Euthanasia in the Netherlands and in Belgium: Law, Practice, Pitfalls and Lessons

1
Euthanasia in the Netherlands and in Belgium
Law, Practice, Pitfalls and Lessons

• Raphael Cohen-Almagor

2
Preliminaries Comparative Law
3
Preliminaries Comparative Law
4
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
  someones 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.

6
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.

7
Belgian Euthanasia Law

• On January 20, 2001 the euthanasia commission of
  Belgiums 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 Belgiums
  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.

8
The NetherlandsBackground

• National and International criticism.
• The Research Reports of 1990, 1995, 2003, 2007
  and 2009
• Contrasting Interpretations
• The Practice of Euthanasia and the Legal Framework

9
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.

11
Belgium - Worrisome Data

• Prior the law, studies have shown that more than
  one in 10 deaths among the countrys 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.

12
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.

13
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.

14
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.

15
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.

16
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.

17
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.

18
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 patients home.
• Only 14 percent of all euthanasia requests were
  written in French. 86 of the declarations were
  written in Flemish.

19
Palliative Care

• Until 2000, palliative care was under-developed
  in both countries.
• Palliation seemed to be opposed to euthanasia.
• Both countries preferred to develop the practice
  of euthanasia.

20
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.

21
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.

23
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.

24
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.

25
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.

26
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.

27
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.

30
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.

35
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.

36
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.

37
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.

38
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.

39
Suggestions for Improvement

• Physician-assisted suicide, not euthanasia, to
  ensure better control that at least in the
  Netherlands is lacking.

40
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.

41
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.

42
Guideline 3

• At times, the patients 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.

43
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.

44
Guideline 5

• It must be ensured that the patients 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.

45
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.

46
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.

47
Guideline 8

• Some time prior to the performance of
  physician-assisted 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.

48
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.

49
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.

50
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.

51
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.

52
Guideline 13

• There must be extensive documentation in the
  patients medical file, including the following
  diagnosis and prognosis of the disease by the
  attending and the consulting physicians
  attempted treatments the patients reasons for
  seeking physician-assisted suicide the patients
  request in writing or documented on a video
  recording documentation of conversations with
  the patient the physicians offer to the patient
  to rescind his or her request documentation of
  discussions with the patients loved ones and a
  psychological report confirming the patients
  condition.

53
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.

54
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.

55
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.

56
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
  patients 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.

57
Thank you