Whose Right to Die?
EMANUEL EZEKIEL
The
persistence of abuse and the violation of safeguards in the
Netherlands, in spite of attendant publicity and condemnation,
suggest that the feared consequences of the legalization of
euthanasia are exactly its inherent consequences. America should
think again before pressing ahead with the legalization of
physician-assisted suicide and voluntary euthanasia writes
Emanuel Ezekiel in this Atlantic Monthly article.
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The debate over physician-assisted suicide and voluntary euthanasia
will soon reach its most important stage in this country. Last spring
the Second and Ninth Circuit Courts of Appeals handed down momentous
decisions striking down state laws in New York and Washington that
forbid physician-assisted suicide. Although the Second and Ninth Circuit
Court cases focus on physician-assisted suicide, and although there are
important differences between physician-assisted suicide and voluntary
euthanasia, the legal reasoning that would justify physician-assisted
suicide would almost certainly extend to voluntary euthanasia. The
intensity of the debate on both issues will grow during the wait for
rulings this year by the Supreme Court, which has accepted the two
circuit-court cases for review.
In physician-assisted suicide a doctor supplies a death-causing
means, such as barbiturates, but the patient performs the act that
brings about death. In voluntary euthanasia the physician performs the
death-causing act after determining that the patient indeed wishes to
end his or her life. Neither term applies to a patient's refusal of
life-support technology, such as a respirator or artificial nutrition,
or a patient's request that it be withdrawn; these have had ethical and
constitutional sanction nationwide for years. And neither term applies
to what is sometimes called indirect euthanasia, when the administration
of drugs primarily for pain relief may have the secondary effect of
causing death, as the physician is well aware. This practice, too, is
ethically and legally sanctioned.
In formulating their decisions the circuit-court judges made a number
of assumptions about the actual or likely circumstances surrounding
cases of death by active intervention. Their judgments are based on
misreadings of history, misinterpretations of survey data, mistaken
reasoning, and simple misinformation.
Myth No. 1:
It is primarily advances in biomedical technology — especially
life-sustaining technology — that have created unprecedented public
interest in physician-assisted suicide and voluntary euthanasia. “The
emergent right to receive medical assistance in hastening one's death
[is an] inevitable consequence of changes in the causes of death,
advances in medical science, and the development of new technologies.
Both the need and the capability to assist individuals [to] end their
lives in peace and dignity have increased exponentially” (Ninth Circuit
Court of Appeals).
Physician-assisted suicide and euthanasia have been profound ethical
issues confronting doctors since the birth of Western medicine, more
than 2,000 y ears ago. All the arguments made today to justify — or
condemn — the two practices were articulated before any modern
biomedical technology existed. The ancient Hippocratic Oath enjoins
physicians to “neither give a deadly drug to anybody if asked for it,
nor make a suggestion to this effect.” The oath was written at a time
when physicians commonly provided euthanasia and assisted suicide for
ailments ranging from foot infections and gallstones to cancer and
senility. Indeed, the Hippocratic Oath represented the minority view in
a debate within the ancient Greek medical community over the ethics of
euthanasia.
Even in America legalized euthanasia, rather than being a new issue,
has been publicly debated and rejected — a fact the courts failed to
mention. Modern interest in euthanasia in the United States began in
1870, when a commentator, Samuel Williams, proposed to the Birmingham
Speculative Club that euthanasia be permitted “in all cases of hopeless
and painful illness” to bring about “a quick and painless death.” The
word “painless” is important: the idea of euthanasia began gaining
ground in modern times not because of new technologies for agonizingly
prolonging life but because of the discovery of new drugs, such as
morphine and various anesthetics for the relief of pain, that could also
painlessly induce death. Over the next three decades Williams's proposal
was reprinted in popular magazines and books, discussed in the pages of
prominent literary and political journals, and debated at the meetings
of American medical societies and nonmedical professional associations.
The debate culminated in 1906, after the Ohio legislature took up “An
Act Concerning Administration of Drugs etc. to Mortally Injured and
Diseased Persons” — a bill to legalize euthanasia. The merits of the act
were debated for months and were covered extensively in the pages of
The New York Times, which vigorously opposed legalization, and in
medical journals. The Ohio legislature overwhelmingly rejected the bill,
effectively ending that chapter of the euthanasia debate. Thus, decades
before the discovery of penicillin (1928) and the development of
mechanical respirators (1929), dialysis (1945), and other
life-sustaining technologies, serious public discussions of
physician-assisted suicide and euthanasia took place in the United
States (and also in European countries). These discussions were couched
in the same language we use today — “patients' rights,” “the relief of
pain and suffering,” “the loss of dignity.”
Indeed, rather than creating a perceived need for physician-assisted
suicide and euthanasia, advances in life-sustaining technology should
help to obviate them. Patients who are being kept alive by technology
and want to end their lives already have a recognized constitutional
right to stop any and all medical interventions, from respirators to
antibiotics. They do not need physician-assisted suicide or euthanasia.
Myth No. 2:
Legalizing physician-assisted suicide and euthanasia is widely
endorsed. “There is unquestionably growing popular support for
permitting doctors to provide assistance to terminally ill patients who
wish to hasten their deaths” (Ninth Circuit Court of Appeals).
Yes, polls
show that a majority of Americans support physician-assisted suicide and
euthanasia — indeed, have supported legalizing them for almost
twenty-five years. But the support is neither strong nor deep. Careful
analysis of the polling data suggests that there is a “rule of thirds”:
a third of Americans support legalization under a wide variety of
circumstances; a third oppose it under any circumstances; and a third
support it in a few cases but oppose it in most circumstances.
Americans tend to endorse the use of physician-assisted suicide and
euthanasia when the question is abstract and hypothetical. One
formulation that has been used for almost fifty years and elicits
widespread agreement is “When a person has a disease that cannot be
cured, do you think doctors should be allowed by law to end the
patient's life if the patient and his or her family request it?” The
question has several flaws, the most important one being that “to end
the patient's life” is vague and specific neither to physician-assisted
suicide nor to euthanasia. The phrase could mean simply stopping
life-sustaining technologies that are keeping the patient alive, which
is already legal.
Other, more carefully designed questions can elicit majority support
for physician-assisted suicide and euthanasia, but only when patients
are described as terminally ill and experiencing unremitting physical
pain. Support dwindles when the public is asked about physician-assisted
suicide and euthanasia in virtually any other situation. Two thirds of
Americans oppose physician-assisted suicide or euthanasia when a
terminally ill patient has no pain but wants to die because of concern
about being a burden to his or her family, or because he or she finds a
drawn-out dying process meaningless. The most accurate characterization
of the survey data is that a significant majority of Americans oppose
physician-assisted suicide and euthanasia except in the limited
case of a terminally ill patient with uncontrollable pain.
Myth No. 3:
It is terminally ill patients with uncontrollable pain who are most
likely to be interested in physician-assisted suicide or euthanasia. “In
the case of a terminally ill adult who ends his life in the final stages
of an incurable and painful degenerative disease, in order to avoid
debilitating pain and a humiliating death, the decision to commit
suicide is not senseless, and death does not come too early” (Ninth
Circuit Court of Appeals).
The empirical studies of physician-assisted suicide and euthanasia in
the
Netherlands (where the practices have long been accepted), the
United States, and elsewhere indicate that pain plays a minor role in
motivating requests for the procedures. A 1996 update of the
comprehensive and rigorous 1991 Remmelink Report on euthanasia practices
in the Netherlands revealed that in only 32 percent of all cases did
pain play any role in requests for euthanasia; indeed, pain was the sole
reason for requesting euthanasia in no cases. A study of patients in
nursing homes in the Netherlands revealed that pain was among the
reasons for requesting physician-assisted suicide or euthanasia in only
29 percent of cases and was the main reason in only 11 percent. A study
of physicians in Washington State who admitted to having received
requests for physician-assisted suicide or euthanasia revealed that
severe pain played a role in only about a third of the requests. A study
of HIV-infected patients in New York found that interest in
physician-assisted suicide was not associated with patients'
experiencing pain or with pain-related limitations on function. My own
recent study of cancer patients, conducted in Boston, reveals that those
with pain are more likely than others to oppose physician-assisted
suicide and euthanasia. These patients are also more likely to say that
they would ask to change doctors if their attending physician indicated
that he or she had performed physician-assisted suicide or euthanasia.
No study has ever shown that pain plays a major role in motivating
patient requests for physician-assisted suicide or euthanasia.
What does motivate requests? According to studies, depression and
general psychological distress. The Remmelink Report found that among
Dutch patients the leading reason for requesting euthanasia was a
perceived loss of dignity. The study of Washington State physicians
found that the leading factors driving requests were fear of a loss of
control or of dignity, of being a burden, and of being dependent. Among
the New York HIV-infected patients the leading factors were depression,
hopelessness, and having few — and poor-quality — social supports. In my
own study, patients who were depressed were most likely to discuss
euthanasia seriously, to hoard drugs for suicide, and to have read
Final Exit,
the Hemlock Society suicide manual.
These studies highlight an important conflict between people's actual
attitudes and likely medical practice. Many Americans say they would
support physician-assisted suicide or euthanasia for patients in pain;
they oppose the practices for patients who worry about being a burden,
about life's being meaningless, about hopelessness. But patients with
depression and psychological distress are most likely to request death;
patients in pain are less likely to request it.
Myth No. 4:
The experience with euthanasia in the Netherlands shows that
permitting physician-assisted suicide and euthanasia will not eventually
get out of hand. “There is no reason to believe that legalizing assisted
suicide will lead to the horrific consequences its opponents suggest”
(Ninth Circuit Court of Appeals).
The slippery slope feared by opponents and supporters alike is the
route from physician-assisted suicide or euthanasia for terminally ill
but competent adults to euthanasia for patients who cannot give consent:
the unconscious, the demented, the mentally ill, and children. Because
the Netherlands is the one developed democracy that has experience with
sanctioned euthanasia, advocates and adversaries alike invoke it to
defend their points of view. What does the Dutch experience actually
show?
Contemporary Dutch policy regarding voluntary euthanasia had its
origins in 1973, with the case of a physician, Geertruida Postma, who
injected a deaf, partially paralyzed seventy-eight-year-old woman with
morphine, ending her life. The patient happened to be Postma's mother.
Postma was convicted of murder but given a suspended sentence of one
week in jail and one year on probation, a sentence that effectively
exonerated her. A subsequent case in 1981 resulted in an agreement
between Dutch prosecutors and the Royal Dutch Medical Society, under the
terms of which physicians who participated in physician-assisted suicide
or euthanasia would not be prosecuted for murder if they adhered to
certain guidelines. The main guidelines, parts of which have been
incorporated into proposals for outright legalization in other
countries, are that 1) the patient must make an informed, free, and
explicit request for physician-assisted suicide or euthanasia, and the
request must be repeated over time; 2) the patient must be experiencing
unbearable suffering — physical or psychological — that cannot be
relieved by any intervention except physician-assisted suicide or
euthanasia; 3) the attending physician must have a consultation with a
second, independent physician to confirm that the case is appropriate
for physician-assisted suicide or euthanasia; and 4) the physician must
report the facts of the case to the coroner, as part of a notification
procedure developed to permit investigation and to ensure that the
guidelines have been followed.
It is important to recognize that despite a widespread perception to
the contrary, euthanasia has not been legalized under the Dutch penal
code — it remains a crime, albeit one that will not be prosecuted if
performed in accordance with the guidelines. Several recent efforts in
the Netherlands to overtly legalize physician-assisted suicide and
euthanasia have been defeated, primarily because of opposition from
Dutch religious authorities. The Dutch rules differ from what U.S.
proposals (such as those embodied in a 1994 Oregon measure on
physician-assisted suicide, still in the courts) would require in the
following respects: they do not stipulate that a patient must be
terminally ill, and they do not require that a patient be experiencing
physical pain or suffering — a patient can be experiencing
psychological suffering only.
Not until 1990, a decade after the Dutch rules were promulgated, was
the comprehensive and reliable empirical study done of
physician-assisted suicide and euthanasia in the Netherlands which
resulted in the Remmelink Report. The recent update of this report
reveals that of about 9,700 requests for physician-assisted suicide or
euthanasia made each year in the Netherlands, about 3,600 are acceded
to, accounting for 2.7 percent of all deaths in the Netherlands (2.3
percent from euthanasia, 0.4 percent from physician-assisted suicide).
Nearly 80 percent of patients who undergo physician-assisted suicide or
euthanasia have cancer, with just four percent having neurological
conditions such as Lou Gehrig's disease or multiple sclerosis. The
report revealed that 53 percent of the Dutch physicians interviewed had
participated in physician-assisted suicide or euthanasia at some point
in their career; 29 percent had participated within the previous two
years. Only 12 percent of the Dutch doctors categorically refused to
participate in physician-assisted suicide or euthanasia, most likely for
religious reasons.
The 1996 data show small increases in the numbers of requests for
physician-assisted suicide and euthanasia since 1990, but the overall
changes are undramatic. The new research does indicate, however, that
problems identified by the Remmelink Report have by no means been
eliminated.
First, the update found that beyond the roughly 3,600 cases of
physician-assisted suicide and euthanasia reported in a given year,
there are about 1,000 instances of nonvoluntary euthanasia. Most
frequently, patients who were no longer competent were given euthanasia
even though they could not have freely, explicitly, and repeatedly
requested it. Before becoming unconscious or mentally incompetent about
half these patients did discuss or express a wish for euthanasia;
nevertheless, they were unable to reaffirm their wishes when the
euthanasia was performed. Similarly, a study of nursing-home patients
found that in only 41 percent of physician-assisted suicide and
euthanasia cases did doctors adhere to all the guidelines. Although most
of the violations were minor (usually deviations in the notification
procedure), in 15 percent of cases the patient did not initiate the
request for physician-assisted suicide or euthanasia; in 15 percent
there was no consultation with a second physician; in seven percent no
more than one day elapsed between the first request and the actual
physician-assisted suicide or euthanasia, violating the guideline
calling for repeated requests; and in nine percent interventions other
than physician-assisted suicide or euthanasia could have been tried to
relieve the patient's suffering.
Second, euthanasia of newborns has been acknowledged. The reported
cases have involved babies suffering from well-recognized fatal or
severely disabling defects, though the babies were not in fact dying.
Precisely how many cases have occurred is not known. One estimate is
that ten to fifteen such cases occur each year. Whether ethically
justified or not, providing euthanasia to newborns (upon parental
request) is not voluntary euthanasia and does constitute a kind of
“mercy killing.”
The Netherlands studies fail to demonstrate that permitting
physician-assisted suicide and euthanasia will not lead to the
nonvoluntary euthanasia of children, the demented, the mentally ill, the
old, and others. Indeed, the persistence of abuse and the violation of
safeguards, despite publicity and condemnation, suggest that the feared
consequences of legalization are exactly its inherent consequences.
Third, the Boudewijn Chabot case raises a warning flag. Chabot, a
psychiatrist, participated in the suicide of a depressed fifty-year-old
woman in 1991. Her first son had committed suicide a few years earlier.
Then her father had died. Under the stress her marriage dissolved. In
May of 1991 her second son died of cancer, and less than three months
later the woman reached Chabot through the Dutch Voluntary Euthanasia
Society, seeking someone to help her end her life. She refused
antidepressants and additional psychotherapy. She was never seen by
another physician in consultation. When Chabot discussed the case with
seven colleagues, at least two suggested that he not assist in the
suicide. The Dutch Supreme Court ultimately opted not to penalize
Chabot, reaffirming the permissibility of providing assisted suicide and
euthanasia on grounds of mental suffering alone. The Amsterdam Medical
Disciplinary College did reprimand him, however.
A statement by Else Borst-Eilers, the Dutch Minister of Health,
raises concerns about how euthanasia will come to be viewed once it is
routine: “There are situations in which the best way to heal the patient
is to help him die peacefully, and the doctor who in such a situation
grants the patient's request acts as the healer par excellence.”
The logic of understanding voluntary euthanasia as “healing” begins to
justify using euthanasia for children, the incompetent, the mentally
ill, and others who are suffering or who we imagine are suffering in
some fashion. As we have seen, there is a very strong tendency among
people who are healthy to extrapolate from the suffering of others in
ways that those who are in fact suffering would not countenance.
Many in favor of legalization urge caution in applying the experience
of the Netherlands to the United States, citing the many significant
geographic, cultural, and political differences between the countries.
The differences suggest, though, that the kinds of departures from
agreed-upon procedures that have occurred in the Netherlands are likely
to be even more commonplace in America. Whatever the emerging cultural,
ethnic, and religious diversity of the Netherlands, it pales in
comparison to the raucous diversity of the United States. And the Dutch
have relative income equality, whereas income inequality in the United
States is among the greatest in the developed world. Such diversity and
inequality make it harder to share norms and to enforce them. The Dutch
are also a law-abiding people who view government social supports,
interventions, and regulations as legitimate. America is a land founded
on opposition to government, where candidates for office campaign
against government legitimacy. If the law-abiding Dutch violate their
own euthanasia safeguards, what can we expect of Americans?
In the Netherlands physician-assisted suicide and euthanasia are
provided in the context of universal and comprehensive health care. The
United States has yet to provide such coverage, and leaves tens of
millions effectively without health care. Paul van der Maas, the
professor of public health who conducted the two Netherlands studies,
has said that in the absence of health-care coverage he would be loath
to permit euthanasia in the Netherlands, fearing that pressure might be
brought to bear on patients and doctors to save money rather than to
help patients.
What, then, should be U.S. policy regarding physician-assisted
suicide and euthanasia? Magazine and television stories about patients
who want to end their suffering by means of physician-assisted suicide
or euthanasia help to reinforce the seemingly inherent link between pain
and such interventions. As an oncologist I have often personally cared
for patients who suffer despite all available treatment. Only the
callous and insensitive would deny that in such cases physician-assisted
suicide or euthanasia can offer obvious benefits — can end a life that
is worse than death.
But these cases distort the picture. The question is not about
whether intervention is right for this or that particular patient. In
any given case it may be the ethical thing to do, whatever the law says
— and should be done. The question confronting the United States is one
of policy: Should we broadly legalize physician-assisted suicide and
euthanasia? We must not be swayed by a few — or even a few thousand —
wrenching cases in which such intervention seems unequivocally right.
Most of the patients interested in physician-assisted suicide or
euthanasia will not be suffering horrific pain. As noted, depression,
hopelessness, and psychological distress are the primary factors
motivating the great majority. Should their wishes be granted? Our usual
approach to people who try to end their lives for reasons of depression
and psychological distress is psychiatric intervention — not giving them
a syringe and life-ending drugs.
Legalizing physician-assisted suicide and euthanasia, some argue,
would not benefit only those who eventually made use of these
procedures; it would also provide “psychological comfort” or
“reassurance” to millions of other Americans, who would know that if
they were dying and things got really bad, they could end their lives.
However, the one study we have — the Boston study mentioned previously —
shows that for every cancer patient who is likely to be reassured by a
discussion of physician-assisted suicide or euthanasia, another patient
finds that such a discussion would decrease his or her trust in the care
being provided.
Whatever the benefits of legalized physician-assisted suicide and
euthanasia, they must be measured against the dangers of legalization.
In considering dangers we must consider more than potential violations
of safeguards, although the Dutch experience indicates that the danger
is real. (It is hardly surprising that, according to surveys, those who
are most opposed to physician-assisted suicide and euthanasia include
those most likely to experience abuse and coercion: the old, the less
well off, and minorities.) For instance, how would legalization affect
our society's already tenuous commitment to providing quality health
care for the millions of people who die every year?
Providing the terminally ill with compassionate care and dignity is
very hard work. It frequently requires monitoring and adjusting pain
medications, the onerous and thankless task of cleaning people who
cannot control their bladders and bowels, and feeding and dressing
people when their every movement is painful or difficult. It may require
agonizing talks with dying family members about their fears, their
reflections on life and what comes after, their family loves and family
antagonisms. Ending a patient's life by injection, with the added solace
that it will be quick and painless, is much easier than this constant
physical and emotional care. If there is a way to avoid all this hard
work, it becomes difficult not to use it.
Broad legalization of physician-assisted suicide and euthanasia would
have the paradoxical effect of making patients seem to be responsible
for their own suffering. Rather than being seen primarily as the victims
of pain and suffering caused by disease, patients would be seen as
having the power to end their suffering by agreeing to an injection or
taking some pills; refusing would mean that living through the pain was
the patient's decision, the patient's responsibility. Placing the blame
on the patient would reduce the motivation of caregivers to provide the
extra care that might be required, and would ease guilt if the care fell
short. Such an easy, thoughtless shift of responsibility is probably
what makes most hospice workers so deeply opposed to physician-assisted
suicide and euthanasia.
There is one final matter to consider: the possibility that
euthanasia not only would be performed on incompetent patients in
violation of the rules — as an abuse of the safeguards — but would
become the rule in the context of demographic and budgetary pressures on
Social Security and Medicare as the Baby Boom generation begins to
retire, around 2010.
Once legalized, physician-assisted suicide and euthanasia would
become routine. Over time doctors would become comfortable giving
injections to end life and Americans would become comfortable having
euthanasia as an option. Comfort would make us want to extend the option
to others who, in society's view, are suffering and leading purposeless
lives. The ethical arguments for physician-assisted suicide and
euthanasia, advocates of euthanasia have maintained, do not apply to
euthanasia only when it is voluntary; they can also be used to justify
some kinds of nonvoluntary euthanasia of the incompetent. Euthanasia
would come to be seen as “one end of a spectrum of caring for dying
patients,” as the philosopher and euthanasia defender Dan Brock writes.
“When viewed in this way,” he goes on, “it will be difficult to deny
euthanasia to a patient for whom it is seen as the best or most
appropriate form of care simply because that patient is now incompetent
and cannot request it.”
Advocates of physician-assisted suicide and euthanasia urge
legalization for reasons of compassion, but there is no guarantee that
the reasons offered in 1997 would remain the justification even a few
years ahead, under different social and economic circumstances. The
confluence of ethical arguments, medical practice, demographic and
budgetary pressures, and a social ethos that views the old and sick as
burdens would seem capable of overwhelming any barriers against
euthanasia for incompetent patients.
The proper policy, in my view, should be to affirm the status of
physician-assisted suicide and euthanasia as illegal. In so doing
we would affirm that as a society we condemn ending a patient's life and
do not consider that to have one's life ended by a doctor is a right.
This does not mean we deny that in exceptional cases interventions are
appropriate, as acts of desperation when all other elements of treatment
— all medications, surgical procedures, psychotherapy, spiritual care,
and so on — have been tried. Physician-assisted suicide and euthanasia
should not be performed simply because a patient is depressed, tired of
life, worried about being a burden, or worried about being dependent.
All these may be signs that not every effort has yet been made.
By establishing a social policy that keeps physician-assisted suicide
and euthanasia illegal but recognizes exceptions, we would adopt the
correct moral view: the onus of proving that everything had been tried
and that the motivation and rationale were convincing would rest on
those who wanted to end a life. Such a policy would recognize that
ending a life by physician-assisted suicide or euthanasia is an
extraordinary and grave event. To recognize a legal right to
physician-assisted suicide or euthanasia transforms the practices into
routine interventions that can be administered without the need for a
publicly acceptable justification. Doctors who end patients' lives would
no longer bear the burden of having to prove the appropriateness of
their action, if called upon to do so, but could simply justify their
action as a legally sanctioned procedure.
Advocates for legalization might find a policy that permits
exceptions to embody a double standard. But crafting a social policy in
this way would also embody what we know: not all cases are the same, and
among the millions of Americans who die each year there are morally
relevant differences that cannot be captured in an inflexible rule. We
must ensure that moral judgments are made in individual cases, and that
those who make them will be accountable before the law.
ACKNOWLEDGEMENT
Emanuel, Ezekiel. “Whose Right to Die?” The Atlantic Monthly
279, No. 3 (March, 1997): 73-79.
Published with the permission of Dr Ezekiel Emanuel.
THE AUTHOR
Dr. Ezekiel Emanuel is the Director of the Clinical Bioethics
Department at the National Institutes of Health, Bethesda, MD 20892.
Copyright © 1997 Ezekiel Emanuel. All rights reserved.
Atlantic Monthly
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