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 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. An original study Bernheim et al. 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. A response to these theoretical objections is in preparation. These questions include the following:. How is the Belgian model organised? This article responds to these questions and concerns.
Questions and Answers on the Belgian Model of Integral End-of-Life Care: Experiment? Prototype?
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 , consulting editor of the Journal of Bioethical Inquiry and a former resident of Belgium, and the authors JB, WD, AM. MA: Clinicians in jurisdictions where euthanasia remains illegal have a wide range of reactions, from envy to outrage.
Many wonder what it feels like to carry out euthanasia. 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 requirements to respect patient autonomy, to act beneficently, and to do no harm Deliens and van der Wal ; De Keyser 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 followed 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. This experience is confirmed by a Dutch qualitative study of the psychological and philosophical aspects of euthanasia requests Kimsma 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.
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First, euthanasia anyway has an only modest impact on lifespan: The estimated hastening of death in Second, the perspective of a good death seems to confer psychological advantages such as reduced anxiety, more attention to spiritual accomplishment, and more concentration on quality of life, all of which may promote a hanging onto life. Third, treatment acceptance and compliance may be increased. For example, some patients agree to life-prolonging treatment only on condition that, if non-tolerated adverse effects occur, they will be granted euthanasia.
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 participate—that 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 discontinuation 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 a ; Heylighen and Bernheim a , b has a transcendental meaningfulness.
For him, euthanasia feels much like delivering a baby.
This debate can be informed by empirical data. 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 Europe-wide comparative research shows that personal worldview does have some influence, but that the national cultural and legal context counts for much more. It appears, therefore, that the surrounding culture strongly influences personal views, and perhaps euthanasia legislation changes the culture.
The predominance of patient interests over physician views is of itself an important ethical stance Hunt 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. When euthanasia was performed, there was clear evidence of exceptionally high levels of spiritual or existential care.
Religious or existential 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 a matter of course, restrain many patients from presenting requests for euthanasia. For example, a recent documentary 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 Another documentary showed a year-old woman with refractory cancer symptoms preparing 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 Applying Anamnestic Comparative Self Assessment ACSA , a method to let respondents construct a personal scale of subjective well-being Bernheim b ; Theuns, Hofmans; and Bernheim , as an instrument of spiritual care, Desmet asks his patient what was the happiest time in her life. Patient and doctor communicate warmly.
When Dr. Desmet had previously debated author JB and written a book opposing euthanasia Desmet In the United Kingdom, palliative care was introduced with one of its stated aims being to prevent euthanasia Saunders This was not at all so in Belgium: An initial major motive for the introduction of palliative care was also to promote the acceptability of euthanasia Bernheim , ; Distelmans 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 euthanasia e. Upon closer examination, the foundational ethical principles 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 ; Woods For euthanasia there is, however, an emphasis on patient autonomy, and for palliative care the emphasis is on exemplary care for the patient.
Foundations of palliative care and of legal euthanasia: Many similarities and a few differences.
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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 capital Brussels , and a small German-speaking community in the east of the country.
In effect, Belgium is multilingual and multicultural, arguably prefiguring e. Political parties and institutions of all persuasions are divided between the two largest language groups. The composition of the Belgian parliament gave rise to a unique opportunity in when a governing left-of-centre coalition of liberals, social democrats and greens left the Christian democrats out of the governing coalition for the first time in five decades Griffiths, Weyers and Adams However, the left-of-centre political coalition valued palliative care no less than the religiously inspired minority.
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. 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 euthanasia and a legitimate objection against its legalisation.
It is with this double motivation that they became pioneers of palliative care Bernheim , ; Distelmans The motivation of diverse palliative caregivers, including religious ones, to embrace euthanasia was also dual. 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. 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.
MA: About 2 percent of Belgians and Dutch die with euthanasia, where the physician administers the lethal drugs, and less than 0. Why is physician-assisted suicide only marginal in the Benelux countries? 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. However, 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.
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There is anecdotal evidence that, when given the choice, many more patients opt for euthanasia than for assisted suicide. This may be because 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 barbiturate potion Groenewoud et al. However, other psychological factors seem to play a part. Perhaps the preference of some patients to be passive is underestimated Bernheim ; Pardon et al.
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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. 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 satisfaction, which was documented in the evolution of his ratings of subjective well-being by Anamnestic Comparative Self Assessment Bernheim b.
This case also raises the question to what extent physicians can accept to be instrumentalised by patients. MA: How has Belgium organised end-of-life care and how does the Belgian model work? Integral palliative care as conventional palliative care that has embraced and embedded euthansaia Federatie Palliatieve Zorg Vlaanderen ; Vanden Berghe et al.
The Venn diagram shows the qualitative relationships between types of care: Integral 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 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. 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 Article 14 of the Euthanasia Law. They have a legal duty to refrain from futile medical treatment, but not to engage in euthanasia Bernheim, Vansweevelt, and Annemans It does not have and does not claim a monopoly on the provision of euthanasia.
This is because 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 palliative care including optional euthanasia and assisted dying without involvement of multidisciplinary palliative care.
In Flanders, physicians, many of whom are unfamiliar 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.