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First Do No Harm: Shortening Lives of Patients without Their Explicit Request in Belgium

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Abstract

The aim of this article is to provide a critical review of one of the most worrying aspects of the euthanasia policy and practice in Belgium-the deliberate shortening of lives of some patients without their explicit voluntary request. Some suggestions designed to improve the situation and prevent abuse are offered. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
1
This article has been accepted for publication in Journal of Medical Ethics 2015 following
peer review. The definitive copyedited, typeset version will be available online at:
http://jme.bmj.com/
First Do No Harm: Intentionally Shortening Lives of Patients without Their
Explicit Request in Belgium
Raphael Cohen-Almagor
Abstract: The aim of this article is to provide a critical review of one of the most
worrying aspects of the euthanasia policy and practice in Belgium the deliberate
shortening of lives of some patients without their explicit voluntary request. Some
suggestions designed to improve the situation and prevent abuse are offered.
Keywords: Belgium, end-of-life, euthanasia, abuse, competent patients, consent
Introduction
Since the enactment of the Belgian Euthanasia Act in 2002, biannual reports are
published by the Belgian Federal Control and Evaluation Commission, established
by the government in September 2002 and tasked to monitor the law’s application.
Euthanasia in Belgium is defined as the intentional termination of a patient’s life by a
physician at the patient’s request, thus only voluntary euthanasia is legally
sanctioned. Involuntary euthanasia which is the deliberate ending of life without the
patient’s explicit request is not legally permitted under the Belgian Euthanasia Act.
2
The aim of this paper is to raise concerns about the shortening of patients
lives in Belgium without the patients’ explicit consent. First, background information
is provided. The paper surveys the published data and explains why this practice is
conducted in Belgium. It acknowledges a decrease of life-ending practices without
the patient’s explicit request and offers three possible explanations to this decrease.
The paper criticises explanations provided by some Belgian physicians for carrying
out this questionable practice. The paper also offers a critique of the Belgian Society
of Intensive Care Medicine Council statement paper on the administration of
sedative agents with the direct intention “of shortening the process of terminal
palliative care in patients with no prospect of a meaningful recovery”.
1
Finally, some
suggestions designed to improve the situation are offered. These proposals follow
conversations with Belgian medical ethicists and clinicians as to what might be an
acceptable practice at the present time, bearing in mind their own culture and
medical practices. The Belgian legislators and medical establishment are invited to
reflect and ponder so as to prevent potential abuse.
This paper is part of a research project on euthanasia in Belgium that
commenced in 2003.
2
Its methodology is based on critical review of the literature
supplemented by conversations, discussions and interviews that I have conducted in
Belgium with leading professionals (scholars and practitioners) during the past
eleven years (2003-2014). As I see little point in offering suggestions that would be
ignored by the Belgian medical profession, the extensive fieldwork in Belgium during
which I consulted relevant experts has both helped to formulate my claims and to
devise some constructive suggestions for improvement. The claims that I report from
my interviews have also been confirmed and verified by the existing literature
reported in this paper.
3
The Belgian Law and Beyond
On 20 January 2001, a commission of Belgium’s upper house voted in favour of
proposed euthanasia legislation, which would make euthanasia no longer punishable
by law, provided certain requirements were met.
3
On 25 October 2001, Belgium’s
Senate approved the law by 44 in favour, 23 against, 2 abstentions and 2 senators
who failed to register a vote. In Belgian society at large, an opinion survey showed
that three-quarters of those asked were broadly in favour of legalizing euthanasia.
4
On 16 May 2002, after only two days of heated debate, the Belgian lower house of
parliament approved the bill by 86 votes in favour, 51 against and with 10
abstentions.
5
The Socialist-Liberal-Green 'Purple coalition' overcame the objections
of the Christian Democrats. It is important to note that the euthanasia legalization
was finalized without the broad involvement of and consensus among the medical
professions.
6
While many physicians in Belgium wholeheartedly applauded the
Euthanasia Act, a considerable part of the medical profession remained silent and a
minority expressed reservations. In 2009, sixty-six percent of the sampled Belgian
physicians agreed that the euthanasia law contributes to the carefulness of
physicians' end-of-life behaviour; 10% thought that the law impedes the development
of palliative care.
7
The legislation lays out the terms for physicians to intentionally end the lives of
patients. At the heart of this legislation is the free will of the patient who asks for
euthanasia. The physician who performs euthanasia is not performing an unlawful
act if s/he has ascertained that the patient is an adult or an emancipated minor,
capable and conscious at the time of his/her request;
8
the request is voluntary, well-
thought-out and reiterated, and is not the result of outside pressure; the patient is in
4
a hopeless medical condition and complains of constant and unbearable physical or
mental pain which cannot be relieved and is the result of a serious and incurable
accidental or pathological condition, and s/he has complied with the conditions and
procedures prescribed by the present law.
9
The law sets certain conditions in order
to carry out euthanasia under terminal circumstances and defines extra conditions
for cases in which non-terminal patients request euthanasia. For the latter group of
patients (such as those who suffer from neurological conditions causing
quadriplegia) who request to die, at least one month must elapse between the
written request and the mercy killing, and the attending physician needs to consult a
psychiatrist or a specialist in the disorder in question.
10
The fourth report to the legislative chambers (20082009), drawn up by the
Federal Commission for Control and Assessment of Euthanasia, showed that 92% of
the cases were concerned with lawful euthanasia practices with terminal patients
while 8% of the cases concerned non-terminal patients. The most often declared
illnesses mentioned to justify this latter type of request were primarily
neuropsychiatric diseases, followed by degenerative neuromuscular diseases and a
combination of nonfatal “multiple pathologies”.
11
In recent years, however, the
practice of euthanasia has been extended to include people who were depressed,
and who were tired of and/or unhappy with their lives.
12
In early 2014, Belgium
became the first country to allow euthanasia for terminally ill children of any age.
Whether or not children have the experience and wisdom to make a sound choice
about such a grave decision is disputed.
13
Research also indicates some physicians'
confusion about and lack of understanding of the Euthanasia Act;
14
a problem of
inadequate consultation with an independent expert,
15
and a problem concerning
lack of notification of euthanasia cases.
16
Smets et al found that in Flanders, only
5
one of two euthanasia cases is reported to the Federal Control and Evaluation
Committee and that the unreported cases of euthanasia were generally dealt with
less carefully than the reported cases: a legally required written request was absent
in the majority of unreported cases; other physicians were consulted less in the
unreported cases than in the reported cases; the life-ending act was more often
performed with opioids, sedatives or both rather than with barbiturates and muscle
relaxants. Furthermore, in the unreported cases the lethal drugs were often
administered by a nurse alone, not by a physician.
17
Whether deliberately or not, the
physicians were disguising the end-of-life decision as a normal medical practice.
18
A constant increase in registered euthanasia cases has been observed,
predominantly in the Flemish (the Dutch-Flemish speaking part) of Belgium.
19
Approximately one of seven terminally ill patients dying at home under the care of a
General Practitioner (GP) expresses a euthanasia request in the last phase of life.
20
A Flanders 2007 study (published in 2010) shows that euthanasia and physician-
assisted suicide occurred in 2% of all Flemish deaths.
21
This rate was higher than
that in 1998 (1.1%) and in 2001 (0.3%).
22
The annual figures are constantly rising at
a rapid pace: 235 in 2003; 495 in 2007; 704 in 2008, and 1,133 in 2011.
23
In 2012,
there were 1,432 cases and in 2013, 1,807 euthanasia cases were reported.
24
Shortening Lives of Patients without Their Explicit Request
In 2014, the Belgian Society of Intensive Care Medicine Council issued a statement
paper about the administration of sedative agents with the direct intention “of
shortening the process of terminal palliative care in patients with no prospect of a
meaningful recovery”.
25
The Statement holds that shortening the dying process by
administering sedatives “beyond what is needed for patient comfort can be not only
6
acceptable but in many cases desirable”,
26
that suffering should be avoided at all
times, and that avoiding futile treatment is not only acceptable but also necessary.
The Statement further stipulates that shortening the dying process with use of
medication may sometimes be appropriate, “even in the absence of discomfort”, and
can actually improve the quality of dying, that the final decision lies in the hands of
the medical care team, and that the document applies to children as well as to
adults.
27
This paternalistic attitude is not reserved only to intensive care physicians.
Studies conducted in Flanders, before the enactment of the 2002 euthanasia law,
showed that decisions to end life without patients’ consent were common among
general practitioners. A 1996 pilot study at the town of Hasselt in Flanders showed
that the administration of lethal drugs in order to shorten the patient’s life without the
patient’s request occurred in 3.3% of cases.
28
A 1998 study conducted in Flanders at
large, where 60% of the Belgian population resides, more than 5% of all deaths in
general practice resulted from the use of drugs with the explicit intention of
shortening the patient’s life.
29
Bilsen et al wrote that during the studied period of time
an estimated 1,200 ELDs (medical end-of-life decisions) in general practice were
made illegally”.
30
The administration of lethal drugs in order to shorten patients’ lives
without their explicit request occurred in 1,796 cases (3.2 percent).
31
Deliens et al
noted that in Flanders the rate of administration of lethal drugs to patients with the
explicit intention of shortening the patient's life without their explicit request was
similar to Australia, and significantly higher than that in the Netherlands.
32
In 2007, the use of life-ending drugs with the intention to shorten life and
without explicit request occurred in 1.8% of deaths
33
and in 2013 it was 1.7% of
deaths.
34
Three possible explanations to this decrease from 3.2% in 1998 to 1.7% in
7
2013 are (1) physicians have gained experience and confidence in the practice of
euthanasia and involve the patients in the decision-making process; (2) physicians
resort to practices such as terminal sedation which is different than euthanasia;
35
(3)
physicians may not always be well acquainted with the labelling of all the medical
practices at the end of life.
36
The ambiguity creates confusion and affect research
results.
Use of life-ending drugs without explicit request involved patients who were
80-year-old or older (52.7%), those with disease other than cancer (67.5%), and
those in hospital (67.1%). The decision was not discussed with the patient in 77.9%
of cases. Physicians explained that the decision was not discussed because the
patient was comatose (70.1%), had dementia (21.1%) or because discussion would
have been harmful to the patient’s best interest (8.2%).
37
Similar reasoning was
given in the Hasselt study two decades earlier: “because this was clearly the best for
the patient” (28.2%); because of “diminished consciousness” (26.5%); because “the
patient was unconscious” (18.5%), and due to dementia (13.6%).
38
However, the
patient’s best interest argument was far less significant in 2007 (8.2%) than it was in
1996 (28.2%). In contrast, the dementia argument was much more prevalent in 2007
(21.1%) than it was in 1996 (13.6%). It should also be reminded that the law
specifically stipulates that the patient is an adult or an emancipated minor, capable
and conscious at the time of his/her request,”
39
thus lives of incompetent comatose
and demented patients should not be shortened under the Euthanasia Act.
40
The Act
does not apply to non-competent patients and it does not allow deliberate shortening
of their lives. It should also be noted that deliberate ending the lives of patients
without their request is taking place in Belgium more than in all other countries that
document such practices, including the Netherlands (0.4% in 2005).
41
It is worrying
8
that some physicians take upon themselves the responsibility to deliberately shorten
patients’ lives without a clear indication from the patients that this is what they would
want.
Physicians were asked in what circumstances they ended the lives of patients
without explicit request and described two types of situation: Shortening the length of
the patient’s final phase of agony during the last phase of the dying process, and
facilitating the death of the “terminally ill, demented and inhumanly deteriorated
patient”.
42
Their aims were to shorten the length of misery considered to be futile, to
ensure a relatively comfortable death and, most worryingly, to alleviate the burden of
the next of kin.
43
Thus defenders of the euthanasia policy in Belgium argued that life-
ending acts without explicit patient’s request should be seen as “compassionate
intended abbreviation of terminal agony”.
44
Another study by Meeussen, Van den Block, Bossuyt et al found that the
practice of explicitly and intentionally shortening lives of patients without explicit
request to die involved some patients who suffered from incurable lingering
diseases, and whose quality of life was perceived to be poor by the medical teams.
The patients were all bedridden and incapable of self-care in what was estimated as
the last phase of their lives. Their medical situation was mainly characterized as
“unbearable” and involving “persistent suffering.”
45
Most of the patients were
“unconscious or in a coma.”
46
All but one patient had lost the capacity to assess their
situation and to make an informed decision about it. One patient was considered
competent but was unable to express himself well.
47
Critique and Suggestions for Improvement
9
The practice of deliberately shortening patients’ lives without explicit request and
consent is ethically problematic and also illegal in most countries including Belgium.
From physicians’ testimonies, it appears that they acted out of compassion and
chose what they believed to be the least bad option in futile medical situations. Yet
the wishes of the patients were unknown to the physicians. Several questions are
provoked by the forgoing account: Should physicians deliberately end the lives of
patients who might still wish to continue living, despite all the odds? Should this
issue be left to the discretion of physicians? Can physicians reliably estimate the
length of time that patients have left to live? Belgian physicians who were involved in
this problematic practice estimated life-shortening effect by one week or more for
6.4% of cases.
48
How precise is this estimation?
49
Furthermore, at what stage does
treatment cease to be meaningful and become futile?
Reading the Belgian Society of Intensive Care Medicine Council Statement
evokes nagging concerns. The word “consent” is not mentioned. The Statement
asserts that a “consensus should be obtained for every end-of-life decision,”
50
that
the decisions remain “the responsibility of the ICU physician”,
51
that once this
consensus decision is made, “all members of the team must apply the plan that has
been decided on,”
52
and that while the plans for end-of-life care should be discussed
with and understood by the patient’s relatives or surrogate, this rather laconic
statement emphasises again that “the final decision is made by the care team and
not by the relatives”.
53
The tone of the Statement is paternalistic, manifesting a belief that the
intensive care physicians are capable to discern when patients have no prospect of a
“meaningful recovery” (the term “meaningful” is not explained), when treatment
becomes “futile” (the assumption is that we all agree what “futile” means), and when
10
patients “are arriving, irreversibly, at the end of their life”
54
(no indication is given of
how this potentially self-fulfilling diagnosis is to be reliably made). Furthermore,
relatives should be informed of prognosis and plans for end-of-life care but it is
emphasised yet again, that it “must be made clear that the final decision is made by
the care team”.
55
The Statement is said to uphold the principles of beneficence and
nonmaleficence. Respecting a patient’s autonomy and her wishes are not
mentioned. The decision as to which life is no longer “worth living” is not in the hands
of the patient but in the hands of the doctor.
Jean-Louis Vincent, a former president of the Society, explained in a
newspaper op-ed that because at intensive care units death usually follows after a
decision is made to stop treatment, and because this decision is often accompanied
by an increase of tranquillizers, “euthanasie non demandée” (“euthanasia not asked
for”) exceeds considerably the few thousand cases of “euthanasie demandée”
(“euthanasia asked for”) that are registered in Belgium annually.
56
Vincent explicated
that increasing drugs to relieve all pain or providing tranquillizers to prevent agitation
or anxiety were not at issue; rather his focus was on hastening death when the
patient’s quality of life has become insufficient. Vincent maintained that patients in
such a condition are not conscious enough to express an explicit demand, and that
these active interventions to shorten life are not reported to the Federal Control and
Evaluation Commission. Vincent maintained that Belgium needs a law that clearly
condemns “therapeutic stubbornness” and he invited an open and collegial
discussion about the possibility of offering drugs that shorten life of too mediocre
quality. This is even when the patient did not sign a consent paper. Vincent
concluded by saying that the first goal of medicine is to restore or maintain health,
11
that is to say restore or maintain the well-being of the individual. The first goal of
medicine is not to maintain life at all costs.
57
In 2008, I asked Vincent whether he was in favour of the law. Vincent’s answer
was: “The law may serve some who deal with slowly progressing diseases, but is
more deleterious than helpful in the majority of cases, i.e. in patients who are not
fully conscious towards the end of their life. In the ICU we often increase the doses
of sedative agents at the end of life, but the person has not signed any document, so
that this may become unlawful.”
58
At the very least it seems that these concerns should be opened for a public
debate. As Chambaere et al rightly note, the use of life-ending drugs without explicit
request of the patients occurred predominantly among groups of vulnerable patients:
80 year-old patients or older who were mostly in coma or suffered from dementia.
59
The Belgian population should be aware of the present situation and know that if
their lives may come to the point where physicians think they are not worth living, in
the absence of specific living wills advising physicians what to do then, they might be
put to death.
To clearly mark the difference between treatments administered to relieve pain
and suffering, and treatments aimed to shorten the patient’s life, transparency and
proper documentation are vital. Records should be kept of the timing and doses of
the drugs in use, and the physician’s intention at each step. Such documentation
may reduce the use of inappropriate doses of medication given in the guise of
relieving pain and suffering but actually intended to bring about the death of the
patient.
60
12
The medical staff should be made aware of the differences between voluntary
and involuntary euthanasia, relating to patient’s consent and autonomy, the
performance of the two practices, and the explicit legal directives for euthanasia.
Ethical education in medical schools and in hospital rounds should include
discussions about the requirements of the Euthanasia Act, and about the medical
requirements of due care. Open discussions are recommended relating to the
decision-making process and who should be involved in it: physicians, the patient
and all the people around the patient’s bed: her loved ones and friends, nurses,
palliative care professionals, social workers, psychologists and others. Physicians
may also benefit from discussion on decision-making processes and the appropriate
use of opioids and other medications that might shorten life.
Guidelines and adequate control mechanisms are necessary to prevent abuse
of power and to facilitate trust conferred on physicians to heal, support and provide
care for people when they are most needy and helpless.
61
Medical records should
include documentation relating to the medical condition, patients’ expressed wishes,
the decision-making process, discussions with the patient and/or her loved ones, the
palliation medication that was administered, the use or lack of use of artificial
hydration and nutrition, and the effects of the intervention.
Conclusions
Although the legalization of euthanasia was finalized without the broad involvement
and consensus among the medical profession, the acceptance of euthanasia among
Belgian medical professionals has increased from 78% in 2002 to more than 90% in
2009.
62
Social and peer pressure makes it difficult for those who oppose euthanasia
13
to uphold their position in the liberal culture that has been developing. Similar
difficulties have been recorded in the Netherlands following the legislation of the
Dutch euthanasia law.
63
Johan Bilsen and colleagues found that the enactment of
the Euthanasia Act was followed by an increase in all types of medical end-of-life
practices (euthanasia, intensified alleviation of pain, withholding or withdrawing life-
prolonging treatment, and continuous and deep sedation until death) with the
exception of the use of life-ending drugs without explicit request.
64
The use of drugs with the explicit intention to shorten life and without the
patient’s volition still continues to linger on and should be addressed adequately. The
liberal state has an obligation to protect the vulnerable. Given that ending patients’
lives without request is more common than euthanasia,
65
it is suggested to urge the
Belgian medical profession to put this issue high on its agenda. The lives of many
patients are still shortened involuntarily. Even Chambaere et al who are not critical of
life-ending acts without the patient’s explicit request implicitly acknowledge that in
31.9% of the cases they studied the practice was problematic.
66
The Belgians are
researching the way their dying patients are being handled in a medical context.
Their culture of self-searching is certainly necessary. The Belgians should ensure
that their policy is not abused.
In his critique of this paper, Dan Callahan asks the following: If Belgium has
been unable to control abuse -- and does not seem to have tried very hard -- what
reason is there to believe it will be controlled in the future? Indeed, the situation in
Belgium presents a true challenge. It is not easy to control abuse. At the same time,
opinion polls indicate that the majority of the Belgian public, 85% to 93% of them,
support euthanasia
67
and it would be coercive to deny them what they perceive as a
fundamental right. The good news is that the history of the euthanasia in Belgium is
14
young. The Euthanasia Act was passed only in 2002, and the country is still in the
early learning stages. We can hope that the Belgians learn from their experience and
will devise ways to address the concerns.
Acknowledgements
I am most grateful to J. Berre, Bert Broeckaert, Luc Deliens, Jan De Volder, Chris
Gastmans, Pierre-François Laterre, Wim Lemmens, Freddy Mortier, Guido Van
Steendam and Jean-Louis Vincent for their kind assistance. I also thank Dan
Callahan, Raanan Gillon, as well as the editor and referees of JME for their
constructive comments. All websites were accessed on 2 April 2015.
1
Vincent J-L., “Piece” (sic) of mind: End of life in the intensive care unit Statement of the Belgian
Society of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174-175.
2
Other research products include: Belgian Euthanasia Law: A Critical Analysis, JME 2009; 35(7):
43639; Euthanasia Policy and Practice in Belgium: Critical Observations and Suggestions for
Improvement, Issues in Law & Medicine 2009; 24(3): 187-218; First Do No Harm: Pressing Concerns
Regarding Euthanasia in Belgium, Int. J. of Law & Psychiatry 2013; 36: 515-21; First Do No Harm:
Euthanasia of Patients with Dementia in Belgium, J. of Medicine & Philosophy (2015, forthcoming).
3
Weber W., Belgian Euthanasia Bill gains momentum, Lancet 2001; 357: 370.
4
Deliens L., van der Wal G. The Euthanasia Law in Belgium and the Netherlands, Lancet 2003; 362,
Issue 9391: 1239-40; Osborn A., Belgians follow Dutch by legalising euthanasia, The Guardian
26
October 2001.
5
Griffiths J., Weyers H., and Adams M., Euthanasia and law in Europe. Oxford: Hart, 2008: 304-329;
Vermeersch E., The Belgian Law on euthanasia - The historical and ethical background, Acta chir
belg 2002; 102: 394-7.
15
6
Smets T., Cohen J., Bilsen J. et al., Attitudes and experiences of Belgian physicians regarding
euthanasia practice and the Euthanasia Law, Journal of Pain & Symptom Management 2011; 41(3):
581.
7
Smets T., Cohen J., Bilsen J. et al., Attitudes and experiences of Belgian physicians regarding
euthanasia practice and the Euthanasia Law, Journal of Pain & Symptom Management 2011; 41(3):
581.
8
Freddy Mortier, professor of ethics at Ghent University, explained that emancipated minors relate to
”boundary cases of 16-17 year old patients.” Mortier argued that there were very few cases of
emancipated minors who received help to die by doctors. Interviews with F. Mortier, Ghent (6
February 2003 and 14 February 2005). See Cohen-Almagor R., Belgian Euthanasia Law: A Critical
Analysis, JME 2009; 35(7): 43639.
9
Belgian Act on Euthanasia, Chapter II, Section 3, no. 1, http://www.ethical-
perspectives.be/viewpic.php?LAN=E&TABLE=EP&ID=59. One referee commented that the line
between lawful euthanasia and other end-of-life practices is blurred and creates confusion.
10
Belgian Act on Euthanasia, Chapter II, Section 3, no. 3(2).
http://www.ethical-perspectives.be/viewpic.php?LAN=E&TABLE=EP&ID=59
11
Euthanasia in Belgium: 10 years on, Dossier of the European Institute of Bioethics,
http://www.livinganddyingwell.org.uk/sites/default/files/LDW%20-%20Research%20-
%20Belgium%20-%2010-Year%20Review_0.pdf
12
Cohen-Almagor R, First Do No Harm: Euthanizing People Who Are Tired of Life” in Belgium,
paper presented in Euthanasia and Assisted Dying: Lessons from Belgium, The Anscombe Bioethics
Centre, Oxford and St Mary’s University, Twickenham (1 November 2014).
13
Siegel AM, Sisti DA, Caplan AL, Euthanasia for minors in Belgium, JAMA 2014; 312(12): 1259;
Kelly D, Euthanasia for children and young people?, International J. of Palliative nursing 2014; 20(5):
211.
14
Smets T, Bilsen J, Cohen J et al., The labelling and reporting of euthanasia by Belgian physicians:
A study of hypothetical cases, European Journal of Public Health 2012; 22(1): 19-26.
15
Van Wesemael Y, Cohen J, Bilsen J et al. Process and outcomes of euthanasia requests under the
Belgian act on euthanasia: A nationwide survey, Journal of Pain and Symptom Management 2011;
16
42: 721733; Smets T, Bilsen J, Van den Block L et al., Euthanasia in patients dying at home in
Belgium: Interview study on adherence to legal safeguards, British J. of General Practice 2010; 60
(573): e163e170.
16
Smets T, Bilsen J, Van den Block L et al., Euthanasia in patients dying at home in Belgium:
Interview study on adherence to legal safeguards, British J. of General Practice 2010; 60 (573):
e163e170; Smets T, Bilsen J, Cohen J et al., The labelling and reporting of euthanasia by Belgian
physicians: A study of hypothetical cases, European J. of Public Health 2012; 22 (1): 19-26,
http://eurpub.oxfordjournals.org/content/early/2010/12/03/eurpub.ckq180.full
17
Smets T, Bilsen J, Cohen J et al., Reporting of euthanasia in medical practice in Flanders, Belgium:
cross sectional analysis of reported and unreported cases, BMJ 2010; 341, c5174.
18
Smets T, Bilsen J, Cohen J et al., Reporting of euthanasia in medical practice in Flanders, Belgium:
cross sectional analysis of reported and unreported cases, BMJ 2010; 341, c5174.
19
Smets T., Bilsen J., Cohen J. et al., Legal euthanasia in Belgium: characteristics of all reported
euthanasia cases, Medical Care 2010; 48: (2): 187-92; Bilsen J., Cohen J., Chambaere K. et al.,
Medical end-of-life practices under the Euthanasia Law in Belgium, NEJM 2009; 361: 1119-21; Rise
in assisted deaths 23 August 2011, Presseurop, http://www.presseurop.eu/en/content/news-brief-
cover/878961-rise-assisted-deaths
20
Meeussen K., Van den Block L., Bossuyt N. et al., Dealing with requests for euthanasia: interview
study among General Practitioners in Belgium, Journal of Pain & Symptom Management 2011; 41(6),
p. 1068.
21
Chambaere K., Bilsen J., Cohen J. et al., Physician-assisted deaths under the Euthanasia Law in
Belgium: a population-based survey, Canadian Medical Association Journal 2010; 182(9): 896.
22
Bilsen J., Cohen J., Chambaere K. et al., Medical end-of-life practices under the Euthanasia Law in
Belgium, p. 1119.
23
de Diesbach E., de Loze M., Brochier C., and Montero E., Euthanasia in Belgium: 10 years on
(Brussels: European Institute of Bioethics, 2012): 3.
24
Commission Fédérale de Contrôle et d’Évaluation de l’Euthanasie. 2014 Report. Service
Public Federal (SPF) Sante publique, Securite de la Chaine alimentaire et Environnement (Brussels:
17
Secrétariat de la Commission),
http://www.health.belgium.be/filestore/19097638/Rapport_Euthanasie12-13_FR.pdf . See also
Caldwell Simon, “Five people killed EVERY DAY by assisted suicide in Belgium as euthanasia cases
soar by 25 per cent in last year alone”, The Daily Mail (28 May 2014).
25
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174-175.
26
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174-175, at 174.
27
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174.
28
Mortier F., Deliens L., Bilsen J., et al., End-of-life decisions of physicians in the city of Hasselt
(Flanders, Belgium), Bioethics 2000; 14(3): 254-267, at 257, 259.
29
Bilsen J., Vander Stichele R., Mortier F. et al., The incidence and characteristics of end-of-life
decisions by GPs in Belgium, Family Practice 2004; 21(3): 283.
30
Bilsen J., Vander Stichele R., Mortier F. et al., The incidence and characteristics of end-of-life
decisions by GPs in Belgium, Family Practice 2004; 21(3): 286.
31
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.
32
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.
33
Chambaere K., Bilsen J., Cohen J. et al., Physician-assisted deaths under the Euthanasia Law in
Belgium: A population-based survey, p. 896.
34
Chambaere K., Vander Stichele R., Mortier F. et al., Recent trends in euthanasia and other end-of-
life practices in Belgium, N Eng J Med 2015; 372;12 (19 March),p. 1179.
35
Broeckaert B., Mullie A., Gielen J., et al., Palliatieve Sedatie, Richtlijn, Versie: 2.0 2012,
http://www.pallialine.be/accounts/129/docs/richtlijn_palliatieve_sedatie.pdf; Broeckaert B., Mullie A.,
Gielen J., et al., Palliative sedation Directive, Version: 2.0 (30 June 2012, in English).
36
Deyaert J., Cohen J., Chambaere K. et al. Labelling of end-of-life decisions by physicians, JME
2014; 40: 505-507.
18
37
Chambaere K., Bilsen J., Cohen J. et al., Physician-assisted deaths under the Euthanasia Law in
Belgium: A population-based survey, pp. 895-8.
38
Mortier F., Deliens L., Bilsen J., et al., End-of-life decisions of physicians in the city of Hasselt
(Flanders, Belgium), Bioethics 2000; 14(3): 254-267, at 261. There is no information about the
remaining cases.
39
Belgian Act on Euthanasia, Chapter II, Section 3, no. 1,
http://www.ethical-perspectives.be/viewpic.php?LAN=E&TABLE=EP&ID=59
40
Cohen-Almagor R., First Do No Harm: Euthanasia of Patients with Dementia in Belgium, J. of
Medicine & Philosophy (forthcoming).
41
Van der Heide A., Onwuteaka-Philipsen B., Rurup MI., et al., End-of-life practices in the
Netherlands under the Euthanasia Act, N. Engl. J. Med. 2007; 356: 1957-65.
42
Sercu M., Pype P., Christiaens T., et al, Are general practitioners prepared to end life on request in
a country where euthanasia is legalised?, J Med Ethics 2012; 38: 277.
43
Sercu M., Pype P., Christiaens T., et al, Are general practitioners prepared to end life on request in
a country where euthanasia is legalised?, J Med Ethics 2012; 38: 277. For further discussion, see
Pivodic L., Van den Block L., Pardon K. et al., Burden of family carers and care-related financial
strain at the end of life: a cross-national population-based study, European J. of Public Health (17
March 2014).
44
Bernheim JL., Wim Distelmans W., Mullie A., Questions and Answers on the Belgian Model of
Integral End-of-Life Care: Experiment? Prototype? Bioethical Inquiry 2014; 11:507529; Chambaere
K., Bilsen J., Cohen J. et al., Physician-assisted deaths under the Euthanasia Law in Belgium: a
population-based survey, Canadian Medical Association Journal 2010; 182(9): 895-901.
45
Meeussen K., Van den Block L., Bossuyt N. et al., Physician reports of medication use with explicit
intention of hastening the end of life in the absence of explicit patient request in general practice in
Belgium, BMC Public Health 2010; 10: 186.
46
Meeussen K., Van den Block L., Bossuyt N. et al., Physician reports of medication use with explicit
intention of hastening the end of life in the absence of explicit patient request in general practice in
Belgium, BMC Public Health 2010; 10: 186.
47
Meeussen K., Van den Block L., Bossuyt N. et al., Physician reports of medication use with explicit
intention of hastening the end of life in the absence of explicit patient request in general practice in
19
Belgium, BMC Public Health 2010; 10: 186.
48
Deyaert J., Chambaere K, Cohen J. et al., Labelling of end-of-life decisions by physicians, J Med
Ethics 2014; 40: 506.
49
Poses RM
,
Bekes C, Copare FJ, Scott WE, The answer to "What are my chances, doctor?"
depends on whom is asked: prognostic disagreement and inaccuracy for critically ill patients, Crit
Care Med. 1989; 17(8):827-33.
50
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174.
51
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174.
52
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174.
53
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174-175.
54
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 174.
55
Vincent J-L., “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society
of Intensive Care Medicine, J of Critical Care 2014; 29(1): 175.
56
Vincent J-L, Carte blanche: “Maintenons la santé, mais pas la vie à tout prix”, Le Soir (25 February
2014), http://www.lesoir.be/478262/article/maintenant-sur-lesoirbe/2014-02-25/carte-blanche-
maintenons-sante-mais-pas-vie-tout-prix .
57
Vincent J-L, Carte blanche: “Maintenons la santé, mais pas la vie à tout prix”, Le Soir (25 February
2014), http://www.lesoir.be/478262/article/maintenant-sur-lesoirbe/2014-02-25/carte-blanche-
maintenons-sante-mais-pas-vie-tout-prix . See also Cook M., Belgian intensive care doctors back
involuntary euthanasia, BioEdge (11 April 2014).
58
Personal communication of Professor Jean-Louis Vincent (10 December 2008).
59
Chambaere K., Bilsen J., Cohen J. et al., Physician-assisted deaths under the Euthanasia Law in
Belgium: a population-based survey, Canadian Medical Association Journal 2010; 182(9): 899.
20
60
Sprung CL., Ledoux D., Bulow, HH., et al., Relieving suffering or intentionally hastening death:
where do you draw the line?, Crit. Care Med. 2008; 36(1): 8-13.
61
UNESCO Universal Declaration on Bioethics and Human Rights (2005).
62
Smets T., Cohen J., Bilsen J., et al., Attitudes and experiences of Belgian physicians regarding
euthanasia practice and the Euthanasia Law, p. 590; Miccinesi G., Fischer S., Paci E., et al.,
Physicians’ attitudes towards end-of-life decisions: a comparison between seven countries, Social
Science and Medicine 2005; 60(9): 1961-1974; Van Wesemael Y., Cohen J., Bilsen J., et al.,
Implementation of a service for physicians’ consultation and information in euthanasia requests in
Belgium, Health Policy (online 5 January 2012).
63
Cohen-Almagor R, Euthanasia in the Netherlands (Dordrecht: Springer-Kluwer, 2004).
64
Bilsen J., Cohen J., Chambaere K. et al., Medical end-of-life practices under the Euthanasia Law in
Belgium, p. 1120.
65
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.
66
Chambaere K., Bernheim JL., Downar J., et al., Characteristics of Belgian ‘life-ending acts without
explicit patient request’: a large-scale death certificate survey revisited, CMAJ Open 2014; 2(4): E262-
E267.
67
Cohen-Almagor R., Belgian Euthanasia Law: a critical analysis, J Med Ethics 2009; 35(7): 4369.
...  Meretz the same (5,5). Changed name, added names, no difference. ...
...  Meretz the same (5,5). Changed name, added names, no difference. ...
... Dan was not surprised to hear that a similar culture is prevailing in Belgium, and that there as well patients' lives are shortened prematurely. He provided constructive comments on an article I wrote in this regard [5]. ...
Raw Data
Full-text available
This was a very busy month for Israel and for me. In Israel, elections that may prove very important, especially if the country will change leadership and direction. For me, I was on a research and lecture tour in Scandinavia and North America. Most of it was dedicated to my research on the failed peace process between Israel and the PLO. I conducted 13 interviews with policy makers, negotiators and facilitators and conducted research in relevant archives. I learned a lot. I am grateful to The Israel Institute for enabling me this important and fascinating research. I also thank dozens of people in Stockholm, Oslo and Washington who opened their doors to me, hosted me in many generous ways that I only wish I could reciprocate, and provided kind assistance that made this trip memorable and important. The past month I had two interviews for the BBC, delivered three lectures in Oslo, Washington and London, and published a new article.
... Recovery is the origin of a new significance and meaning given to life, all the while overcoming the disastrous effects of a psychiatric illness." 11 In the same way, in psychiatry, palliative care and the care called "crustative" or "oyster" care (care for seriously afflicted psychiatric patients, around whom the healthcare team forms as it were a solid shell or "oyster", within which these persons feel secure) 12 are paths that need to be further developed, and that can contribute to better care for patients who experience intense psychological suffering. ...
... Two articles about the Belgian situation [11,12] discuss cases where a person is put to death without having asked for it; most of them cases where the person was either unconscious or suffering from dementia. Not only was the family frequently consulted (79%) when making the decision, but "Unbearable situation for the family" was one of the reasons given in 38% of cases. ...
Book
Full-text available
This open access book has been written by ten Belgian health care professionals, nurses, university professors and doctors specializing in palliative care and ethicists who, together, raise questions concerning the practice of euthanasia. They share their experiences and reflections born out of their confrontation with requests for euthanasia and end-of-life support in a country where euthanasia has been decriminalized since 2002 and is now becoming a trivial topic. Far from evoking any militancy, these stories of life and death present the other side of a reality needs to be evaluated more rigorously. Featuring multidisciplinary perspectives, this though-provoking and original book is intended not only for caregivers but also for anyone who questions the meaning of death and suffering, as well as the impact of a law passed in 2002. Presenting real-world cases and experiences, it highlights the complexity of situations and the consequences of the euthanasia law. This book appeals to palliative care providers, hematologists, oncologists, psychiatrists, nurses and health professionals as well as researchers, academics, policy-makers, and social scientists working in health care. It is also a unique resource for those in countries where the decriminalization of euthanasia is being considered. Sometimes shocking, it focuses on facts and lived experiences to challenge readers and offer insights into euthanasia in Belgium.
... Otro efecto colateral reviste un mayor peligro: la extensión de la eutanasia sin consentimiento. Es un hecho que en Bélgica este tipo de práctica, que es ilegal -pues en ese país se requiere contar con la aceptación de la persona para proceder a su eliminación-, ha venido incrementándose conforme pasan los años: un estudio revela que los casos de eutanasia involuntaria (no pedidas por los pacientes), en personas de más de 80 años se elevaron al 52,7%; pero no solo eso, también la eutanasia para personas que no sufrían de cáncer se elevó a 67,5% y además en un 77,9% el asunto no fue discutido con los directamente implicados (44). ...
Article
Full-text available
La eutanasia es un fenómeno antiguo que en las últimas décadas trata de extenderse bajo la forma de derecho. Para entender qué es, cuáles son sus efectos y por qué es un componente de la denominada cultura de la muerte, se puede reflexionar sobre algunos tópicos: los componentes claves del actuar humano; la experiencia de los primeros países en legalizar esa práctica; algunos errores conceptuales que están en la base del apoyo a la eutanasia y riesgos que lleva consigo legalizar la eutanasia. Se concluye con una reflexión sobre la importancia de enseñar, desde la familia, a respetar al ser humano en lo que esencialmente es, en su dignidad intangible, y de mantener un debate ilustrado por la ciencia y no por la ideología, donde el juicio racional desenmascare la ficción jurídica de imponer una pena de muerte larvada a través de la eutanasia.
... Even in states with strict regulations, euthanasia practice poses the risk of a slippery slope, as shown by documented cases of life-terminating acts without explicit request, and its harmful effects on the administering physicians are significant. [2][3][4] In contrast, data from Oregon strongly suggest that a legally well-regulated practice of physician-assisted suicide avoids most of the negative implications of euthanasia and offers a sustainable option for people who wish to hasten their death. 5,6 In our opinion, this could also be a model for German law. ...
... Two articles about the Belgian situation [11,12] discuss cases where a person is put to death without having asked for it; most of them cases where the person was either unconscious or suffering from dementia. Not only was the family frequently consulted (79%) when making the decision, but "Unbearable situation for the family" was one of the reasons given in 38% of cases. ...
Chapter
Full-text available
Since the Oregon Death with Dignity Act was adopted in 1997, an increasing number of people have requested euthanasia, showing that life has become unbearable for them. However, a person who expresses the wish to die by euthanasia is not saying that he/she prefers death to life, but rather that death seems preferable to life under the actual circumstances. In order to respond to a person’s suffering, we need to understand the nature of that suffering, as they experience it. Suffering may be physical, psychological, relational, spiritual, or existential; frequently these different aspects overlap or intermingle, particularly in a serious illness. Euthanasia does not improve life—it ends it by giving death. But when the response involves listening and accepting the person in his/her present situation, it becomes possible to work together with the person to see what can be done to help reduce suffering. We can look for means of relief for the person’s individual, unique suffering, in partnership with the patient and his/her family and friends, using the resources of both medical knowledge and our shared humanity. The willingness to walk on this shared path with the sick person is in itself an affirmation of his/her human dignity.
... Our experts unanimously emphasize competency only at the time of drafting AEDs than at the time of assisted dying provision, as insistence on the latter may result in patients dying earlier than necessary because they worry their window of opportunity may close, thus, they take advantage of the law sooner rather than later. This view is also supported by others (Bolt et al., 2015;Cohen-Almagor, 2015). ...
Article
Dementia is one of the prominent conditions for which an aging population has been seeking end-of-life solutions such as assisted dying. Individuals with dementia, however, are often unable to meet the eligibility criteria of being mentally competent and are thus discriminated against in relation to assisted dying laws. Provided that the assisted death directive is being made in sound mind, it is still of concern whether these advance directives can be appropriately framed and safeguarded to protect the wish of these vulnerable individuals while preventing harm. Therefore, to establish consensus views of experts on primary issues of, and concerns about, assisted dying for individuals with dementia as well as exploring tentative conceptual framework to safeguard practice and application, a three-round Delphi study was conducted. A core group of 12 experts from five countries was recruited comprising expertise in domains relevant to assisted dying and dementia. A semantic–thematic approach was applied to analyze the 119 generated statements. Evaluation of these research statements resulted in full consensus of 84 (70%) items. Our primary findings highlight seven core domains: applicability of assisted dying for dementia; ethical, practical, and pathological issues regarding the application of assisted dying; and ethical, legal, and professional recommendations for the ways forward. Despite the issues surrounding the provision of assisted death for individuals with dementia, our findings lead us to cautiously conclude that devising “adequate” safeguards is achievable. The result of this research may benefit future research and practice.
... The first article was published in 2015 in the Journal of Medical Ethics, titled: First do no harm: Intentionally shortening lives of patients without their explicit request in Belgium [8]. And the second article was published in 2014 in the Journal of Critical Care, titled: "Piece" of mind: End of life in the intensive care unit. ...
Article
Full-text available
The Belgian Euthanasia Act of 2002 (The Act), amended in 2014 to include the Minor Act (The Minor Act), has drawn international criticisms for its liberal laws and practices regarding Euthanasia. This research study is a response to media allegations that the liberal laws on euthanasia has encouraged doctors to adopt a paternalistic approach towards their patients by terminating their lives without their explicit consent, i.e. engaging in involuntary Euthanasia. Although in theory, only voluntary euthanasia (explicit patient request and therefore consent) is permitted in Belgium, the media allegations implied that in practice, involuntary euthanasia (no explicit patient request and therefore no consent) is practiced, especially in the Intensive Care Units (ICUs) in Belgium. One major criticism is that because of its liberal laws, Belgian doctors are killing patients without their non-explicit consent. Specifically, it is alleged that Intensivists are shortening lives or hastening the deaths of their patients without their non-explicit consent in the ICUs in the Wallonia Region in Belgium. This research study conducted an empirical-qualitative study to discover if these media allegations were true or false, by interviewing heads of ICUs in five major hospitals in the Wallonia region in Belgium. The research discovered that the media allegations are true, but they are also false. The media allegations are true because shortening life or hastening the death is sometimes practiced in the ICUs without the patient’s non-explicit consent. The media allegations are false because consent is not available due to the patient’s critical condition, and not because it was not asked for. In other words, what is practiced in the ICUs is non-voluntary euthanasia or where patient is unable to request or consent to euthanasia.
Article
Background Involuntary commitment of the mentally ill and forced treatment of suicidal persons are practiced worldwide, with underlying premises that contrast with the respect for autonomy upon which Medically Assisted Death (MAD) (euthanasia and assisted suicide) for the mentally ill is based. Methodology We trace the transition from paternalistic mass incarcerations to hospitalization only for dangerousness. Results In response to criticisms that predicting dangerousness is indefensibly inexact, criteria have shifted to emphasize incompetence. Outside the judicial and legislative realms, helplines use different ethical premises operationalized in contrasting practices in response to persons who have attempted or are at imminent risk of attempting suicide. Some respect refusals of help while others organize invasive rescues. In carceral institutions with inhumane conditions, controversial forced feeding protocols pit the desire to save lives against forced living with extreme suffering. As MAD for persons suffering from a mental disorder is increasingly debated, arguments in favor focus on recognition of the capacity for self-determination, the benevolence of ending interminable suffering, and MAD as a human right which the mentally ill should be able to access without discrimination. Opponents cite research on the unpredictable course of mental disorders and inability to predict when the disorder is irremediable. They emphasize pervasive ambivalence in suicidal desires and that legalizing MAD for mental illness is inherently stigmatizing. Discussion MAD for mental illness places physicians who are often not familiar with the patient's lifetime social-emotional history in the role of making life-ending decisions. Autonomy must be tempered by protection of vulnerable populations.
Article
In the present time, what has been called the “medical–industrial insurance complex” in the United States needs reform. As health insurance in the United States remains inaccessible to millions of people, and as prices continue to rise, questions arise about the most moral ways to ensure delivery of health care especially to the most vulnerable populations. In this essay, I offer a virtue analysis of the moral implications of health insurance mandated by the US Government in contrast to an increasingly popular alternative to insurance, namely, healthcare sharing ministries. In part 1, I list some of the moral problems entangled with US Government-mandated health insurance, including injustice, disrespect for patient autonomy, limitations on patient freedom, exploitation of patients for profit, undermining of conscience rights, cooperation with evil, and scandal. In part 2, I discuss the issue of risk and then list some potential moral advantages to healthcare ministries, including respect for patient autonomy, conscience, and the religious freedom to witness to the Catholic faith in charity and solidarity. Summary Mandated health insurance the United States presents some moral challenges for conscientious Catholics, whereas healthcare sharing ministries appear to ameliorate some of these issues. Ultimately, the individual should have freedom to choose either insurance or healthcare sharing, given the different benefits and risks entailed by both.
Article
Full-text available
In Memory of Ed Pellegrino Euthanasia in Belgium is not limited to terminally ill patients. It may be applied to patients with chronic degenerative diseases. Currently, people in Belgium wish to make it possible to euthanize incompetent patients who suffer from dementia. This article explains the Belgian law and then explores arguments for and against euthanasia of patients with dementia. It probes the dementia paradox by elucidating Dworkin’s distinction between critical and experiential interests, arguing that at the end-of-life this distinction is not clearcut. It argues against euthanasia for patients with dementia, for respecting patients’ humanity and for providing them with more care, compassion, and good doctoring.
Article
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"Life-ending acts without explicit patient request," as identified in robust international studies, are central in current debates on physician-assisted dying. Despite their contentiousness, little attention has been paid to their actual characteristics and to what extent they truly represent nonvoluntary termination of life. We analyzed the 66 cases of life-ending acts without explicit patient request identified in a large-scale survey of physicians certifying a representative sample of deaths (n = 6927) in Flanders, Belgium, in 2007. The characteristics we studied included physicians' labelling of the act, treatment course and doses used, and patient involvement in the decision. In most cases (87.9%), physicians labelled their acts in terms of symptom treatment rather than in terms of ending life. By comparing drug combinations and doses of opioids used, we found that the life-ending acts were similar to intensified pain and symptom treatment and were distinct from euthanasia. In 45 cases, there was at least 1 characteristic inconsistent with the common understanding of the practice: either patients had previously expressed a wish for ending life (16/66, 24.4%), physicians reported that the administered doses had not been higher than necessary to relieve suffering (22/66, 33.3%), or both (7/66, 10.6%). Most of the cases we studied did not fit the label of "nonvoluntary life-ending" for at least 1 of the following reasons: the drugs were administered with a focus on symptom control; a hastened death was highly unlikely; or the act was taken in accordance with the patient's previously expressed wishes. Thus, we recommend a more nuanced view of life-ending acts without explicit patient request in the debate on physician-assisted dying.
Article
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This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.
Article
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The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009-31 December 2010). Sudden deaths were excluded. We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs. In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.
Article
Full-text available
Potentially life-shortening medical end-of-life practices (end-of-life decisions (ELDs)) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices (described according to the precise act, the intention, the presence of an explicit patient request and the self-estimated degree of life shortening) they label as euthanasia or sedation. We conducted a large stratified random sample of death certificates from 2007 (N=6927). The physicians named on the death certificate were approached by means of a postal questionnaire asking about ELDs made in each case and asked to choose the most appropriate label to describe the ELD. Response rate was 58.4%. In the vast majority of practices labelled as euthanasia, the self-reported actions of the physicians corresponded with the definition in the Belgian euthanasia legislation; practices labelled as palliative or terminal sedation lack clear correspondence with definitions of sedation as presented in existing guidelines. In these cases, an explicit life-shortening intention by means of drug administration was present in 21.6%, life shortening was estimated at more than 24 h in 51% and an explicit patient request was absent in 79.7%. Our results suggest that, unlike euthanasia, the concept of palliative or terminal sedation covers a broad range of practices in the minds of physicians. This ambiguity can be a barrier to appropriate sedation practice and indicates a need for better knowledge of the practice of palliative sedation by physicians.
Article
A survey is provided of the genesis of the euthanasia laws in Belgium and the Netherlands, with the intent to provide a clear idea of the concepts involved and of the rationale for their introduction. The role of the Belgian Consultative Committee on Bioethics in the development of the ethical discussion in Belgium is explained as well as the essence of the profound ethical divide between the ‘coalition’ and the Christian Democrats. After a summary of the basic points of the law, a comparison is made between the Belgian and the Dutch laws and their ethical foundations.
Article
To the Editor: In Belgium, where euthanasia was legalized in 2002, large-scale repeat surveys have monitored the evolution of medical end-of-life practices since 1998, with subsequent surveys conducted in 2001 and 2007(1),(2) and the latest in 2013. As was done in previous surveys,(2) we sent questionnaires to 6188 physicians certifying death certificates from the first half of 2013 in Flanders, the Dutch-speaking half of Belgium, with approximately 6 million inhabitants and 58,000 deaths annually (see the Supplementary Appendix, available with the full text of this letter at NEJM.org). The response rate was 60.6%. The response sample was weighted to be . . .
Article
In Reply Dr Chambaere and colleagues present a thoughtful response to our Viewpoint. However, we disagree that any age restriction on the availability of euthanasia is arbitrary. As these authors acknowledge, the wisdom and self-reflectiveness required in making a decision for euthanasia are capacities that develop throughout the life cycle. It is significantly more likely that adolescents and young children, compared with older adults at the end of life, would be ill-equipped to make a decision of such magnitude. What we emphasized in our Viewpoint is that children lack the wisdom and experience requisite to make a sound choice about a decision of such magnitude.
Article
In February 2014 the Belgian parliament voted to extend the existing euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering 'constant and unbearable pain', and whose parents and health professionals agree with the decision. The child also has to be interviewed by a psychologist or psychiatrist to ascertain and certify their 'capacity of discernment'.