Euthanasia and Physician-Assisted Suicide
A Review of the Empirical Data From the United States
Author Information
<http://archinte.ama-assn.org/issues/v162n2/rfull/#aainfo> Ezekiel J.
Emanuel, MD, PhD
IRA10015
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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r1>
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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r6> , 7
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r7> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r8> At least 7 state
legislatures have voted to explicitly prohibit euthanasia and PAS. 9
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r9> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r10> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r11>
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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r5> , 12
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r12> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r5>
ATTITUDES OF THE AMERICAN PUBLIC
There have been innumerable surveys of the American public on euthanasia and
PAS. 13-15 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r13> 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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t1.html> ). 13
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r13> , 14
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r14> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r16> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r13> 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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t2.html> ).
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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r14> Indeed,
since the mid 1970s, support for these interventions has been constant (
Table 1
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t1.html> ).
Interestingly, this is similar to the trends found in the Netherlands. 17
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r17> 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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t2.html> ). 15
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r14> , 15
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> Despite arguments
by some philosophers suggesting that there is no moral difference, 18
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r18> more than 90% of
the public deem withdrawing life support as ethical, while at best 65%
support euthanasia or PAS. 15
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15>
Finally, certain sociodemographic characteristics consistently predict
support and opposition to euthanasia or PAS. 13-15
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r13> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r16> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r16>
ATTITUDES OF US PHYSICIANS
During the last decade, US physicians have been extensively surveyed about
euthanasia and PAS. 19-48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r19> Many of the
surveys, especially the early ones, are problematic in their methods. 5
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r5> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r16> , 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43>
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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t3.html> ).
19-48 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r19> 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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t3.html> ).
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 <http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t3.html> ).
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 al 32 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r32>
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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t3.html> ).
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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> , 20
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r20> , 25
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r25> , 29
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r29> , 37
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r37> , 47
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r47> , 48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> Only a few studies
19 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r19> , 35
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r35> , 37
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r37> , 42
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r42> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> This is different
from Dutch physicians, who do not seem to distinguish euthanasia and PAS. 47
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r47>
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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> , 21
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r21> , 25
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r25> , 29
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r29> , 32
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r32> , 33
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r33> , 38
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r38> , 42
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r42> , 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> , 47
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r47> , 48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> Similarly, surveys
have reported certain specialties as more supportive of euthanasia or PAS
than others. 29 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r29> , 31
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r31> , 33
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r33> , 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> , 48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> , 44
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r44> , 48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r15>
, 48 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> 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.
PRACTICES OF US PHYSICIANS
Numerous studies have documented the practices of US physicians regarding
euthanasia or PAS ( Table 4
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t4.html> ). 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 regions 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> ; 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> , 30
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r30> , 32-34
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r32> , 39
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r39> , 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> , 48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> 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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t4.html> ).
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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r34> , 39
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r39> , 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> , 45
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r45> For instance, Meier
et al 43 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> 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 al 45
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r45> 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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t4.html> ). 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 al 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> , 20
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r20> , 25
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r25> , 29
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r29> , 37
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r37> , 47
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r47> , 48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> This result may be
because physicians were classifying cases of terminating care as euthanasia.
As reported by Emanuel et al, 49
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r49> 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 al 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48>
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 al 34
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r34> 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 al 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> 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, Meier 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> and Emanuel 49
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r49> and their
colleagues provide similar data, at least as regards PAS ( Table 5
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t5.html> ).
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 al 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> and Emanuel et al
49 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r49> 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 al
49 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r49> reported that in
15% of cases PAS failed; that is, patients were given a prescription or
attempted suicide, but did not die. Ganzini et al 52
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r52> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r53> As Nuland 54
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r54> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r55> Ultimately, in
18.4% of PAS cases in the Netherlands, physicians intervened to administer
lethal medications, converting PAS cases into euthanasia. 53
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r53> 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.
ATTITUDES AND PRACTICES OF US NONPHYSICIAN HEALTH PROFESSIONALS
There have been at least 9 surveys of nonphysician health care professionals
(mostly nurses) regarding euthanasia and PAS ( Table 6
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t6.html> ). 38
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r38> , 56-64
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r56> 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
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t6.html> ).
ATTITUDES AND PRACTICES OF US PATIENTS
Although some studies have examined patients' wishes to hasten death and
suicidal ideation, only a few studies 15
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> , 16
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r16> , 52
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r52> , 53
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r53> , 65
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r65> have actually
examined the attitudes and experiences of US patients regarding euthanasia
and PAS ( Table 5
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t5.html> ).
Breitbart et al 50 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r50>
examined patients with human immunodeficiency virus and acquired
immunodeficiency disease syndrome (HIV/AIDS) in New York City; Ganzini et al
51 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r51> interviewed
patients with amyotrophic lateral sclerosis in Oregon; and Emanuel et al 15
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r53> , 65
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r65> There are
additional data on the practices of euthanasia and PAS among patients
determined to be terminally ill by their physicians. 16
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r16> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r53> Meier et al 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r66> and from the
Northern Territory, Australia, where all 7 patients who received euthanasia
when it was briefly legalized had cancer. 67
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r67>
Second, it appears that pain is not a major determinant of interest in or
use of euthanasia or PAS ( Table 5
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t5.html> ).
Almost all of these studiesas well as the interviews with physicians who
have administered euthanasia and PAS 34
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r34> , 43
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r43> have 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r65> Breitbart
et al 50 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r50> reported
that pain, pain intensity, and pain-related functional impairment were not
associated with interest in PAS among patients with HIV/AIDS. Emanuel et al
15 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r16>
Third, depression, hopelessness, and general psychological distress are
consistently associated with interest in PAS and euthanasia ( Table 5
<http://archinte.ama-assn.org/issues/v162n2/fig_tab/ira10015_t5.html> ).
Breitbart et al 50 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r50>
reported that depression and hopelessness were strongly related to interest
in PAS for patients with HIV/AIDS. Emanuel et al 15
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r15> 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 al
51 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r51> (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 al 16
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r16> reported that among
terminally ill patients, the extent of caregiving needs was associated with
interest in euthanasia or PAS. Ganzini et al, 51
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r51> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r66> In Oregon, the
proportion of all deaths by PAS reported to the Oregon Health Division is
0.09%. 53 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r53> Such a
low rate raises skepticism that not all cases of physician-assisted death
are reported. 54 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r54>
Emanuel et al 16 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r16>
have reported a rate of 0.4% among competent terminally ill US patients.
FUTURE EMPIRICAL RESEARCH REGARDING EUTHANASIA AND PAS
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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r46> 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
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r16> 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
studies 55 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r55> , 66
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r66> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r55> The
rate may be higher in the United States, given the expense and financial
problems associated with end-of-life care. 68
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r68> , 69
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r69> 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 <http://archinte.ama-assn.org/issues/v162n2/rfull/#r70> The
American Society of Clinical Oncology survey of US oncologists suggests that
there are instances of pediatric euthanasia or PAS. 48
<http://archinte.ama-assn.org/issues/v162n2/rfull/#r48> 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.
CONCLUSIONS
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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Diplomat American Board of Palliative Medicine.
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