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Physician-Assisted Death — A Last Resort?
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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
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
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
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 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.5,6,7,8,9
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.2,10
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
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.5,6,7,8,9
However, we found no relation between depression and interest in
assisted suicide among patients with ALS.3 A
stronger and more specific psychological mediator of the desire to
die may be hopelessness, which can occur in the absence of
depression.9
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
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
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
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
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.
References
Edward E.
Rylander, M.D.
Diplomat American
Board of Family Practice.
Diplomat American
Board of Palliative Medicine.