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Abstract
The Belgian model of ‘integral’ end-of-life care consists of universal access to palliative care (PC) and legally regulated euthanasia. As a first worldwide, the Flemish PC organisation has embedded euthanasia in its practice. However, some critics have declared the Belgian-model concepts of ‘integral PC’ and ‘palliative futility’ to fundamentally contradict the essence of PC. This article analyses the various essentialistic arguments for the incompatibility of euthanasia and PC. The empirical evidence from the euthanasia-permissive Benelux countries shows that since legalisation, carefulness (of decision making) at the end of life has improved and there have been no significant adverse ‘slippery slope’ effects. It is problematic that some critics disregard the empirical evidence as epistemologically irrelevant in a normative ethical debate. Next, rejecting euthanasia because its prevention was a founding principle of PC ignores historical developments. Further, critics' ethical positions depart from the PC tenet of patient centeredness by prioritising caregivers' values over patients' values. Also, many critics' canonical adherence to the WHO definition of PC, which has intention as the ethical criterion is objectionable. A rejection of the Belgian model on doctrinal grounds also has nefarious practical consequences such as the marginalisation of PC in euthanasia-permissive countries, the continuation of clandestine practices and problematic palliative sedation until death. In conclusion, major flaws of essentialistic arguments against the Belgian model include the disregard of empirical evidence, appeals to canonical and questionable definitions, prioritisation of caregiver perspectives over those of patients and rejection of a plurality of respectable views on decision making at the end of life.
- End of Life Care
- Euthanasia
- Palliative Care
- Right to Refuse Treatment
- Prolongation of Life and Euthanasia
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- End of Life Care
- Euthanasia
- Palliative Care
- Right to Refuse Treatment
- Prolongation of Life and Euthanasia
Introduction
In a number of jurisdictions, the legal regulation of physician-assisted dying, that is, euthanasia and physician-assisted suicide (hereafter simply ‘euthanasia’) is being debated. The relationship between palliative care (PC) and euthanasia, traditionally an adversarial one, is a crucial issue. A lightning rod in this debate was a study published in the British Medical Journal in 20081 and updated in 20142 describing the Belgian model of ‘integral’ end-of-life care, in which euthanasia is embedded in PC.
The study defended two major concepts: first, that euthanasia can be part of what was called ‘integral PC’ and second, that some people when they are dying reach a point where they consider (further) PC futile and request euthanasia. These two principles of the Belgian model have been strongly criticized in a host of papers3–9 and most recently in the European Association for PC (EAPC) White Paper on euthanasia, which claims ‘to provide a normative ethical framework for PC professionals’.10
Criticisms of the Belgian model have fallen into two broad categories, pragmatic and essentialistic.
Pragmatic criticisms postulate that classical perceived risks of euthanasia may be worsened if the practice is endorsed by PC. These concerns include (1) runaway euthanasia, (2) failure of legal safeguards to protect vulnerable persons, (3) stunting of the development of PC and (4) erosion of public confidence in the healthcare system.3–5 These pragmatic concerns have been assuaged by many empirical studies that were reviewed in the index studies.1 ,2 The seminal study, on the basis of historical and epidemiological data, had concluded that there was synergy between PC and euthanasia in the development of the Belgian model, and that no significant logical or pragmatic/empirical adverse slippery-slope effects had occurred.1 ,11 ,12 Imperfections in the application of the Belgian euthanasia law have been duly identified,2 and a handful of cases of euthanasia for psychiatric conditions were controversial,i but on the whole the dire predictions of the pragmatic critics have not been epidemiologically verified.2 Rather, increasingly prudent end-of-life practices indicate that if indeed there is a ‘slippery slope’, Belgian end-of-life caregivers have ascended rather than descended it.1 ,2 A study analysing two decades of empirical research on euthanasia in the Netherlands came to a similar conclusion: ‘the legalization of euthanasia in the Netherlands did not result in a slippery slope for medical end-of-life practices’.13 An update of the epidemiological findings in 2013 reinforced the earlier conclusions that carefulness at the end of life has increased since legalisation14 and mainstream PC in Belgium has reaffirmed its commitment to ‘embedding’ euthanasia within PC.15 So much for the pragmatic objections to the Belgian model.
The essentialistic criticisms are epistemological, historical, conceptual, doctrinal or moral in nature. They include that (1) empirical data are irrelevant to normative ethics,8 (2) euthanasia and PC are incompatible for historical reasons,3 ,6–8 ,10 (3) the WHO definition of PC excludes euthanasia,6 ,8 ,10 (4) PC is by definition never futile7 ,8 ,10 and (5) PC is about compassion whereas euthanasia is about autonomy.3 ,4 ,8–10 ,12 These are the criticisms we will address in this paper.
To provide appropriate context for reviewing the various objections, we must first briefly describe the Belgian model of integral end-of-life care, the current state of end-of-life care in Belgium and the advantages that its proponents see in PC having embraced euthanasia.
Characteristics of the Belgian model
In 2002, in one legislative move, together with a law on patient rights and one assuring generalised access to PC, Belgium's parliament legalised euthanasia under strict regulations of prudence. The legislators' objective with this three-pronged approach was to institute comprehensive end-of-life care.ii
According to the euthanasia law, a physician may carry out euthanasia if there is a repeated, well-considered request from a competent person who is in a state of continuous and unbearable physical or mental suffering, which cannot be alleviated and which results from a serious and incurable condition caused by disease or accident. The person must have been informed about alternatives such as the initiation or continuation of PC or palliative sedation. At least one further, independent, physician must have been consulted (and an additional specialist when death is not imminent, in which case a moratorium of 1 month must be observed before euthanasia can be performed). Those who desire for euthanasia at a time when they are irreversibly comatose can write witnessed advance directives to this effect. Euthanasia cases must be reported to the Federal Control and Evaluation Commission, which checks whether the legal criteria have been fulfilled. The Commission can make further inquiries; in 2012 and 2013 enquiries were made in 14% of all reported cases.16 Recently, for the first time, a case in which legal precautionary conditions were judged unsatisfied was referred to the public prosecutor.
In 2003, in Flanders (the northern, Dutch-language half of Belgium), the professional PC organisation Federation for PC Flanders (FPCF) officially embraced euthanasia as an option within PC. The FPCF's position paper states that:Palliative care and euthanasia are neither alternatives nor antagonistic […] Euthanasia may […] be part of palliative care […]. Caregivers are fully entitled to ethical limitations, but they must be expected to state these limitations candidly, clearly and above all in due time….17
The FPCF reconfirmed its position in 2013 and further elaborated its motivation.18 To date, it is the only professional PC organisation worldwide to ‘embed’ euthanasia as an integral part of PC. According to the latest available figures, 74% of deaths by euthanasia were preceded by professional multidisciplinary PC.14 The resulting model of end-of-life care is depicted in figure 1.
The Belgian model of integral end-of-life care. This Venn diagram (which is not area-proportional) of integral end-of-life care established by the Belgian legislature shows that professional palliative care (PC) and euthanasia together account for slightly more than half of all deaths. Somewhat <50% of all deaths, including the sudden deaths, which are not eligible for PC, are not preceded by professional multidisciplinary PC or euthanasia. Most (74%), but not all euthanasia cases in Belgium occur after a professional PC pathway. Euthanasia and conventional PC practices overlap: integral PC is conventional PC in which euthanasia is embedded.15 ,17 ,18 The percentages of all deaths are those of the latest surveys.14 ,15
In contrast, the official mainstream position of the EAPC is that PC must not be involved in euthanasia10 ,19 ,20 and that euthanasia does not belong in PC.10 iii Yet, a substantial number of individual PC workers approve the Belgian model or advocate a stance of ‘studied neutrality’.6
PC is well developed in Belgium and its overall penetration is high: in 2013, about 50% of all death cases benefited from professional multidisciplinary PC.15 According to all seven available indicators of the state of development of PC, Belgium and the Netherlands are roughly on a par with the UK, the benchmark country where PC has the longest history.21 They are well ahead of Germany, France and Spain, countries where, as in the UK, euthanasia is illegal.22 Euthanasia was depenalised only after Belgium's level of development of PC had become high1 ,22 and figure 2 shows that PC's expansion, which is by law demand-driven, has since continued unabated at a rate of 10% per year.21 In sum, there may still be room for improvement, but none of the pragmatic fears of opponents has materialised.
Federal expenditure for palliative care (PC) services in Belgium.
Advantages of PC that includes euthanasia
Before discussing essentialistic objections to the Belgian integral PC approach, we will briefly summarise the pros ascribed to it by its founders and practitioners, both for PC workers and for patients.
For many PC workers, embracing euthanasia as an optional part of PC helps them, without renouncing other key ethical values, to better observe the basic value of respect for autonomy, the PC tenet of patient centeredness. For the caregivers of some patients, euthanasia is one more stage of ‘total care’, another cardinal tenet of PC.
Next, in the Belgian model, PC workers can promote exemplary ‘total care’ also for euthanasia performed outside of PC settings. Being among the ‘sages’ of euthanasia strengthens their position as guarantors of ‘eu-euthanasia’, that is, euthanasia technically well performed and performed in a spirit of ‘total care’.2 Finally, as loyal participants in the statutorily prescribed palliative healthcare system, PC workers can expect to have more clout for exacting the funding for the further development of PC.
Next, for patients, continuity of care is guaranteed. Patients who request euthanasia are not turned away and need not be referred to other caregivers, with the potential consequence of additional suffering.
Patients can be confident that all options will be available, assured that all conventional PC alternatives to euthanasia will be considered and that euthanasia will be performed in a spirit of holistic care.
The preparation for euthanasia, because it is lengthy and when in professional PC multifaceted and multidisciplinary, gives patients an enhanced opportunity for a fulfilling departure from their life and from their loved ones and for ‘living their death’ also spiritually. Those who oppose euthanasia on religious grounds should take this into account.23
Having summarised the Belgian model of end-of-life care, we will now deal with the essentialistic criticisms. We will in succession discuss the epistemological, historical, doctrinal, conceptual and ethical objections and entitle each category of objections by a quote or statement that denotes it.
Essentialistic objections to the Belgian model
Epistemological: ‘empirical data, irrespective of their nature, are irrelevant for normative ethics’
Some critics of the Belgian model have a meta-ethical problem: Jaspers et al 8 did not dispute the available empirical data in support of the Belgian model, but declared them epistemologically irrelevant. The conclusions of the seminal study1 were judged unacceptable because they were ‘inductive’ (ie, in this case evidence-based) and inductive reasoning, it was argued, can never lead to general conclusions.8 We know that there is more to many issues than empirical data can reveal, but we believe an empirical approach is mandatory wherever possible, including in applied ethics. No amount of data can automatically lead to a definite normative conclusioniv on euthanasia in PC, but abundant empirical data gathered in Belgium and the Netherlands should greatly inform the debate.
Historical: ‘euthanasia and palliative care are incompatible for foundational historic reasons’
It is a fact that PC was introduced as antagonistic to euthanasia. For Dame Cicely Saunders, the founder of professional PC, the prevention of euthanasia was one of the principal foundational objectives of PC.24 Thus, euthanasia integrated within PC is viewed as a betrayal of the historical roots of PC.
In response, we submit that when one looks at its history in Belgium, one sees much less antagonism than synergy between euthanasia and PC.1 ,2 ,15 ,17 Excluding euthanasia from PC on historical grounds may be as misguided as banning surgery from medicine on the basis of the original Hippocratic Oath. Indeed, both the circumstances and the meaning of concepts evolve over time. For example, it has become clear that the best PC is sometimes unable to assuage unbearable suffering. Respect for the autonomy of the person now has much greater prominence than in the 1960s. Also, contrary to the legal and scientific definition of ‘euthanasia’ now adopted in the Benelux countries, in the 1960s the term also denoted life-ending without explicit request, which is what then the founders of PC are likely to have foremost had in mind.
Doctrinal: ‘euthanasia and palliative care are incompatible according to the WHO definition’
Integral PC has also been rejected because euthanasia would be incompatible with the very definition of PC.8 ,10 The authoritative definition from WHO specifies that PC ‘intends neither to hasten or postpone death’.25 Key here is ‘intention’, which means WHO relies on doctrine-of-double-effect reasoning that distinguishes life-shortening actions with an intention to hasten death, like euthanasia, from actions with a life-shortening effect without intention to shorten life. The latter may include forgoing life support, giving potentially life-shortening doses of medication for symptom control as well as continuous deep sedation until death without fluids and nutrition. The ensuing normative stance is that while the former are unacceptable, the latter, which are frequent in conventional PC, are morally justified.
Although in criminal law intention matters a great deal,26 for example, to distinguish manslaughter from murder, relying on intention to establish the ethical acceptability of end-of-life practices is perilous.
First, there are ‘intentions’ that fly in the face of high probability and reasonable expectation, as when life support is forgone. When one relies on intention, one is really dependent on self-reporting. This allows people to fabricate an intention they at heart do not have or to obfuscate an intention they do have.
Second, the same action can be described in different ways, without there being a way to determine which is correct.27 Thus, in a literal interpretation of the WHO definition, established PC practices such as forgoing life-prolonging treatment could, depending on the intention of the caregiver, not belong within PC. Conversely, practitioners of euthanasia can describe their intention as the quelling of suffering and the honouring of the will of the patient rather than the hastening of death.
Third, acts almost always serve multiple intentions. Establishing a hierarchy between them is very difficult.28
Fourth, the WHO definition obviously refers to the intention of the physician. This disregards that multiple actors are involved in PC, foremost the patient, but also nurses, informal caregivers, clergy, etc and these different actors may well have different intentions. Focusing on the physician's intention is unduly paternalistic and ignores the concept of care as a process involving multiple parties (indeed a central tenet of PC). The intentions of the person who is dying cannot be ignored, and those requesting the withdrawal of life-sustaining treatment or continuous deep sedation may intend to hasten their death, even when their physician harbours no such intention.
Also problematic about intention in the WHO definition is that it seems to exclude from PC those interventions that intentionally postpone death. In our view, and we trust for non-dogmatic PC workers, prolonging the survival of a person who is doing well in PC and who wishes to live longer, is part and parcel of good PC.
The above should not be read as an attack on everything the WHO definition stands for. Our point is that euthanasia cannot be excluded from PC by canonically clinging to a disputed definition of PC.
Conceptual: ‘palliative care is by definition never futile’
Several critics object to the notion of ‘futile palliative treatment’,1 ,2 which they consider an oxymoron because ‘all palliative treatment is meaningful’.7 ,8 This is also the EAPC's normative stance: ‘Palliative care is provided up until the end of life and is by definition never futile’.10 The EAPC's first phrase is a truism, but the second is problematic.
First, the term PC is here used in a normative way (to denote utility or meaningfulness) rather than in a descriptive way (ie, to denote a type of care). We would argue that it is best to use the term PC in its descriptive sense. This is the sense we ourselves give to ‘integral’ or ‘comprehensive’ PC.
Second, denying the existence of palliative futility runs contrary to the centrality and autonomy of the patient, that is, that they foremost should define what is desirable or futile. A few (rare) patients decline life-prolonging treatment that they deem futile, and also PC. A larger second category of patients concerns those who, while receiving PC, come to consider its continuation as futile and wish their life to end. Refusing treatments is an undisputed right of competent, fully informed patients.29
In short, ‘meaningfulness’ is inseparable from the question of ‘for whom?’ and one must take a hard look at any a priori subordination of the view of the patient to that of the caregiver. Such a hierarchy violates the modern paradigm of shared decision-making in healthcare in general, and particularly in PC.
Ethical: ‘palliative care is about compassion while euthanasia is about autonomy’
For some, euthanasia and PC are incompatible because of different underlying moral values.5 ,7 ,10 Euthanasia, in this view, is based on the individualistic value of self-determination, whereas PC is based on caring for and helping others. This, we think, is an oversimplification and misrepresentation.
Like others, we see that the classic bioethical values of justice, autonomy, beneficence and non-maleficence underlie both PC and euthanasia.30 ,31 Yet it is implied that Benelux physicians are less compassionate or caring than their counterparts elsewhere.32 Most physicians involved in euthanasia undoubtedly feel misjudged by such portrayals. On the contrary, it can be argued that they adhere to a broader concept of compassion and empathy. When they are receptive to the other person's beliefs and values, they demonstrate a greater capacity and propensity to put themselves in another person's place. Of note, van Tol et al,33 who studied mental processes of Dutch physicians while empathising with unbearable suffering, distinguish between a physician imagining how they would themselves experience the patient's situation (‘imagine self’) and one adopting the patient's perspective and imagining what the situation is like for them (‘imagine other’).33 Thus, a greater regard for autonomy can be viewed as broader compassion and empathy.
These ways of looking at things recognise that there is a plurality of reasonable and defensible views on the ethical acceptability of euthanasia. Although the EAPC official position10—correctly—posits that PC is patient centred, it in effect prioritises conventional PC doctrine that excludes euthanasia over the desires of some patients.
Having said that, the patient must also respect a physician's conscientious objection to euthanasia. The legal and ethical right to conscientious objection is fully recognised in the Belgian euthanasia law and in the Flemish PC guidelines.15 ,17
Summary and concluding remarks
In summary, according to some critics one must disregard the reassuring epidemiological reports on the functioning of the Belgian model because empirical data are irrelevant for normative ethics. We argue that on the contrary, facts must count for much. We further reject the view that PC and euthanasia are incompatible for historical reasons because fixation on historical foundations disregards the evolution of science and society, and would for example exclude surgery from medical care. Also, canonical adherence to the part of the WHO definition of PC stating that ‘palliative care intends neither to hasten or postpone death’ is unwise because intention is a poor criterion for defining practices. Normative definitions in effect pre-empt reflection on what is ethical PC. We further argue that critics who deny the existence of palliative futility, considering further PC meaningful also when the patient finds it futile in effect impose their views on the patient, and breach the PC tenet of patient centeredness. As for ethical values, the view that PC is based on solidarity and compassion, whereas euthanasia merely relates to autonomy oversimplifies and misrepresents the compassionate motives of the actors involved. Moreover, more respect for patient autonomy arguably attests to a broader form of empathy. In terms of underlying moral values, PC and euthanasia are nowhere near as dissimilar as suggested by some critics.
In conclusion, some essentialistic criticisms of the Belgian model of PC that includes the possibility of euthanasia lack epistemological respect for facts. Many criticisms violate patient centeredness and diminish other tenets of conventional PC.
Opponents of the Belgian model seem to reject the coexistence of a plurality of reasonably defensible views on the ethics of euthanasia in the setting of PC, and in any setting. Some of these opponents may be inspired by (usually undisclosed) philosophical or religious beliefs or the emotions entailed by these beliefs.34 Such beliefs are perfectly respectable at the individual level, but should no longer be imposed on a profession or on society. Moreover, there is a plurality of views also among those who are religiously inspired: some religious thinkers appreciate euthanasia.23 ,35
Some might understandably recoil from embedding euthanasia in PC for fear that its endorsement by PC would entail uncritical acceptance and unfettered practice of euthanasia. A broadening of the practice of euthanasia to new categories of patients may be a beneficial development, but one can be concerned with overshoot risks of instrumentalisation of physicians.36 However, integral PC nowhere implies that euthanasia is always right for every patient. On the contrary, PC practising euthanasia in the spirit of holistic care is likely to offer more PC alternatives to euthanasia37 and to set standards of quality. Similarly, the view that ‘futile palliative treatment’ exists for some dying people in no way denies that conventional PC is in most cases highly meaningful.
Let there be no misunderstanding: there should be continued critical scrutiny of PC models, including the Belgian one, to stimulate continuous improvement.2 But more attention should be paid to scientific evidence and to the practical consequences of excluding euthanasia from PC: it would result in the marginalisation of PC in euthanasia-permissive countries, suboptimal end-of-life care, the continuation of clandestine assisted dying and problematic palliative sedation until death.38
Empirical evidence should at least trump the ‘authority’ arguments that are all too frequently invoked. And more broadly, a single form of perspective should no longer be imposed on an entire profession or across society. One can hope that when the history of PC as it now stands39 will be updated, there will, next to conventional PC, also be a place for ‘integral PC’.
Acknowledgments
We are very much indebted to Professor Sigrid Sterckx for momentous brainstorms and important input in early versions. We would also like to thank Neil Francis for incisive comments, Kenneth Chambaere for providing data and Jane Ruthven for copy-reading the English of an earlier version. Most of all, we wish to pay tribute to the Flemish palliative care workers who as of the early 1980s had the compassion, foresight and courage to innovate.
References
Footnotes
Contributors JLB conceived the problem statement, the general structure of the paper and did most of the writing. KR contributed ethical sections, reviewed successive versions and participated in the writing.
Funding KR was funded by the Ghent University Research Fund.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
↵i Belgium's governmental advisory council for bioethics is currently at work on recommendations seeking to strengthen the conditions of due care and prudence for cases of irreversible psycho-emotional suffering by psychiatric disorders.
↵ii A similar comprehensive law was in 2015 enacted in Québec, Canada. National Assembly. An Act respecting end-of-life care (https://www.google.be/#q=quebec+act+respecting+end+of+life+care).
↵iii While this paper was in press the International Association for Hospice and Palliative Care, after inventorising statements by PC organisations worldwide (but ignoring Belgium), issued a similar position. (De Lima L, Woodruff R, Pettus K et al. International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide. J Palliat Med. 2017 Jan;20(1):8–14. Epub 2016 Nov 29.)
↵iv Insofar as coercitive rules would make sense in contingent clinical settings, which is disputable.
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