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Questions and Answers on the Belgian Model of Integral End-of-Life Care: Experiment? Prototype?: “Eu-Euthanasia”: The Close Historical, and Evidently Synergistic, Relationship Between Palliative Care and Euthanasia in Belgium: An Interview With a Doctor Involved in the Early Development of Both and Two of His Successors

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Abstract

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.
ORIGINAL RESEARCH
Questions and Answers on the Belgian Model of Integral
End-of-Life Care: Experiment? Prototype?
Eu-Euthanasia: The Close Historical, and Evidently Synergistic, Relationship
Between Palliative Care and Euthanasia in Belgium: An Interview With a Doctor
Involved in the Early Development of Both and Two of His Successors
Jan L. Bernheim &Wim Distelmans &Arsène Mullie &
Michael A. Ashby
Received: 16 June 2013 /Accepted: 10 April 2014 /Published online: 16 August 2014
#Springer Science+Business Media Dordrecht 2014
Abstract This article analyses domestic and foreign
reactions to a 2008 report in the British Medical Journal
on the complementary and, as argued, synergistic rela-
tionship between palliative care and euthanasia in Bel-
gium. 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 foun-
ders 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 synergis-
tic development was made possible by public confi-
dence in the health care system and widespread progres-
sive social attitudes that gave rise to a high level of
community support for both palliative care and eutha-
nasia. 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.
Keywords Palliative care .Euthanasia .Death and
dying .Belgium
Bioethical Inquiry (2014) 11:507529
DOI 10.1007/s11673-014-9554-z
This paper has been rewritten as an interview with MA, based on an
original draft received by him from the three Belgian authors (JB,
WD, AM) for informal advice about publication. The opinions
expressed in this article are the lattersown and do not necessarily
reflect the views of their organisations or employers. Answers were
drafted by JB and complemented or corrected by WD and AM, who
agreed with the final version. Where the positions of the authors or
the FPCFl and LEIF organisations differ, these divergences are
reflected in the text. WD sees some differences as fundamental.
J. L. Bernheim (*)
End-of-Life Care Research Group, Vrije Universiteit Brussel
and Ghent University, Faculty of Medicine and Pharmacy,
Vrije Universiteit Brussel, Laarbeeklaan, 103, 1090 Brussels,
Belgium
e-mail: jan.bernheim@vub.ac.be
W. Di st el ma ns
Supportive and Palliative Care Department, UZ Brussel,
Brussel, Belgium
A. Mullie
Federation Palliative Care Flanders, Vilvoorde, Belgium
M. A. Ashby
Royal Hobart Hospital, Southern Tasmania Health
Organisation, and School of Medicine, Faculty of Health
Sciences, University of Tasmania, Tasmania, Australia
Introduction
An original study (Bernheim et al. 2008), which was
more recently updated (Bernheim et al. 2012), presented
historical, regulatory, and epidemiological data showing
that in Belgium the promotion of the legalisation of
euthanasia and the advocacy of the development of
palliative care (PC) were synergistic, rather than antag-
onistic. It has also been demonstrated that since the
legalisation of euthanasia, PC has strongly expanded
and prudence in decision-making and care at the end
of life has improved. No substantial evidence of so-
called practical slippery slope(van der Burg 1991)
phenomena has been found (Bernheim et al. 2008;
Bernheim et al. 2012; Chambaere et al. 2010a;Lewis
and Black 2013
1
), and Belgiansconfidence in their
health care system, already high before the euthanasia
legislation, further rose to the second-highest in Europe
(European Values Study 2008).
Since 2008 several papers have vigorously challenged
this synergyarticle, with two main types of criticism.
Some took issue with the data and pragmatic consider-
ations, arguing that the legal safeguards against abuse are
insufficiently enforced (Materstvedt 2009; Pereira 2011;
Cohen-Almagor 2013), and others aimed to refute the
conclusions on fundamental ideological grounds (Jas-
pers, Müller-Busch, and Nauck 2009; Kettler and Nauck
2010; Johnstone 2012; Materstvedt 2012). The synergy
paper proposed the concept of integral palliative careto
denote the Federation of Palliative Care Flanders
(FPCFl) endorsement and integration of euthanasia. To
date, worldwide, this is the only professional PC organi-
sation to have done so (Federatie Palliatieve Zorg
Vlaanderen 2003;VandenBergheetal.2013). We have
also argued that some individual patientsrequests for
euthanasia stem from their judgement that the initiation or
pursuit of palliative care is futile.This is because PC
does not or no longer meets the needs and wishes of those
patients who prefer to have assistance to die rather than a
protracted naturaldeath in a palliative care program
(however well-intentioned and however good the support
and symptom control). Both concepts of integraland
futilepalliative care have been ideologically challenged
in the last few years (Jaspers, Müller-Busch, and Nauck
2009; Kettler and Nauck 2010; Johnstone 2012;
Materstvedt 2012). A response to these theoretical objec-
tions is in preparation.
After presentations of the synergydata, there also
were many questions asked and objections raised, mainly
internationally. These questions include the following:
1. What is it like for a doctor to perform euthanasia?
2. What is the influence of a medical practitioners
personal beliefs and views on his or her willingness
to participate in euthanasia?
3. How did the Belgian model of end-of-life care
come about?
4. Why is there 20 times more euthanasia than
physician-assisted suicide?
5. How is the Belgian model organised? What is in-
tegral palliative care?Whatelseisintegral end-of-
life care?
6. Does the Belgian model have international
relevance?
7. Why did synergy between palliativecare and eutha-
nasia first emerge in Belgium?
8. What are the Belgian modelsfailings?
9. How might the Belgian model evolve?
This article responds to these questions and concerns.
For linguistic and stylistic reasons, it was felt that this
information and experience could best be conveyed by an
interview format, between Michael Ashby (MA), consult-
ing editor of the Journal of Bioethical Inquiry and a former
resident of Belgium, and the authors (JB, WD, AM).
Question One: What Is It Like for a Doctor
to Perform Euthanasia?
MA: Clinicians in jurisdictions where euthanasia
remains illegal have a wide range of reac-
tions, from envy to outrage. Many wonder
what it feels like to carry out euthanasia.
1
The Lewis and Black (2013) article exhaustively reviews all
extant data in permissivecountries on reported cases of granted
and refused assisted dying. Their aim isto investigate the degree of
compliance with legal requirements for the validity of requests of
assisted dying. They conclude that the evidence from the four
jurisdictions reviewed (the Netherlands, Belgium, Oregon and
Switzerland) suggests that the legal criteria that apply to an indi-
viduals request for assisted dying are well respected(Lewis and
Black 2013,895).Wel lis the key qualification. The very same
imperfections that Lewis and Black detect are enlarged and
misinterpreted by Pereira (2008) and Cohen-Almagor (2013)to
represent ominous slippery slope effects. Pereiras allegationswere
refuted or discredited (Downie, Chambaere, and Bernheim 2013).
508 Bioethical Inquiry (2014) 11:507529
The overall thrust of our response is that careful
euthanasia is simply the continuation of our medical
practice and that we find satisfaction in respecting
the explicit and well-considered wish of the patient,
which in Belgium is possible in full conformity with
the law. The law provides a reassuring procedural
framework that helps with observing the ethical re-
quirements to respect patient autonomy, to act benef-
icently, and to do no harm (Deliens and van der Wal
2003;DeKeyser2003). We also endeavour to show
a high level of respect for the person concerned, for
the importance of his or her life and significance of
his or her death, and for his or her choice of the
time and manner of dying. All three of us have
experienced that euthanasia is almost always follow-
ed by a serene bereavement of those close to the
patient, more notable than after conventional deaths.
This is in line with Dutch epidemiological data
(Swarte et al. 2003). The familys appreciation is
usually manifest, even when, as is often the case,
they have had prior reservations about euthanasia.
This experience is confirmed by a Dutch qualitative
study of the psychological and philosophical aspects
of euthanasia requests (Kimsma 2010). In short, the
professional rewards are similar to those experienced
when suffering is relieved and peace-in-death is
achieved with conventional palliative care. Another
satisfaction, and one we share with many Benelux
oncologists, is the (admittedly so far statistically
unproven) impression that patients who are assured
euthanasia if and when they judge the time has
come tend to live longer than their counterparts
dying conventionally. This need not be paradoxical
for several reasons. First, euthanasia anyway has an
only modest impact on lifespan: The estimated has-
tening of death in 55.5 percent of patients who die
by euthanasia is less than one week (Chambaere et
al. 2010a). Second, the perspective of a good death
seems to confer psychological advantages such as
reduced anxiety, more attention to spiritual accom-
plishment, and more concentration on quality of life,
all of which may promote a hanging onto life. Third,
treatment acceptance and compliance may be in-
creased. For example, some patients agree to life-
prolonging treatment only on condition that, if non-
tolerated adverse effects occur, they will be granted
euthanasia. One of author JBspatientstestifiedto
this in a documentary: She accepted whole-brain
irradiation for multiple cancer metastases only on
that condition and lived for almost another year
(Van de Velde 2012).
2
For author WD, euthanasia is above all a choice by a
competent and well-informed patient (and not a decision
by the physician), so that all the doctor has to do is decide
for himself or herself whether to participatethat is, to be
instrumentally and actively involved in the process of
euthanasia. For WD, euthanasia is emotionally no different
from other life-abbreviating decisions such as the discon-
tinuation of life-prolonging treatment. The process before
euthanasia is intensive (informative and deliberative), and
the performing of euthanasia is a final professional act.
Authors AM and JB share this view, but also experience
additional feelings. AM adheres to a Christian spiritualist
tradition. For him, to help a patient die is deeply moving
and has a life-intensifying and sacred dimension. JB, an
atheist, feels drained after euthanasia, but relieved, and
satisfied to have served autonomy and quality of life,
which in the framework of his progressive evolutionary
worldview (Bernheim 1999a; Heylighen and Bernheim
2000a,b) has a transcendental meaningfulness. For him,
euthanasia feels much like delivering a baby.
Question Two: What Is the Influence of a Medical
Practitioners Personal Beliefs and Views on His
or Her Willingness to Participate in Euthanasia?
MA: In the Rapid Responsee-section of the
British Medical Journal following your 2008 pa-
per, some commentators argued that apparently
pragmatic objections against euthanasia such as
slippery slope concerns are, in fact, smokescreens
that obscure fundamentally religious objections to
euthanasia. In your experience, do personal world-
view, values, and beliefs determine physicians
attitudes towards euthanasia and its practice?
2
The hypothesis that, like palliative care (Temel et al. 2010),
euthanasia may be associated with longer survival than conven-
tional death can easily be put to a first test byon condition that
immediate cause of death is registeredcomparing the respective
survival durations of advanced cancer patients from the Benelux
countries who participate in the multi-centric trials of the European
Organisation for Research and Treatment of Cancer (EORTC), up
to 10 percent of whom die with euthanasia (Van der Heide et al.
2007; Chambaere et al. 2010a).
Bioethical Inquiry (2014) 11:507529 509
This debate can be informed by empirical data. As in
the United Kingdom (Seale 2010) and other countries
(Bülow et al. 2012), in Belgium practicing religious palli-
ative care physicians are more critical of euthanasia than
others (Broeckaert et al. 2009). Perhaps surprisingly, in a
survey of British students there was a significant positive
correlation between religious belief and a positive attitude
towards euthanasia, a finding suggesting a cultural shift to
Hains and Hulbert-Williams (2013). Europe-wide compar-
ative research shows that personal worldview does have
some influence, but that the national cultural and legal
context counts for much more. In countries where eutha-
nasia is legal (permissivecountries), religious physicians
are much more favourable towards euthanasia than in
countries where it is not, and non-believers in the latter
countries tend to report higher levels of opposition
(Miccinesi et al. 2005; Cohen et al. 2008). It appears,
therefore, that the surrounding culture strongly influences
personal views, and perhaps euthanasia legislation changes
the culture. In permissive countries the main determinants
of physicianswillingness to perform euthanasia are not
physician- but patient-related: The clinical condition of the
patients and their wishes are foremost. The predominance
of patient interests over physician views is of itself an
important ethical stance (Hunt 1994).
The relationship between euthanasia and spiritual or
existential caregiving to the patient has been examined in
a study involving the last three months of life of patients
of a representative panel of Belgian general practitioners
(Van den Block et al. 2009). When euthanasia was per-
formed, there was clear evidence of exceptionally high
levels of spiritual or existential care. Religious or existen-
tial care is therefore not excluded at all from the care of
people who request euthanasia but, rather, connected to it.
Since in Belgium, which predominantly has a Catholic
tradition, this type of care is more often religious than
secular, we can infer that religious beliefs often do not, as
amatterofcourse,restrainmany patients from presenting
requests for euthanasia. A new development is what we
term solemn or ceremonialeuthanasia, carried out at a
predetermined time and place, among family loved ones
and sometimes also in the presence of a pastor who has
administered the last rites. For example, a recent docu-
mentary followed a cancer patient over the last six
months of her life in palliative care and ends with her
euthanasia in the supportive company of her family and
friends that takes place in her home and is carried out by
her general practitioner (GP) and palliative care nurse
(Lanssens 2011). Another documentary showed a 90-
year-old woman with refractory cancer symptoms pre-
paring to undergo euthanasia and her interactions prior to
doing so with Dr. Marc Desmet, a respected Belgian
palliative care physician who is also a Jesuit priest
(Gilsenan 2012). Applying Anamnestic Comparative
Self Assessment (ACSA), a method to let respondents
construct a personal scale of subjective well-being
(Bernheim 1999b; Theuns, Hofmans; and Bernheim
2014), as an instrument of spiritual care, Desmet asks
his patient what was the happiest time in her life.
Assisting my parents to die at home,she replies. Patient
and doctor communicate warmly. When Dr. Desmet is
asked by the interviewer Alan Gilsenan whether his
religious beliefs are not an obstacle to granting euthana-
sia, the physician points out that according to Christian
tradition ones conscience and compassion trump doc-
trine. He will entrust the patient to a colleague rather than
performing the euthanasia himself, but he will accompa-
ny his patients as far as he can go.Dr. Desmet had
previously debated author JB and written a book
opposing euthanasia (Desmet 2000). He now heads
the ethics group of the Flemish Association for
Palliative Care (Vanden Berghe et al. 2013).
Question Three: How Did the Belgian Model
of End-of-Life Care Come About?
MA: In view of the fact that worldwide, except in
Belgium and possibly the Netherlands (Leget 2013),
the official stance of mainstream palliative care
vis à vis euthanasia is rejection or at best studied
neutrality(Johnstone 2012; Canadian Hospice
Palliative Care Association 2010), why was this
otherwise in Belgium? Why did the Federation
Palliative Care Flanders depart from the tenet of
palliative care to neither prolong nor shorten life,
as stated in the WHO (2014) definition of palliative
care? Why were the first palliative care initiatives
taken by proponents of legal euthanasia, and what
motivated some pioneers of PC to adopt what
they labelled integral palliative care(PC
including legal euthanasia)?
In the United Kingdom, palliative care was intro-
duced with one of its stated aims being to prevent
euthanasia (Saunders 1976). This was not at all so in
Belgium: An initial major motive for the introduction of
510 Bioethical Inquiry (2014) 11:507529
palliative care was also to promote the acceptability of
euthanasia (Bernheim 1990,1996; Distelmans 2010).
The Belgian founders of palliative care, authors JB and
WD and others, deemed euthanasia unethical if it was
conducted for lack of adequate palliative care services
but supported euthanasia as a means for offering patients
real choices. Many, including author AM, rallied to this
position. A number of later PC workers tended to be
proponents of palliative care only, who opposed eutha-
nasia (e.g., Zuster Léontine 1995;Desmet2000;
Gamester and Van den Eynden 2009), and single-issue
euthanasia campaigners also emerged across the com-
munity. The latter were not opposed to palliative care
but only to futile palliative doggedness.They felt that
a prolonged dying with palliative carewas unacceptable
to those suffering individuals who preferred a rapid,
self-willed death (Van den Enden 1995).
Upon closer examination, the foundational ethical prin-
ciples invoked by the two opposing groups of activists
were and remain largely similar. These shared values are
best encapsulated by the notion of the centrality of the
patient and compassion, with due regard for the classic
medical ethics values of autonomy, beneficence, non-
maleficence, and justice (Hurst and Mauron 2006;
Woo ds 2007). For euthanasia there is, however, an empha-
sis on patient autonomy, and for palliative care the empha-
sis is on exemplary care for the patient. The conventional
palliative care movement opposes medical futility and so
does the euthanasia movement (Bernheim, Vansweevelt,
and Annemans 2014), which in addition opposes palliative
futility, the continuance of palliative care against the wishes
of the patient (see Table 1).
The common ground between those who sought better
palliative care and those who were campaigning for the
legalisation of euthanasia, together with the influence of
the core group of those who supported both, gradually
created a climate of public and professional opinion that
was open to the possibility of euthanasia legislation.
The federal political system in Belgium is complex. It
has to accommodate the two major language groups
(Dutch-Flanders and French-Wallonie), a bilingual cap-
ital (Brussels), and a small German-speaking
Table 1 Foundations of palliative care and of legal euthanasia: Many similarities and a few differences
Palliative Care Legal Euthanasia
Fundamental paradigm
Attributes of caregivers
Centrality of the patient
Competence and compassion
a
Centrality of the patient
Competence and compassion
a
Clinical objectives 1. Relief of suffering
2. Prevention of medical futility
1Reliefofsuffering
2. Prevention of palliative futility
Perception of most prominent
ethical values
1. Beneficence
2. Patient autonomy
b
1. Patient autonomy
2. Beneficence
b
Life stance of activists Often religious Often agnostic or atheistic
Potential for abuse
c
1Palliative futility
2. Under the pretence of observing the PC tenet
of not prolonging life (WHO), denying
life-prolonging treatment to a patient who
is doing well in PC.
1. Slippery slope phenomena
2. Substitute for palliative care
3. Erosion of public confidence in the
health care system
Public support Well-nigh universal
Distrust by some professionals and politicians
d
Large and growing majority in the
advanced countries.
Distrust by some professionals and
politicians
e
a
See, e.g., de Zulueta 2013
b
In this order, though the common virtue overarching both beneficence and respect for autonomy is compassion, i.e. the capacity and
propensity to put oneself in another persons place)
c
it should be emphasised here that the reality of medical futility (Bernheim, Vansweevelt, and Annemans 2014) probably dwarfs any abuses
of palliative care, that, as detailed below, abuses of euthanasia did not materialise, and that any imperfections in the application of the
euthanasia law only minimally detract from the major improvements in the carefulness of end-of-life practices relative to the situation before
the law (Deliens et al 2000; Chambaere et al. 2011b)
d
Some still discern many opponents of euthanasia in the PC movement and suspect them to only pay lip service to the Flemish PCs official
doctrine of comprehensive PC
e
The advocacy of further liberalisation of euthanasia elicits new oppositions
Bioethical Inquiry (2014) 11:507529 511
community in the east of the country. In effect, Belgium
is multilingual and multicultural, arguably prefiguring
e.g. the European Union and things to come elsewhere
in a globalising world.. Political parties and institutions
of all persuasions are divided between the two largest
language groups. The country is used to coalition gov-
ernment, compromise, and so-called waffle-ironpol-
itics (the habit of when one constituency has scored,
compensating the other) (Perrez and Reuchamps 2012).
The composition of the Belgian parliament gave rise to a
unique opportunity in 2002 when a governing left-of-
centre coalition of liberals, social democrats and greens
left the Christian democrats out of the governing coali-
tion for the first time in five decades (Griffiths, Weyers
and Adams 2008). In lengthy negotiations, the confes-
sionals(essentially the Christian democrats) secured
theirdevelopment of palliative care and the secular
free-thinkers”“theirlegalisation of euthanasia, while
both constituencies sponsored the Patient Rights Bill.
The joint three laws on euthanasia, palliative care and
patient rights were in fact the waffle-iron-like political
implementation of a lengthy deliberative process. How-
ever, the left-of-centre political coalition valued palliative
care no less than the religiously inspired minority. Sub-
sequently, during the five years following the twin laws
on euthanasia and palliative care, yearly federal expendi-
ture for palliative care increased from 78 million to 137
million (Federal Evaluation Cell on Palliative Care 2008;
see Fig. 1). The palliative care budget has continued to
rise annually by 10 percent, and Belgian palliative care,
according to European Association for Palliative Care
(EAPC) indicators (Chambaere et al. 2011a), is on a par
with the reference United Kingdom (Bernheim et al.
2014).
At the micro-level of organisations and individual
caregivers, motives were both multiple and complex.
Many proponents of legal euthanasia valued palliative
care per se, but also considered the unavailability of
palliative care to be an unwanted indication for euthana-
sia and a legitimate objection against its legalisation. It is
with this double motivation that they became pioneers of
palliative care (Bernheim 1990,1996; Distelmans 2010).
The motivation of diverse palliative caregivers, in-
cluding religious ones, to embrace euthanasia was also
dual. While they adhered to the principle of the primacy
of the patients values, they also entertained the practical
hope that by embedding euthanasia in palliative care
they would set standards for quality of care and contrib-
ute to the prevention of slippery slope effects (Bernheim
et al. 2008; Federatie Palliatieve Zorg Vlaanderen 2013;
Fig. 1 Federal governmental expenditure for palliative care ser-
vices in Belgium (in million Euros [] per year) since the
legalisation of euthanasia in 2002 (see the Federal Evaluation Cell
on Palliative Care 2008)
Table 2 Activistsmotivations for synergy between legal euthanasia and development of palliative care
Motivations
Of Activists for LEGAL EUTHANASIA
to Promote PALLIATIVE CARE
Of Activists for PALLIATIVE CARE
to Promote LEGAL EUTHANASIA
ETHICAL Intrinsic value of PC
Prevention of euthanasia for lack
of PC services
Centrality of patient autonomy
PRAGMATIC
MACRO LEVEL
(Political decision-making)
Political reciprocity Political reciprocity
MICRO LEVEL
(Individual decision-making)
Intrinsic value of PC
Prevention of euthanasia for lack
of PC services
Centrality of patient autonomy
Regulating clandestine practices
Ambition of exemplary role for
eu-euthanasia
512 Bioethical Inquiry (2014) 11:507529
Vanden Berghe et al. 2013). The amendment desired by
the Palliative Care Federation of Flanders (FPCFl) to
make a palliative filterlegally required (palliative care
physicians as gatekeepers for euthanasia) was not ac-
cepted by the political majority because too many palli-
ative care specialists were on record as being opposed to
euthanasia and it was considered that such a hurdle
would be too taxing and stressful for the patient. The
palliative care federations have made their peace with
not being made the gatekeepers for euthanasia, all the
more because they have no wish to take the place of
other clinicians but, rather, explicitly work to empower
them for end-of-life care (Vanden Berghe et al. 2013).
Thus, what palliative care physicians hoped for by tak-
ing euthanasia on board was to function as an example:
They saw in their palliative care doctrine of totalcare
a standard of care also for euthanasia. If euthanasia was
to be legal, it had to be with the best possible care, eu-
euthanasia,as it were. Just asetymologically—“eu-
thanasiameans good death,so eu-euthanasiade-
notes giving the good death well(see Table 2).
In short, in Belgium euthanasia and palliative care
have developed in a connected, interdependent, and
reciprocal way: The motives of advocates to promote
both palliative care and legal euthanasia were intrinsic
(intellectual) as well as extrinsic (pragmatic). This is
largely because palliative care and euthanasia are based
on closely related ethics of care (Hurst and Mauron
2006; Woods 2007;seeTable2). Moreover, we submit
that the overarching motivation of all caregivers is com-
passion, the capacity and propensity to put oneself in
another persons place, and compassion, so understood,
also includes respect for autonomy.
Question Four: Why Is There 20 Times More
Euthanasia Than Physician-Assisted Suicide?
MA: About 2 percent of Belgians (and Dutch) die
with euthanasia, where the physician administers
the lethal drugs, and less than 0.1 percent by
physician-assisted suicide, where the patient
ingests the drug provided by the physician
(Bilsen et al. 2009). The latter modest proportion
is similar to Oregons, where only physician-
assisted suicide is legal (Oregon Public Health
Division 2013). Why is physician-assisted suicide
only marginal in the Benelux countries?
We dont precisely know because the question has
not yet been systematically studied. Many physicians
state that they ideally prefer to offer the means for
suicide rather than to carry out euthanasia, because the
autonomy of the patient is thus more in evidence. How-
ever, though 34 percent of Dutch general practitioners
prefer assisted suicide, only 22 percent offer the two
options to the patients requesting assisted dying
(Kouwenhoven et al. 2014). There is anecdotal evidence
that, when given the choice, many more patients opt for
euthanasia than for assisted suicide. This may be be-
cause they have more trust in the physician doing it right
than in themselves. Physicians may share this feeling,
for example, worrying about malabsorption of the bar-
biturate potion (Groenewoud et al. 2000). However,
other psychological factors seem to play a part. Perhaps
thepreferenceofsomepatientstobepassiveis
underestimated (Bernheim 1996; Pardon et al. 2009;
Roeland et al. 2014). One of author JBs cases even
more suggests complex motives. After a long process of
persuading the caregiver team to help him die, this
advanced pancreatic cancer patient on total parenteral
nutrition, but in no physical pain, had been entrusted
with, when he decided the time had come, switching a
three-way valve himself from his regular perfusion to
one with a rapid-flow lethal dose of barbiturates. He
eventually declined to do so. Not that he had changed
his mind: He was adamant that the doctor had to switch
the va1lve. Actually, this particular, strong-willed intel-
lectuals apparent preference for passivitymay have
been ambiguous: It can on the contrary have been a
manifestation of active control. Because his suffering
had been only mental, not physical, his caregivers had
been reluctant to grant him euthanasia. Overcoming
their misgivings had given him considerable satisfac-
tion, which was documented in the evolution of his
ratings of subjective well-being by Anamnestic Com-
parative Self Assessment (Bernheim 1999b). This case
also raises the question to what extent physicians can
accept to be instrumentalised by patients.
Question Five: How Is the Belgian Model
Organised? What Is Integral Palliative Care?
What Else Is Integral End-of-Life Care?
MA: How has Belgium organised end-of-life care
and how does the Belgian model work? What is
the difference between conventional and so-called
Bioethical Inquiry (2014) 11:507529 513
Belgian integral palliative care?Andwhat
is the place of integral palliative carein
integral end-of-life care?
Integral palliative care as conventional palliative care
that has embraced and embedded euthansaia (Federatie
Palliatieve Zorg Vlaanderen 2003; Vanden Berghe et al.
2013)isillustratedinFig.2. The Venn diagram shows
the qualitative relationships between types of care: Inte-
gral palliative care is conventional palliative care (as
practised in countries without legal euthanasia) offering
also the option of euthanasia. A reasonable estimate
based on the 2007 study of Belgian patients during the
last three months of their lives is that about 30 percent of
all deaths (41 percent of all non-sudden deaths) are
preceded by organised multidisciplinary palliative care,
and that about 2 percent die with euthanasia, half of
them after a palliative care pathway (Van den Block
et al. 2009).
3
Significant numbers of caregivers are
conscientious objectors to euthanasia, which is
respected by the law and in practice. Patients by law
have a right to palliative care and to request euthanasia,
but individual doctors freedom of conscience are always
entitled to exercise their right to conscientious objection,
and therefore not to participate in any form of assistance
to die. The physicians refusing to carry out euthanasia
must in due time inform their patient of this, giving also
the reasons for their refusal (Article14 of the Euthanasia
Law). If the refusal is on medical grounds, this must be
documented in the patients file. They have a legal duty
to refrain from futile medical treatment, but not to en-
gage in euthanasia (Bernheim, Vansweevelt, and
Annemans 2014).
As the only palliative care organisation in the
world to have done so, the Palliative Care Federa-
tion of Flanders (FPCFl) is an innovating outlier, a
heretic according to some (Jaspers, Muller-Busch,
and Nuack 2009; Materstvedt 2013).
.
The FPCFl
prefers the term euthanasia accompanimentover
integral palliative care(Vanden Berghe et al.
2013). It does not have and does not claim a mo-
nopoly on the provision of euthanasia. This is be-
cause there are patients whose disease is fatal and
whose suffering is irreversible, who have a wish for
euthanasia but do not need or want multidisciplinary
conventional palliative care. Many such patients
have advanced neurodegenerative diseases, and their
palliative care is usually undertaken by neurological
services in Belgium. Therefore, the national model
of integral end-of-life care is one comprising pallia-
tive care (including optional euthanasia) and assisted
dying without involvement of multidisciplinary pal-
liative care.
In Flanders, physicians, many of whom are unfamil-
iar with the regulations and the clinical practice of
euthanasia, can call on their colleagues from the Life-
End Information Forum (LEIF) for both the legally
required second-opinion consultation by an independent
physician and for technical assistance in the practice of
euthanasia. In both the French-speaking Belgium Forum
EOL (End of Life) and the Netherlands SCEN (Steun en
Consultatie voor Euthanasie Nederland) doctors are
available for this service (Van Wesemael et al. 2009a,
2009b,2012). The consultation by an independent phy-
sician that is legally required is remunerated in the
Netherlands, but not yet in Belgium. More than 400
Flemish physicians have undertaken the LEIF training
since 2003, the palliative care component of which is
entrusted to the Palliative Care Federation of Flanders.
LEIF physicians are known to explicitly endorse eutha-
nasia as one more option at the end of life. About 1,000
physicians have followed palliative care training since
1998, partly theoretical, but mainly by means of case
conferences and clinical placement experience. The ob-
jective of training in palliative care is emancipatory,
3
This study result reflects the situation in 2007; a recent estimate
is 50 percent of all deaths (Vanden Berghe et al. 2013). Also
Catalonia has a high penetrance of palliative care (Gómez-Batiste
et al. 2012), but no similar data are available in other countries.
Even so, in Belgium referral to palliative care is probably still
suboptimal (Beernaert et al. 2013), and futile disease-directed
treatment has not disappeared.
Fig. 2 The Belgian model of end-of-life care
514 Bioethical Inquiry (2014) 11:507529
aiming at empowerment: In the interest of continuity
of care to patients the FPCFl tries to train non-specialist
caregivers (while offering them and their patients assis-
tance in the formof specialised paramedical homecare),
so that only exceptionally would specialist palliative
care services need to take over care. Such a basic or
first-linemodel has recently been advocated in the
United States (Quill and Abernethy 2013). Contrary to
LEIF physicians, individual palliative care physicians
are not required to accept and practice euthanasia them-
selves, but at the aggregate level of organisations, just as
LEIF, the FPCFl aims to help the patient with all op-
tions. The Belgian (or at least Flemish) model of com-
prehensive end-of-life care thus offers euthanasia both
within and outside organised multidisciplinary palliative
care (see Fig. 2).
Integral palliative care is thus conventional palliative
care (as practised in countries without legal euthanasia)
with an integrated possible choice of the option of eu-
thanasia. Among non-palliative care specialists, it is
mainly oncologists, followed by anaesthetists and neu-
rologists, who perform euthanasia (Fig. 3). However,
about half of euthanasia episodes take place in the pa-
tients home, usually by GPs and, in the majority of cases,
after the intervention of a palliative care team (Van den
Block et al. 2009; Chambaere et al. 2010a). Many palli-
ative care physicians are also LEIF physicians. A major-
ity of palliative care physicians adhere to comprehensive
palliative care (i.e., including euthanasia), the remainder
only conventional palliative care (Fig. 3).
For the Palliative Care Federation of Flanders
(FPCFl), euthanasia is the ultimate modality of compre-
hensive integrated palliative care practice and it opposes
an either/or mutually excluding duality (Federatie
Palliatieve Zorg Vlaanderen 2003,2007; Vanden
Berghe et al. 2013
4
). For both the FPCFl and LEIF,
the patient has the right to know his or her individual
physicians attitude towards euthanasia. LEIF physi-
cians are known to be open to euthanasia, but for
palliative physicians, it may not be clear. Therefore,
physicians with conscientious objections are required
to inform their patients in due time, so as not to have
to let them down at the end of a palliative care pathway
(Federatie Palliatieve Zorg Vlaanderen 2003; Bernheim
et al. 2008; Vanden Berghe et al. 2013). LEIF physicians
posit that for patients who have no need for multidisci-
plinary palliative care (e.g., most of those with neurode-
generative diseases in Belgium because their care is
organised otherwise) or for patients who decline pallia-
tive care, an organisation is needed to offer competent
euthanasia without the intervention of palliative care,
and they are available for this. A recent 2012 addition to
end-of-life services is the ULteam (ULstands for
Uitklaring Levenseindevragen or the clarification of
end-of-life issues; see http://www.ulteam.be/), a
collective of professionals who offer consultation and
deliberation to patients who cannot find a hearing for
their end-of-life concerns or whose wishes were turned
down. Many of these are psychiatric patients (see the
ULteam website). Notorious controversial euthanasia
cases granted after many months of scrutiny and delib-
eration by the ULteam on grounds of irreversible mental
suffering were those of congenitally deaf twin brothers
who were also going blind (Siebold 2013)andaman
named Nathan Verhelst following several failed sex-
reassignment surgeries (Gordts 2013). However, a eu-
thanasia request by a sexual offender who had been
detained for 30 years for rape and murder was put on
hold because palliativetreatment had not been provided:
The patient had asked for expert palliative psychiatric
treatment that was available only in the Netherlands, and
the Belgian penitentiary system had failed to provide it
(Leestmans 2013). The patient has brought his case
before a court (Vanhecke 2013). Assessments of such
Fig. 3 Overlapping affiliations of Belgian physicians involved in
end-of-life care
4
The Vanden Berghe et al. (2013) paper, otherwise very informa-
tive, is inaccurate by ignoring quantitative data when it states that
Flemish palliative care physicians practise euthanasia accompa-
niment,but only very occasionallycarry out euthanasia. The
latter reflects author M. Desmets personal position, but is
contradicted by epidemiological data (Van den Block et al. 2009)
and rightly picked up as inconsistent by Randall (2013).
Bioethical Inquiry (2014) 11:507529 515
cases should not be formed until reliable evidence about
their conditions is available.
Overall, about half of euthanasia requests are effec-
tively carried out (Van Wesemael et al. 2011), slightly
more than in the Netherlands (Jansen-van der Weide
et al. 2005). In Belgium only 5 percent were refused,
because the legal conditions were not met or because the
doctor was a conscientious objecter, and 10 percent of
requests were withdrawn. In 23 percent of cases, the
patient had died before euthanasia could be performed,
suggesting belated requests, but probably also procedur-
al fastidiousness or procrastination on behalf of some
physicians (Van Wesemael et al. 2011). Only anecdotal
information is available on the extent of refusal because
of conscientious objection of caregivers. In the Nether-
lands it was found that patients who were denied eutha-
nasia did not forsake their wish to die, but often subse-
quently remained silent about it (Pasman et al. 2013).
However, an unknown but non-negligible number of
patients whose request was turned down went on to
violent suicide. De Einder, a foundation aiming to pre-
vent this by providing guidance for suicide was created
(see http://deeinder.nl/english/), and the Dutch Society
for Voluntary Euthanasia recently created mobile
professional teams for euthanasia in patientshomes
and an End-of-Life Clinic(see http://www.nvve.nl/).
Belgium is also the first country where, under strict
conditions, patients with irreversible catastrophic neu-
rological conditions whose request of euthanasia has
been granted can can give added meaning to their life
and death by directing to donate their (intact) organs for
multiple transplantations, according to Eurotransplant
guidelines (Eurotransplant 2008;Ysebaertetal.2009,
Van Raemdonck et al. 2011; Bruno et al. 2011).
Unlike in the Netherlands, citizenship is not a legal
requirement for euthanasia in Belgium, but euthanasia is
conditional on a profound patientdoctor relationship.
There is so far no evidence of euthanasia tourism.
Question Six: Does the Belgian Model Have
International Relevance?
MA: How relevant and potentially reproducible is
the Belgian experience internationally? Is the Bel-
gian model a heresy, an experiment, or a prototype
of things to come? What societal philosophical
principles underlie it?
The international reactions to the Belgian model are
diverse and often emotional, ranging from revulsion to
acclaim. We submit that the Belgian experience is mean-
ingful both on the level of societal philosophy and
pragmatically. The societal philosophical message is
that governments and dominant religions may at best
regulate but should not repress implementations of ini-
tiatives that are consistent with the Universal Declara-
tion of Human Rights (UDHR) (1948), such as self-
determination in procreation and choosing to have as-
sistance to die. The UDHR is more than the intellectual
brainchild of the Enlightenment. To the extent that it
encapsulates mastery of onesdestiny,conformingtothe
UDHR can be shown to, at the aggregate level of
nations, be a precondition for peopleshappiness
(Heylighen and Bernheim 2000a). (Cultural relativists
might claim unassailable rights for any minority or
group within society. We disagree because some minor-
ities or even majorities can be [temporarily] misguided
in fundamental ways.)
The pragmatic message is that in other countries the
proponents oflegal euthanasia might do well to promote
palliative care and that the advocates of palliative care
may have no valid case to oppose the legalisation of
euthanasia, if only because the latter was a major boost
for palliative care in the Netherlands and Belgium
(Bernheim et al. 2014). It should be noted that our
neighbour Luxembourg was the next country after Bel-
gium to concomitantly enact twin laws generalising PC
and legalising euthanasia in March 2009, and in June
2014 Québec adopted similar provisions (Assemblée
Nationale du Québec 2014). The knowledge of the
Benelux provisions for the end of life will probably
contribute to more patient requests for assisted dying
in other countries. Palliative care and other physicians
will most likely find it increasingly difficult to let their
patients down by offering only palliative sedation
(Sterckx, Raus, and Mortier 2013) or sending them on
to travel to Switzerland or Belgium. The recommenda-
tion of the Federation Palliative Care Flanders to its
foreign colleagues is: Get involved(Vanden Berghe
et al. 2013).
This said, the translationof scientific evi-
dence into health policy is a complex process that
is subject to inertia and cultural impediments
(Liverani, Hawkins, and Parkhurst 2013). The
eventual acceptance of medical ethical develop-
ments after prolonged professional and political
opposition is not without historical precedents,
516 Bioethical Inquiry (2014) 11:507529
for example, contraception, assisted procreation,
and abortion. Just as the European Association
for Palliative Care (EAPC) so far rejects legal
euthanasia (Materstvedt et al. 2012), the Interna-
tional Federation of Gynecology and Obstetrics
(FIGO) has opposed abortion for many decades.
However, in 1998 it took the position that all
women must have access to professionally per-
formed abortion. FIGO now states neither society,
nor members of the health care team responsible
for counseling women, have the right to impose
their religious or cultural convictions regarding
abortion on those whose attitudes are different
(FIGO 2013, 104) and concludes that the Com-
mittee recommend[s] that after appropriate
counselling, a woman [has] the right to have ac-
cess to medical or surgical induced abortion, and
that the health care service [has] an obligation to
provide such services as safely as possible(FIGO
2013, 105; Erdman et al. 2013). But also here, in
addition to philosophical motives, pragmatic motives
have been operating: Another important objective of
FIGO was to lift abortion out of clandestine illegal
activity, to let it be performed in medically correct
conditions and so ensure that abortion is safe and
accessible. Similarly, illegal clandestine end-of-life
practices, performed without peer control, as docu-
mented in Belgium before the euthanasia law and
elsewhere (Kuhse et al. 1997; Deliens et al. 2000;
Mitchell and Owens 2003) can be considered more
worrying than even imperfectly regulated legal eutha-
nasia. Evidently, bioethical evolutions come about
more readily when ethical and pragmatic motives
coincide and operate synergistically.
It seems likely that in the future more countries will
legalise and regulate euthanasia and that, over time,
international organisations such as the EAPC will en-
dorse euthanasia.
Question Seven: Why Did Synergy
Between Palliative Care and Euthanasia First
Emerge in Belgium?
MA: Why have the development of palliative care
and the drive for legal euthanasia been synergistic
only in Belgium? How did Belgian exceptional-
ismcome to be?
That Belgium is one of the countries with the most
developed palliative care systems (Centeno et al. 2007;
Chambaere et al. 2011a;Bernheimetal.2014) and the
third country to have legally regulated euthanasia
5
is not
paradoxical, as we have tried to make clear above, but it
may also not be accidental. The explanations for this as
yet unique
6
synergy are undoubtedly complex. We pro-
pose some hypotheses.
A first element that may have played a part is Bel-
gianshigh level of confidence in their health care
system, amongst the highest in Europe (Halman 1999).
Indeed, legal euthanasia may be deemed frightening and
ominous if the publics confidence in their health care
systems is poor. As proven, this is not the case in
Belgium, where in 2008 this confidence rate rose to
91.2 percent, just below Iceland (the highest in Europe),
followed by Luxembourg with 87.1 percent. This sug-
gests that the 2002 law on euthanasia has not eroded
confidence in the health care system, as is sometimes
surmised abroad.
As a second factor, the group of caregivers who were
active in both euthanasia and palliative care constituted
abridgebetweenthetwomovements(Bernheim
1990,1996; Distelmans 2010). We know of no
other country where the initiators of palliative care
also promoted legal euthanasia.
This leads to another question: Why was it in Bel-
gium that health care workers first took this position?
We suspect this is a result of a more general character-
istic of this country: ethical modernity, in conformity
with contemporary philosophical views that are widely
respected in Belgium and whose essence is propagated
in schools, social organisations, the media, and politics
5
The Benelux countries were preceded by Australias Northern
Territ orysRights of the Terminally Ill Act in 1998, which however
was subsequently overturned by the Commonwealth of Australias
Euthanasia Laws Act.
6
Excepting Luxembourg and Québec (Assemblée Nationale Qué-
bec 2014). It should be noted that the Dutch model is rather
different: The momentum for euthanasia grew much earlier and
wholly independently from PC. Medical professional organisa-
tions and the judiciary played a much more important role than
in Belgium. In the early 1990s they together developed a non-
prosecution policy of regulated tolerance: Euthanasia was not
prosecuted if precise rules of prudent practice laid down by the
Royal Dutch Medical Association were observed. These are the
conditions that in 2002 became the law. PC developed later in the
Netherlands than in Belgium. It has since strongly expanded,
reaching, like Belgium, a level roughly on a par with the United
Kingdom, the cradle of PC and its benchmark country (Chambaere
et al. 2011a;Bernheimetal.2014).
Bioethical Inquiry (2014) 11:507529 517
(Engelhardt 1991; Rawls 1992; Hösle 1997;Heymans
2006; Nussbaum 2008; Vermeersch and Braeckman
2008). This modernity manifests itself both at the
macro-level of society and at the micro-level of individ-
ual behaviour.
A manifestation of active institutional pluralism was
that the Federal Advisory Committee for Bio-ethics
issued a pivotal report on euthanasia in 1997, with four
clear options (prohibition, a priori regulation, a
posteriori regulation, and full liberalisation). This was
a sober reflection of logical alternatives and of the real
diversity of respectable views. It became the basis for
decisions by the national assembly, whose majority
chose the third option (Raadgevend Comité voor Bio-
ethiek 1997). Such openness was only possible because
the advisory board had a pluralistic composition. Effec-
tive pluralism was undoubtedly promoted by the fact
that, in Belgium, secular humanism (free-thinking),
like organised religions, is officially recognised as a
belief system and represented in advisory bodies.
However, this pluralism is more than institutional:
It has also been internalised at an individual level by
much of the population. Irrespective of personal
worldview, a great many citizens embrace pluralism
and adhere to the ethical modernity of secular hu-
manism. (Secular humanism is understood here to be
as that suggested by writers such as H.T. Engelhardt,
a physician and a philosopher: an ethics of separa-
tion between the personal and the public domain, a
core ethics originating in the Enlightenment, positing
a common language between moral foreigners
[Engelhardt 1991].)
Other indications of this abound. Many Catholic
intellectuals (e.g., Lenaers 2001) and health care
workers (as well as much of the general public) hold
individual autonomy and responsibility in the highest
esteem. Catholic physicians (most of whom prefer to
call themselves Christianwhen given the choice)
abbreviate lives no less than their free-thinking col-
leagues when it is upon patientsrequest, and they
tend to do less (compassionate) life abbreviation with-
out explicit request (Deliens et al. 2000; Bernheim
2002). It is probable that this Catholic modernity is
connected with the enthusiasm for the concept of
personalismas proposed by Catholic thinkers such
as Mounier (1949), Ladrière (2004), Janssens (1957),
Dondeyne (1974), and Schillebeeckx (1982) at the
Dutch- and French-language Catholic universities of
Leuven/Louvain, who together have trained about
half of Belgian physicians. As a result of such pro-
gressive attitudes, respect by free-thinkersfor mod-
ern religious thought has increased (e.g., Bernheim
2002). The philosopher Leo Apostelsatheistic reli-
giositywas seminal in this respect (Apostel 1998).
In May 2013, Christian de Duve, an emeritus profes-
sor of the Université Catholique de Louvain and
Nobel laureate of medicine, ailing but not moribund,
chose rationaldeath by euthanasia at the age of 95
after giving a valedictory interview announcing and
justifying his decision.
The Belgian model of end-of-life care is only one of
the practical manifestations of ethical modernism.
Belgium also has for many years had gay marriage, a
liberal legislation on embryo research, and an opt-out
law on organ donation that yields amongst the highest
per capita number of organ donations per year in the
world (Farrell, Price, and Quigley 2011; Gómez et al.
2012).
Question Eight: What Are the Belgian Models
Remaining Problems and Failings?
MA: This interview appears to draw a rather rosy
picture of the Belgian model so far, Are there no
problems with palliative care and euthanasia in
Belgium? Can you identify shortcomings and
points of dissent?
Undoubtedly there are still shortcomings, bottle-
necks, controversies, open research questions, and solu-
tions that are worth considering.
Semantic
A main condition for euthanasia in the Benelux
laws is unbearablesuffering. This is actually a
slightly unfortunate misnomer. Unbearableis an
objective notion, while it is the subjective assess-
ment by the patient that matters most. The objective
measurement of suffering is still in its infancy
(Deschepper et al. 2013) and no one is in a position
to call someone elses suffering bearable or not
(Dees et al. 2010). The public, most physicians,
and the Control and Evaluation Commission of
Euthanasia interpret this term in the euthanasia
legislation to mean suffering that is no longer tol-
erated by the patient.
518 Bioethical Inquiry (2014) 11:507529
Restricting Legal Euthanasia to Fatal Diseases
Loss of dignity and independence, affliction with a
number of chronic incurable ailments (chronic multi-
organ failure), together with a sense of having lived
ones life can constitute a state of existence that is not
acceptable to the person concerned, although it may not
be objectivelyunbearable. Dutch qualitative research
has shown that some people who considered their life
completedand requested euthanasia did not themselves
call their suffering unbearable(e.g., they could still
read a book or watch television), yet did not want to go
on living in their condition (Pasman et al. 2009). Such
situations can be excruciating, irreversible, and hope-
less. Euthanasia is then not legal because the diseases
are not lethal. It is also problematic that some consider
such requests to be the result of a mental disorder that
makes the applicant incompetent or confuse profound
sadness with clinical depression (Szmukler 2014).
Funding and Fees
The funding of PC is still not always adequate, certainly
for hospitals, nursing homes, and day care centres, and,
unlike in the Netherlands, the legally required consult-
ing doctors, including LEIF physicians, still receive no
compensation. An advantage of the integration of basic
palliative home care in Belgiumsnationalhealthinsur-
ance, characterised by fee for serviceand free ac-
cess,is that it is demand-driven. Basic palliative home
care thus accounts for most of the yearly 10 percent
increase in overall funding of PC (Bernheim et al. 2014).
However, specialised PC in hospitals and in home care
must rely on lump grants that have not kept pace with
the increasing workload due to increased demand, in-
cluding more frequent work-intensive requests of eutha-
nasia (Vanden Berghe et al. 2013).
Evading Requests and Denying Euthanasia
LEIF physicians still encounter cases where a valid and
repeated request is met with evasion or procrastination
and/or ends in unrequested continuous deep sedation.
Also some health care institutions forbid their staff to
practise euthanasia. This may result in painful consecu-
tive referrals. Opposition and/or intuitive aversion to
euthanasia may hide behind procedural fastidiousness,
and deep sedation can be a means to smother existential
distress and stifle patient wishes. Deep sedation in such
circumstances has been called the pharmaceutical
straitjacket(Camisole de force médicamenteuse). The
Federatie Palliatieve Zorg Vlaanderen (2012) has issued
guidelines for ethical palliative sedation.
Cases of Slippery Slopeand Denial of Patient Rights
A preliminary note on slipperyslope is in order. This
usually denotes an irreversible bad evolution that was
not originally intended (van der Burg 1991). The key
terms are badand irreversible.Now, both an evolv-
ing world and favourable experiences with an innova-
tion may actually make an originally unintended devel-
opment good instead of bad. (An example: When in the
19th century the census suffrage was liberalised, the
slippery slopeled to women voting.) As for irrevers-
ibility,bad experiences can lead to the reversal of
enfranchisements. (A recent example: the tendency to
reverse the deregulation of banks). When considering
the alleged slippery slopeeffects of legal euthanasia,
these caveats must be kept in mind. Although amongst
the several thousands of cases reported to the Control
and Evaluation Commission of Euthanasia about 20
percent gave rise to further inquiries, none was so far
referred to the public prosecutor. The Commission ap-
pears to be lenient on minor deviations from the law
(such as absence of a written patient request or of
written consultant's findings) that are clarified after re-
ceiving satisfactory responses to its inquiries. Also be-
cause really problematic cases may not be reported,
toothlesscontrol has been denounced by critics of
the Belgian model (Pereira 2011;Cohen-Almagor
2013). However, it must be remembered that before
the law there was no public control at all ofthe 4 percent
of clandestine physician-assisted deaths, most of which,
at that time, were without a patient request (Deliens etal.
2000; Chambaere et al. 2011b).
Most important, probably: The novel openness of
communication on end-of-life issues and the transpar-
ency of the procedure make plausible that the control by
peers and the public is very effective. The media have
reported a few cases of complaints by relatives, but they
related to non-involvement of the family in the decision-
making and to allegedly abusive deep continuous seda-
tion without consent (Sterckx, Raus, and Mortier 2013).
No case of euthanasia due to lack of access to palliative
care is on record. If this happened, there would likely be
a public outcry. In contrast, it can be suspected that a
fraction of the deep continuous sedations, which
Bioethical Inquiry (2014) 11:507529 519
spectacularly increased from 8.2 percent of deaths in
1998 to 14.5 percent in 2007 (Chambaere et al. 2011b),
is problematic. This practice, which is often the physi-
ciansrather than the patientspreference, belongs to the
physicians' sovereign judgment, and is wholly unregu-
lated. It is very prevalent in nursing homes where the
provision of professional palliative care is too often
lacking. It may in some cases reflect failure of effective
palliative care and/or refusal of euthanasia. The Vrije
Universiteit Brussels' (VUB) University Hospital, hop-
ing to set an example, has introduced a mandatory
reporting procedure for cases of terminal sedation.
The Adherence to Legally Required Procedure
Appears Sometimes Incomplete
In 2007, in 20 percent of cases that were technically
classified as euthanasia by the investigators of death
certificate studies (though not necessarily perceived as
euthanasia by the surveyed practitioner and not eutha-
nasia for the law
7
)nocolleaguewasreportedtohave
been consulted, as legally required for euthanasia
(Chambaere et al. 2010a). Also because too many cases
were not reported to the Control and Evaluation Com-
mission, It was concluded that there is more need for
more continued education of Belgian physicians (Smets
et al. 2012). It has been alleged that some hospitals there
might have been an exceptional case of euthanasia that
was carried out in a manner that was compliant with
legal requirements, but performed in an impersonal and
routine way (e.g., personal communication to author JB
by Bert Vanderhaeghen, a university hospital chaplain).
This would be contrary to the view of euthanasia as the
ultimate culmination of a deep caregiverpatient rela-
tionship (colloque singulier). If perfunctory
euthanasiabecame more than highly exceptional and
if any occurs and the public developed an impression of
euthanasia being undertaken in a casual or uncaring
way, this would constitute a real practical slippery slope
phenomenon. It would likely erode confidence in med-
icine and discredit euthanasia. Such cases are have not
given rise to complaints or prosecutions, and probably
so rare that they have not affected public satisfaction
with the Belgian model.
8
At any rate, there is no evi-
dence of any shift to casual or uncaring euthanasia.
Technical Performance
The performance of euthanasia requires training, includ-
ing in considering it as part of integralpalliative care,
and thus an ability to deal with all aspects of end-of-life
care, including how to bring about death without failure
and side effects. At the present time only LEIF explicitly
provide this training.
Integral End-of-Life Care in the Medical School
Curriculum
Teaching of both palliative care and physician-assisted
death as part of the core curriculum of medical students
has so far been provided only at the Dutch-language Free
University of Brussels (VUB), but the other medical
schools, which already teach conventional palliative care,
are in the process of catching up. At the post-graduate
level, there is an interuniversity course in collaboration
with the FPCFl.
Reporting
In the Netherlands, the estimated percentage of eutha-
nasia cases that are duly reported, as legally required
since 2002, increased from 18 percent in 1990 to 41
percent in 1995, 54 percent in 2001, and 80 percent in
2005 (Rurup et al. 2008). In Belgium, the number of
7
A case was recorded as euthanasiain the strictly anonymous
epidemiological studies when the death-certifying physician had
responded in the affirmative to the questions of (1) explicit patient
request, (2) (potentially) lethal drug administration, and (3) inten-
tion to hasten death (Deliens et al. 2000; van der Heide et al. 2003).
If there had not been a (reitated) explicit request, the case was
classified as life ending act without explicit request.However,
this may for instance have occurred for the death struggle of an in
extremis suffocating or agitated patient who had previously re-
quested a physician-assisted death, with no time or opportunity to
consult a colleague because it happened during the night and in the
patients home. Few would dispute the ethical legitimacy and
clinical advisability of such an intervention. This is justto illustrate
that legal regulations cannot capture all clinical situations. There-
fore, no disproportionate opprobrium need be attached to such
quantitatively limited deviations from the letter of the law.
8
There is so far no evidence of any erosion of public support for
the Belgian model. On the contrary, inthe European Values Study
the confidence of Belgians in theirhealth care system rose from 87
percent in 1999 (Halman 1999) to 91.2 percent in 2008, second in
Europe only to Iceland (European Values Study 2008). The
legalisation of euthanasia, the generalisation of palliative care,
and the Patient Rights Billprobably the most important changes
in health care in the past decaderather seem to have increased
the confidence of the public. Not that Belgians areuncritical: Over
the same interval they increasingly distrusted, for example, politi-
cians, banks, and the Church.
520 Bioethical Inquiry (2014) 11:507529
reported euthanasia cases has increased each year. In
Flanders in 2007, slightly more than half the estimated
total number of euthanasia cases (as according to the
technical definition of the death certificate studies) were
reported (Smets et al. 2010). If the trend in reporting
continues, about 80 percent of the cases would be re-
ported by now. It must also be remembered that before
the law on euthanasia, none of the 4 percent of physcian-
assisted dying were reported (Deliens et al 2000). One
must also note that most unreported cases of euthanasia
as defined by "intention to hasten death" in the epide-
miological studies were clinically indistinguishable
from intensified alleviation of pain and symptoms or
terminal sedation. They were not euthanasia in terms of
the law because no lethal drugs were used and the
physicians themselves labeled their act not as euthana-
sia, but as symptom treatment (Chambaere et al. 2010a).
In French-speaking Belgium, the prevalence of contin-
uous deep sedation is higher and the more rare euthana-
sia cases are also less often reported. There seem to be
cultural differences with Flanders, including more aver-
sion to outside interference in the doctorpatient rela-
tionship (Chambaere et al. 2010b; Cohen et al. 2012).
Lack of Regulation of Other End-of-Life Decisions That
Might Hasten Death
When decisions are taken not to start or to discontinue
life-prolonging treatments, or to commence continuous
deep sedation until death, which denies patients the spir-
itual and affective dimensions of dying, they do not
benefit from the rigorous process required for euthanasia.
These much more frequent, and barely less radical, end-
of-life decisions still belong to the physicians
unscrutinised prerogatives. The steep increase in inci-
dence of continuous deep sedation may be based more
on physician than on patient preferences (Anquinet et al.
2012). Also, doubts have been cast on whether palliative
sedation provides perfect comfort (Deschepper et al.
2013). Yet, these unregulated practices equally concern
patient autonomy, raise the same ethical issues, and de-
serve similar precautions as euthanasia.
Minors
The illegality of life-ending of minors, an empirical real-
ity (Provoost et al. 2005; Pousset et al. 2010), became
somewhat less problematic when in February 2014 the
Belgian parliament enacted an extension of the
euthanasia law to capableadolescents (Moniteur
Belge 2014). Similar to the concept of so-called Gillick
competence (Wheeler 2006)intheEnglishcommonlaw
(where the cut-off is 16 years), for children under 12 their
parents are entrusted with decisions, but requests of eu-
thanasia by adolescents who are judged to be capable of
making their own decisions can be honoured in the
Netherlands since 2002. Only a handful are known to
have occurred. After extensive hearings, a majority con-
sensus emerged in the Belgian Senate that some children,
especially after a long disease history with an illness such
as leukaemia, could be considered competent to make
valid requests if, after professional psychological consul-
tation, so judged by the caregiving team. Euthanasia has
become legal in case of refractory physical suffering if the
minor is determined competent by a panel of professional
caregivers and the parents agree. On the basis of a
favourable experience with euthanasia in refractory suf-
fering by mental illness, proponents had argued for also
including mental illness. There is casuistic evidence that
suicidal adult refractory psychiatric patients, after having
been assured that a request of euthanasia might at some
time in the future be honoured, refrained from further
suicidal attempts and did not during a follow-up of sev-
eral years demand euthanasia. The assurance of a desired
death when they would judge the time had come appar-
ently sufficed to keep them alive (Callebert, Van
Audenhove, and De Coster 2012). For adolescent psy-
chiatric patients it was surmised that the mere possibility
of euthanasia could reduce the alarming rate of suicide
among children and adolescents. In the end, refractory
mental suffering was excluded because at the age of 18 a
mental condition cannot have been treated long enough to
be judged hopeless. Christian-democrat spokespersons
opposed the extension, wanted a cut-off at age 15 and
insisted on emphasising the relational dimension of end-
of-life decision-making, with more legally enforced in-
volvement of the family and all caregivers. The law was
enactedinFebruary2014,with86votesinfavour,44
opposed, and 12 abstentions, an almost identical majority
as the 2002 law for adults, and most Christian-democrats
and the extreme-right parties still dissenting. This exten-
sion of the law to capable adolescents has been de-
nounced as a logicalslippery slope effect in much of
the world media. Critics often misunderstood or
misrepresentated the actual changes to the law and
disregarded that, everywhere