sanctioned option may also mean that society becomes less committed
to creating ways for patients, especially those who are socially
disadvantaged, to live longer and better.
Finally, it must be recognized that assisted suicide and euthanasia
will be practiced through the prism of social inequality and prejudice
that characterizes the delivery of services in all segments of society,
including health care. Those who will be most vulnerable to abuse, error,
or indifference are the poor, minorities, and those who are least
educated and least empowered. This risk does not reflect a judgment that
physicians are more prejudiced or influenced by race and class than the
rest of society - only that they are not exempt from the prejudices
manifest in other areas of our collective life.(14)
While our society aspires to eradicate discrimination and the most
punishing effects of poverty in employment practices, housing, education,
and law enforcement, we consistently fall short of our goals. The costs
of this failure with assisted suicide and euthanasia would be extreme.
Nor is there any reason to believe that the practices, whatever safeguards
are erected, will be unaffected by the broader social and medical context
in which they will be operating. This assumption is naive and
unsupportable.
Even our system for administering the death penalty, which includes
the stringent safeguards of due process and years of judicial scrutiny,
has not been freed of error or prejudice. For example, blacks who kill
whites are sentenced to death at nearly 22 times the rate of blacks who
kill blacks and more than seven times the rate of whites who kill
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(13) As Leon Kass has argued, the option of suicide or euthanasia
NAII influence physicians profoundly. "How easily will they be
able to care for patients when it is always possible to think of
killing them as a 'therapeutic' option? ... Physicians get tired
of treating patients who are on their way down - 'gorks,' 'gomers,'
and 'vegetables' - are only some of the less than affectionate
names they receive from house officers. Leon Kass, "Why Doctors
Must Not Kill," Commonweal 118, no. 14, suppl. (1991): 473.
(14) Studies have found that some physicians make treatment decisions
based on criteria that are independent of the patient's medical
needs, including age, race, and mental disability. Other studies
have found broad patterns of inequality in access to treatment
See, e.g., N. J. Farber et al., "Cardiopulmonary Resuscitation
(CPR) Patient Factors and Decision Making," Archives of Internal
Medicine 144 (1984): 2229-32; R. M. Wachter et al., "Decisions
About Resuscitation: Inequities Among Patients with Different
Diseases but Similar Prognoses," Annals of Internal Medicine 111
(1989): 525-32; American Medical Association, Council on Ethical
and Judicial Affairs, "Black-white Disparitics in Health Care,"
Journal of the American Medical Association 263 (1990): 2344-46.
126 WHEN DEATH IS SOUGHT
blacks.(15) Euthanasia is not a death sentence - it is not imposed on
an individual by the state but administered with consent. The process for
obtaining consent, however, will be blanketed in the privacy of the
doctor-patient relationship. In that relationship, blatant prejudice may
not be prevalent, but the more subtle biases that operate in our health
care system will shape the consent process and the decisions made by
patients.(16)
The Fallibility of Medical Practice
Diagnosing and Treating Depression. All proposals for assisted
suicide and euthanasia implicitly assume or explicitly require the
patient's primary physician to determine whether the patient has capacity
to make an informed decision. For other medical decisions, this
requirement has been interpreted to mean that the patient is capable of
understanding and appreciating the risks and benefits of the proposed
treatment, assessing the alternatives, and reaching an informed judgment.
The notion of competence to make treatment decisions, or the capacity to
make a particular decision, also presumes that the patient is not
clinically depressed. Depression can impair a patient's ability to
understand information, to weigh alternatives, and to make a judgment that
is stable over time and consistent with the patient's values.
Depression accompanied by feelings of hopelessness is the strongest
predictor of suicide for both individuals who are terminally ill and those
who are not. Studies that have examined the psychological profile of
individuals who commit suicide indicate that more than 95 percent had a
major psychiatric illness at the time of death. Significantly, the
majority of individuals who kill themselves suffer from depression that is
treatable with appropriate clinical care.(17) Among terminally and
incurably ill patients, uncontrolled pain is also an important risk factor
for suicide because it contributes to hopelessness and depression.
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(15) McKlesky v. Kemp, 481 U.S. 279, 327 (1987) (Brennan, J.,
dissenting). As Justice Blackmun recently observed, "It should
not be surprising that the biases and prejudices that infect
society generally would influence the determination of who is
sentenced to death, even within the narrower pool of death-eligible
defendants selected according to objective standards." Collins v.
Collins, 62 U.S.L.W. 3546, 3549 (1994) (Blackmun, J., dissenting
from denial of certiorari).
(16) See discussion of racial disparities in health care delivery,
p.125, n. 14.
(17) See discussion of suicide and depression in chapter 1.
CHAPTER 6 - CRAFTING PUBLIC POLICY 127
Theoretically, contact with a physician or other health care
professional provides the opportunity to screen patients for depression
and offer appropriate treatment. In practice, however, this kind of
screening and the subsequent offer of effective treatment are not standard
care. Most doctors are not adequately trained to diagnose depression,
especially in complex cases such as patients who are terminally ill. When
an assessment is performed, the medical illness may obscure indicia of
depression, rendering the diagnosis difficult. Even if diagnosed,
undertreatment for depression is pervasive. In elderly patients as well
as the terminally and chronically ill - those groups who would be the
likeliest candidates for assisted suicide and euthanasia depression is
grossly underdiagnosed and undertreated.
If assisted suicide and euthanasia are legalized, internists, family
physicians, geriatricians, and specialists in certain fields such as
oncology would be most likely to receive requests by patients or to
initiate discussion about assisted suicide and euthanasia. They would be
responsible for screening patients for eligibility, including an
assessment of decision-making capacity. Physicians in these areas of
practice rarely have extensive training in treating or diagnosing
depression.
Too often, clinicians fail to detect treatable depression or other
psychiatric illness, assuming that the depression is expected or beyond
treatment.(18) Frequently in the elderly, the symptoms of depression, such
as loss of appetite and disrupted sleeping patterns, are mistaken for signs
of old age, dementia, or a response to life in a nursing home. One study
found that depression was diagnosed in only 15 percent of the depressed
elderly, and was treated in only 25 percent of those cases. Another found
that 75 percent of elderly patients who committed suicide had seen a
primary care physician during the month before dying, but their
psychiatric disturbances had been largely undetected.(19)
Even psychologists and psychiatrists who routinely treat and diagnose
depression may have limited experience doing so for patients who
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(18) As two geriatric psychiatrists recently noted in the New England
Journal of Medicine, "Furthermore, research and our clinical
work have made it clear to us that many doctors on the front
lines, who would be responsible for implementing any policy that
allowed assisted suicide, are ill equipped to assess the presence
and effect of depressive illness in older patients. In the
absence of that sophisticated understanding, the determination
of a suicidal person's 'rationality' can be no more than
speculation, subject to the influence of personal biases about
aging, old age, and the psychological effects of chronic
disease." 'Y. Conwell and E. D. Caine, "Rational Suicide and
the Right to Die,"New England Journal of Medicine 325 (1991): 1101.
(19) See discussion in Chapter 1.
128 WHEN DEATH IS SOUGHT
are terminally or chronically ill. For these patients, clinicians
must be able to distinguish the realistic sadness and sense of loss that
accompanies such illness from severe clinical depression or the
psychiatric disorders that impair decision-making capacity. These
disorders are prevalent in those patients who ultimately choose to commit
or attempt suicide.
The presence of unrelieved pain also increases susceptibility to
suicide. The experience of pain is closely linked to physical disability,
depression, and feelings of hopelessness. Depression and anxiety in turn
often augment the patient's experience of pain.(20) The widespread
undertreatment of pain in current clinical practice therefore has
farreaching implications for the depression experienced by terminally and
incurably ill patients, as well as for the choices they make about
assisted suicide and euthanasia. As shown by studies of cancer and AIDS
patients, the interplay of physical pain, depression, and suicide is
complex. Undeniably, however, the failure to relieve physical pain
creates vulnerability to depression and despair, both of which predispose
patients to consider or to commit suicide. (21)
This problem is well-illustrated by a recent reported case involving a
70-year-old woman suffering from rheumatoid arthritis. On a video she
sent to Jack Kevorkian seeking his help to end her life, she stated, "I'm
in total despair because the pain cannot be controlled. I would like an
out." As reported by Kevorkian's lawyer, her doctor offered her a
morphine patch only after Kevorkian made clear that he might help her to
die. Kevorkian in turn did not offer her pain relief, but assistance to
commit suicide. (22)
Exploring the Meaning of Suicide. Many patients who are terminally or
severely ill have suicidal ideation. When patients express suicidal
thoughts to their physician, it may be a plea for help, a statement of
their despair, or a search for guidance. The discussion itself can often
be therapeutic, helping the patient feel less isolated or frightened. A
physician's response, including the offer of pain relief, referral for
psychiatric care, social work counseling to address family tension,
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(20) Ibid.
(21) The failure to relieve pain may influence health care
professionals' judgment as well as the patient's. A recent study
showed that lack of of knowledge about pain relief correlated with
the willingness to endorse assisted suicide. R. K. Portenoy et al.,
"Determirants of the Willingness study, 1994.
(22) G. Golightly, "Pain Specialist Offers to Aid Kevorkian Client,"
Houston Chronicle, March 31,1994, A16.
CHAPTER 6 - CRAFTING PUBLIC POLICY 129
reassurance that the patient is not an undue burden on others, or
palliative care to alleviate other symptoms, including depression, often
diminishes or removes the desire for suicide. Each of these steps can
lessen a patient's sense of helplessness, a critical factor of both
depression and suicidal ideation.(23)
Few patients who express suicidal ideation actually commit suicide.
Indeed, patients often prove remarkably resilient. Although some
individuals speak about suicide when they first learn of their diagnosis,
they adjust to their situation, even as their medical condition
deteriorates. This phenomenon is often observed with AIDS patients and
others suffering from terminal illness. Given time, many patients, even
the most severely ill, adapt to their circumstances if they have
sufficient support and care.
Just as a physician's response can forestall or prevent suicide, a
physician's ready acceptance of the patient's decision to accept suicide
or euthanasia can encourage that outcome. If the physician quickly
accepts the patient's choice, the patient may feel abandoned. The
physician's acceptance may also contribute to a sense of hopelessness or
to feelings of guilt about burdening family and care givers. For this
reason, those who advocate allowing assisted suicide or euthanasia
recognize the importance of the patient-physician relationship and
dialogue. They urge that physicians must carefully consider all other
alternatives, and offer available palliative care and social support.
They call for a dialogue in which the physician seeks to understand the
meaning of the request for each patient and responds with care and
concern, ultimately accepting but not encouraging the patient's decision
to opt for suicide or euthanasia.
This dialogue requires commitment and compassion. The physician must
listen attentively to the patient, engaging in an intensely personal
exploration of the patient's feelings, of his or her relationship with
others, and of the reasons why the patient has made this choice. It is a
demanding and time-consuming process. In short, the qualities needed for
this sensitive discussion are an ideal for medical practice and the
physician-patient relationship. This ideal, if ever the norm, is less and
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(23) As Edwin Shneidman observed, "What we fear is something worse than
what we have. Oftentimes, persons literally on the ledge of
committing suicide would be willing to live if things, life, were
only just a little bit better, a just noticeable difference more
tolerable. The common fear is that the Inferno is bottomless and
that the line on internal suffering must be drawn somewhere. Every
suicide makes this statement: This far and no further - even though
he would have been willing to live on the brink." E. S. Shneidman,
"Some Essentials of Suicide and Some Implications for Response,"
(Baltimore: Williams and Wilkins, 1986), 4.
130 WHEN DEATH IS SOUGHT
less common in an age of high-tech medicine. In fact, the dearth of
such qualities in medical practice - the willingness to listen, the
openness to exploring the patient's wishes and feelings about treatment,
and the ability to talk sensitively about dying - has contributed
substantially to problems in making decisions about life-sustaining
treatment.
Timothy Quill's article in the New England Journal of Medicine about
how he assisted his patient to die caused such a stir in part because many
believed that he presented all the "right" ingredients a sensitive doctor
with a long-standing relationship with his patient, efforts to persuade
her to accept treatment, familiarity with her past struggles and her
present reality, the ability to listen, and a firm belief in its
importance as part of his duty to his patient.(24) One "good" case, however,
is not a sufficient basis for public policy. Any law permitting assisted
suicide and euthanasia will authorize doctors like Kevorkian as well as
those like Quill to assist or cause their patients' deaths. While
25
the shortcomings of Kevorkian's methods are glaring, the problems
generated by the practice in the hands of other doctors will be less
obvious and more pervasive - doctors who are caring but harried, those who
are uncomfortable talking about dying, those unable to distinguish their
views from the values and needs of their patients, and those who are not
ill-intentioned but perhaps indifferent to the fate of some patients with
whom they have had little contact and for whom they hold no hope for
recovery.(26)
Like the availability of pain relief or the skills needed to diagnose
depression, the kind of doctor- patient relationship envisioned by those
who advocate legalizing suicide will simply be unavailable to many
---------------------------------------------------------------------------
(24) T. E. Quill, "Death and Dignity: A Case of Individualized Decision
Making," New England Journal of Medicine 324 (1991)-. 691-94. Even in
this case, many have challenged the ethical and clinical acceptability
of Dr. Quill's actions. See e.g., P. Wesley, "Dying Safely," Issues
in Law and Medicine 8 (1993): 467-85; E. D. Pellegrino, "Compassion
Needs Reason Too," Journal of the American Medical Association
270 (1993): 874-75.
(25) Kevorkian appears to have had little, if any, prior relationship
with the 20 individuals whose deaths he assisted. Nor does it
appear from public accounts that he counseled them about treatment
alternatives, conducted an in-depth psychological evaluation, or
offered palliative care. Indeed, as a retired pathologist, it is
unlikely that he has any experience in treating patients who are
depressed or chronically or terminally ill.
(26) In this regard, it is notable that a recent study found that
"burn-out" among health care professionals correlated strongly
with the willingness to endorse assisted suicide. Portenoy et al.
CHAPTER 6 - CRAFTING PUBLIC POLICY 131
patients.(27) Public policy cannot be predicated on an ideal when the
reality will often be quite different, with serious, irreversible
consequences for patients.
Prognosticating at Life's End. One cornerstone of good medical
practice is an accurate diagnosis and prognosis for the patient. In many
cases, prognostication at the end of life is highly uncertain, even in the
hands of the best clinicians. Some diagnoses are clear cut. Many others
are not. Once the diagnosis is made, estimating the patient's life
expectancy is typically more art than science. It is neither precise nor
entirely predictable.
The patient's diagnosis, his or her life expectancy, and the outcome
of treatment will be critical to all patients as they consider the option
of an immediate death. Euthanasia and assisted suicide leave no
opportunity to recognize or correct a diagnosis that is negligently
provided, or provided competently, but proves incorrect over time. In
contrast, when life-sustaining treatment is withdrawn or withheld, certain
death does not follow if the underlying diagnosis is mistaken. Moreover,
assisted suicide and euthanasia could be used for patients without an
immediate life- threatening condition, including those who may have many
more years of life ahead.
Overall, the risk of misdiagnosis of the patient's medical or
psychiatric condition, the undertreatment of pain, and the risks of abuse
must be weighed in relation to their consequences. With assisted suicide
and euthanasia, the result will be the patient's death. How many
instances of error or abuse render the risk unjustifiable in light of
these consequences? The number of such errors or cases of abuse cannot be
quantified. But given the state of the art of diagnosing and treating
depression, as well as the inherent fallibility of medicine, such cases
will not be rare. Taken together, the risk and the consequences yield a
remarkably high price in human life for policies allowing assisted suicide
and euthanasia.
An Option Without Limits
The prohibition against assisted suicide and euthanasia carries
intense symbolic and practical significance. While suicide is no longer
prohibited or penalized, the ban against assisted suicide and euthanasia
shores up the notion of limits in human relationships. It reflects the
gravity with which we view the decision to take one's own
----------------------------------------------------------------------------
(27) For further discussion of the practical problems of proposed guidelines
or safeguards, see pp. 142-45.
132 WHEN DEATH IS SOUGHT
life or the life of another, and our reluctance to encourage or
promote these decisions.
If assisted suicide and euthanasia are legalized, it will reflect
changed attitudes about the practices. Just as significant, it will
prompt further change. Social attitudes will evolve in part because our
laws convey acceptance and sanction. More far reaching will be the shift
in attitude as assisted suicide or direct killing become more frequent and
more widely practiced. If the practices become a standard part of the
arsenal of medical treatments, it would profoundly affect our response to
those cases that are sanctioned and to those that are not. The momentous
nature of the actions, and the sense of caution or gravity with which they
are pursued, would naturally lessen for both health care professionals and
for the public. By legalizing the practices, we will blunt our moral
sensibilities and perceptions.
Once assisted suicide and euthanasia are integrated into medical
practice, the criteria now proposed as safeguards will prove elastic and
unstable. One important criterion now rests on compassion for those who
are suffering. But pain, and to a greater extent suffering, are
inherently subjective. The experience of physical pain and the degree of
suffering it causes depend on psychological and other personal factors.
If policies on assisted suicide or euthanasia do not make the practices
universally available at the request of any competent adult, the policies
must define the class of eligible individuals.
Most proposals to legalize assisted suicide have rejected terminal
illness as the dividing line because it would not respond to many
circumstances that can cause the same degree or pain and suffering. Yet
as long as the policies hinge on notions of pain or suffering they are
uncontainable; neither pain nor suffering can be gauged objectively or
subjected to the kind of judgments needed to fashion coherent public
policy. Moreover, even if the more narrow category of terminal illness is
chosen at the outset, the line is unlikely to hold for the very reason
that it has not been selected by advocates of assisted suicide - the logic
of suicide as a compassionate choice for patients who are in pain or
suffering suggests no such limit.(28)
---------------------------------------------------------------------------
(28) While euthanasia and assisted suicide were originally proposed in
the Netherlands as options for patients suffering from an incurable
disease, a recent court decision approved the use of these practices
for a suicidal patient suffering from depression but not any
underlying physical illness, In that case, a psychiatrist assisted
in the suicide of a physically healthy 50-year-old woman who was
depressed following the loss of her two sons and recent divorce.
W. Drozdiak, "Dutch Seek Freer Mercy Killing: Court Case Could
East Limits on Assisted Suicide, Euthanasia," Washington Post,
October 29, 1993, A 29.
CHAPTER 6 - CRAFTING PUBLIC POLICY 133
Nor does the emphasis on autonomy in current debates provide an
enduring or effective restraint, although to date the proposals to
legalize euthanasia would allow euthanasia based solely on the consent of
a competent adult. For many physicians, as well as for the public,
patients incapable of consenting will, in certain respects, seem the
"best" candidates for the practice - patients who are permanently
unconscious, severely demented, or otherwise incapacitated. Once
euthanasia becomes an accepted "therapy," the expansion to include those
who are incapable of consenting would be a logical, if not inevitable,
progression.
Even if the law is never changed to sanction involuntary euthanasia,
the potential for abuse would be profound. This risk does not presume
that physicians will act malevolently. On the contrary, this risk is
substantial precisely because physicians will act with benevolent motives.
Once euthanasia is established as a "therapeutic" alternative, the line
between patients competent to consent and those who are not will seem
arbitrary to some doctors. To others, it will seem outright
discriminatory or unjust to deny a therapy because of the patient's
incapacity to consent.(29) As with other medical decisions, some doctors
will feel that they can and should make a decision in their patient's best
interests, for patients clearly incapable of consenting and for those with
marginal or uncertain capacity to consent.(30)
Experience in the Netherlands suggests that this type of abuse or
expansion, resulting in nonvoluntary euthanasia, would be significant.
Since 1984, guidelines have tacitly allowed euthanasia in response to a
repeated and voluntary request from a suffering, competent patient.
Although nonvoluntary euthanasia performed without the patient's request
is prohibited, nonvoluntary euthanasia has been conducted in a substantial
number of cases. The most extensive study of euthanasia
---------------------------------------------------------------------------
(29) As described by one Dutch physician who consented to euthanasia for
his severely impaired newborn son, "I concur that autonomy ought
to be the point of departure in euthanasia decisions, but it should
not be the only principle considered. Because newborns cannot
exercise autonomy does not mean that they should be denied
beneficence. There are many less important decisions we make in
their behalf, why should they be denied perhaps the most
caring choice of all?" C. Spreeuwenberg, "The Story of Laurens,"
Cambridge Quarterly 2 (1993): A261-63.
(30) The much publicized article "It's Over, Debbie" that appeared
anonymously in the Journal of the American Medical Association
illustrates this point well. In that case, the physician had no
prior relationship with the patient and no knowledge of her
capacity to consent to euthanasia. He decided that she was
suffering and responded to her mumbled words "Let's get this
over with," by returning to her room several minutes later and
giving her a lethal dose of morphine. "It's Over, Debbie,"
Journal of the American Medical Association 259 (1988): 272.
134 WHEN DEATH IS SOUGHT
in the Netherlands reported that in 1990 approximately 1.8 percent of
all deaths resulted from voluntary euthanasia. An additional 0.8 percent
of all deaths represented euthanasia performed without a contemporaneous
request from the patient.(31) If euthanasia were practiced in a comparable
percentage of cases in the United States, voluntary euthanasia would
account for about 36,000 deaths each year, and euthanasia without the
patient's consent would occur in an additional 16,000 deaths.
The Task Force members regard this risk as unacceptable. They also
believe that the risk of such abuse is neither speculative nor distant,
but an inevitable byproduct of the transition from policy to practice in
the diverse circumstances in which the practices would be employed.
The Alternatives for Public Policy
Support for legalizing assisted suicide and euthanasia rests in part
on the belief that individuals should have the right to assistance to end
their lives at a time and in a manner they choose. None of the Task Force
members believes that respect for autonomy dictates the legalization of
assisted suicide and euthanasia. The moral claim to autonomy is weakened
by both the overall risks of the practice and the extraordinary nature of
the remedy sought. Moreover, if assisted suicide and euthanasia are
legalized, the autonomy of some patients would be extended while the
autonomy of others would be compromised by the pressures to exercise these
new options.
The legalization of assisted suicide and euthanasia is also urged on
grounds of mercy and the alleviation of suffering. Some of the Task Force
members believe that the practices offer clear benefits to certain
patients who are dying or otherwise suffering greatly. They recognize
that providing a quick, less prolonged death for some patients can be a
compassionate act. These members, however, regard the number of cases
when assisted suicide or euthanasia are medically and ethically
appropriate as extremely rare. They do not believe that the benefits
incurred for this small number of
-----------------------------------------------------------------------------
(31) An alternative measure used in the study suggests that nonvoluntary
euthanasia occurred in 1.6% of all deaths. P. J. Van der Maas
et al., "Euthanasia and Other Medical Decisions Concerning
the End of Life," Lancet 338 (1991): 669-74. A more recent study
asked the physicians who performed nonvoluntary euthanasia for
further information. Only 56% of nonvoluntary euthanasia cases
involved patients who lacked decision-making capacity at the time
of death; in the remaining 44% of cases, euthanasia was performed
on competent (36%) or possibly competent (8%) patients without
an explicit request. L. Pijnenborg et al., "Life-Terminating
Acts Without Explicit Request," Lancet 341 (1993): 1196-99.
CHAPTER 6 - CRAFTING PUBLIC POLICY 135
patients can justify a major shift in public policy or the serious
risks that legalizing the practice would entail.
Public support for legalizing assisted suicide and euthanasia can be
attributed in part to fear of the dying process - fear of losing control
in the face of modern medical technologies and fear of dying in pain.
Both fears arise from the failure of clinical practice to use modern
medical advances well. In the one case, medical technologies to sustain
life have been overused, subjecting patients to unwanted and burdensome
treatment. In the other, medical techniques to relieve pain are
remarkably underutilized.
Many patients now experience a more protracted and more painful death
than could be provided if existing medical alternatives were applied well.
In particular, modern pain relief and palliative care, appropriately used,
can relieve pain in all but very rare cases. These techniques, such as a
self- administered opioid drip, can give patients direct control over
their treatment. With effective pain relief, the disability and suffering
associated with severe pain can also be ameliorated for the vast majority
of patients. In fact, although many patients express suicidal ideation at
some time in the course of their illness, few commit or attempt suicide
when offered appropriate support.
The Task Force urges steps to enhance pain relief and improve the
psychological treatment available to terminally and severely ill patients.
The members recognize that such remedies, even when implemented well, will
not relieve the pain of all patients. They feel
deep compassion for patients in those rare cases when pain cannot be
alleviated even with the most aggressive palliative care. They believe,
however, that legalizing assisted suicide or euthanasia to make the
practices readily available to these patients would create widespread and
unjustified risks for many others.
Enhanced pain relief, no matter how well or widely administered, will
not offer a panacea for the broader problem of human suffering.
Inherently subjective, the experience of suffering covers a wide range of
human situations - individuals who are disabled or fear the onset of
disability; those who are terminally or chronically ill but free of severe
pain; and individuals who are isolated and alone, as well as those who
face the despair imposed by poverty and deprivation. In some cases, such
as quadriplegia,'the disability and associated dependence may be almost
total. In others, it is not physical pain or impairment that causes
despair, but anticipated physical decline and loss of control. For some
individuals, suffering arises from mental illness that is either
136 WHEN DEATH IS SOUGHT
long-standing and somatic such as schizophrenia or from severe symptoms of
depression.
Caring health care professionals can sometimes relieve the patient's
suffering: a disabled person may benefit from physical therapy or
equipment to increase functioning; clinical depression is often treatable,
even in the presence of chronic or terminal illness; and social work
support or psychological counseling can improve personal relationships and
help to minimize social isolation. But suffering also often stems from
causes that lie totally outside the realm of physical symptoms and medical
cures. Indeed, suicides by terminally ill persons are a small fraction of
the suicide attempts and suicides committed each year in the United
States.
The Task Force members believe that medically assisted dying and
direct medical killing are unacceptable societal responses to the problem
of human suffering. Compared to the resources, caring, and compassion
needed to respond to suffering individuals, a lethal prescription or
injection would offer a simple solution for profoundly human and complex
dilemmas. It would also extend medicine from the realm of care or cure to
dispensing death for problems endemic to the human condition.
Apart from the number of patients who would actually seek assisted
death or euthanasia, those who advocate legalizing the practices maintain
that many individuals would benefit from knowing that these options are
available, even if they never use them. Clearly, whatever other meanings
they may carry, the practices have become a potent symbol of control. For
some segment of the public, assisted suicide and euthanasia represent a
sense of empowerment and a certain means of escape from a painful,
intolerable death. Given the data showing how few terminally ill patients
actually commit suicide if adequate pain relief and support are provided,
this desire for an assisted death appears to appeal most to those who are
healthy, not to those who are ill.
The Task Force members believe that it is important for individuals to
have a sense of control over their medical destiny at life's end. Instead
of assistance to commit suicide or laws that would make a lethal injection
available upon request, they advocate enhanced pain relief and palliative
care and improvement in our laws and practices for decisions about
life-sustaining treatment. Effective implementation of existing laws on
treatment decisions would enable patients and those close to them to
refuse life-sustaining treatment that prolonged the, patient's suffering.
Experience with many of these laws, such as the
CHAPTER 6 - CRAFTING PUBLIC POLICY 137
health care proxy law in New York State, is still relatively limited.
However, an estimated 10 to 15 percent of the population has already
signed a health care proxy. Available studies also show that most people
are convinced of the importance of advance planning. These data point to
the potential success of further outreach as public habits evolve. In
addition, laws that allow family members and others to decide about
treatment in the absence of an advance directive are newly enacted in many
states. Some states like New York are considering, but have not passed,
this kind of legislation.(32) These laws also promise significant change,
and a greater sense of control for patients and those closest to them.
Finally, it appears that professional practices and attitudes are
changing, reflecting more willingness by physicians to talk with patients
about treatment options.
All in all, it is too early to declare policies on decisions for
life-sustaining treatment a failure and move on to more drastic remedies.
Instead, health care professionals and other segments of society must be
committed to translating existing legal alternatives into effective and
compassionate practice at the bedside.
The debate on assisted suicide and euthanasia has also highlighted the
severe shortcomings of current pain relief practices and palliative
care.(33) Although some health care professionals and others had commented
on this problem previously and sought to promote change, awareness of the
problem was not widespread. Nor has the medical community made the
commitment needed to give pain relief and palliative care a higher
priority in medical training and practice. Extensive measures to educate
the public about pain relief have also not been undertaken. In short, the
lack of effective pain relief and palliative care is a problem that
society has just started to tackle.
These steps will not eliminate all support for legalizing assisted
suicide and euthanasia. Nor will they respond to all cases or reasons why
patients might seek relief through these practices. Yet, they might
address the public concern that seems to underlie support for assisted
suicide and euthanasia. Press coverage of end-of-life choices has long
obscured the distinction between refusing treatment and euthanasia both
practices have been labeled with the "right-to-die" rubric. Public
opinion polls are imprecise and unclear, providing no sense of whether
---------------------------------------------------------------------------
(32) Assembly Bill No. 7166. The surrogate decisions legislation was
proposed by the Task Force and is part of Governor Cuomo's
legislative program for 1994. Many professional and civic
organizations testified in support of the bill at public hearings.
(33) For specific recommendations by the Task Force to change
existing law, regulations, and clinical practice to enhance
pain relief, see chapter 8.
138 WHEN DEATH IS SOUGHT
the public understands the distinctions between stopping treatment,
assisted suicide, and euthanasia. The polls have also yielded little
insight about the public's real concerns about the dying process.
If the refusal of treatment and effective pain relief became available
alternatives, the public might assess the need for assisted suicide and
euthanasia quite differently. The plea for autonomy would still retain an
intuitive appeal, but the felt need for the options might diminish
significantly if we used our existing clinical and legal resources more
wisely and effectively.
Inherent Ethical Objections
Our laws prohibiting assisted suicide and euthanasia are
long-standing. Historically, they have rested on both an assessment of
consequences and a judgment that it is intrinsically wrong for one person
to assist another to commit suicide or to take another person's life, even
with the best or most benevolent of motives. Our society has long
regarded this proscription against killing or aiding a suicide, except in
defense of self or others, as fundamental to our social fabric and to the
boundaries established in our relationships with one another.
Some of the Task Force members believe that assisted suicide and
euthanasia are inherently wrong. The practices presume an absolute
dominion over human life, by both the person who commits suicide or
consents to be killed and the person who acts to make that possible. Fear
of death, the discomfort of disability, anxiety about aging, or despair at
personal failures, among other reasons, may have rendered this control
appealing throughout human history. But American society has never
obliged; it has never affirmatively sanctioned suicide or set forth rules
for those who assist or kill another. Embedded in that judgment has been
a sense of the limits of human power and control. These Task Force
members believe that this limit should not be abandoned.
These Task Force members are also deeply concerned that assisted
suicide and euthanasia will foster disrespect for human life. Both
practices render human life dispensable; death becomes another problem to
be mastered or managed, rather than a distinct and inviolable part of our
humanness. The dignity of human life itself precludes policies that would
allow it to be disposed of so easily. Respect for human life also makes
an agreement that aims at death ethically unacceptable as a basis for
human relationships.
Some Task Force members are most troubled by the prospect of
medicalizing the practices - they believe that physician should
CHAPTER 6 - CRAFTING PUBLIC POLICY 139
neither assist their patients to commit suicide nor kill them, even
with benevolent motives. Many of the physicians, as well as others on the
Task Force, embrace this view. They regard both assisted suicide and
euthanasia as inherently and irreconcilably incompatible with medical
practice.(34)
These Task Force members, like the Task Force as a whole, believe that
physicians have an ethical duty to alleviate pain. They strongly endorse
public and professional programs that would enhance effective pain relief
and give pain relief a higher priority in medical education, training, and
practice. But they do not believe that the professional obligation to
alleviate suffering can justify allowing physicians to kill their patients
or to assist suicide. In their view, physicians cannot assist their
patients' suicide or perform euthanasia without violating values that are
intrinsic to the practice of medicine and to the patient-physician
relationship.
Physicians wield enormous power in their relationship with patients.
This power itself demands clear boundaries. Policies and laws allowing
physicians to withhold or withdraw life-sustaining treatment, in
consultation with patients or others close to the patient, recognize the
limits of what medicine can achieve. This sense of limits should not
suggest, nor should it support, the medicalization of assisted suicide or
direct killing.
Finally, these members believe that granting physicians authority to
assist suicide and perform euthanasia would have deeply troubling
consequences for the patient-physician relationship. It would erode the
commitment of physicians and other health care professionals to care for
dying and incurably ill patients. Patients in turn might be fearful that
they would become candidates for these "treatments," ' or might worry
about the consequences of refusing these options once they are presented
by their physician. Most significant, those members believe that once
physicians are licensed to kill as a therapeutic alternative, the public
image of the medical profession and the medical art will be
------------------------------------------------------------------------
(34) This conflation of healing and killing was in fact central to the
medicalization of euthanasia in the Nazi regime. In sharp
contrast to the current euthanasia movement, which espouses the
practice for the good of patients, the Nazi medical vision
focused on the health and good of the nation, or Volk, not the
patient's own wishes to die. Nonetheless, as Robert Jay Lifton
describes in the introduction to his powerful, meticulously
documented book, The Nazi Doctors, "My argument in this
study is that the medicalization of killing - the imagery of
killing in the name of healing - was crucial to that terrible
step. At the heart of the Nazi enterprise, then, is the
destruction of the boundary between healing and killing."
R. J. Lifton, The Nazi Doctors.- Medical Killing and the
Psychology of Genocide (New York: Basic Books, 1986), 14.
140 WHEN DEATH IS SOUGHT
damaged irrevocably. For all these reasons, some of the Task Force
members have concluded not only that the nature and goals of medicine
offer no special reason that doctors should be exempted from the general
prohibition against killing, but that it would be especially inappropriate
and harmful to make doctors the repository of legally sanctioned killing
or suicide assistance.
Private Acts and Public Policy
Other Task Force members do not share the conclusion that assisted
suicide is inherently unethical or incompatible with medical practice. On
the contrary, some members believe that it is not intrinsically wrong for
doctors or others to assist suicide in some cases. In fact, they believe
that in appropriate circumstances, this assistance would manifest a
physician's commitment and duty to his or her patient. Nonetheless, these
members believe that legalizing assisted suicide would be unwise and
dangerous public policy for the reasons discussed above. Essentially,
they concluded that ethical, compassionate actions by thoughtful
individuals in some cases cannot be translated into good public policy.
These members can envision rare cases when assisted suicide offers
patients relief from pain and a prolonged dying that cannot be ameliorated
by currently available medical practice. They believe that in such cases
suicide can be an ethically acceptable choice for both the patient and for
the physician or others who assist the patient. They think that this
option can be a rational response to an intolerable situation. They
would, however, oppose any change in existing law to make such assistance
legal.
Several facts played a critical role in the judgment reached by these
members. They recognize that in extreme cases when assistance to commit
suicide is most compelling, patients may now find a physician willing to
provide medication and information. It is highly unlikely that physicians
who are thoughtful and responsible in providing this assistance will face
criminal sanctions; given the sympathies of juries and the difficulties of
proving intention in the private interaction between doctor and patient,
prosecutors have not been eager to bring these cases.
Although the law barring assisted suicide and euthanasia is rarely
enforced, these Task Force members believe that this legal prohibition
serves important purposes. In addition to regulating and restraining
behavior, our laws also serve a highly symbolic function. These members
regard the consequences of quietly tolerating assisted suicide as a
private act of agreement between two individuals in extreme cases as
CHAPTER 6 - CRAFTING PUBLIC POLICY 141
profoundly different from the consequences of legalizing the practice.
The legal prohibition, while not uniformly honored, preserves the gravity
of conduct to assist suicide and prevents abuse. It demands caution and
reflection. It maintains the decision by both patient and physician as a
solemn, private act and prevents abuse. It also requires a deep
commitment by health care professionals who must violate the law to offer
this assistance to patients.
These Task Force members acknowledge the inherent tension and
discomfort of a position that prohibits actions they believe are ethically
justifiable. They recognize the problems of a policy that renders relief
for patients, albeit in rare cases, contingent on the moral courage of
health care professionals and on their willingness to violate the law.
Significant too is the fact that some physicians now provide suicide
assistance without the benefit of guidelines that would be established if
the state and the medical profession sanctioned and regulated the
practice.(35) Finally, they recognize the shortcomings of a policy that
leaves physicians who act responsibly and with the best of motives subject
to possible criminal or professional sanctions for conduct that is legally
proscribed but caring and appropriate.
On balance, even considering these reasons to legalize assisted
suicide, these members unanimously concluded that the prohibition against
assisted suicide should not be changed. While not a tidy or perfect
resolution, it serves the interests of patients far better than legalizing
the practice. By curtailing the autonomy of patients in a very small
number of cases when assisted suicide is a compelling and justifiable
response, it preserves the autonomy and well-being of many others. It
also prevents the widespread abuses that would be likely to occur if
assisted suicide were legalized.
Some Further Thoughts About Euthanasia
With a few exceptions, the Task Force members believe that euthanasia
is ethically unacceptable under any circumstances. They regard euthanasia
as morally more objectionable and socially more dangerous than assisted
suicide. The ethical distinction arises because the moral agency of the
person who performs euthanasia, whether it is a physician, family member,
or other person, is more
--------------------------------------------------------------------------
(35) The number of physicians willing to assist suicides without the
benefit of protection from liability is far smaller than the number
who would participate if the practice were legal. The fact that
physicians must take some risk and act out of commitment to their
patients is itself a valuable safeguard.
142 WHEN DEATH IS SOUGHT
direct. Euthanasia is another form of killing, albeit with consent
and for benevolent motives.
With assisted suicide, the patient takes his or her own life, although
those who assist also bear moral responsibility for their actions. This
difference in moral agency, and the fact that it is the patient, not
another person, who takes the final step, has significant implications for
the risks posed by the practices. Most important, assisted suicide always
involves a patient who is competent, or who at least has the capacity to
take the medication provided or to perform any other last act required to
achieve death. In contrast, as discussed above, euthanasia need not
distinguish between the competent and the incompetent. Indeed, any such
distinction is unlikely to hold either in medical practice or public
policy. The notion of medical killing of individuals without consent
under guidelines sanctioned or unsanctioned by the state, even for the
most benevolent of motives, is profoundly disquieting.
Euthanasia is more troubling even for patients who are competent to
consent to their deaths. Many individuals may feel ambivalent and
uncertain when confronting their own imminent death. The willingness of
their physician or family members to perform euthanasia may overcome that
ambivalence, or leave people feeling that the momentum toward their death
cannot be forestalled or reversed. The potential to abuse the practice by
causing death without the patient's consent is also far stronger with
euthanasia than with assisted suicide. Given the private nature of the
doctor patient relationship and medical decisions, this kind of abuse would
be difficult to prevent and to identify.
Response to Proposed Guidelines to
Legalize Assisted Suicide
The Task Force examined, and ultimately rejected, proposals to
legalize assisted suicide. One of the most thoughtful of these proposals
was presented in a 1992 article entitled "Care of the Hopelessly Ill:
Proposed Criteria for Physician-Assisted Suicide," by three doctors.(36) The
authors recommend that physician-assisted suicide should be legalized.
They also propose criteria to guide physicians in determining when to
comply with a patient's request for suicide assistance: the patient must
suffer from an incurable condition; the patient must
------------------------------------------------------------------------------
(36) T. E. Quill, C. K. Cassel, and D. E. Meier, "Care of the
Hopelessly III: Proposed Clinical Criteria for Physician-Assisted
Suicide," New England Journal of Medicine 327 (1992): 1380-84.
CHAPTER 6 - CRAFTING PUBLIC POLICY 143
repeatedly request suicide assistance; his or her judgment must not be
distorted by reversible depression; the doctor-patient relationship must
be meaningful; the physician should insure that the patient receives good
palliative care; and the physician should consult with another doctor and
document the decision-making process. The authors suggest that in
appropriate cases, physicians should prescribe a lethal dose of
medication, which "should ideally be taken in the physician's presence."
They argue that legalizing physician-assisted suicide would help suffering
patients who wish to end their lives, and would allow physicians and loved
ones to remain with them at the end of life without facing legal
liability.(37)
The Task Force believes that such a policy poses severe risks to large
numbers of patients, especially those who are most disadvantaged. Some of
the members also reject this policy because they believe that assisted
suicide is morally unacceptable even with the "best" of practices. The
care of many patients currently fails to meet generally accepted standards
of high-quality clinical practice. These failures are most egregious for
poor and socially disadvantaged individuals, and for patients in large,
overburdened facilities serving the urban and rural poor. Many will not
have the benefit of skilled pain management and comfort care. Indeed, a
recent study found that patients treated for cancer at centers that care
predominantly for minority individuals were three times more likely to
receive inadequate therapy to relieve pain.(38) Many patients will also lack
access to psychiatric services. Furthermore, for most patients who are
terminally or severely ill, routine psychiatric consultation would be
inadequate to diagnose reliably whether the patient is suffering from
depressions.(39)
Many patients from all sectors of society cannot rely on a
physician patient relationship marked by good communication, personal
concern, and respect. It is unlikely that patients who now face
difficulties in obtaining minimally acceptable treatment would receive the
excellent care and personal support essential to the proposal.(40)
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(37) Ibid.
(38) C. S. Clecland et al., "Pain and Its Treatment in Outpatients
with Metastatic Cancer," New England Journal of Medicine
320 (1994): 592-96.
(39) See the discussion in chapters 1 and 8 on the difficulty of
diagnosing depression in this group of patients.
(40) Two psychiatrists write: "The guidelines of Quill and colleagues
require effective, collaborative, and committed doctor-patient
relationships. They rely on the abilities of physicians to
detect or determine when contemplation is rational and not
'distorted.' Such relationships between patients and skilled
physicians exist, no doubt, but how common are they in 1993?
Indeed, current social and economic pressures make these qualities
more precarious, not less. Managed competition and cost control
encourage leisurely interactions or time to 'just talk."'
E. D. Caine and Y. C. Conwell, "Self-determined Death, the
Physician, and Medical Priorities: Is There Time to Talk?"
Journal of the American Medical Association 270 (1993): 875 -76.
144 WHEN DEATH IS SOUGHT
Efforts to increase access and assure quality have had uneven results at best.
In short, it is improbable that the proposed clinical criteria will serve
as effective safeguards for vulnerable patients.
It is unclear to what extent the authors of the guidelines intend
their recommendations to provide legal safeguards that could be enforced
to prevent poor practices or abuse. The proposal instead seems to suggest
guidance for physicians confronted with a request for assistance in
suicide. The safeguards proposed depend on the conscientious and largely
subjective judgment of each physician. For example, the criteria suggest
that the physician determine that the doctor-patient relationship is
"meaningful," and that he or she has been able to "get to know the patient
in order to understand fully the reasons for the request."(41) Physicians
will interpret this requirement in entirely different ways. To date, both
Quill and Kevorkian have stated that they were able effectively to
evaluate patients' requests for assistance to commit suicide.
Other criteria proposed are necessarily subjective, but for that
reason would be an elastic and ineffective guidepost for public policy and
sanctioned private behavior. For example, the patient need not be
terminally ill but must "have a condition that is incurable and associated
with severe, unrelenting suffering." The physician's own judgments about
the reasonableness of the patient's request would be decisive, a judgment
that would depend almost entirely on the personal views of each physician
and the way he or she values the patient's life.
The impetus to expand these or other stipulated criteria is especially
strong under the proposed guidelines because the guidelines present
assisted suicide as a medical treatment. Some advocates have portrayed
assisted suicide as an exceptional action when treatment fails.(42)
However, the authors present physician- assisted suicide as "part of the
continuum of options for comfort care,"(43) although one that should be
available only when alternatives fail. Some physicians
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(41) Quill, Cassel, and Meier, 1382.
(42) S. H. Wanzer et al., "The Physician's Responsibility Toward
Hopelessly Ill Patients: A Second Look," New England Journal
of Medicine 327 (1992):1384-88.
(43) Quill, Cassel and Meier, 1381.
CHAPTER 6 - CRAFTING PUBLIC POLICY 145
will undoubtedly feel that requirements that they may find arbitrary
should not prevent them from offering a suffering patient a "treatment" to
end life.
Permitting physicians to assist the suicide of patients physically
capable of committing suicide, and characterizing this action as a
"treatment," would also lead to acceptance of voluntary euthanasia for
patients physically unable to perform the final act. In individual cases,
the line between assisted suicide and euthanasia may be blurred. This
risk is especially great because the proposal permits, and in fact
encourages, the physician's presence when the patient commits suicide. As
others have argued, the physician's presence raises additional concerns
because patients who are ambivalent or hesitant may find it harder to
delay or change the decision to die.
The authors of the guidelines on assisted suicide reject legalizing
euthanasia because of the risks the practice would entail. They also
acknowledge that continued prohibition of euthanasia carries a cost to
some incurably ill patients who wish to end their lives:
Such persons ... must not be abandoned to their suffering; a
combination of decisions to forgo life-sustaining treatment
(including food and fluids) with aggressive comfort measures
(such as analgesics and sedatives) could be offered,
along with a commitment to search for creative alternatives.
We acknowledge that this solution is less than ideal, but we
also recognize that in the United States access to medical care
is currently too inequitable, and many doctor-patient
relationships too impersonal, for us to tolerate the risks of
permitting active voluntary euthanasia.(44)
The Task Force agrees. These same risks render assisted suicide
unacceptable. While euthanasia is socially more dangerous, the same
systemic problems undermine the reliability of any proposed safeguards for
assisted suicide. Moreover, assisted suicide and euthanasia are closely
linked; as experience in the Netherlands has shown, once assisted suicide
is embraced, euthanasia will seem only a neater and simpler option to
doctors and their patients.(45)
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(44) Quill, Cassel, and Meier, 1381.
(45) In the Netherlands, assisted suicide and voluntary euthanasia are both
legally sanctioned. A lethal injection is preferred by both doctors
and patients as a simpler option. Only a small percentage of
cases are assisted suicides; a recent study reported that of all
voluntary euthanasia and assisted suicide deaths, 85% are attributed
to voluntary euthanasia and 15% to assisted Suicide.
Van Der Maas et al.
146 WHEN DEATH IS SOUGHT
Distinguishing Decisions to
Forgo Life-Sustaining Treatment
Promoting patient autonomy has been central to public policies on
life-sustaining treatment over the past two decades. The Task Force has
proposed four laws that enhance autonomy and the well- being of patients
in decisions about life-sustaining treatment. Three of those laws have
been enacted and one is pending. A distinction between decisions to forgo
life-sustaining measures and assisted suicide and euthanasia is crucial to
the Task Force's position on both issues, and to the coherence of the
policies it has proposed for New York State.
Some of the Task Force members believe that intention provides a moral
dividing line between forgoing treatment and assisting suicide or
performing euthanasia. With the former, the patient and physician accept
the patient's death as a consequence of stopping or withholding treatment
that is unwanted or unduly burdensome. They do not, however, aim to
achieve the patient's death. Other members do not distinguish the two
practices based on intention, but believe that the difference between
allowing the patient to die a natural death and intervening to cause death
directly is ethically significant. All the Task Force members agree that
allowing decisions to forgo life- sustaining treatment and allowing
assisted suicide or euthanasia have radically different consequences and
meanings for public policy.
Existing law prohibits assisted suicide and euthanasia in all cases.
A similar ban for all decisions to stop or to withhold life-sustaining
treatment would be unthinkable. It would lead to inhumane and abusive
medical treatment. It would also be an extraordinary intrusion on
individual liberty.
If a patient is denied medically assisted suicide or euthanasia, he or
she is likely to die more slowly of natural causes. When a competent
patient is denied the option of refusing treatment, he or she will not
only have life prolonged, but must be physically forced to undergo
unwanted treatment. Whether the treatments are highly invasive such as
chemotherapy or a respirator, or are generally regarded as less intrusive
such as antibiotics, the patient's body is physically invaded without
consent. Under the common law, this is called battery.
In many cases, the patient must also be physically restrained to
accept the treatment; for example, when resisting patients are force fed
because they are demented or unable to consent to the removal of
treatment, the patient's hands are sometimes tied to the bed to prevent
the patient from removing the feeding tube. For patients who are
CHAPTER 6 - CRAFTING PUBLIC POLICY 147
competent and physically mobile, the restraint on freedom would be
even harsher, since imposing treatment would require involuntary
detention. While such-detention is now practiced in some cases to force
patients to undergo treatment for contagious diseases such as
multidrug-resistant tuberculosis, this extreme denial of individual
freedom is tolerated only because of the immediate danger of contagion and
life-threatening harm to others.
Even the firmest supporters of assisted suicide and euthanasia would
acknowledge that only a relatively small percentage of patients in
hospitals and nursing homes today would use the practices, if legal. In
contrast, a significant percentage of those cared for in modern medical
facilities undergo life-sustaining treatment. It is estimated that
approximately 70 percent of the deaths in hospitals today involve some
decision to withhold or to stop treatment. In many cases, the decision to
initiate treatment is often acceptable to the patient and to health care
professionals because treatment can be withdrawn or withheld if the
patient's condition worsens or the treatment proves intolerable for the
patient.
Years of experience with life-sustaining treatment have yielded hard
lessons about the burden that such treatment can impose on dying and
severely ill patients. A policy that uniformly prohibited decisions to
stop such treatments once they had begun would result in incalculable
harm. In short, use of the treatments is inconceivable without policies
that allow their discontinuance in appropriate circumstances. Those
policies entail some of the same risks posed by assisted suicide and
euthanasia - the possibility that physicians will not diagnose depression,
treat pain adequately, or explore other alternatives with the patient and
family. However, the benefits of the treatments, and the corresponding
need to allow decisions to forgo them in many cases, far outweigh those
risks. Indeed, it renders the willingness to undertake the risks a moral
and social imperative.
Under current policies, the appropriateness of stopping or withholding
treatment for competent patients has been tied to autonomy - to the
patient's own values and preferences. This is not just sound public
policy, but the only acceptable alternative in a pluralist society.
Decisions to accept or to refuse treatment call for choices about the
value and nature of human life, tolerance for disability and dependence,
and our relationships to family members and to others. As a society, we
share no single belief about these profoundly personal questions. Even if
held by a majority, one response could not be imposed on those who
disagreed.
148 WHEN DEATH IS SOUGHT
The decision to commit suicide or to consent to a lethal injection is
also tied to personal values and beliefs. But embracing autonomy in the
sphere of decisions about life-sustaining treatment does not mandate
recognition of a right to assisted suicide and euthanasia. Among
individual rights, only the right to believe is absolute. All the others
are qualified; they are calibrated depending on the strength of the claim
to freedom and the consequences for society as a whole. Our
constitutional law as well as our broader structure of civil laws and
policies are built on this foundation of social judgments. In the arena
of medical choices, as in other spheres of our collective life, autonomy
is not all or nothing. Even if the lines are hard to draw, the necessity
for doing so is no less compelling.
While the Task Force members are concerned about the movement to
legalize assisted suicide and euthanasia, they have consistently rejected
any arguments to deny the right to refuse life-sustaining treatment based
on notions of a slippery slope to assisted suicide and euthanasia.
Grounding policies for life-sustaining treatment on such fears would lead
to serious harm to patients. It would also fuel the movement for assisted
suicide and euthanasia, a movement that draws considerable strength from
public fears of an intolerable death prolonged by medical advances. Those
fears are not baseless; they are unfortunately now grounded in experience.
Policies and laws that deny individuals and those close to them the option
of refusing unwanted burdensome treatment will not dampen the public
desire for control but will only heighten demands for more drastic and
absolute steps.(46)
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(46) As Joseph Cardinal Bernadin argued in discussing policies about
withdrawing and withholding artificial nutrition and hydration,
"The challenge is to develop a nuanced public policy to protect
against an attitude that could erode respect for the inviolable
dignity of human life. If we do not resolve this critical issue
in a way that agrees with the common sense of people of good will,
we may contribute to the sense of desperation that will lead
people to accept euthanasia as an alternative solution to the
problem." Joseph Cardinal Bernardin, "Context for and Moral
Principles Guiding Catholic Conference of Illinois' Position on
Senate Bill 2213," Meeting of Pro-Life Department, Catholic
Conference of Illinois, Sept.11, 1990, p8.
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