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The New England Journal of Medicine

BEditorial

Volume 346:1663-1665

May 23, 2002

Number 21

Physician-Assisted Death — A Last Resort?

During the past decade, patients with the uncommon disease amyotrophic
lateral sclerosis (ALS) have had a prominent role in the debate about
physician-assisted suicide and voluntary active euthanasia. In Canada and
Great Britain, patients with ALS have challenged legal bans on
physician-assisted death. A widely viewed videotape of a patient in the
Netherlands choosing euthanasia generated considerable controversy. In the
United States, millions watched Jack Kevorkian euthanize Thomas Youk, a
patient with ALS, on the CBS news program 60 Minutes.
As compared with patients with other terminal illnesses, those with ALS are
more likely to request physician-assisted death. Veldink et al. 1
<http://content.nejm.org/cgi/content/full/346/21/#R1>  report in this issue
of the Journal that in the Netherlands, patients with ALS are twice as
likely as patients with cancer to die with the assistance of a physician. In
Oregon, where assisted suicide for terminally ill patients was legalized by
the Death with Dignity Act, 5 percent of all deaths among patients with ALS
in 1999 were from assisted suicide, as compared with 0.4 percent of deaths
in the state among patients with cancer. 2
<http://content.nejm.org/cgi/content/full/346/21/#R2>  Even before the final
enactment of this legislation, 44 of 100 surveyed patients with ALS in
Oregon and Washington indicated that they planned to request a lethal
prescription. 3 <http://content.nejm.org/cgi/content/full/346/21/#R3>  One
third of these patients explicitly discussed their desire for a lethal
prescription during the month before they died, and all but one had
expressed an interest in assisted suicide when interviewed an average of 11
months earlier. 4 <http://content.nejm.org/cgi/content/full/346/21/#R4>  In
contrast, between 9 and 27 percent of surveyed patients with cancer in the
United States and Canada express a serious interest in hastened death,
assisted suicide, or euthanasia. 5
<http://content.nejm.org/cgi/content/full/346/21/#R5> , 6
<http://content.nejm.org/cgi/content/full/346/21/#R6> , 7
<http://content.nejm.org/cgi/content/full/346/21/#R7> , 8
<http://content.nejm.org/cgi/content/full/346/21/#R8> , 9
<http://content.nejm.org/cgi/content/full/346/21/#R9>
Studies of patients in Oregon who made explicit requests for assisted death
or who died by assisted suicide suggest that the loss of autonomy, control,
independence, and the ability to pursue pleasurable activities — all
hallmarks of ALS — often underlie requests for hastened death. 2
<http://content.nejm.org/cgi/content/full/346/21/#R2> , 10
<http://content.nejm.org/cgi/content/full/346/21/#R10>  Lavery et al., in a
qualitative study involving patients with human immunodeficiency virus
infection, describe the desire for assisted suicide as stemming from two
factors: fear of worsening symptoms and loss of function, and progressive
loss of the ability to maintain close personal relationships. 11
<http://content.nejm.org/cgi/content/full/346/21/#R11>  In advanced ALS,
immobility and difficulties with communication lead to isolation and
separation from others.
Depression can contribute to the desire to die. In surveys of patients with
cancer, depression is consistently associated with interest in hastened
death, assisted suicide, and euthanasia. 5
<http://content.nejm.org/cgi/content/full/346/21/#R5> , 6
<http://content.nejm.org/cgi/content/full/346/21/#R6> , 7
<http://content.nejm.org/cgi/content/full/346/21/#R7> , 8
<http://content.nejm.org/cgi/content/full/346/21/#R8> , 9
<http://content.nejm.org/cgi/content/full/346/21/#R9>  However, we found no
relation between depression and interest in assisted suicide among patients
with ALS. 3 <http://content.nejm.org/cgi/content/full/346/21/#R3>  A
stronger and more specific psychological mediator of the desire to die may
be hopelessness, which can occur in the absence of depression. 9
<http://content.nejm.org/cgi/content/full/346/21/#R9>  Dysphoria and
inability to experience pleasure in the present are cardinal features of
depression. Hopelessness projects these feelings into the future. In
patients with ALS, hopelessness, measured earlier in the course of the
disease, but not depression, strongly predicted an interest in assisted
suicide in the final month of life. 4
<http://content.nejm.org/cgi/content/full/346/21/#R4>  The invariability of
the progression of disease in ALS robs many patients of the hope that the
most dreaded symptoms can be avoided. The belief that tomorrow is likely to
be worse than today may be an important factor in these decisions.
Is it possible that patients with ALS have less access than other terminally
ill patients to palliation of suffering? Experts assert that with excellent
palliative care, most requests for hastened death would not be made. We know
little about the quality and availability of palliative care in the
Netherlands that would provide a context for the findings of Veldink et al.
Data reported voluntarily by ALS treatment centers throughout the United
States suggest that many therapeutic strategies that might improve the
quality of life for patients with ALS — including treatments for depression,
sialorrhea, hypoventilation, and dysphagia — are underused. 12
<http://content.nejm.org/cgi/content/full/346/21/#R12>  In this country,
almost half of the patients with ALS who die at home are enrolled in hospice
programs. Whether they receive excellent palliative care remains unclear.
For example, terminally ill patients greatly value not being a burden to
their families. 13 <http://content.nejm.org/cgi/content/full/346/21/#R13>
Yet, even among patients with ALS who are receiving home care services,
family members deliver an average of 11 hours of direct care per day. 14
<http://content.nejm.org/cgi/content/full/346/21/#R14>
What is needed in order to understand and address the preference of patients
with ALS for hastened death? First, the psychological defenses of health
care practitioners may result in a particular deafness to patients' reports
of the actual experience of living with progressive ALS. In focusing on
efforts to modify the progression of the disease, clinicians may fail to
attend adequately to the symptoms, the existential issues, the family
burden, and the hopelessness that patients face. This limited orientation is
certainly evident in research on ALS, which is dominated by studies of
pathogenesis, prevention, and cure.
Researchers must begin by listening to patients with ALS. Qualitative
studies could help define what in the experience of patients leads to a
desire for hastened death. We need prospective studies that can describe
accurately the physical and psychological symptoms and existential
viewpoints that predict the desire to die. As Veldink et al. report, 36
percent of patients with ALS in the Netherlands prepared advance directives
for euthanasia, so it might be possible to identify those who might be
interested in assisted suicide or euthanasia early enough in the course of
their illness to intervene. Studies designed to test a variety of
interventions among patients might answer critical questions as to the
mutability of the preference for early death. The ALS research community,
therefore, needs to advocate for more studies of the management of symptoms,
quality of life, the experience of patients, and interventions aimed at
reducing suffering. Such studies might bolster clinicians' confidence that
they can help patients with ALS, so that they would not reinforce the
hopelessness and fear these patients already feel.
Research efforts in ALS and other terminal diseases may reduce, but are
unlikely to eliminate, the desire for hastened death among terminally ill
patients. Our best palliative care, with meticulous attention to the whole
person — including physical, spiritual, psychological, and relational
aspects — may not change preferences that are based on values, life
experiences, and ingrained coping mechanisms. Nonetheless, efforts to pursue
intensive palliative treatments and to reduce suffering are warranted. Not
only do such efforts decrease interest in euthanasia, but they affirm
patients' humanity and have the potential to ameliorate the profound dread
that many people suffer as they face the end of life.
Physician-assisted death may be an acceptable option of last resort for a
very small number of terminally ill patients. At this point, we do not know
what rates of physician-assisted death are appropriate. High rates would
suggest that the procedure is not just being used as a humane approach to
eliminating intractable suffering at the request of the patient. Rather,
high rates could reflect deficiencies in the competence of health care
practitioners, lack of access to suitable services, devaluation of the
dying, or even pressures from others to end life prematurely. Judging from
our clinical and research experience with patients with ALS and cancer, the
rates of physician-assisted death that Veldink et al. report — 10 percent
among patients with cancer and 20 percent among patients with ALS — are
unacceptably high.
If society values the dying and can ensure respectful medical care for all
terminally ill patients, then legalized physician-assisted death should be
relevant in only a small number of cases. But this means that substantial
resources and cultural change are necessary. We need the resources to
improve the education of health care professionals, a commitment to ongoing
societal dialogue about the care of the dying, and a guarantee of universal
access to good care for all terminally ill persons, with monitoring of
quality to ensure that such care is provided. The challenge for states and
countries considering laws permitting physician-assisted death will be to
tie legalization to such a pledge.

Linda Ganzini, M.D.
Department of Veterans Affairs Medical Center
Portland, OR 97201

Susan Block, M.D.
Dana–Farber Cancer Institute
Boston, MA 02115
The views expressed in this article are those of the authors and do not
necessarily represent the views of the Department of Veterans Affairs.
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Edward E. Rylander, M.D.
Diplomat American Board of Family Practice.
Diplomat American Board of Palliative Medicine.