Euthanasia
and Physician-Assisted Suicide
A Review of the Empirical Data From the
United States
Ezekiel J. Emanuel, MD, PhD
ARCHIVES OF INTERNAL MEDICINE
January 28, 2002
Vol 162, No 2,
For
more than a decade, there has been an intense debate about the ethics and
legality of euthanasia and physician-assisted suicide (PAS) in the United
States.1-5 In June 1997,
the US Supreme Court unanimously ruled that there is neither a constitutional
right nor a constitutional prohibition to euthanasia or PAS.6, 7 This permitted Oregon
to experiment with legalizing PAS. During this decade, most other states have
consistently opposed legalization. In the weeks after the US Supreme Court
decision, the Florida Supreme Court also ruled that there is no constitutional
right to PAS.8 At least 7
state legislatures have voted to explicitly prohibit euthanasia and PAS.9 Indeed, a bill to
legalize euthanasia or PAS has been considered by a full chamber of a state
legislature in only one state, Maine, and that bill was defeated 99 to 42.10 In November 1998, 70%
of the voters of Michigan resoundingly defeated a referendum to legalize PAS,
while in November 2000 Maine voters also rejected legalizing PAS.11
The extensive debates for and against euthanasia
and PAS have made the arguments more refined, subtle, and sophisticated. Yet
the essential claimsarguments based on
patients' autonomy to control their own lives and beneficence in relieving
excruciating pain and sufferinghave remained remarkably
the same since the late 19th-century debates about euthanasia.5, 12 However, the current
debate has spawned significant and unprecedented empirical research,
illuminating many aspects of and claims about euthanasia and PAS. This article
reviews the empirical data about euthanasia and PAS in the United States
regarding: (1) the public's attitudes, (2) physicians' attitudes, (3)
physicians' practices and experiences, (4) nonphysician health care
professionals' attitudes and practices, and (5) patients' attitudes and
experiences. It will conclude with a summary of the most important question in
need of additional empirical inquiry.
In this article, whenever the term euthanasia is used, voluntary active euthanasia is meant.
Other forms of euthanasia, nonvoluntary or involuntary, have not been
extensively advocated or studied.5
There have been innumerable surveys of the
American public on euthanasia and PAS.13-15 Most information
derives from a few questions added to general surveys and do not probe deeply;
only a few surveys have been in-depth analyses. In general, opponents and
proponents of euthanasia or PAS endorse 4 conclusions from these data.
First, depending on how questions are worded and
the types of choices offered, public support for euthanasia or PAS can vary
widely, from about 34% to about 65% (Table 1).13, 14 In other words, some
Americans are firm in their views of euthanasia and PAS, while others are more
labile. The best way to understand public opinion might be by the "Rule of
Thirds." Roughly, one third of Americans seem to support voluntary active
euthanasia or PAS no matter what the circumstances. For instance, 29.3% of
Americans support euthanasia or PAS for terminally ill patients who are not in
pain but desire these interventions because they view life as meaningless.
Similarly, 36.2% support euthanasia or PAS for terminally ill patients who give
as their reason not wanting to be a burden on their family.16 These are the
approximate one third whose support for euthanasia or PAS is not affected by
the interventions, the patient's motivations, or the circumstances. Conversely,
another third or so of Americans oppose euthanasia or PAS no matter what the circumstances.
Almost all the surveys report the highest levels of support for euthanasia or
PAS to be about 65%.13-16 These data mean
that roughly one third of Americansthe
difference between 100% of the public and the 65% who support euthanasia for
patients in painoppose euthanasia or PAS
even for terminally ill patients who are experiencing unremitting pain, despite
optimal management. The remaining third or so of Americans constitute the
volatile public. They support euthanasia or PAS in some circumstances, usually
involving extreme pain, but oppose it in other circumstances, such as for
reasons of indignity or because the patient does not want to be a burden (Table 2).
Consequently, support for euthanasia or PAS is
not as extensive as the reports that two thirds of Americans support these
interventions make it appear. Furthermore, for few of these people is legalizing
euthanasia or PAS a leading issue, the primary element that will determine
their vote. In this sense, unlike abortion, euthanasia and PAS do not appear to
be litmus test issues.
Second, surveys that assess trends over time
indicate that the significant rise in support for euthanasia and PAS occurred
in the mid 1970s, not the 1990s.14 Indeed, since the mid
1970s, support for these interventions has been constant (Table 1).
Interestingly, this is similar to the trends found in the Netherlands.17 Consequently, the
extensive public debates during the last decade do not appear to have shifted
public opinion significantly.
Third, while medical ethicists, philosophers,
lawyers, and others have spent much time debating whether euthanasia is
fundamentally different from PAS and elucidating potential distinctions, the
American public does not seem to make much of the distinction. Polls show that
Americans support euthanasia at the same rate that they support PAS (Table 2).15 Conversely, the
public does distinguish withdrawing life support or providing pain medications,
even with the increased risk of respiratory depression and death from
euthanasia and PAS.14, 15 Despite arguments by
some philosophers suggesting that there is no moral difference,18 more than 90% of the
public deem withdrawing life support as ethical, while at best 65% support
euthanasia or PAS.15
Finally, certain sociodemographic
characteristics consistently predict support and opposition to euthanasia or
PAS.13-15 Catholics
and people who report themselves to be more religious are significantly more
opposed to euthanasia or PAS. Similarly, African Americans and older
individuals are significantly more opposed to euthanasia or PAS. Finally, some,
but not all, surveys suggest that women are significantly more opposed to
euthanasia or PAS. Interestingly, patients with terminal illnesses, such as
cancer and chronic obstructive pulmonary disease, have attitudes that are
almost identical to the public's.16 In other words,
having a serious, life-threatening illness itself does not seem to alter
attitudes toward the permissibility or opposition to euthanasia or PAS.
Similarly, being a caregiver for a terminally ill patient or a recently
bereaved caregiver does not seem to affect attitudes toward euthanasia or PAS.16
During the last decade, US physicians have been
extensively surveyed about euthanasia and PAS.19-48 Many of the
surveys, especially the early ones, are problematic in their methods.5 The surveyed cohorts
are narrow or biased, and the response rates are low. More important, questions
are frequently worded poorly and abstractly in a confusing, emotionally laden,
or biased manner. For instance, they often conflate terminating medical
treatments with euthanasia or ask whether euthanasia or PAS is never ethically
justified. Furthermore, many of the questions use multiple hypothetical
propositionsrequiring leaps of
imagination by respondentsthat are known to make
the data unreliable. For instance, physicians are frequently asked, if
euthanasia or PAS were legalized, would there be some circumstances in which
they would be willing to perform euthanasia or PAS? In addition, there has been
no consistency among the questions, making it difficult to compare the data
across different surveys. In recent years, the surveys have addressed some of
these problems, making the data more reliable, although there still appears to
be the problem that physicians confound euthanasia with terminating
life-sustaining treatments and euthanasia with PAS.16, 43
Surveys of physicians' attitudes have evaluated
3 issues that have not usually been clearly distinguished: (1) belief that
euthanasia or PAS is ethically justifiable, (2) support for legalization of
either intervention, and (3) willingness to perform either intervention (Table 3).19-48 The more reliable
surveys find that most US physicians do not view euthanasia or PAS as ethical.
The major exceptions seem to ask abstractly whether these interventions might
be justifiable "in some circumstances" (Table 3).
More typical are surveys that report that fewer than half of physicians support
euthanasia or PAS, or those in which respondents find suicide rational in some
cases but believe that physicians should not assist (Table 3).
Regarding legalization, among physicians there
seems to be no consistent pattern, probably because questions ask about
specific legislation that varies and because respondents may not be familiar
with the particular facets of the legislation. For instance, in a survey of
Michigan physicians, Bachman et al32 could demonstrate
most physicians (56.6%) supporting PAS only when they were forced to choose
either legalization or an explicit ban; without being forced into this choice,
only 38.9% supported permitting PAS. Consistently, few physicians would be
willing to perform euthanasia or PAS if either were legalized (Table 3).
These data demonstrate another important factor:
unlike the American public, US physicians distinguish between euthanasia and
PAS. They are much more likely to support providing PAS than euthanasia.15, 20, 25, 29, 37, 47, 48 Only a few studies19, 35, 37, 42 have found most
physicians supporting euthanasia. Therefore, unlike the American public,
support for euthanasia or PAS among US physicians crucially depends on the
intervention being asked about.15 This is different
from Dutch physicians, who do not seem to distinguish euthanasia and PAS.47
There are important factors associated with
support for euthanasia or PAS. Like the American public, US physicians who are
Catholic or religious are significantly less likely to support euthanasia or
PAS.15, 21, 25, 29, 32, 33, 38, 42, 43, 47, 48 Similarly, surveys
have reported certain specialties as more supportive of euthanasia or PAS than
others.29, 31, 33, 43, 48 Surgical oncologists
are more likely to support euthanasia or PAS than medical oncologists.
Psychiatrists and obstetricians and gynecologists are more supportive of
euthanasia or PAS, with internists, especially oncologists, less supportive.
Still, others have found family or general practitioners as more supportive
than internists.
Finally, at least among US oncologists, there
appears to be a significant decline in support for euthanasia or PAS between
the early and late 1990s.15, 44, 48 Between 1994 and
1998, support for euthanasia and PAS significantly declined among oncologists
in the scenario of a patient terminally ill with cancer who had unremitting
pain.15, 48 Although it is hard
to know precisely why this decline has occurred, 2 explanations seem
reasonable. The recent focus on end-of-life care has revealed the multiplicity
of interventions, besides euthanasia and PAS, that can be used to improve the
quality of life of the terminally ill. Consequently, euthanasia and PAS seem
less necessary and desirable to ensure good end-of-life care. Furthermore,
support tends to be higher when considering euthanasia and PAS in the abstract,
as a philosophical question. But as they become more real and personal and
physicians may be called on to actually perform these interventions, physicians
are likely to be less supportive. This may also partially explain why
psychiatrists, obstetricians, surgeons, and others who rarely care for
terminally ill patients are more supportive than oncologists.
Numerous studies have documented the practices
of US physicians regarding euthanasia or PAS (Table 4).
The precise proportion of physicians who have received such requests is unclear
because there is significant variation in the reported frequencies. The
different reported rates of requests for euthanasia and PAS may reflect
methodological issues, such as: (1) the differences between mailed and
telephone surveys; (2) the different dates of the surveys, with physicians
being more willing to acknowledge performing these interventions in later
years, as the debate becomes more public and accepted; (3) the different
regions of the country, with those in the West having requests more frequently
than those in the New England or North Central regions43; and (4) the
different investigators, with physicians more willing to acknowledge performing
these interventions when the survey comes from investigators from the same
state or a colleague in the same specialty.15, 30, 32-34, 39, 43, 48 However, in general,
it appears that oncologists have received many more requests than
nononcologists. Fewer than 20% of nononcologists have received requests for
PAS, while it appears that among oncologists as many as 50% have received
requests for euthanasia or PAS (Table 4).
This is probably because oncologists are more likely to care for dying patients
than internists, surgeons, neurologists, or other physicians. Nevertheless,
even among oncologists, the survey results vary considerably, suggesting
residual methodological issues.
In general, physicians who have received
requests have received few requests.34, 39, 43, 45 For instance, Meier
et al43 report that,
overall, physicians who received requests for PAS received a median of 3
requests (range, 1-100) in their careers and a median of 4 requests (range,
1-50) for euthanasia. Carver et al45 reported that, among
neurologists who received requests, the mean number of requests for PAS was 7
and was 5 for euthanasia.
Many studies indicate that a small, but
definite, proportion of US physicians have performed euthanasia or PAS, despite
its being illegal. Again, the data provide conflicting evidence on the precise
frequency of such interventions, with reported frequencies varying more than
6-fold even among the best studies (Table 4).
As with requests, oncologists generally report having performed euthanasia or
PAS more frequently. Much of this variation may be attributable to the reasons
already cited, especially the differences in specialties. However, there is
another methodological concern. The study by Meier et al43 is the only study to
have reported that more US physicians perform euthanasia than PAS. This finding
contrasts with the data showing that US physicians are significantly more
supportive of PAS than euthanasia.15, 20, 25, 29, 37, 47, 48 This result may be
because physicians were classifying cases of terminating care as euthanasia. As
reported by Emanuel et al,49 despite careful
wording, physicians frequently confound euthanasia and terminating
life-sustaining treatments, and this may be more common and harder to control
for in mailed rather than telephone surveys.
When US physicians have performed euthanasia or
PAS, they have done so rarely. Meier et al43 reported that the median
number of PAS cases was 2 (range, 1-25), and the median number of euthanasia
cases also 2 (range, 1-150). A recent survey of oncologists by the American
Society of Clinical Oncology reported that, of those who had performed PAS, 37%
had done so only once in their careers, while 18% had done so 5 or more times.48 Similarly, among the
US oncologists who had performed euthanasia, more than half had done so only
once, and just 12% had done so 5 or more times.48
Beyond the rates of requests and performance of
euthanasia and PAS, what do physicians do when they receive a request and when
they perform euthanasia or PAS? Back et al34 reported that
initially 76% of physicians increased treatment of physical symptoms, 65%
treated depression and anxiety, and 24% referred the patient for a psychiatric
evaluation. Similarly, Meier et al43 reported that 71% of
physicians responded to requests for euthanasia or PAS by increasing analgesic
treatment, while 30% used fewer life-prolonging therapies and 25% prescribed
antidepressants.
Regarding the actual performance of euthanasia
and PAS, Meier43 and Emanuel49 and their colleagues
provide similar data, at least as regards PAS (Table 5).
They show that, while safeguards are adhered to overall, there are a myriad of
problems. For instance, although most patients initiated the request for PAS,
almost half of them did not repeat the request. Most important, both studies
show that about 5% of patients were unconscious at the time of death and could
not, therefore, provide concurrent consent. More than 95% of patients had
severe symptoms, but according to Meier et al, only 54% had significant pain,
while according to Emanuel et al, 84% of the patients with cancer who received
PAS had substantial pain. In 40% to 54% of cases, the patients were getting
hospice care, at least one measure of quality end-of-life care. Similarly, in
many cases, patients who receive PAS had long-term relationships (>1 year)
with their physicians. Finally, there are divergent data, ranging from 20% to
40%, on what proportion of patients provided with medications or a prescription
ultimately does not use them. Differences in underlying disease may partially
account for differences in the data between these 2 studies; Meier et al
provide data on patients with many different terminal illnesses, whereas
Emanuel et al interviewed oncologists and provided data on patients dying of
cancer.
Two studies have examined the effect on
physicians of performing euthanasia or PAS. Meier et al43 and Emanuel et al49 reported that most
physicians were comfortable with having performed euthanasia or PAS. According
to Meier et al, 19% of physicians were uncomfortable after performing PAS, and
12% were uncomfortable after performing euthanasia. (This lower proportion of
uncomfortableness after performing euthanasia may reflect that many of these
so-called euthanasia cases were actually cases of terminating life-sustaining
treatments.) They also found that in similar circumstances only 1% would not
comply with PAS and 7% would not comply with euthanasia. Emanuel et al reported
that 25% regretted performing euthanasia or PAS and that 15% had adverse
emotional reactions to performing euthanasia or PAS. At least in the cases
reported by Emanuel et al, these reactions did not seem related to fear of
prosecution.
Finally, there is some disagreement about failed
PAS attempts. Emanuel et al49 reported that in 15%
of cases PAS failed; that is, patients were given a prescription or attempted
suicide, but did not die. Ganzini et al52 recently reported
that there had been no failed PAS attempts in Oregon since legalization. The
reports from the first 2 years' experience by the Oregon Health Division,
Portland, also show no failed PAS attempts.53 As Nuland54 notes, the lack of
problems with PAS in these reports from Oregon contrasts with the recently
reported Dutch experience, in which 7% of PAS cases had complications and in
16% it was taking "longer than expected."55 Ultimately, in 18.4%
of PAS cases in the Netherlands, physicians intervened to administer lethal
medications, converting PAS cases into euthanasia.53 The importance of
this for the United States relates to the possibility of legalizing PAS without
legalizing euthanasia, and what is to be done in the cases of failed PAS. As
the data demonstrate, in the Netherlands, the accepted norm is to administer
lethal medicationsthat is, perform
euthanasiain cases of failed PAS.
This would not be permitted in the United States if euthanasia remains illegal.
If the data from Emanuel et al and the Dutch investigators are correct, there
may be serious dilemmas for physicians if PAS is legalized but euthanasia is
not.
There have been at least 9 surveys of
nonphysician health care professionals (mostly nurses) regarding euthanasia and
PAS (Table 6).38, 56-64 Overall, these
studies are not as rigorous in their methods as the best studies of physicians
or patients. They demonstrate that about half of nonphysician health
professionals support euthanasia or PAS in some circumstances, and that fewer
than one third have received requests for euthanasia or PAS. Again, the type of
religion and the strength of religious beliefs are associated with support for
euthanasia and PAS. The data regarding performance of euthanasia or PAS by
nurses vary widely, with one study showing that about 16% have participated in
euthanasia or PAS, and others showing that fewer than 5% have done so (Table 6).
Although some studies have examined patients'
wishes to hasten death and suicidal ideation, only a few studies15, 16, 52, 53, 65 have actually
examined the attitudes and experiences of US patients regarding euthanasia and
PAS (Table 5).
Breitbart et al50 examined patients
with human immunodeficiency virus and acquired immunodeficiency disease
syndrome (HIV/AIDS) in New York City; Ganzini et al51 interviewed patients
with amyotrophic lateral sclerosis in Oregon; and Emanuel et al15 surveyed patients
with cancer in Massachusetts. In addition, there are data reporting on the
first 2 years' experience of legalized PAS in Oregon, involving some 43 cases.53, 65 There are additional
data on the practices of euthanasia and PAS among patients determined to be
terminally ill by their physicians.16 Four major
conclusions can be drawn from these data.
First, mainly patients with cancer use
euthanasia and PAS. Among the first 43 cases of PAS in Oregon, 72% of the
patients had cancer.53 Meier et al43 report that among
patients receiving PAS, 70% had cancer, while among those receiving euthanasia,
only 23% had cancer. These data are comparable to the data from the
Netherlands, in which 80% of euthanasia and 78% of PAS cases involved patients
with cancer,66 and from the
Northern Territory, Australia, where all 7 patients who received euthanasia
when it was briefly legalized had cancer.67
Second, it appears that pain is not a major
determinant of interest in or use of euthanasia or PAS (Table 5).
Almost all of these studiesas well as the interviews
with physicians who have administered euthanasia and PAS34, 43have shown that pain is not a predictor of patients' interest in
euthanasia or PAS. For instance, among the patients receiving PAS in Oregon,
only 1 of 15 had uncontrolled pain.65 Breitbart et al50 reported that pain,
pain intensity, and pain-related functional impairment were not associated with
interest in PAS among patients with HIV/AIDS. Emanuel et al15 reported that for
oncology patients, pain was not associated with personal interest in euthanasia
or PAS. However, they did find that for terminally ill patients, pain was among
the factors associated with personally considering euthanasia or PAS.16
Third, depression, hopelessness, and general
psychological distress are consistently associated with interest in PAS and
euthanasia (Table 5).
Breitbart et al50 reported that
depression and hopelessness were strongly related to interest in PAS for
patients with HIV/AIDS. Emanuel et al15 reported that, for
oncology patients and terminally ill patients, depressive symptoms were associated
with personal interest in euthanasia or PAS, such as discussing these
interventions and hoarding drugs for the purpose of PAS. Ganzini et al51(p968) reported that
hopelessness, but not depression, was associated with "considering taking
a prescription for a medicine whose sole purpose was to end my life."
Fourth, Emanuel et al16 reported that among
terminally ill patients, the extent of caregiving needs was associated with
interest in euthanasia or PAS. Ganzini et al,51 however, reported
that there was not an association between the burden of caring for the patients
and whether caregivers supported or opposed a patient's request for PAS.
Although it is known that PAS and euthanasia
occur in a small proportion of all deaths, what is not known is the precise
frequency these interventions are used. In the Netherlands, 3.4% of all deaths
are by euthanasia and PAS, including involuntary euthanasia.66 In Oregon, the
proportion of all deaths by PAS reported to the Oregon Health Division is
0.09%.53 Such a low
rate raises skepticism that not all cases of physician-assisted death are reported.54 Emanuel et al16 have reported a rate
of 0.4% among competent terminally ill US patients.
There are 6 major areas related to euthanasia
and PAS in need of additional research in the United States. First, there are
few data on the relationship between euthanasia or PAS and the provision of
optimal end-of-life care. Are euthanasia and PAS used as truly last-ditch
interventions for patients refractory to appropriate end-of-life interventions?
Or are they used as substitutes for optimal end-of-life care? The American
Society of Clinical Oncology survey suggested that there was a relationship
between not being able to get dying patients all the care they needed and use
of euthanasia and PAS.46 This result needs
confirmation. Furthermore, we need to understand what are the predictors of
physicians who come to use euthanasia and PAS only after trying optimal care,
vs those who use these interventions as a substitute. Is this the result of
structural or financial barriers to optimal end-of-life care, or is it the
result of problems on the part of physicians, such as lack of training in
end-of-life care?
Second, there are divergent data on how
frequently PAS fails and no data on what is done when it does fail. If, in the
United States, only PAS will be legalized, what do physicians do when it fails?
Third, there is no information on the short- and
long-term effects of euthanasia and PAS on the surviving family members of the
patients.16 Immediately
after the interventions, families may have the psychological need to be
supportive of the decision and believe that the right thing was done. However,
with the passage of time, they may have different views.
Fourth, there are conflicting data on the actual
frequency of euthanasia and PAS. These interventions occur, but how frequently?
It may be that conducting a death certificate follow-back study modeled on the
Dutch studies55, 66 will be the best way
to obtain accurate data on the frequency of these interventions, as well as the
reasons for the interventions, the palliative measures taken, and the effects
on the family.
Fifth, there are no data on the frequency of
nonvoluntary euthanasia in the United States. In the Netherlands, nonvoluntary
euthanasia occurs in 0.7% of all deaths.55 The rate may be
higher in the United States, given the expense and financial problems
associated with end-of-life care.68, 69 Issues of coercion
and of performing euthanasia on patients who are not competent are serious, and
there are inadequate data on these events in the United States.
Finally, there are no data on euthanasia and PAS
among children. Although death is rare among children, annually there are
several thousand deaths among children with cancer and HIV/AIDS. These deaths
tend to occur after significant and prolonged illnesses, and symptom management
is less than optimal.70 The American Society
of Clinical Oncology survey of US oncologists suggests that there are instances
of pediatric euthanasia or PAS.48 Why these occur and
how they are handled are also important and controversial issues.
Unfortunately, each of these issues is difficult
to study because euthanasia and PAS are rare events, requiring screening of
many physicians to identify just a few cases. Therefore, such studies will be
large and expensive.
During the last decade, there has been a
substantial amount of empirical research conducted on euthanasia and PAS in the
United States. This empirical research has revealed many unexpected findings
that have significantly affected the public debate. Such findings include: (1)
Public support for euthanasia and PAS is closely linked with the reasons
patients want these interventions; most of the public support the interventions
only for patients in excruciating pain. (2) Yet, pain does not appear to be the
primary factor motivating patients to request euthanasia and PAS; depressive
symptoms, hopelessness, and other psychological factors appear to motivate patients'
requests for euthanasia and PAS. Therefore, public support conflicts with the
actual facts about patient interest in euthanasia and PAS. (3) Euthanasia and
PAS occur, albeit at a low rate. Indeed, more than 99% of all dying Americans
do not have these interventions, and even in the Netherlands, more than 96% of
all decedents do not have these interventions.
Author/Article Information
From the Department of Clinical Bioethics, Warren G. Magnuson Clinical Center,
National Institutes of Health, Bethesda, Md.
Corresponding author and reprints: Ezekiel J. Emanuel, MD, PhD, Department of
Clinical Bioethics, Warren G. Magnuson Clinical Center, Bldg 10, Room 1C118,
National Institutes of Health, Bethesda, MD 20892-1156.
Accepted for publication May 1, 2001.
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Edward E.
Rylander, M.D.
Diplomat American
Board of Family Practice.
Diplomat American
Board of Palliative Medicine.