ArticlePDF Available

End-of-Life Practices in the Netherlands under the Euthanasia Act

Authors:

Abstract and Figures

In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation.
Content may be subject to copyright.
T h e
n e w e n gl a n d j o u r n a l
o f
m e d i c i n e
n engl j med 356;19 www.nejm.org may 10, 2007
1957
special article
End-of-Life Practices in the Netherlands
under the Euthanasia Act
Agnes van der Heide, M.D., Ph.D., Bregje D. Onwuteaka-Philipsen, Ph.D.,
Mette L. Rurup, Ph.D., Hilde M. Buiting, M.Sc., Johannes J.M. van Delden, M.D., Ph.D.,
Johanna E. Hanssen-de Wolf, M.Sc., Anke G.J.M. Janssen, M.A.,
H. Roeline W. Pasman, Ph.D., Judith A.C. Rietjens, Ph.D., Cornelis J.M. Prins, M.Sc.,
Ingeborg M. Deerenberg, M.Sc., Joseph K.M. Gevers, Ph.D.,
Paul J. van der Maas, M.D., Ph.D., and Gerrit van der Wal, M.D., Ph.D.
From Erasmus Medical Center, Rotterdam
(A.H., H.M.B., J.A.C.R., P.J.M.); Vrije Uni-
versiteit Medical Center, Amsterdam
(B.D.O.-P., M.L.R., J.E.H.-W., H.R.W.P.,
G.W.); University Medical Center, Utrecht
(J.J.M.D.); Academic Medical Center, Am-
sterdam (A.G.J.M.J., J.K.M.G.); and Sta-
tistics Netherlands, Voorburg (C.J.M.P.,
I.M.D.) — all in the Netherlands. Address
reprint requests to Dr. van der Heide at
the Department of Public Health, Eras-
mus Medical Center, P.O. Box 2040, 3000
CA Rotterdam, the Netherlands, or at
a.vanderheide@erasmusmc.nl.
N Engl J Med 2007;356:1957-65.
Copyright © 2007 Massachusetts Medical Society.
A b s t r a c t
Background
In 2002, an act regulating the ending of life by a physician at the request of a patient
with unbearable suffering came into effect in the Netherlands. In 2005, we performed
a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life
practices.
Methods
We mailed questionnaires to physicians attending 6860 deaths that were identified
from death certificates. The response rate was 77.8%.
Results
In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and
0.1% were the result of physician-assisted suicide. These percentages were signifi-
cantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia
and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of
life without an explicit request by the patient. Continuous deep sedation was used
in conjunction with possible hastening of death in 7.1% of all deaths in 2005, signifi-
cantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted
suicide in 2005, life was ended with the use of neuromuscular relaxants or barbitu-
rates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia
or assisted suicide were reported. Physicians were most likely to report their end-of-
life practices if they considered them to be an act of euthanasia or assisted suicide,
which was rarely true when opioids were used.
Conclusions
The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthana-
sia and physician-assisted suicide. The decrease may have resulted from the increased
application of other end-of-life care interventions, such as palliative sedation.
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
T h e
n e w e n gl a n d j o u r n a l
o f
m e d i c i n e
n engl j med 356;19 www.nejm.org may 10, 2007
1958
T
he increasing importance of chron-
ic diseases as a cause of death and the
attention currently being paid to patient-
centered care at the end of life have created inter-
est in the role of medicine in the timing and mode
of death and dying.
1
In many instances, death is
not merely the result of the natural course of a
lethal disease: medical decision making often
contributes.
2-5
Such decision making concerns the
use of medical treatment to prolong the life of
seriously ill patients. Furthermore, the alleviation
of severe symptoms sometimes involves the use
of drugs that have as a potential side effect the
shortening of life. Difficult situations can occur
when patients feel that their suffering is unbear-
able, feel hopeless, and ask their physician to help
them to terminate their life. In most countries,
physicians are not allowed to grant such a request,
although physician assistance in dying is now a
topic of debate in many countries.
6-8
In the Netherlands, euthanasia is defined as
death resulting from medication that is admin-
istered by a physician with the explicit intention
of hastening death at the explicit request of the
patient.
9
In assisted suicide, the patient self-
administers medication that was prescribed by
a physician. In the early 1990s, the practices of
euthanasia and physician assistance in suicide
were liable to legal prosecution in the Netherlands.
The public prosecutor mostly dismissed physi-
cians from prosecution if they were found to have
adhered to a number of requirements. Research
in 1990 indicated that the reporting rate for eu-
thanasia and physician assistance in suicide was
only 18.0%.
10
After the official establishment of
a reporting procedure in 1993, the reporting rate
increased to 40.7% in 1995.
11
The reporting procedure was updated in 1998
to involve the initial review of the deaths by multi-
disciplinary review committees that advised the
public prosecutor about whether or not the re-
quirements for careful practice had been fulfilled.
As a result, the reporting rate further increased
to 54.1% in 2001.
12
The reporting procedure was
widely endorsed by physicians, and the review
committees only rarely found serious violations
of the requirements for careful practice. Further-
more, the frequencies of euthanasia and assisted
suicide seemed to have stabilized in 2001.
13
Non-
reporting was most common in cases in which
physicians had administered opioids rather than
neuromuscular relaxants or barbiturates.
14
In April 2002, after three decades of debate
and research, the Euthanasia Act was passed to
regulate the ending of life by a physician at the
request of a patient who was suffering unbear-
ably without hope of relief. The act officially legal-
ized euthanasia and physician-assisted suicide for
the first time, but in effect it simply legalized an
existing practice, since physicians had not been
prosecuted for actions to end the lives of pa-
tients as long as the actions were consistent with
the standards of care that had been established in
the early 1990s. The most important change was
that, under the act, the review committees for-
ward to the legal prosecutor only cases in which
the requirements for careful practice are not met.
Physician assistance in dying is also legally
regulated in other countries. The Oregon Death
with Dignity Act legalizing physician-assisted sui-
cide was enacted into law in 1997, and in 2002
Belgium adopted a law on euthanasia that is
largely similar to the Dutch law.
15-19
However,
the Netherlands is the first country where large-
scale research has provided insight into the prac-
tices of euthanasia and assisted suicide and their
use in end-of-life decision making. Large nation-
wide studies of practices in 1990, 1995, and 2001
have provided data on the frequency and character-
istics of euthanasia, physician-assisted suicide, and
other medical acts that may hasten death.
10,13,20
These studies have proved the importance of
end-of-life decision making in current medical
practice, and they have had a major influence on
national policymaking and the further develop-
ment of end-of-life care. In 2005, we performed
a follow-up study to assess the effects of the
2002 Dutch law and changes in end-of-life care.
We also assessed the reporting rates for eutha-
nasia and assisted suicide and physiciansreasons
for nonreporting.
M e t h od s
Study Design
We performed a death-certificate study that was
largely similar to the large-scale studies of prac-
tices in 1990, 1995, and 2001.
10,13,20
A stratified
sample of death cases was drawn from the cen-
tral death registry of Statistics Netherlands, which
receives death certificates for all deaths that oc-
cur in the Netherlands. All 43,959 deaths that
occurred between August and November 2005 were
assigned to one of five strata, which were denoted
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
End -of-Life Pr ac tices in the Ne ther lands under the Eu thanasia Ac t
n engl j med 356;19 www.nejm.org may 10, 2007
1959
1 through 5. When
the cause of death was one in
which it was clear that no physicians assistance
in dying could have been provided (e.g., sudden
death from a car accident), the death was
as-
signed to stratum 1. These cases were retained
in the sample,
but no questionnaires were sent to
the physicians, because no
further information
was needed to determine that no physicians as-
sistance in dying had been provided. When
the
likelihood that a physician’s assistance in dying
had been provided was deemed to be high, the
death was assigned
to stratum 5. The final sam-
ple contained half the cases in stratum 5, 25% of
the cases in stratum 4, 12.5% of those in stra-
tum
3, 8.3% of those in stratum 2, and all cases in
stratum 1.
For all sampled cases for which the cause of
death did not preclude physician assistance in dy-
ing, attending physicians were mailed a four-page
questionnaire (see the Supplementary Appendix,
available with the full text of this article at www.
nejm.org). The anonymity of both physicians and
patients was guaranteed, because returned ques-
tionnaires were opened only after all information
about the identities of the patient and physician
had been removed.
Questionnaire
The questionnaire was mailed with a letter signed
by the Chief Inspector for Health Care and the
president of the Royal Dutch Medical Association.
Of the 6860 questionnaires that were mailed to
physicians, 5342 were returned (response rate,
77.8%). According to Dutch policy, the study did
not require review by an ethics committee or
written informed consent from the patientsfami-
lies, because the data collection was anonymous
with regard to the deceased patient and the attend-
ing physician.
The questionnaire focused on the characteris-
tics of the end-of-life decision making that may
have preceded the death of the patient involved.
There were four key questions, addressing wheth-
er the respondent had withheld or withdrawn
medical treatment while taking into account the
possible hastening of death; had intensified mea-
sures to alleviate pain or other symptoms while
taking into account the possible hastening of
death or appreciating that possibility; had with-
held or withdrawn medical treatment with the
explicit intention of hastening death; or had ad-
ministered, supplied, or prescribed drugs with the
explicit intention of hastening death, resulting in
the patient’s death.
The wording of these questions was identical
to that in the previous studies. If the last of the
four key questions was answered affirmatively
and if the act was performed in response to an
explicit request by the patient, the act was classi-
fied as euthanasia if the physician had adminis-
tered (or had assisted in administering) the drug
and was classified as physician-assisted suicide
if the patient had taken the drug himself or her-
self. For cases in which physicians responded
affirmatively to more than one of the four key
questions, the act that involved the most explicit
intention with regard to the hastening of death
was used to classify the act. For cases in which
there was no single most explicit intention, the
administration of drugs prevailed over the with-
holding or withdrawing of treatment.
The key questions were followed by questions
about the decision-making process, the type of
drugs that had been used, and the degree to which
death had been hastened, as estimated by the
physician. We also asked whether the patient had
been deeply and continuously sedated before
death. Our questionnaire also contained new
questions about whether or not cases were report-
ed as required by the Euthanasia Act, as well as
about the reasons for nonreporting. Physicians
were further asked to choose the term that they
thought best described their act: refraining from
treatment, alleviation of symptoms, palliative or
terminal sedation, ending of life, assisted suicide,
or euthanasia.
Statistical Analysis
The percentages reported were weighted to adjust
for differences in the percentages of deaths sam-
pled from each of the five strata and differences
in response rates in relation to the age, sex, mari-
tal status, region of residence, and cause and place
of death of the patients. After adjustment, the
percentages were extrapolated to cover a 12-month
period, to reflect the 136,402 deaths in the Nether-
lands in 2005. Weighting factors were calculated
in three steps. First, the inverse of the percentage
of deaths sampled from each stratum was taken.
The resulting factor was multiplied by a second
factor that was calculated by dividing the sam-
pled number of deaths by the number of deaths
for which we received a questionnaire from the
physician for each combination of characteristics
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
T h e
n e w e n gl a n d j o u r n a l
o f
m e d i c i n e
n engl j med 356;19 www.nejm.org may 10, 2007
1960
of patients. The weighting factor that resulted
from steps 1 and 2 was multiplied by a factor that
was calculated in the third step, by dividing the
actual number of cases in the population of de-
ceased persons in 2005 for each combination of
characteristics of patients by the number of cases
from the first two weighting steps.
Confidence intervals were calculated for the
estimates of the rates of euthanasia, assisted sui-
cide, and other end-of-life practices. Rates across
years were compared with the use of chi-square
tests. Logistic-regression analysis was performed
to assess the factors that helped to determine the
physicianslabeling of their acts. All statistical
procedures took into account the weighting pro-
cedure by standardizing the weighting factors to
the actual total number of cases. P values of less
than 0.05 were considered to indicate statistical
significance.
R e s ult s
In 2005, 1.7% of all deaths in the Netherlands
were the result of euthanasia, as compared with
2.6% in 2001, 2.4% in 1995, and 1.7% in 1990
(
Table 1
). Assisted suicide was less common than
euthanasia in each year and, like the euthanasia
rate, declined in frequency in 2005. Furthermore,
0.4% of all deaths were the result of the use of
lethal drugs not at the explicit request of the pa-
tient; this percentage was not significantly dif-
ferent from those in previous years. Intensified
alleviation of symptoms as the most important
end-of-life decision increased in frequency from
20.1% in 2001 to 24.7% in 2005. However, the per-
centage of cases in which physicians intensified
the alleviation of symptoms, rather than only cases
in which that action was most important, were
similar: 30.1% in 2001 and 30.2% in 2005. The
withholding or withdrawing of potentially life-
prolonging treatment as the most important de-
cision decreased in frequency from 20.2% in 2001
to 15.6% in 2005. These percentages were 30.4%
and 27.5%, respectively, when all cases involving
the withholding or withdrawing of life-prolong-
ing treatment were included, rather than only cases
in which that action was most important. Of all
deceased patients in 2005, 8.2% were continu-
ously and deeply sedated before death. Such seda-
tion was provided in conjunction with decisions
that possibly hastened death, such as decisions
to withhold hydration and nutrition, in 7.1% of
deaths in 2005, as compared with 5.6% in 2001.
In the remaining 1.1% of patients who were se-
dated, the sedation was not provided in conjunc-
tion with decisions that possibly hastened death.
(No figure is available for 2001.)
We had data from 2005 and 2001 about the
rates of euthanasia, assisted suicide, ending of
life without an explicit request by the patient, and
continuous deep sedation in conjunction with
possible hastening of death in various subgroups
of patients (
Table 2
). The rates in 1995 and 1990
(data not shown) were similar to those in 2001.
In both 2005 and 2001, the highest rates of eu-
thanasia or assisted suicide were found for pa-
tients aged 64 years or younger, for men, and for
patients with cancer. Furthermore, most acts of
euthanasia or assisted suicide were carried out
by general practitioners. The rate of euthanasia or
assisted suicide was lower in 2005 than in 2001
for both sexes, all age groups, patients with all
diagnoses, and all physician specialties. The rate
of the ending of life without an explicit request
by a patient was similar in each subgroup. Like
euthanasia and assisted suicide, continuous deep
sedation in conjunction with the possible hasten-
ing of death in 2005 was used most often in pa-
tients aged 64 years or younger, in men, and in
patients with cancer; the rates of this practice in
these subgroups were higher than those in 2001.
Before end-of-life decisions were made, physi-
cians discussed euthanasia and assisted suicide
with all patients whose death was caused by ei-
ther act (
Table 3
). The physician also discussed
the decision to perform euthanasia or assisted
suicide with relatives of the patient in 75.5% of
deaths in 2005 and with one or more colleagues
in 87.7% of deaths. When life was ended without
the explicit request of the patient, there had been
discussion about the act or a previous wish of the
patient for the act in 60.0% of patients, as com-
pared with 26.5% in 2001. In 2005, the ending
of life was not discussed with patients because
they were unconscious (10.4%) or incompetent
owing to young age (14.4%) or because of other
factors (15.3%). Of all cases of the ending of life
in 2005 without an explicit request by the patient,
80.9% had been discussed with relatives. In 65.3%
of cases, the physician had discussed the decision
with one or more colleagues.
In 73.9% of all cases of euthanasia or assisted
suicide in 2005, life was ended with the use of
neuromuscular relaxants or barbiturates; opioids
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
End -of-Life Pr ac tices in the Ne ther lands under the Eu thanasia Ac t
n engl j med 356;19 www.nejm.org may 10, 2007
1961
were used in 16.2% of all cases. In the same year,
the ending of life without an explicit request by
the patient more frequently involved the use of
opioids (58.5%). Physicians were asked to estimate
the amount of time by which life was shortened
owing to the use of lethal drugs. In 2005, life
was estimated to have been shortened by at least
1 week in 53.9% of all cases of euthanasia or
assisted suicide and in 11.6% of all cases of the
ending of life without an explicit request by the
patient. The type of drugs used and the extent to
which life was shortened were similar in 2005
and 2001.
In absolute terms, the numbers of cases of
euthanasia or assisted suicide in 2005 were 2297
and 113, respectively. The review committees eval-
uated 1933 of the 2410 cases in 2005, with a
reporting rate of 80.2%. For 28 cases, the physi-
cians were asked about the reasons for nonreport-
ing; for 76.1% of these cases, physicians answered
that they had not perceived their act as the end-
ing of life. Other reasons given were that the
physician had doubts about whether the criteria
for careful practice had been met (9.7%) or that
the physician regarded the ending of life as a
private agreement between physician and patient
(6.6%). When asked to choose the most appro-
priate term for cases that were classified as eu-
thanasia or assisted suicide in our study (an affir-
mative answer to the last of the four key questions)
(260 cases), 76.2% of physicians chose euthana-
sia, “assisted suicide,or the ending of life.
End-of-life practices in the remaining cases were
labeled by physicians as “alleviation of symp-
toms” or “palliative or terminal sedation.Re-
sults of a logistic-regression analysis revealed
that physicians were more likely to label the pre-
scribing of drugs with the explicit intention of
hastening death as “euthanasia” or “assisted sui-
cide” when the drugs were neuromuscular relax-
ants or barbiturates than when the drugs were
opioids or other types (P<0.001).
Di s c us si on
The enactment of the Dutch euthanasia law was
followed by a modest decrease in the rates of eu-
thanasia, assisted suicide, and ending of life
without an explicit request by the patient and an
increase in the rate of continuous deep sedation
near the end of life. These findings represent a
significant reversal of the trends in end-of-life
decision making that were found between 1990
and 2001.
13
The high response rate, the fact that
Table 1. Frequencies of Euthanasia, Assisted Suicide, and Other End-of-Life Practices in the Netherlands, According to Year.*
Variable 1990 1995 2001 2005
No. of studied deaths† 5197 5146 5617 9965
No. of questionnaires 4900 4604 5189 5342
Most important practice that possibly
hastened death % (95% CI)
Euthanasia 1.7 (1.5–2.0) 2.4 (2.1–2.6)‡ 2.6 (2.3–2.8)‡ 1.7 (1.5–1.8)
Assisted suicide 0.2 (0.1–0.3) 0.2 (0.1–0.3) 0.2 (0.1–0.3)‡ 0.1 (0.1–0.1)
Ending of life without explicit
request by the patient
0.8 (0.6–1.0)‡ 0.7 (0.5–0.9)‡ 0.7 (0.5–0.9) 0.4 (0.2–0.6)
Intensified alleviation
of symptoms
18.8 (17.9–19.9)‡ 19.1 (18.1–20.1)‡ 20.1 (19.1–21.1)‡ 24.7 (23.5–26.0)
Withholding or withdrawing of
life-prolonging treatment
17.9 (17.0–18.9)‡ 20.2 (19.1–21.3)‡ 20.2 (19.1–21.3)‡ 15.6 (15.0–16.2)
Total 39.4 (38.1–40.7)‡ 42.6 (41.3–43.9) 43.8 (42.6–45.0) 42.5 (41.1–43.9)
Continuous deep sedation§ NA NA NA 8.2 (7.8–8.6)
* All percentages were weighted for the sampling fractions, for nonresponse, and for random-sampling deviations. CI de
-
notes confidence interval, and NA not available.
The number of deaths is largest in 2005 because all deaths in which the cause of death precluded physician assistance
during dying were included, whereas only 1 in 12 of these deaths was included in the other study years.
P<0.05 for comparison with the frequency for 2005.
§ Continuous deep sedation may have been provided in conjunction with practices that possibly hastened death.
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
T h e
n e w e n gl a n d j o u r n a l
o f
m e d i c i n e
n engl j med 356;19 www.nejm.org may 10, 2007
1962
both the study design and the key questions were
kept constant over the years, the endorsement of
the study by authoritative medical bodies, and the
guarantee of anonymity of patients and physicians
all strengthen the validity and reliability of our
results.
We focus on three possible explanations for
these trends. First, some epidemiologic factors
should be considered. As a result of the aging of
society, the percentages of deaths of people 80
years of age or older, which is the age group for
which euthanasia and assisted suicide are least
common, increased from 45.3% in 2001 to 48.4%
in 2005. However, decreased rates of these prac-
tices were found in all age groups, and the age
shift can explain only about 0.1% of the total
decrease. The percentage of deaths from cancer,
which is the most common diagnosis in patients
receiving physician assistance in dying, remained
stable between 2001 and 2005, as did the percent-
ages of deaths attended by general practitioners,
clinical specialists, and nursing home physicians.
Second, Dutch physicians have been found to
consider high-quality end-of-life care as an alter-
native to euthanasia or assisted suicide, at least in
some cases.
13
In our study, we found that eutha-
nasia and assisted suicide were to some extent
replaced by continuous deep sedation. Sedation
was most common in the subgroups in which eu-
thanasia or assisted suicide were also most com-
mon: patients under 80 years of age, men, patients
with cancer, and patients attended by general
practitioners. One study showed that the use of
deep sedation near the end of life is often pre-
Table 2. Rates of Euthanasia or Assisted Suicide, Ending of Life without an Explicit Request by the Patient, and Continuous Deep Sedation
in 2001 and 2005, According to Characteristics of Patients.*
Characteristic
Deaths in
2005 Studied†
Percentage
of All Deaths
Euthanasia
or Assisted Suicide
Ending of Life
without Explicit
Request by Patient
Continuous Deep
Sedation‡
2001 2005 2001 2005 2001 2005
no. percent
Age
0–64 yr 2583 19.2 5.0 3.5 1.0 1.0 5.9 9.0
65–79 yr 3462 32.4 3.3 2.1 0.4 0.3 6.9 7.4
≥80 yr 3920 48.4 1.4 0.8 0.7 0.2 3.3 5.4
Sex
Male 5371 49.7 3.1 2.0 0.7 0.4 5.2 7.2
Female 4594 51.3 2.5 1.5 0.7 0.4 4.9 6.4
Cause of death
Cancer 2760 28.8 7.4 5.1 1.0 0.3 5.7 10.8
Cardiovascular disease 4882 31.9 0.4 0.3 0.6 0.2 2.4 3.5
Other or unknown 2323 39.3 1.2 0.4 0.5 0.6 6.2 6.5
Type of physician§
General practitioner 5135 41.3 5.8 3.7 0.6 0.2 2.9 9.1
Clinical specialist 2891 32.3 1.8 0.5 1.2 0.7 7.9 5.5
Nursing home physician 1458 24.5 0.4 0.2 0.4 0.3 7.4 6.2
Total 9965 100.0 2.8 1.8 0.7 0.4 5.1 6.8
* All percentages were weighted for the sampling fractions, for nonresponse, and for random-sampling deviations. Percentages may not total
100 because of rounding.
The number of deaths studied and the percentages of deaths in all subgroups of patients were similar in 2001, as reported by Onwuteaka-
Philipsen et al.
13
All cases of continuous deep sedation that were provided in conjunction with a practice that possibly hastened death (i.e., in conjunction
with euthanasia, assisted suicide, or ending of life without an explicit request by the patient) were classified as that practice rather than as
deep sedation in this table.
§ The 2005 sample included 481 physicians with an unknown specialty.
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
End -of-Life Pr ac tices in the Ne ther lands under the Eu thanasia Ac t
n engl j med 356;19 www.nejm.org may 10, 2007
1963
ceded by a discussion of the option of euthana-
sia.
21
The types of suffering that prompt requests
for euthanasia overlap with those that prompt
requests for sedation, although the emphasis is
more on existential suffering and physical dete-
rioration in euthanasia and more on physical suf-
fering in sedation.
22
Physicians also sometimes
administer sedatives when they have the explicit
intention of hastening death, such that sedation
and euthanasia are not mutually exclusive in all
cases.
Third, the attitudes of physicians toward opi-
oids and their understanding of the effects of the
drugs may have contributed to a decrease in the
frequency of euthanasia. During the last decade,
there has been increasing evidence that the poten-
tially life-shortening effects of opioids are often
overestimated.
23-26
In the Netherlands, the results
of the study of the 2001 practices
13
sparked a
debate about whether or not opioids can be used
for euthanasia, because of their doubtful lethal
potential and the likelihood of side effects.
14,27
The review committees have disapproved the use
of opioids for euthanasia. As a result, physicians
may have become less inclined to attribute life-
shortening effects to opioids. Thus, the decrease
in the percentage of cases of euthanasia in which
opioids were used in 2005 as compared with
2001 may be at least partly the result of variation
in the attribution by physicians of their acts, not
only from an actual change in practices. It is dif-
ficult to assess whether or not such variation in
attribution is justified in all cases. The tendency
among physicians to attribute less life-shorten-
ing effects to their acts may extend to end-of-life
decision making in a broader sense, relating to
the decreased frequency in 2005 of decisions to
withhold or withdraw potentially life-prolonging
treatment. The shifting of attitudes toward the use
of opioids may also have contributed to the trend
of decreased rates of the ending of life without
an explicit request by the patient. Apparently, the
Table 3. Discussion of Ending-of-Life Practices, Use of Drugs in the Ending of Life, and Time by Which Life Was Shortened
in 2001 and 2005.*
Variable Euthanasia or Assisted Suicide
Ending of Life without Explicit
Request by Patient
2001 2005 2001 2005
No. of deaths studied 335 258 58 24
Discussion of practice (%)†
With patient (or previous wish of patient) 100.0 100.0 26.5 60.0
With relative of patient 96.0 75.5 100.0 80.9
With ≥1 other physician 90.7 87.7 65.2 65.3
Drugs administered (%)‡
Neuromuscular relaxants 63.2 65.4 1.7 22.9
Barbiturates 10.8 8.5 2.3 5.3
Opioids 21.6 16.2 74.7 58.5
Benzodiazepines 0 6.6 2.3 2.7
Other drugs 0.9 0.3 0 4.5
Unknown 3.5 2.9 19.0 6.0
Shortening of life (%)
By <1 wk 45.9 44.8 77.3 85.5
By ≥1 wk 54.1 53.9 18.1 11.6
Unknown 0 1.3 4.7 2.9
* All percentages were weighted for the sampling fractions, for nonresponse, and for random-sampling deviations.
Ending-of-life practices could have been discussed with any combination of patients, relatives, and physicians.
Drugs administered could have been neuromuscular relaxants, in any combination; barbiturates, alone or in combina
-
tion with other drugs except neuromuscular relaxants; opioids, alone or in combination with other drugs except neuro-
muscular relaxants and barbiturates; benzodiazepines, alone or in combination with other drugs except neuromuscular
relaxants, barbiturates, and opioids; or other drugs, in any combination.
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
T h e
n e w e n gl a n d j o u r n a l
o f
m e d i c i n e
n engl j med 356;19 www.nejm.org may 10, 2007
1964
Dutch system of regulating euthanasia has not
resulted in increased rates of this practice, which
is sometimes referred to as nonvoluntary eutha-
nasia.
The reporting rates for euthanasia and physi-
cian-assisted suicide increased from 18.0% in
1990, when these practices were illegal and the
first procedure for review had yet to be developed,
to 80.2% in 2005, a time when euthanasia and
assisted suicide were no longer of questionable
legality if performed according to established re-
quirements for careful practice. Our study re-
ports, for the first time, quantitative data about
the causes of nonreporting. Few physicians indi-
cated that they did not report their case because
of doubts about whether they had met the criteria
and feared legal prosecution. A large majority of
nonreported cases appeared to have involved acts
to end life as defined in our study (an affirmative
answer to the last of the four key questions on
the questionnaire) but were not labeled by the
physician as euthanasia or physician-assisted sui-
cide. These cases mostly involved drugs with un-
certain lethal effects, such as opioids and seda-
tives. As a result, the review committees mainly
evaluate cases in which death was hastened with
neuromuscular relaxants or barbiturates. In such
cases, physicians virtually always adhere to the re-
quirements for careful practice. However, the trans-
parency that is envisaged by the Dutch law appar-
ently does not extend to all cases of euthanasia.
In conclusion, the enactment of the Dutch eu-
thanasia law was followed by a moderate decrease
in the rates of physician assistance in dying. This
trend may have resulted from changes in epidemi-
ologic patterns, an increased use of deep sedation
and other means of alleviating symptoms near the
end of life, and a decreased inclination among
physicians to believe that opioids hasten death.
Supported by a grant from the Dutch Ministry of Health.
No potential conf lict of interest relevant to this article was
reported.
The views expressed in this paper are those of the authors and
do not necessarily reflect the policies of Statistics Netherlands.
We thank the thousands of physicians who provided the study
data, the assistants to the project at Statistics Netherlands for their
skillful help in collecting the data and calculating confidence
intervals, and the members of the Steering Committee, the Royal
Dutch Medical Association, and the Chief Inspector for Health
Care for their support of the study.
Reference s
Rosen G. A history of public health.
Baltimore: Johns Hopkins University Press,
1993.
Murray SA, Boyd K, Sheikh A. Pallia-
tive care in chronic illness. BMJ 2005;330:
611-2.
Quill TE. Dying and decision making
evolution of end-of-life options. N Engl
J Med 2004;350:2029-32.
Drazen JM. Decisions at the end of life.
N Engl J Med 2003;349:1109-10.
van der Heide A, Deliens L, Faisst K,
et al. End-of-life decision-making in six
European countries: descriptive study.
Lancet 2003;362:345-50.
Blank RH, Merrick JC, eds. End-of-life
decision making: a cross-national study.
Cambridge, MA: MIT Press, 2005.
Quill TE, Battin ME, eds. Physician-
assisted dying: the case for palliative care
and patient choice. Baltimore: Johns Hop-
kins University Press, 2004.
Foley K, Hendin H, eds. The case
against assisted suicide: for the right to
end-of-life care. Baltimore: Johns Hopkins
University Press, 2002.
State Committee on Euthanasia. Re-
port on euthanasia. The Hague, the Nether-
lands: Government Printing Office, 1985.
(In Dutch.)
van der Maas PJ, van Delden JJM, Pij-
nenborg L, Looman CWN. Euthanasia
and other medical decisions concerning
the end of life. Lancet 1991;338:669-74.
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
van der Wal G, van der Maas PJ, Bosma
JM, et al. Evaluation of the notification
procedure for physician-assisted suicide
in the Netherlands. N Engl J Med 1996;
335:1706-11.
Onwuteaka-Philipsen BD, van der Heide
A, Muller MT, et al. Dutch experience of
monitoring euthanasia. BMJ 2005;331:
691-3. [Erratum, BMJ 2005;331:1065.]
Onwuteaka-Philipsen BD, van der
Heide A, Koper D, et al. Euthanasia and
other end-of-life decisions in the Nether-
lands in 1990, 1995, and 2001. Lancet
2003;362:395-9.
Rurup ML, Onwuteaka-Philipsen BD,
van der Heide A, van der Wal G, van der
Maas PJ. Trends in the agents used for
euthanasia and the relationship with the
number of notifications. Ned Tijdschr
Geneeskd 2006;150:618-24. (In Dutch.)
Ganzini L, Nelson HD, Schmidt TA,
Kraemer DF, Delorit MA, Lee MA. Physi-
cians’ experiences with the Oregon Death
with Dignity Act. N Engl J Med 2000;
342:557-63. [Erratum, N Engl J Med 2000;
342:1538.]
Ganzini L, Harvath TA, Jackson A,
Goy ER, Miller LL, Delorit MA. Experi-
ences of Oregon nurses and social work-
ers with hospice patients who requested
assistance with suicide. N Engl J Med
2002;347:582-8.
Tolle SW, Tilden VP, Drach LL, Fromme
EK, Perrin NA, Hedberg K. Characteris-
11.
12.
13.
14.
15.
16.
17.
tics and proportion of dying Oregonians
who personally consider physician-assisted
suicide. J Clin Ethics 2004;15:111-22.
Deliens L, van der Wal G. The eutha-
nasia law in Belgium and the Netherlands.
Lancet 2003;362:1239-40.
Deliens L, Mortier F, Bilsen J, et al.
End-of-life decisions in medical practice in
Flanders, Belgium: a nationwide survey.
Lancet 2000;356:1806-11.
van der Maas PJ, van der Wal G,
Haverkate I, et al. Euthanasia, physician-
assisted suicide, and other medical prac-
tices involving the end of life in the Neth-
erlands, 19901995. N Engl J Med 1996;
335:1699-705.
Rietjens JA, van der Heide A, Vrakking
AM, Onwuteaka-Philipsen BD, van der
Maas PJ, van der Wal G. Physician reports
of terminal sedation without hydration or
nutrition for patients nearing death in the
Netherlands. Ann Intern Med 2004;141:
178-85.
Rietjens JA, van Delden JJ, van der
Heide A, et al. Terminal sedation and eu-
thanasia: a comparison of clinical prac-
tices. Arch Intern Med 2006;166:749-53.
Thorns A, Sykes N. Opioid use in last
week of life and implications for end-of-life
decision-making. Lancet 2000;356:398-9.
Sykes N, Thorns A. The use of opioids
and sedatives at the end of life. Lancet
Oncol 2003;4:312-8.
Bercovitch M, Adunsky A. Patterns of
18.
19.
20.
21.
22.
23.
24.
25.
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
End -of-Life Pr ac tices in the Ne ther lands under the Eu thanasia Ac t
n engl j med 356;19 www.nejm.org may 10, 2007
1965
high-dose morphine use in a home-care
hospice service: should we be afraid of it?
Cancer 2004;101:1473-7.
Morita T, Tsunoda J, Inoue S, Chihara
26.
S. Effects of high dose opioids and seda-
tives on survival in terminally ill cancer
patients. J Pain Symptom Manage 2001;
21:282-9.
den Hartogh G. Mysterious data: the
reporting rate cannot increase further.
Med Contact 2003;58:1063-6. (In Dutch.)
Copyright © 2007 Massachusetts Medical Society.
27.
Copyright © 2007 Massachusetts Medical Society. All rights reserved.
Downloaded from www.nejm.org at UNIVERSITE DE MONTREAL on January 28, 2010 .
... Particularly when decisions which actively hasten the end of life are concerned, public and professional debates are extensive. Information regarding the relative frequencies and circumstances of these decisions can help nurture a fruitful debate [3][4][5][6][7]. ...
... In case either of the first two decision types was made, we asked whether those decisions were made with the partial or full intent of hastening the death of the patient. This questionnaire was adapted from the questionnaire used in the Dutch "Death certificate study" [3,18] (Supplementary File 1). ...
... There are few studies documenting frequencies of distinct end-of-life decisions and even fewer specifically on cancer [21][22][23]. To our knowledge, no reports with observed data on euthanasia and other types of decisions from South America are available, but there are data from some European countries: of all cancerdeaths in the Netherlands in 2010, 41% of patients had received intensified measures to alleviate pain or other symptoms and 28% had received deep continuous palliative sedation [3]. In 2007 in Flanders, Belgium and the UK this proportion of palliative sedation was 15 and 17%, respectively [24]. ...
Article
Full-text available
Background Cancer patients’ end-of-life care may involve complex decision-making processes. Colombia has legislation regarding provision of and access to palliative care and is the only Latin American country with regulation regarding euthanasia. We describe medical end-of-life decision-making practices among cancer patients in three Colombian hospitals. Methods Cancer patients who were at the end-of-life and attended in participating hospitals were identified. When these patients deceased, their attending physician was invited to participate. Attending physicians of 261 cancer patients (out of 348 identified) accepted the invitation and answered a questionnaire regarding end-of-life decisions: a.) decisions regarding the withdrawal or withholding of potentially life-prolonging medical treatments, b.) intensifying measures to alleviate pain or other symptoms with hastening of death as a potential side effect, and c.) the administration, supply or prescription of drugs with an explicit intention to hasten death. For each question addressing the first two decision types, we asked if the decision was fully or partially made with the intention or consideration that it may hasten the patient’s death. Results Decisions to withdraw potentially life-prolonging treatment were made for 112 (43%) patients, 16 of them (14%) with an intention to hasten death. For 198 patients (76%) there had been some decision to not initiate potentially life-prolonging treatment. Twenty-three percent of patients received palliative sedation, 97% of all patients received opioids. Six patients (2%) explicitly requested to actively hasten their death, for two of them their wish was fulfilled. In another six patients, medications were used with the explicit intention to hasten death without their explicit request. In 44% ( n = 114) of all cases, physicians did not know if their patient had any advance care directives, 26% ( n = 38) of physicians had spoken to the patient regarding the possibility of certain treatment decisions to hasten death where this applied. Conclusions Decisions concerning the end of life were common for patients with cancer in three Colombian hospitals, including euthanasia and palliative sedation. Physicians and patients often fail to communicate about advance care directives and potentially life-shortening effects of treatment decisions. Specific end-of-life procedures, patients’ wishes, and availability of palliative care should be further investigated.
... The blurred boundaries between CDS and (slow) euthanasia become particularly pertinent in countries such as Belgium and the Netherlands where both procedures are legally permissible. For example, if a case is reported as euthanasia highly depends on the type of medicines that are used, with cases where opioids had been used often being not reported and hence labelled as CDS ( van der Heide et al. 2007). In Belgium, differences of defining -and administering -CDS or euthanasia have been reported for Dutch-or French-speaking as well as Flemish physicians (Dierickx et al. 2018). ...
... Although physicians normally welcome certainty, it is seen as highly ambiguous in this case. All three countries acknowledged the risk that it could be used as 'slow euthanasia' for different reasons, for example, to escape complex, straining situations -a risk that has been reported, for example, for the Netherlands and Belgium ( van der Heide et al. 2007). It is especially this aspect that is ethically and morally relevant. ...
Chapter
This chapter discusses blurred boundaries in home care at the end of life. Firstly, an overview of support structures for informal caregivers, i.e. family and friends, in Germany, Switzerland and the United Kingdom is provided. From the perspective of Care Ethics, three blurred boundaries are identified: 1. between being an informal caregiver and a non-caregiving close person, 2. between formal/professional and informal caregivers, and 3. between caring for others and self-care. The first blurred boundary relating to the role of the informal caregiver is especially crucial in dementia. With a slow progression, the line between being primarily a relative and being an informal caregiver becomes blurred. Formal and informal care in the Swiss case is blurred due to the employment of informal caregivers. The last blurred boundary lies within the informal caregivers themselves: being continuous caregivers, they are sometimes in need of care themselves. Based on that, a discussion of possible modes of support is provided: awareness promotion, supportive structures and an attitude of Care Ethics, which includes trust and responsiveness in relationships. The change from dyadic care relationships to care networks is encouraged.
... Tabla 1. Características generales de los pacientes con y sin respuestas reportadas por sus médicos Fuente: elaboración propia Las características de los pacientes fallecidos con respuesta de los médicos están resumidas en la tabla 2, estratificadas por el hospital de atención. La mediana de tiempo en días entre la muerte y la respuesta del cuestionario fue nueve días (RIQ [6][7][8][9][10][11][12][13][14][15][16][17][18][19][20]. La edad media global fue de 60,2±16,3 años y en cada sitio de inclusión fue de 60,8±17,1 años (Hospital Universitario San Ignacio, HUSI), 58,8±15,9 años (Instituto Nacional de Cancerología, INC) y 66,1±14,9 (Hospital Universitario San José Popayán, HUSJ). ...
Article
Full-text available
El objetivo de este estudio fue describir las percepciones de médicos sobre la atención durante el final de la vida en pacientes oncológicos en tres hospitales de mediana y alta complejidad en Popayán y Bogotá en 2019 y 2020. Se utilizó un diseño de corte transversal descriptivo que consistió en aplicar a médicos un cuestionario auto administrado que mide la percepción de los médicos sobre la atención de fin de vida prestada a pacientes oncológicos durante su último mes de vida. Se identificó el fallecimiento de 341 pacientes y se obtuvieron 261 respuestas de sus médicos tratantes (tasa de respuesta 76,7%). El 70% de los médicos consideró que la muerte no fue consecuencia de intervenciones médicas y el 85% clasificó las estrategias terapéuticas como paliación sintomática. En 87% de los casos los médicos indicaron sentirse tranquilos con respecto a la atención médica brindada durante el proceso de fin de vida de los pacientes. El 48% y el 73% manifestó que no hablaron con los familiares y pacientes respectivamente sobre la posibilidad de acelerar el final de la vida como resultado de las intervenciones o no intervenciones. En conclusión, existe interés médico por el fin de vida de los pacientes oncológicos y tranquilidad con la atención médica brindada. La baja comunicación con el paciente o sus familiares durante este periodo puede ser un área de gran mejoramiento.
... Euthanasia and physician-assisted suicide (EAS) is legal in only a few countries [1][2][3][4][5][6][7] and a fiercely debated issue, particularly in relation to the fact that it is a basic human right worldwide [6,[8][9][10][11][12][13]. Nevertheless, similar right-to-die laws are currently introduced in other jurisdictions [14]. ...
Article
Full-text available
This study aimed to investigate the general South Korean public attitudes toward the legalization of euthanasia or physician-assisted suicide (EAS) and examine the reasons underpinning these attitudes. From March–June 2021, we conducted a cross-sectional survey of a representative national sample of 1000 South Koreans aged 19 years or older. Three in four participants (76.4%) expressed positive attitudes toward the legalization of EAS. Participants who agreed with this legalization reported “meaninglessness of the rest of life” and “right to a good death” as their main reasons. Participants who disagreed with the legalization of EAS reported “respect for life”, “violation of the right to self-determination”, “risk of abuse or overuse”, and “violation of human rights” as theirs. In the multivariate logistic regression analyses, participants with poor physical status (adjusted odds ratio [aOR]: 1.41, 95%; confidence interval [CI]: 1.02–1.93) or comorbidity (aOR: 1.84, 95%; CI: 1.19–2.83) showed positive attitudes toward the legalization of EAS. In summary, most of the general South Korean population regards the legalization of EAS positively, especially participants with poor physical status or comorbidity.
Article
Full-text available
Article 21 of the Indian Constitution, which deals with the protection of life and personal liberty, has been interpreted in several landmark cases by the courts of law. Every one of those formulations has enlarged the scope of Article 21 to encompass those aspects of life that give meaning, purpose, and dignity to existence. The terms "life" and "liberty" are deeply linked. Liberty gives a person the freedom to make decisions freely, and life without liberty would be meaningless. Thus, Article 21 integrated the concepts of life and liberty distinctly and also connected them through the use of a legal mechanism for their deprivation. Due to this interpretation, the right to die was never construed as an important aspect of the right to life and personal liberty guaranteed by Article 21. The right to die is a notion that is predicated on the belief that a person has the right to make any choice about the termination of his or her life (this also includes undergoing voluntary euthanasia). The major issue is whether individuals should have the right to die and what may be the rationale for such a right.
Chapter
‘The Right to Die in Practice’ examines selected jurisdictions, illustrating the different paths that led to or did not lead to the right to die practice. Switzerland, which is famous for its assisted suicide organizations, and the Netherlands, which is the first State to legalize euthanasia are examined in extensive detail. Belgium, Germany, the United Kingdom, and—as an exception to the Convention perspective—Canada are also included. While this examination gives a better understanding into what the right to die looks like in practice, it also provides an insight to the slippery slope argument, which stands on the opposite side of personal autonomy on the balancing scale, without making a definitive statement on its existence.
Article
Resumo O objetivo deste estudo é analisar as opiniões da próxima geração de médicos sobre a eutanásia e o suicídio medicamente assistido. Os estudantes de todas as faculdades de medicina portuguesas que frequentaram o último ano do curso e os que o concluíram no ano letivo 2015/2016 foram convidados a preencher um inquérito. Para avaliar a existência de associação com crenças religiosas foi utilizado o teste Qui-quadrado ou o teste Fisher. Das 405 respostas válidas, a maioria dos respondentes era do sexo feminino, solteira, e a média de idade foi de 24 anos. A maioria referiu ter crenças religiosas. Mais de metade lidou com pacientes em estado terminal. Em relação à legalização da eutanásia e do suicídio medicamente assistido, 73% e 56%, respetivamente, foram a favor. Os futuros médicos portugueses são claramente a favor da eutanásia e do suicídio assistido por médico, ao contrário de estudos semelhantes em outros países europeus.
Chapter
Uncertainty is a basic constant of medicine and health-care professionals’ decision-making. However, it is particularly apparent in the complex, ambiguous and unpredictable situations that often arise in end-of-life care. Advance directives (ADs) and continuous deep sedation (CDS) are both tools used at different times during the end-of-life period to provide greater certainty to the dying. Both aim at planning for uncertainty in decision-making and reducing uncertainty about the hour and manner of death.
Article
Objectives: Since 2016, Canada has allowed for euthanasia based on strict criteria under federal medical assistance in dying legislation. The purpose of this study was to determine how Canadian intensivists perceive medical assistance in dying and whether they believe their approach to withdrawal of life-sustaining therapies has changed following introduction of medical assistance in dying. Design: Electronic survey. Setting: Participants were recruited from 11 PICU programs and 14 adult ICU programs across Canada. All program leaders for whom contact information was available were approached for participation. Participants: We invited intensivists and critical care trainees employed between December 2019 and May 2020 to participate using a snowball sampling technique in which department leaders distributed study information. All responses were anonymous. Quantitative data were analyzed using descriptive statistics. Categorical variables were analyzed using Pearson chi-square test. Interventions: Not applicable. Measurements and main results: We obtained 150 complete questionnaires (33% response rate), of which 50% were adult practitioners and 50% pediatric. Most were from academic centers (81%, n = 121). Of respondents, 86% (n = 130) were familiar with medical assistance in dying legislation, 71% in favor, 14% conflicted, and 11% opposed. Only 5% (n = 8) thought it had influenced their approach to withdrawal of life-sustaining therapies. Half of participants had no standardized protocol for withdrawal of life-sustaining therapies in their unit, and 41% (n = 62) had observed medications given in disproportionately high doses during withdrawal of life-sustaining therapies, with 13% having personally administered such doses. Most (80%, n = 120) had experienced explicit requests from families to hasten death, and almost half (47%, n = 70) believed it was ethically permissible to intentionally hasten death following withdrawal of life-sustaining therapies. Conclusions: Most Canadian intensivists surveyed do not think that medical assistance in dying has changed their approach to end of life in the ICU. A significant minority are ethically conflicted about the current approach to assisted dying/euthanasia in Canada. Almost half believe it is ethical to intentionally hasten death during withdrawal of life-sustaining therapies if death is expected.
Article
Full-text available
Background: An important issue in the debate about terminal sedation is the extent to which it differs from euthanasia. We studied clinical differences and similarities between both practices in the Netherlands. Methods: Personal interviews were held with a nationwide stratified sample of 410 physicians (response rate, 85%) about the most recent cases in which they used terminal sedation, defined as administering drugs to keep the patient continuously in deep sedation or coma until death without giving artificial nutrition or hydration (n = 211), or performed euthanasia, defined as administering a lethal drug at the request of a patient with the explicit intention to hasten death (n = 123). We compared characteristics of the patients, the decision-making process, and medical care of both practices. Results: Terminal sedation and euthanasia both mostly concerned patients with cancer. Patients receiving terminal sedation were more often anxious (37%) and confused (24%) than patients receiving euthanasia (15% and 2%, respectively). Euthanasia requests were typically related to loss of dignity and a sense of suffering without improving, whereas requesting terminal sedation was more often related to severe pain. Physicians applying terminal sedation estimated that the patient's life had been shortened by more than 1 week in 27% of cases, compared with 73% in euthanasia cases. Conclusions: Terminal sedation and euthanasia both are often applied to address severe suffering in terminally ill patients. However, terminal sedation is typically used to address severe physical and psychological suffering in dying patients, whereas perceived loss of dignity during the last phase of life is a major problem for patients requesting euthanasia.
Article
Full-text available
In 1991 a new procedure for reporting physician-assisted deaths was introduced in the Netherlands that led to a tripling in the number of reported cases. In 1995, as part of an evaluation of this procedure, a nationwide study of euthanasia and other medical practices concerning the end of life was begun that was identical to a study conducted in 1990. We conducted two studies, the first involving interviews with 405 physicians (general practitioners, nursing home physicians, and clinical specialists) and the second involving questionnaires mailed to the physicians attending 6060 deaths that were identified from death certificates. The response rates were 89 percent and 77 percent, respectively. Among the deaths studied, 2.3 percent of those in the interview study and 2.4 percent of those in the death-certificate study were estimated to have resulted from euthanasia, and 0.4 percent and 0.2 percent, respectively, resulted from physician-assisted suicide. In 0.7 percent of cases, life was ended without the explicit, concurrent request of the patient. Pain and symptoms were alleviated with doses of opioids that may have shortened life in 14.7 to 19.1 percent of cases, and decisions to withhold or withdraw life-prolonging treatment were made in 20.2 percent. Euthanasia seems to have increased in incidence since 1990, and ending of life without the patient's explicit request to have decreased slightly. For each type of medical decision except those in which life-prolonging treatment was withheld or withdrawn, cancer was the most frequently reported diagnosis. Since the notification procedure was introduced, end-of-life decision making in the Netherlands has changed only slightly, in an anticipated direction. Close monitoring of such decisions is possible, and we found no signs of an unacceptable increase in the number of decisions or of less careful decision making.
Article
Full-text available
Physician-assisted suicide was legalized in Oregon in October 1997. There are data on patients who have received prescriptions for lethal medications and died after taking the medications. There is little information, however, on physicians' experiences with requests for assistance with suicide. Between February and August 1999, we mailed a questionnaire to physicians who were eligible to prescribe lethal medications under the Oregon Death with Dignity Act. Of 4053 eligible physicians, 2649 (65 percent) returned the survey. Of the respondents, 144 (5 percent) had received a total of 221 requests for prescriptions for lethal medications since October 1997. We received information on the outcome in 165 patients (complete information for 143 patients and partial for on an additional 22). The mean age of the patients was 68 years; 76 percent had an estimated life expectancy of less than six months. Thirty-five percent requested a prescription from another physician. Twenty-nine patients (18 percent) received prescriptions, and 17 (10 percent) died from administering the prescribed medication. Twenty percent of the patients had symptoms of depression; none of these patients received a prescription for a lethal medication. In the case of 68 patients, including 11 who received prescriptions and 8 who died by taking the prescribed medication, the physician implemented at least one substantive palliative intervention, such as control of pain or other symptoms, referral to a hospice program, a consultation, or a trial of antidepressant medication. Forty-six percent of the patients for whom substantive interventions were made changed their minds about assisted suicide, as compared with 15 percent of those for whom no substantive interventions were made (P<0.001). Our data indicate that in Oregon, physicians grant about 1 in 6 requests for a prescription for a lethal medication and that 1 in 10 requests actually result in suicide. Substantive palliative interventions lead some--but not all--patients to change their minds about assisted suicide.
Article
Perspectives in Biology and Medicine 49.1 (2006) 154-157 Physician-assisted dying was brought to public attention by the actions of Dr. Jack Kevorkian (now imprisoned), who took it upon himself to assist people who wanted—for a variety of reasons—to die. Later examination of his "cases" revealed that only 35% would have been diagnosed as terminally ill by end-of-life care specialists. The idea of physician-assisted death polarized both the general public and the medical profession, and the opportunity for reasoned discourse was temporarily lost. This book, edited by two early proponents of the practice, provides the necessary reasoned discourse for physicians, legislators, disability activists, and anyone who is involved in palliative and end-of-life care situations. The authors of the various chapters address the subject from the perspectives of ethical principles; clinical, philosophical, and religious issues; actual practice and creating a legislatively favorable climate; and the political and legal issues that impede implementation. The editors conclude with the goals and standards of physician-assisted death, descriptively titling their chapter "Excellent Palliative Care as the Standard, Physician-Assisted Dying as a Last Resort," which is the underlying theme of most of the book. This book is a complement to The Case Against Assisted Suicide: For the Right to End-of-Life Care (Foley and Hendin 2002). How we use words influences how people think. Some words have such strong associations with religious, political, and societal issues that using them becomes inflammatory. I have long felt, as do the editors, that suicide is not an appropriate word to be used for decisions about end-of-life dying. Instead, they have used the term "physician-assisted dying," which more accurately reflects the process and timing of what is occurring. In my own classes and training of health professionals, I have always made the distinction between people who choose to die but don't have to, and people who are at the end of life facing choices about their dying. The first is suicide, which our society stigmatizes; the second is physician-assisted dying. This book does not justify suicide. Rather, it places the role of the physician in the context of end-of-life care as it respects patient and family values. It does not advocate that all physicians must provide the service, but that physicians be responsive to competent autonomous requests by terminally ill patients to find suitable ways to address the problem to the patient's satisfaction. As health care professionals, we know that we can get what we want at the time of our dying because we have the knowledge and means to make it happen. The issue for most health care professionals is how hard this is to do for others, not for ourselves. There is an excellent chapter—"Assisted Death in the Netherlands: Physicians at the Bedside When Help Is Requested" (Kimsma and van Leeuwen), based on 16 years of collecting data—that investigates the experiences of physicians who practice legally permitted physician-assisted dying. An excerpt clearly describes the ambivalence surrounding the process: One of best features of this collection is that it is able to definitively comment on Oregon's three years of experience with legalized physician-assisted dying and the Netherland's 16 years of permitting voluntary active euthanasia. In both places, better and more frequent use of palliative care measures is an outcome of legalized assisted dying. In Oregon, physicians have increased their hospice referrals, and 79% report that "their confidence in prescribing pain medications...
Article
Recently, a law on euthanasia has been adopted in both the Netherlands and Belgium. In both countries euthanasia has been legalised under strict conditions and after confirmation with a notification procedure. Although both laws are similar, the Belgian law is more extensive on the requirements of prudent practice. On the other hand, in the Dutch society the norm setting on euthanasia has been more widely developed through jurisprudence. Nevertheless, we expect that the medical implementation of the new law and the notification procedure in Belgium will be more difficult than in the Netherlands. In order to promote, safeguard and guarantee the quality of the euthanasia practice, the present euthanasia notification procedure in the Netherlands is supplemented with feedback to the physicians. The strictly anonymous procedure in the Belgian notification procedure prevents this possibility. Therefore, Belgian physicians will not be aided by the notification procedure to improve their knowledge and skills in euthanasia. In Belgium, it is still uncertain whether and how this law will be supported by the medical profession and by the medical schools.
Article
This article presents the first results of the Dutch nationwide study on euthanasia and other medical decisions concerning the end of life (MDEL). The study was done at the request of the Dutch government in preparation for a discussion about legislation on euthanasia. Three studies were undertaken: detailed interviews with 405 physicians, the mailing of questionnaires to the physicians of a sample of 7000 deceased persons, and the collecting of information about 2250 deaths by a prospective survey among the respondents to the interviews. The alleviation of pain and symptoms with such high dosages of opioids that the patient's life might be shortened was the most important MDEL in 17.5% of all deaths. In another 17.5% a non-treatment decision was the most important MDEL. Euthanasia by administering lethal drugs at the patient's request seems to have been done in 1.8% of all deaths. Since MDEL were taken in 38% of all deaths (and in 54% of all non-acute deaths) we conclude that these decisions are common medical practice and should get more attention in research, teaching, and public debate.
Article
In the Netherlands, a notification procedure for physician-assisted death has been in use since 1991. It requires doctors to report each case to the coroner, who in turn notifies the public prosecutor. Ultimately, the Assembly of Prosecutors General decides whether to prosecute. Although physician-assisted death remains technically illegal, doctors are extremely unlikely to be prosecuted if they comply with the requirements for accepted practice. In 1995, the ministers of health and justice commissioned an evaluation to determine the adequacy of the notification procedure. A random sample of 405 physicians were interviewed. We also interviewed 147 physicians who had reported cases of physician-assisted death and 116 coroners, and we reviewed 353 judicial files of reported cases. In addition, we interviewed 48 public prosecutors and reviewed the minutes of the Assembly of Prosecutors General for 1991 to 1995 and all published court decisions from 1981 through 1995. In 1995, about 41 percent of all cases of euthanasia and physician-assisted suicide were reported. There were no major differences between reported and unreported cases in terms of the patients' characteristics, clinical conditions, or reasons for the action. Most patients had cancer and were described as suffering "unbearably" and 'hopelessly." Of the 6324 cases reported during the period from 1991 through 1995, only 13 involved prosecution of the physician. The majority of respondents in the groups interviewed thought that all cases of physician-assisted death should be reviewed, although most doctors thought the review should be performed by other doctors, and there was substantial concern about the burden associated with the reporting procedure. Substantial progress in the oversight of physician-assisted death has been achieved in the Netherlands. The reporting procedure could be more streamlined and less threatening.
Article
This study was prompted by public and professional concern that the use of opioids for symptom control might shorten life. We retrospectively analysed the pattern of opioid use in the last week of life in 238 consecutive patients who died in a palliative care unit. Median doses of opioid were low (26.4 mg) in the last 24 h of life and patients who received opioid increases at the end of life did not show shorter survival than those who received no increases. The doctrine of double effect therefore need not be invoked to provide symptom control at the end of life.