Transcript Euthanasia in the Netherlands

Euthanasia in the Netherlands
and in Belgium: Law, Practice,
Pitfalls and Lessons
Raphael Cohen-Almagor
July 21, 2015
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Preliminaries: Comparative Law
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Preliminaries: Comparative Law
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Methodology
• Critical review of the literature
• Interviews with leading scholars and practitioners
• The interviews were conducted in English, usually in the
interviewees’ offices.
• The interviews were semi-structured. I began with a list
of questions but did not insist on answers to all of them if
I saw that the interviewee preferred to speak about
subjects that were not included in the original
questionnaire.
• The length of interviews varied from 1 hour to 2.5. hours.
• After completing the first draft I sent the papers to my
interviewees.
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Euthanasia - Definition
• Belgium accepted the Dutch definition:
• (a) “euthanasia is the intentional taking of someone’s life
by another, on her request”.
• (b) It follows that this definition does not apply in the
case of incompetent people; there the proposed
terminology is “termination of life of incompetent
people”.
• (c) More importantly, the act of stopping a pointless
(futile) treatment is not euthanasia and it is
recommended to give up the expression “passive
euthanasia” in these cases.
• (d) What was sometimes called “indirect euthanasia”,
forcing up the use of analgesics with a possible effect of
shortening life, is also clearly distinguished from
euthanasia proper.
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Dutch Euthanasia Law
• On November 28, 2000, the Dutch Lower House
of parliament, by a vote of 104 for and 40
against, approved the legalization of euthanasia.
• On April 10, 2001 the Dutch Upper House of
parliament voted to legalize euthanasia, making
the Netherlands the first and at that time only
country in the world to legalize euthanasia.
• A year later, in April 2002, the legalization
process was completed when the law was
approved by the Dutch Senate.
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Belgian Euthanasia Law
• On January 20, 2001 the euthanasia commission of
Belgium’s upper house, the Senate, voted in favour of
proposed euthanasia legislation, which would make
euthanasia no longer punishable by law, provided certain
requirements are met.
• Nine months later, on October 25, 2001 Belgium’s
Senate approved the law proposal, which was adopted
on March 20, 2001 by the joint commissions of Justice
and Social Affairs, by a significant majority.
• On May 16, 2002, after two days of heated debate, the
lower house of the Belgian parliament endorsed the bill
by 86 votes in favour, 51 against and with 10
abstentions.
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The Netherlands
Background
• National and International criticism.
• The Research Reports of 1990, 1995,
2003, 2007 and 2009
• Contrasting Interpretations
• The Practice of Euthanasia and the Legal
Framework
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The Netherlands – Worrisome Data
• In 2005, 0.4% of all deaths were the
result of the use of lethal drugs not at
the explicit request of the patient.
• This percentage was not significantly
different from those in previous years.
• There were 1000 cases (0.8%)
without explicit and persistent request
in 1990, and 900 cases (0.7%) in
1995.
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The Netherlands - Worrisome Data
• In 2005, 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
compared 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.
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Belgium - Worrisome Data
• Prior the law, studies have shown that more than
one in 10 deaths among the country’s 10 million
people are the result of "informal" euthanasia,
where doctors gave patients drugs to hasten
their deaths.
• More than three in 100 deaths in Belgium's
northern Flemish region every year were the
result of lethal injection without the patient's
request.
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Euthanasia v. PAS
• One way to address this issue of abuse is to advance
physician-assisted suicide for all patients who are able to
swallow oral medication.
• However, in Belgium and in the Netherlands there is a
tradition of doctors administering lethal drugs.
• In addition, there is also the issue of taking responsibility.
Physicians in both countries like to have control over the
process.
• Consequently, in Belgium and the Netherlands there are
relatively few cases of PAS.
• I suggest putting this issue on public agenda, speaking
openly as people in Belgium like and appreciate about
the findings and the fear of abuse, and suggest PAS as
an alternative to euthanasia.
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The need for law
• In both countries, there was/is strong
support for euthanasia.
• The legal and social situation created
confusion: Legally euthanasia was illegal;
in practice it was conducted by many
physicians.
• This is unhealthy situation. Law was
needed to clarify the situation.
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Openness
• As a result of the law, in both countries
physicians speak openly about terminating
life of dying competent patients.
• Dutch and Belgian experts believe that
while in the world “physicians have
probably the same practice but it is
conducted behind close doors, we believe
it is better to discuss things, in order to
have exchange of ideas and expertise”.
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The Netherlands - Data
• In both 2005 and 2001, the highest rates of euthanasia or assisted
suicide were found for patients 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.*
* Agnes van der Heide, Bregje D. Onwuteaka-Philipsen et al., “End of Life
Practices in the Netherlands under the Euthanasia Act”, New Eng. J. of
Med., Vol. 356, No. 19 (May 10, 2007): 1957-1965.
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Belgium - Data
• In September 2004, the first major study into the effect of
Belgium's new legislation that permits euthanasia had
found that around 20 terminally ill people a month asked
doctors to help them to die.
• The study found that 259 acts of legal euthanasia were
carried out in Belgium up until the end of 2003.
• The Federal Control and Evaluation Commission for
Euthanasia counted an average of 17 registered cases
of euthanasia per month.
• About 60 per cent of euthanasia cases were
administered in hospitals; the rest generally took place at
the patients’ homes.
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Belgium - Data
• The vast majority of people asking to be
euthanized were suffering from terminal
cancers.
• Euthanasia was more reported in Dutch
speaking Flanders than in Francophone
Wallonia.
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Belgium - Data
• In December 2006 the Federal National Evaluation and
Control Commission for Euthanasia issued its second
report, covering the period 2004-2005.
• Its findings echo much of the results of the first report.
• This report deals with 742 legal euthanasia cases, 31
per month, a significant increase compared with the
2002-2003 figures.
• 83% of cases involved cancer patients.
• 45% of cases were dealt with by the General Practitioner
(GP) at the patient’s home.
• Only 14 percent of all euthanasia requests were written
in French. 86% of the declarations were written in
Flemish.
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Palliative Care
• Until 2000, palliative care was underdeveloped in both countries.
• Palliation seemed to be opposed to
euthanasia.
• Both countries preferred to develop the
practice of euthanasia.
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Palliative Care
• Almost all the physicians I interviewed in both
countries had no palliative care training.
• Most did not think they need such training. One
head of department spoke of palliation with
disdain: Why should I consult a palliative care
specialist?
• Since 2000, both governments dedicate more
funding to palliation.
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Palliative Care
• Most worrisome is to know that sometime when
physicians administered life-shortening drugs in
order to alleviate pain, they did not consult
palliative care specialist or any other health care
personnel.*
• Ganzini and colleagues reported that as a result
of palliative care, some patients in Oregon
changed their minds about assisted suicide.**
* Veerle Provoost, Filip Cools, Johan Bilsen et al., “The Use of Drugs with a Life-
shortening Effect in End-of-life Care in Neonates and Infants”, Intensive Care Med.,
Vol. 32 (2006), p. 136.
** Linda Ganzini, Heidi D. Nelson, Terri A. Schmidt, Dale F. Kraemer, Molly A. Delorit,
Melinda A. Lee, “Physicians’ Experiences with the Oregon Death with Dignity Act”,
New Eng. J. of Med., Vol. 342, No. 8 (Feb. 24, 2000), p. 563.
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Role of Physicians
• In both countries, physicians are not obliged to
carry out euthanasia if this practice contradicts
their conscience.
• However, they are under tremendous amount of
pressure to do it.
• They should tell their patients their reluctance so
as patients should know beforehand that they
cannot expect this service from them.
• They constitute a small minority.
• They cannot serve on most prestigious
committees because euthanasia is on the menu
of available medical practices.
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Role of Physicians
• In both countries, the physician is required
to devote energies in the patient and her
loved ones, to consult with other
specialists, to spend time and better the
communication between all people
concerned.
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Reporting
• In the Netherlands, all euthanasia cases need to be
reported to a regional committee.
• In Belgium, all cases have to be fully documented in a
special format and presented to a permanent monitoring
committee, the National Evaluation and Control
Commission for Euthanasia, established by the
government in September 2002.
• Work is similar: The Committees/Commission need to
study the registered and duly completed euthanasia
document received from the physician. They ascertain
whether euthanasia was performed in conformity with
the conditions and procedures listed in law.
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Reporting
• While in the Netherlands there are five regional committees, in
Belgium there is one commission.
• In the Netherlands, the names of the reviewed physicians are known
to the regional committees. Members of the committees are able to
summon doctors for inquiries if they feel that something in the
decision-making process was flawed.
• In Belgium, the names of the physicians remain anonymous. The
commission as a general rule sees only the open part of the
physicians’ reports. Only when there are doubts about the practice,
the commission may decide to vote whether or not they should see
also the discrete part.
• The Dutch system is arguably better because there is more
feedback between the regional committees and physicians.
• In Belgium the commission has more limited information.
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Dutch Reporting
• The reporting rate for euthanasia was 18%
in 1990.
• By 1995 it had risen to 41%.
• In 2001, the level of reporting rose to 54%.
• After the legislation, 80% reported in 2005.
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Dutch Reporting
• Official notifications increased sharply in
2009, from 2,331 in 2008 to 2,636 - a rise
of 13%.
• Since 2006 number of euthanasia cases
has been increasing steadily, by about
10% a year.
• Different interpretations.
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Belgium - Reporting
• According to the last report (2010)
approximately half (549/1040
(52.8%) of all estimated
cases of euthanasia were reported to the
Federal Control and Evaluation
Committee.
•
Timme Smets, Johan Bilsen, Joachim Cohen et al., “Reporting of Euthanasia in Medical Practice in Flanders,
Belgium: cross sectional analysis of reported and unreported cases”, BMJ, Vol. 341 (October 5, 2010).
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Palliative Sedation
• One of the worrisome consequences of the Dutch law is
increase in the number of patients receiving palliative
sedation.
• Palliative sedation involves the administration of deep
sleep-inducing medication to patients who have at most
two weeks to live.
• There was a substantive increase in the use of palliative
sedation after the introduction of the law from 8,500 to
9,600.*
•
* Agnes van der Heide, Bregje D. Onwuteaka-Philipsen et al., “End of Life
Practices in the Netherlands under the Euthanasia Act”, New Eng. J. of
Med., Vol. 356, No. 19 (May 10, 2007): 1957-1965.
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Palliative Sedation
• Terminal sedation is not euthanasia, or as some people in Belgium
and the Netherlands term “slow euthanasia”.
• Euthanasia requires the consent of the patient, while terminal
sedation does not by definition requires consent.
• The fear of abuse is great.
• Experts told me that terminal sedation happens frequently in ICUs.
Physicians conceive the practice as the middle approach between
euthanasia and withholding treatment.
• It is estimated that 8% of all death cases in Belgium in 2001 were
cases of terminal sedation, about 4,500 cases in Flanders alone.*
• * Johan Bilsen, Robert Vander Stichele, Bert Broeckaert et al., “Changes in Medical
End-of-Life Practices during the Legalization Process of Euthanasia in Belgium”,
Social Science and Medicine, Vol. 65, Issue 4 (2007): 803-808.
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Palliative Sedation
• There is no knowledge whether the patient's
consent was sought or given.
• At present the Dutch and Belgian physicians do
not have clear directives on this.
• There is no legal regulation, no public or
professional scrutiny to examine to what extent
the procedure is careful, and there is no
knowledge whether consultation was provided
• This situation calls for a change. There should
be clear guidelines when it is appropriate, if at
all, to resort to this practice.
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Consultation
• In both countries, the physician practicing euthanasia is
required to consult an independent colleague in regard
to (a) the hopeless condition of the patient, and (b) the
voluntariness of the request.
• In the Netherlands, the independency requirement has
been compromised.
• Death on Request (Dr. van Oijen).
• Up until 1992, in only 5% of the cases did the family
doctor seek a second opinion from a doctor whom he did
not know personally.*
*. G. van der Wal, J.Th.M. van Eijk, H.J.J. Leenen and C. Spreeuwenberg, “Euthanasia
and Assisted Suicide. II. Do Dutch Family Doctors Act Prudently?”, Family Practice,
Vol. 9, No. 2 (1992), pp. 113, 115.
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Consultation
• Another study showed, unsurprisingly, that almost all
consultants regarded the request of the patient to be
well-considered and persistent, conceded that there
were no further alternative treatment options, and agreed
with the intention to perform euthanasia or assisted
suicide.
• In general, the GPs did not need to change their views or
plans following the consultation.*
• My own study (1999) showed that the consultants often
were not independent from the physician who was
asking for their opinion.
*. Bregje Dorien Onwuteaka-Philipsen, Consultation of Another Physician in
Cases of Euthanasia and Physician-assisted Suicide (Amsterdam: Vrije
Universiteit, 1999), Thesis, pp. 29, 31.
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Consultation
• Since 2000, SCEN in the Netherlands.
• Since 2003, LEIFartsen in Belgium.
• In Belgium, there are no rules regarding who
decides the identity of the consultant.
• The only rule is that the consultant needs to be
independent.
• Probably doctors approach like-minded
physicians.
• Unclear what happens if there is disagreement
between doctors. This issue deserves attention
and probing.
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Consultation
• In the Netherlands, sometimes
consultancy was conducted over the
phone, with only the GP.
• Mixed views whether this is happening
today in both countries.
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Newborns
• In both countries, administering lethal drugs to minors is
against the law.
• Comparison between end of life decision making in
Belgium and in the Netherlands shows that the practice
regarding severely ill neonates and infants is rather
similar.
• Parents and colleague physicians are more often
involved in the decision making in the Netherlands.*
• Dutch doctors have reported 22 cases of euthanasia of
severely ill babies between 1997 and 2005.
* Astrid M. Vrakking, Agnes van der Heide, Veerle Provoost et al., “End-of-life
Decision Making in Neonates and Infants: Comparison of the Netherlands and
Belgium (Flanders)”, Acta Paediatrica, Vol. 96 (2007): 820-824.
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Newborns
• The Groningen Protocol Guidelines say
euthanasia is acceptable when:
• the child's medical team and independent
doctors agree the pain cannot be eased,
• there is no prospect for improvement, and
• when parents think it's best.
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Newborns
• A 2005 survey of Flanders doctors revealed three in four were
willing to shorten the life of critically ill babies.
• In 17 deaths high doses of painkillers were explicitly administered to
end the newborn's life.
• Of 121 doctors questioned, 79% thought it was their “professional
duty”, if necessary, to prevent unnecessary suffering by hastening
death.
• The vast majority (88%) also accepted quality-of-life ethics. 58%
supported the legal termination of life in some cases.
• In most cases (84 percent) of the cases the decision was made in
consultation with the parents. Still, in 22 deaths parents were not
consulted.*
* Veerle Provoost, Filip Cools, Freddy Mortier et al., “Medical End-of-Life Decisions in Neonates and
Infants in Flanders”, The Lancet, Vol. 365 (April 9, 2005): 1315-1316.
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Suggestions for Improvement
Physician-assisted suicide, not
euthanasia, to ensure better control
that at least in the Netherlands is
lacking.
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Guideline 1
 The
physician should not suggest
assisted suicide to the patient.
Instead, it is the patient who should
have the option to ask for such
assistance.
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Guideline 2
• The request for physician-assisted suicide of an
adult, competent patient who suffers from an
intractable, incurable and irreversible disease
must be voluntary. The decision is that of the
patient who asks to die without pressure,
because life appears to be the worst alternative
in the current situation. The patient should state
this wish repeatedly over a period of time.
• These requirements appear in the abolished
Northern Territory law in Australia, the Oregon
Death with Dignity Act, as well as in the Dutch
and Belgian Guidelines.
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Guideline 3


At times, the patient’s decision might be
influenced by severe pain. The role of palliative
care can be crucial .
The Belgian law as well as the Oregon Death
with Dignity Act require the attending physician
to inform the patient of all feasible alternatives,
including comfort care, hospice care and pain
control.
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Guideline 4
• The patient must be informed of the
situation and the prognosis for recovery or
escalation of the disease, with the
suffering that it may involve. There must
be an exchange of information between
doctors and patients.
• The Belgian law and the Oregon Death
with Dignity Act require this.
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Guideline 5
 It must be ensured that the patient’s
decision is not a result of familial and
environmental pressures.
 It is the task of social workers to
examine patients’ motives and to see
to what extent they are affected by
various external pressures.
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Guideline 6
• The decision-making process should
include a second opinion in order to verify
the diagnosis and minimize the chances of
misdiagnosis, as well as to allow the
discovery of other medical options.
• A specialist, who is not dependent on the
first doctor, either professionally or
otherwise, should provide the second
opinion.
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Guideline 7
It is advisable for the identity of the
consultant to be determined by a
small committee of specialists (like
the Dutch SCEN), who will review the
requests for physician-assisted
suicide.
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Guideline 8
• Some time prior to the performance of physicianassisted suicide, a doctor and a psychiatrist are
required to visit and examine the patient so as to
verify that this is the genuine wish of a person of
sound mind who is not being coerced or
influenced by a third party. The conversation
between the doctors and the patient should be
held without the presence of family members in
the room in order to avoid familial pressure. A
date for the procedure is then agreed upon.
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Guideline 9
The patient can rescind at any time and in any
manner.
This provision was granted under the abolished
Australian Northern Territory Act and under the
Oregon Death with Dignity Act.
The Belgian Euthanasia Law holds that patients
can withdraw or adjust their euthanasia
declaration at any time.
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Guideline 10
• Physician-assisted suicide may be performed
only by a doctor and in the presence of another
doctor.
• The decision-making team should include at
least two doctors and a lawyer, who will examine
the legal aspects involved. Insisting on this
protocol would serve as a safety valve against
possible abuse. Perhaps a public representative
should also be present during the entire
procedure, including the decision-making
process and the performance of the act.
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Guideline 11
Physician-assisted suicide may be conducted in
one of three ways, all of them discussed openly
and decided upon by the physician and the patient
together: (1) oral medication; (2) self-administered,
lethal intravenous infusion; (3) self-administered
lethal injection.
Oral medication may be difficult or impossible for
many patients to ingest because of nausea or
other side effects of their illnesses. In the event
that oral medication is provided and the dying
process is lingering on for long hours, the
physician is allowed to administer a lethal
injection.
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Guideline 12
• Doctors may not demand a special fee for
the performance of assisted suicide. The
motive for physician-assisted suicide is
humane, so there must be no financial
incentive and no special payment that
might cause commercialization and
promotion of such procedures.
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Guideline 13

There must be extensive documentation in the
patient’s medical file, including the following:
diagnosis and prognosis of the disease by the
attending and the consulting physicians;
attempted treatments; the patient’s reasons for
seeking physician-assisted suicide; the patient’s
request in writing or documented on a video
recording; documentation of conversations with
the patient; the physician’s offer to the patient to
rescind his or her request; documentation of
discussions with the patient’s loved ones; and a
psychological report confirming the patient’s
condition.
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Guideline 14
• Pharmacists should
also be required to
report all prescriptions
for lethal medication,
thus providing a
further check on
physicians’ reporting.
• This is not the case
now in both countries.
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Guideline 15
• Doctors must not be coerced into taking
actions that contradict their conscience or
their understanding of their role.
• This was provided under the Northern
Territory Act.
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Guideline 16
• The local medical association should
establish a committee, whose role will be
not only to investigate the underlying facts
that were reported but also to investigate
whether there are “mercy” cases that were
not reported and/or that did not comply
with the Guidelines.
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Guideline 17
• Licensing sanctions will be taken to punish those
health care professionals who violated the
Guidelines, failed to consult or to file reports,
engaged in involuntary euthanasia without the
patient’s consent or with patients lacking proper
decision-making capacity.
• Physicians who failed to comply with the above
Guidelines will be charged and procedures to
sanction them will be brought by the Disciplinary
Tribunal of the Medical Association. Sanctions
should be significant.
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Thank you
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