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Lemmens, Trudo; Kurz, Elizabeth --- "The future of medically-hastened death in Canada: why and how we should avoid the mortal flaws of Belgium's euthanasia regime" [2016] OtaLawFS 26; Law, ethics, and medicine: essays in honour of Peter Skegg 96

Last Updated: 31 May 2019

5 THE FUTURE OF MEDICALLY-HASTENED DEATH IN CANADA: WHY AND HOW WE SHOULD AVOID THE MORTAL FLAWS OF BELGIUM’S EUTHANASIA REGIME

Trudo Lemmens & Elizabeth Kurz*

INTRODUCTION

For several decades, courts in various countries have been confronted with a variety of situations in which patients refuse life-saving treatments or request that their life-support be withdrawn to allow them to die. The common law has long since accepted this practice, which has also been the law in New Zealand. As Peter Skegg summarized aptly in 2008: “[C]ountless thousands of New Zealanders have been “allowed to die”, without all possible steps having been taken to keep them alive.”1 Yet, when it comes to obtaining active life-ending actions by physicians or medical professionals (other than the withdrawal of life-support), no common law jurisdiction has ventured as far as to legalize the practice of euthanasia. This will have changed by the time this book is printed. At the time of writing this chapter, Canada has embarked on a process of legalizing what is in Canada now referred to as “Medical Assistance in Dying” but which we will refer to here as Medically Hastened Death [MHD].2

This chapter draws extensively from a longer chapter (Trudo Lemmens “The Conflict Between Open-ended Access to Physician-Assisted Dying and The Protection of the Vulnerable: Lessons from Belgium’s Euthanasia Regime in the Post-Carter Era” in Catherine Régis, Lara Khoury and Robert Kouri “Les Grands Conflits en Droit de la Santé” (Yvon Blais, Cowensville, 2016) 261, Social Science Research Network <http://papers.ssrn.com/so13/papers.cfm?abstract_ id=2734543> and a forthcoming article submitted to the McGill Journal of Law and Health. PDG Skegg, Ron Paterson and Joanna Manning Medical Law in New Zealand (Brookers, Wellington, 2006) at 534.

We will use this term Medically Hastened Death [MHD] even though the use of continuously changing terminology has made it at times confusing for people in the Canadian debate to fully grasp what is being discussed. The terms euthanasia and assisted suicide seem to have been abandoned, likely for advocacy and ideological reasons: people appear to be more hesitant to explicitly support “euthanasia” or “assisted suicide”. “Assisted death”, “physician assisted dying,” or “medically assisted death” have likely been introduced because the terms sound good. It is hard to be opposed to the notion that people receive assistance in the process of dying. When people oppose legalization of active life-ending interventions, they have rhetorically been accused of “being against medical assistance in dying”. Palliative care specialists appropriately point out that they also ‘assist’ people in the dying process. This is why we will generally use the term MHD, except when discussing the practice and legislation in Belgium and the Netherlands, where the term “euthanasia” is used.

Peter Skegg predicted back in 1988, in a lecture honouring Francis William Guest, the first Professor of Law and first full-time Otago Law Dean, how we would be facing far-reaching changes in the area of end-of-life law in the decades to come. He identified how the gradual loss of strength of the concept of the ‘sanctity of life’ would be associated with these changes.3

I am far from certain that belief in the sanctity of human life will continue as an infusing principle of our society, in the absence of a reaffirmation of the theological foundations on which it was based. The next thirty years will require at least as much discussion and decisionmaking as the last thirty about the edges of human life, and the preservation or termination of life. More important still, both for our medical law and ethics, will be the views adopted about the significance of human life itself.

It is indeed, at least to some degree, the abandoning of the key role of the concept of the sanctity of life in law that facilitated the move towards legalization of the practice in Canada. With its decision in Carter v AG Canada,4 the Supreme Court distanced itself from its earlier affirmation of the legality of an absolute prohibition of physician assisted suicide and euthanasia in Rodriguez v British Columbia (Attorney General),5 in which a small majority of the Court had confirmed the centrality of the concept of the sanctity of life and the legislator’s appropriate commitment to protect and promote it. In Carter, the concept was largely ignored. The Court invalidated the Canadian Criminal Code’s absolute prohibition of physician assisted suicide and invited the Federal Parliament to develop a regulatory regime that provides access to MHD for at least some people, while also providing sufficient safeguards.

The developments in Canada are receiving significant attention in other common law jurisdictions in which advocacy groups and some health law scholars are increasing the pressure on governments to legalize the practice. For those pushing for legalization of the practice, this legalization is a logical and overdue next step, following in the footsteps of other legal initiatives that aim at strengthening patient autonomy and self-determination in the context of medical decision-making.

Yet, contrary to what some commentators and some reports that immediately came out following Carter suggest, the Court’s decision remains ambiguous and leaves room for very divergent interpretations. If Parliament interprets the Court’s

PDG Skegg “F.W. Guest Memorial Lecture 1988 - The Edges of Life” [1988] OtaLawRw 1; (1988) 6 Otago L Rev 517.

Carter v Canada (Attorney General) [2015] 1 SCR 331 [Carter].

Rodriguez v British Columbia (Attorney General) [1993] 3 SCR 519.

decision narrowly, the legislature could introduce an exceptional regime that allows physicians to provide direct assistance in dying only to people who are at the end of life or with irreversibly declining capabilities; perhaps only to those in the rather unique positions of the applicants in the Carter case, with a strong focus on the need to protect those who are vulnerable from dying prematurely.6 If it follows a broader, more individual rights-focused interpretation of Carter, and emphasizes less the fact that the Court recognized the need to protect vulnerable people from ending their lives prematurely, it could introduce a model that provides wide access to MHD. This type of wide access would primarily be based on the notion of individual choice, but with a significant responsibility for physicians and perhaps even other health care providers in evaluating competency and the rationale behind the MHD request, and in direct participation in the ending of life.

The legislative models in Belgium and the Netherlands arguably stand for individual rights-based approaches to euthanasia that also vest significant powers and responsibilities in the hands of physicians.7 Even though MHD requests in these regimes are still restricted to specific circumstances and when certain conditions have been fulfilled, the vague and flexible criteria in these regimes coupled with the significant interpretative and evaluative powers vested in physicians, have de facto resulted in open-ended access to MHD, with competency assessment, informed consent, and post-factum reporting as safeguards.

The two choices are, to some extent, already present in the current Canadian regulatory and policy landscape. Even before Carter was released, Quebec’s legislator included a right to request MHD in its “Loi concernant les soins de fin de vie,”8 (Act related to End of Life Care) also commonly known as “la Loi Mourir dans la dignité” (law of ‘Dying with Dignity’). The Quebec Act provides a somewhat narrow model, which only provides access to MHD to patients who are adult, competent to consent to care, at the end of life, affected by a serious and incurable disease which is characterized by an advanced and irreversible decline, and experiencing intolerable physical or mental suffering. Nevertheless,

6 The Physician Assisted Suicide (PAS) Regimes introduced by several US jurisdictions can

be considered good examples of exceptional and narrower regimes. PAS regimes in Oregon, Washington, California and Vermont, for example, allow physicians to prescribe lethal medication in a very narrow set of circumstances at the end of life, as an exception to the traditional role of physicians, with physicians in a rather marginal role with respect to the specific MHD involved.

7. Note however how this doesn’t mean that the euthanasia statutes in these countries recognize
   an explicit right to MHD. See below.

8 Loi concernant les soins de fin de vie, S-32.0001 [Quebec Act].

the legislation does include somewhat vague criteria such as “at the end of life” which will require interpretation by physicians.

The December 2015 report from the Provincial-Territorial Expert Advisory Group [PTEAG]9 was the first to embrace a very expansive model that goes beyond what even an individual rights-focused reading of Carter requires and recommends – a regime that would be internationally unprecedented in the extent to which would provide access to euthanasia and in the paucity of its regulatory restrictions. The Report of the Special Joint Committee on Physician Assisted Dying [Joint Committee]10 is as—perhaps even more—open-ended than the PTEAG report, recommending an expansive assisted dying regime which would also be available to individuals with non-terminal illnesses, who are not at the end of life, who have mental illness without physical suffering, to incompetent patients through advance directives, and in the future also mature minors. If these recommendations are followed, Canada would have a system that is at least as open-ended as the Belgian and Dutch MHD regimes, and that has in some respects even less procedural safeguards.

In light of the PTEAG and Joint Committee recommendations, and the reality that there will be access to MHD in Canada in the near future, it is important to have a sense of what problems have arisen in existing regulatory regimes. Considering the strong pressures produced by the PTEAG and Joint Committee to move towards a system that is more lenient even than the Belgian and Dutch regimes, we want to focus here on the experience of Belgium to highlight some of the challenges in the actual implementation of MHD based on the criteria and oversight system of the Belgian legislation. We will particularly explore some of the controversies that have arisen in the Belgian context, primarily through the lens of some recently published studies and some case reports.

The evidence from Belgium suggests that when general and open-ended criteria are used to identify who can access MHD, and individual physicians are the main gate-keepers trusted with interpreting these criteria, with only competency assessment and informed consent procedures as safeguards, MHD practices expand in areas that raise serious concerns about the protection of the vulnerable.

9 Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying: Final Report

(Ministry of Health and Long-Term Care, Ottawa, 2015) <www.health.gov.on.ca/en/news/ bulletin/2015/docs/eagreport_20151214_en.pdf> [PTEAG].

10 House of Commons, Special Joint Committee on Physician-Assisted Dying Medical Assistance in Dying: A Patient-Centred Approach – Report of the Special Joint Committee on Physician-Assisted Dying (February 2016) (Chairs: Hon. Kelvin Kenneth Ogilvie and Robert Oliphant) [Joint Committee Report].

The Belgian experience highlights concerns about regulatory regimes that largely rely on post-factum reporting and a limited review of the appropriateness of the practice. They also evoke a culture of normalization of life-ending interventions by physicians that may have long-term consequences that are hard to predict.

We will conclude by arguing in favour of a cautious approach; one that responds to the Supreme Court’s decision by introducing a strict regulatory regime that narrows the conditions under which euthanasia can be requested and that contains both a pre- and post-factum review, amongst other procedural safeguards. These recommendations are formulated here with a focus on Canadian law, but they equally count for other countries like New Zealand where there is a debate about legalizing some level of access to MHD.

HOW TO RECONCILE CARTER WITH A MORE NARROW, RESTRICTIVE PAD REGIME

A first obvious issue to explore here is the constraints that are imposed on federal and provincial legislators as a result of Carter. In summary,11 the Court recognized that a prohibition on what it termed “Physician Assisted Dying” [PAD] deprives some competent adults who suffer from a grievous and irremediable medical condition that causes enduring and intolerable suffering from their section 7 Right to Life, Liberty and Security of the Person, of the Canadian Charter of Rights and Freedoms.12 The right to life is engaged because the prohibition on PAD pushes “some individuals to take their own lives prematurely, for fear that they would be incapable of doing so when they reached the point where suffering was intolerable.”13 The prohibition further limits their liberty with respect to a decision that intimately affects their bodily integrity, dignity, autonomy, and medical care, in particular in how they wish to respond to a grievous and irremediable medical condition.14 Finally, their right to security is engaged when such a prohibition forces them to endure intolerable suffering.

The Court considered whether the deprivation of rights is justifiable, and affirms that the criminal prohibition on PAD has the pressing and substantial objective of protecting the vulnerable. But, it ruled that an absolute prohibition

11 For a short discussion focusing on the various implications of Carter, see Bernard Dickens

“Responses to the Carter Judgment of the Supreme Court of Canada Allowing Medically Assisted Suicide” (forthcoming).

12 Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (UK), c 11.
13 Carer v Canada (Attorney General) [2015] 1 SCR 331 at [57].
14 At [66].

is overbroad because it includes some individuals who are not vulnerable; it is disproportionate because the government failed to prove that anything less than an absolute prohibition would be incapable of protecting the vulnerable; and in discussing the minimal impairment component of the proportionality test, the Court accepted the trial judge’s appraisal of evidence with respect to the existence of more permissive jurisdictions. The Court also rejected fresh evidence presented in relation to problematic developments in Belgium by the Dean of the Faculty of Law of the University of Namur, Professor Montero. The Attorney General argued that these reports show the development of a slippery slope that puts the vulnerable at risk.

The Court concluded that the unjustified restriction of section 7 rendered the criminal prohibition unconstitutional to the extent that it prohibits, for people “like Ms. Taylor”,15 the right to have access to “physician-assisted death for a competent adult person who 1) clearly consents to the termination of life; and 2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”16 In addition, the Court emphasizes that in this PAD context, a patient has a right to refuse treatment, and that the term “irremediable” does not mean that existing treatments need to be accepted before obtaining access to PAD.

The dominant response to Carter has been to focus on how the Supreme Court recognized for the first time a Charter-protected right to obtain assistance in dying in specific circumstances. For those focusing on the rights component, the general parameters of the case are used as an occasion to argue for wide access to MHD on the basis of individual choice. Support for this approach is found in some of the statements by the Court in relation to the similarity between other end-of-life decisions such as treatment withdrawal and refusal, and active life-ending actions. The Court’s endorsement of the trial judge’s argument that competency and voluntariness assessments are already part and parcel of end-of-life care and that they can play a similar role in the context of active life-ending decisions, arguably provides support for this position as well. This rights-focused model is reflected in the recommendations by the PTEAG and the Special Joint Committee on Physician-Assisted Dying.17 PTEAG’s report recommends “a uniquely Canadian

15 At [126].
16 At [127].

17 PTEAG, above n 9. Also see news release from the Ministry of Health and Long-Term Care “Provinces, Territories Establish Expert Advisory Group on Physician-Assisted Dying” (14 August 2015) Government of Ontario <https://news.ontario.ca/mohltc/en/2015/08/ provinces-territories-establish-expert-advisory-group-on-physician-assisted-dying.html>.

approach”18 while the Joint Committee recommends an autonomy-centred approach to PAD; recommendations which would offer wide access to life-ending measures with limited additional safeguards.

There is, however, another reading of the decision, which focuses on the Court’s recognition of the relevant role of the criminal law in this area, the clear emphasis by the Court on the need for a very strict regulatory regime, and the fact that the Court stated that its analysis is restricted to the specific end-of-life circumstances of Ms. Taylor, one of the applicants in Carter.19 This stricter reading of the decision supports the call for a narrow legislative regime that introduces access to MHD as an exception. Support for this reading can also be found in various brief statements in the decision. These statements may seem to clash with the rather open-ended support for a right to MHD found in the general parameters of the court and could therefore be brushed aside as in obiter remarks. But when combined with the suspension of invalidity of the Criminal Code provision, which is explicitly aimed at enabling Parliament to enact a new regulatory regime, these statements provide strong support for a more narrow interpretation. In fact, the integrity of the decision can only be maintained if these statements are seen as a strong expression of support for restrictions.20

First of all, the Supreme Court provided general parameters with overly general language, yet it limited those parameters by repeatedly stressing that the specific facts of Carter involved rather unique circumstances. When discussing whether the restrictions on the right to PAD are in line with the principles of fundamental justice, the court only considered the absolute criminal law restriction to be overbroad, since it includes “at least some people like Ms. Taylor” who are not vulnerable. The Court reiterated at the end of the judgment the narrow basis of its decision: “The scope of this declaration is intended to respond to the factual circumstances in this case. We make no pronouncement on other situations where physician-assisted dying may be sought.”21 In fact, when discussing the ‘fresh evidence’ brought to the Court, it stated that the reports of particularly problematic

18 PTEAG, above n 9, letter from the Co-Chairs Jennifer Gibson and Maureen Taylor, Preface to the Report.

19 For an example of a strict interpretation, see David Baker, Gilbert Sharpe and Rebeka Lauks “Federal and Provincial Responsibilities to Implement Physician Assisted Suicide” (2016) 36(3) Health Law in Canada 148.

20 The fact that the general parameters appear to clash with some statements and that there are other seemingly contradictory elements in the decision suggests that rather than reflecting unanimity, the decision reflects a compromise among competing visions. The fact that no specific judge is signing off may also suggest that this is a compromise text.
21 Carter v Canada (Attorney General) [2015] 1 SCR 331 at [127] (Emphasis added).

life-ending acts in Belgium were not relevant because they related to cases “which would not fall within the parameters suggested in these reasons, such as euthanasia for minors or persons with psychiatric disorders or minor medical conditions.”22 It seems difficult to find a clearer statement in support of the argument that the Supreme Court did not intend its ruling to open the door wide open for MHD, for people who are not in a situation “like Ms. Taylor.”

Second, it is clear that the Court accepted that a detailed regulatory regime is necessary in this context, one aimed at protecting the vulnerable. This is also the reason behind its suspension of invalidity.23 As the Court stated, “[c]omplex regulatory regimes are better created by Parliament than by the courts.”24 It is worth pointing out how the Court here seemed to reflect the same wisdom as Professor Skegg, who rejected in his 1988 lecture on “The Edges of Life”, that when it comes to determining legal rules about end of life, “such matters can be satisfactorily resolved in the course of a judicial hearing.”25 For Skegg, these are the type of matters that Parliament should decide following proper deliberation.

The suspension of the invalidity of the Criminal Code provision confirms the Supreme Court’s recognition of the fact that MHD is a complex issue in which

22 At [111].

23 Robert Leckey “The Harms of Remedial Discretion” International J of Constitutional Law (forthcoming) <http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2692208> . Leckey critically compares the suspension of invalidity in the Carter case with the much firmer immediate invalidation of the criminal law provisions related to abortion in Morgentaler. (For another argument in support of the relevance of Morgentaler, see Bernard Dickens, above n 11). Leckey’s critique of the approach in Carter ignores, in our view, the fundamental differences between the abortion context and end-of-life context. This suspension of invalidity reflects the much more complex impact an outright recognition of the right to MHD may have in the absence of a more rigorous regulatory regime that protects the vulnerable. A number of differences can briefly be mentioned here: in both instances, the security and liberty of the person are at stake with respect to decisions related to physical integrity. Yet, in the abortion context, fast intervention is needed because the risks and potential trauma of continued pregnancy and late-term abortions can be significant. In the context of MHD, continued suffering can also be traumatizing, but this has to be weighed against the risks of prematurely ending a person’s existence. In MHD, we have in other words a dilemma between two choices, both of which can seriously affect the physical integrity and even existence of the person. In situations that are not at the end of life, longer reflection can be essential to allow a change of mind or even a more thoughtful final decision. Competency issues are in the context of MHD clearly a much more significant concern. Presence of palliative care may also make a huge difference. Finally, we would add that family dynamics and interests are an important component in MHD. The death of a person has a huge impact on those around. Some of these points are also made by Baker, Sharpe and Lauks, above n 19.
24 Carter v Canada (Attorney General) [2015] 1 SCR 331 at [125].
25 Skegg, above n 3, at 521.

enabling the exercise of individual rights must be balanced against legitimate governmental obligations related to the protection of the vulnerable.26 Even though the Court goes along with the trial judge’s trust in the fact that competency assessments and informed consent procedures are a reliable component of endof-life care, it clearly ruled from the premise that more is needed than what we currently have in standard medical care when we are considering access to MHD. This can be seen in its frequent reference to the need for a strict regulatory regime, for example when it approvingly cited the trial judge’s confidence in “a carefully-designed system imposing stringent limits that are scrupulously monitored and enforced.”27 That such a regime goes far beyond simple reliance on competency assessment is even more apparent from the Court’s rationale for rejecting the “Belgian evidence”. The Court argued, among other things, that:28

... the cases described by Professor Montero were the result of an oversight body exercising discretion in the interpretation of the safeguards and restrictions in the Belgian legislative regime — a discretion the Belgian Parliament has not moved to restrict. These cases offer little insight into how a Canadian regime might operate.

In other words: the Supreme Court was suggesting here that the Belgian evidence does not undermine the argument that a good regulatory system can work, since Canadian Parliament can opt for an oversight body that operates with less discretion and with tighter safeguards and restrictions. Oddly enough, the Belgian evidence is therefore made very relevant for the implementation of Carter, i.e. as a model that the Court told us unanimously to avoid.

As mentioned, the Quebec Act ‘Mourir dans la dignité” is more narrow in scope. Not surprisingly, those pushing for the more lenient PTEAG approach have already claimed that the Quebec model is too restrictive and not in line with Carter.29 The Act’s art 26 provides access to MHD to patients who are: adult and competent to consent to care; at the end of life; affected by a serious and incurable disease; in a medical situation which is characterised by an advanced and irreversible decline in capacities; and experiencing constant and intolerable

26 Contra Leckey, above n 23.

27 Carter v Canada (Attorney General) [2015] 1 SCR 331 at [105] (reference to trial judgment omitted).
28 At [111] (Our emphasis).

29 See for example Udo Schuklenk: “thanks to the SCC decision, it [the limitation to end-of-life situations] will have to be taken out of Quebec’s legislation again as it would unjustly deprive people of access to assisted dying who are not close to the end of their lives” in “Assisted Dying Coming to Canada” (7 February 2015) Udo Schuklenk’s Ethx Blog <http://ethxblog. blogspot.ca/2015/02/assisted-dying-coming-to-canada.html#comment-form> .

physical or mental suffering, which cannot be alleviated in circumstances that the patient deems tolerable.30 We suggest that this provision can be reconciled with the Carter parameters. Yet, the provisions also contain vague terms such as ‘physical and mental suffering that cannot be alleviated’ and ‘end-of-life’ that will need to be interpreted. The definition of ‘end of life’ in the Quebec Act could, for example, be more narrowly tailored to the specific characteristics of the type of somatic disease Ms. Taylor was suffering from, which in our view Carter allows. As we will discuss further, the experience with the Belgian regulatory system should offer a clear warning about the importance of additional regulatory safeguards, including prior review—which the Quebec legislative scheme lacks—and clear definitions.

If one follows the second interpretation, the provincial and federal parliaments must design legislation that narrowly describes the situation of Ms. Taylor, but which at the same time can fit under the general parameters of the Court. Nothing prevents Parliament from interpreting these parameters and putting forward a reasonable case as to why more narrow and precise terminology is warranted in the context of a strict regulatory regime. The Supreme Court provided guidance, and it is now up to Parliament to make an informed, responsible, democratic decision as legislator. When implementing legislation, Parliament has to engage in a balancing act. Indeed, as the Court recognized in Carter, this is about balancing access to MHD for some, with the need to protect those who are vulnerable from premature death. As Dianne Pothier emphasizes in a recent analysis of the Carter case and of the constitutional options Parliament has, the need to protect the vulnerable is as important as providing access to those who so desire.31 Indeed, the obligation to protect those who are vulnerable, for example as a result of a disability (mental or physical) is directly associated with the right to equality or equal protection (s 15) and the right to life and security of the person (s 7). In other words: the legislative scheme has to balance competing Charter rights of individuals.

30 Lemmens’ translation.

31 Dianne Pothier “The Parameters of a Charter-Compliant Response to Carter v Canada (Attorney General)” (20 March 2016) Social Science Research Network <http://papers.ssrn. com/sol3/papers.cfm?abstract_id=2753167> .

2. THE BELGIAN REGULATION OF EUTHANASIA

Belgium legalized euthanasia in May of 2002. The Belgian Euthanasia Act32 has a number of conditions and procedural requirements. Euthanasia is permissible if the following general conditions are fulfilled: 1) the patient is in a medically hopeless situation; 2) of constant and unbearable physical or mental suffering; 3) that cannot be alleviated; 4) resulting from a serious or incurable disorder; and 5) caused by illness or accident. In addition, the patient must be a legally competent adult or emancipated minor who has made a voluntary request to be euthanized.

The Act further introduces a number of procedural requirements that apply to standard requests for euthanasia by competent adult individuals at the end of life. The first requirement is that there must be a discussion with the patient about her condition, about her prognosis, and about the different treatment options, including palliative care.33 The second requirement is that the physician must ascertain the “persistent physical or mental suffering of the patient and the lasting nature of her request.” The law requires that this be done through “multiple conversations” spread over a “reasonable amount of time”.34 A third formal requirement is a consultation with another independent physician about the “serious and incurable nature of the disease.” The goal is to allow this second physician to “make sure” that the patient is suffering “from relentless and unbearable physical or mental suffering that cannot be alleviated.”35 There are some optional requirements related to contacting members of the treatment team (if there is one, they must be consulted) and family members (if the patient so desires).

Additional requirements and restrictions exist for patients who are not at the end of life, for mature minors, and for euthanasia requests of incompetent patients based on advance directives. When patients are not at the end of life, a third physician who is either a specialist in the condition of the patient or a psychiatrist must be consulted, and an obligatory wait (reflection) period of one month is imposed on the patient. This mandated reflection-period demonstrates a heightened concern for euthanasia in these circumstances, and the need to ensure that the request is well-considered. Under the age of 18, euthanasia can only be provided for physical

32 Wet Betreffende Euthanasie 28 Mei, 2002. Belgisch Staatsblad 22 Juni, 2002. [Law Concerning Euthanasia of May 28, 2002]. English translation provided by Dale Kidd and Herman Nys <www.ethical-perspectives.be/viewpic.php?TABLE=EP&ID=59> [Belgian Act]. See below, 3.3.
33 Art 3 par 2.1.
34 Art 3 par 2.2.
35 Art 3 par 2.3.

suffering at the end of life,36 with agreement from the parents,37 and the second physician who is to be consulted must be a child or adolescent psychiatrist or psychologist.38

The law also provides a special procedure for patients who sign an advance directive for a request for euthanasia when they become “irreversibly unconscious.”39 Advance directives are only valid for patients in situations of irreversible unconsciousness; not when a patient’s capacity is diminished, such as with dementia patients. There are some extra procedural requirements related to the presence of witnesses, and an important time limit is put on the validity of the advance directive: the written request cannot be more than 5 years old.40 These additional requirements reflect the problematic and complicated nature of advance directives, especially in the end-of-life context.

An important component of the euthanasia law is the reporting obligation. In the Belgian system, the key review body is the Federal Control and Evaluation Commission [FCEC]. It has a specific role with respect to the review of each euthanasia case, and an overall reporting obligation about euthanasia practices in the country. The FCEC is an interdisciplinary body with 16 members (8 physicians, 4 lawyers, 4 from ‘groups dealing with incurable ill patients’). The FCEC reviews a physician’s report on the euthanasia, which contains anonymous general patient information and other specific aspects of the euthanasia request (nature of the illness, advance directive, procedures followed, and so on), to determine if the general requirements have been met. Only if a 2/3rd majority decides that the provisions of the euthanasia legislation have not been respected can the case be forwarded to the public prosecutor, who reviews the file and decides whether the case is to move forward for prosecution.

36 Art 3 par 1: “le patient mineur doté de la capacité de discernement se trouve dans une situation médicale sans issue de souffrance physique constante et insupportable qui ne peut être apaisée et qui entraîne le décès à brève échéance, et qui résulte d’une affection accidentelle ou pathologique grave et incurable.”
37 Art 3 par 4.
38 Art 3 par 2.7.

39 Art 4 par 1. The law stipulates it somewhat differently and identifies three necessary conditions: 1) A serious and incurable illness caused by accident or disease; 2) The patient has to be “without consciousness”; and 3) This situation has to be irreversible according to current scientific knowledge.

40 Some have suggested that this time limit may push people to request for euthanasia earlier, for example when they are declining. We are not aware of any specific study that provides further evidence of this claim.

3. CONCERNS RAISED IN THE CONTEXT OF THE BELGIAN SYSTEM

3.1 Pressure to Extend the Legislative Framework

Several initiatives in Belgium have clearly aimed at expanding the practice in new areas not contemplated in the original legislation. Originally, children were explicitly excluded from the ambit of the law because “it was deemed so controversial that including it would have threatened approval of the Euthanasia Bill.”41 But in 2014, and following intense debate in the legislature, euthanasia was made available to mature minors, i.e. those below 18 years of age who are deemed capable of understanding and appreciating the consequences of their request for euthanasia.42 However, the proposal remained so controversial that to ensure a majority of votes in Parliament, an additional requirement was added at the last minute that parents are required to consent as well. Children were also only given access to euthanasia for physical suffering, recognition by the legislator that mental health issues raise unique concerns.

Another area where there is currently pressure to change the legislation is in the area of advance directives and dementia. The Belgian legislation allows the use of advance directives for euthanasia requests, but the directives only remain valid for 5 years after they have been drafted, and they only apply to situations where a patient has become irreversibly unconscious. Shortly after the legislation was adopted,43 it was argued that the time limit forced people who started to suffer from dementia to ask for euthanasia earlier than they wanted. There is growing pressure, as Raphael Cohen-Almagor describes, to allow euthanasia in dementia patients, even beyond the 5-year limitation period. He also discusses evidence that euthanasia is currently being performed in these circumstances, even though the legislation does not allow it.44 Euthanasia requests must be motivated by a person’s subjective experience of intolerable suffering, yet predicting future suffering is unreliable – people routinely mispredict how much they will subjectively suffer as a result of future medical events. The triggering condition for euthanasia by advance directive in Belgium, irreversible unconsciousness, is one that can at

41 John Griffiths, Heleen Weyers and Maurice Adams Euthanasia and Law in Europe (Hart Publishing, Portland, 2008) at 328.

42 For a critical review, see Andrew Siegel, Dominic Sisti and Arthur Caplan “Pediatric Euthanasia in Belgium: Disturbing Developments” (2014) 311(19) JAMA 1963.

43 In particular, following the euthanasia of Flemish author Hugo Claus, who started to suffer from dementia, arguments were made to allow euthanasia in dementia patients.

44 Raphael Cohen-Almagor “First Do No Harm: Euthanasia of Patients with Dementia in Belgium” (2016) 41(1) The J of Medicine & Philosophy 74 at 77.

least be objectively determined by physicians.45 The proposed expansion of the validity of advance directives to situations of mental incapacity where the patient is still conscious, would require some other decision-maker to assess the patient’s subjective experience of suffering. Empowering others to decide whether a person with cognitive impairments is suffering enough to legally trigger MHD, can make incompetent patients vulnerable to abuse and error.

In his affidavit in the Carter case, Professor Montero also mentioned some other legislative initiatives that aimed at expanding euthanasia to disabled newborns and to incompetent people who have not expressed a prior desire to be euthanized (i.e. involuntary euthanasia).46 The argument that these developments amount to a slippery slope implies that the adoption of somewhat narrow life-ending practices inevitably lead to practices that were originally not considered appropriate by the legislators. Whether we qualify it as a slippery slope or not, what is interesting is that in Belgium, originally some life-ending actions were specifically left out of the legislative proposals in order to make adoption of the proposals more palatable. In other words: those pushing for legalization realized that there was a lack of widespread support for euthanasia in more controversial areas, such as with euthanasia for minors. But once a “palatable” form of MHD finds political support, it can create a momentum towards the inclusion of other forms of active life-ending medical decisions. A healthy debate should include considerations about the desirability of social and legal changes that may shift our overall approach to end-of-life care in the long run.47

3.2 Empirical Increase in Euthanasia Practices

A discussion of the empirical slippery slope is more complex. It generally involves a detailed discussion of data and the numerous empirical studies both prior and post-legalization of the practice in its various components. A first point that has been made is that there is clearly a significant increase in reported euthanasia cases. In 2004, 2 years after the introduction of the law, there were 347 reported cases of euthanasia. The numbers have increased to 495 in 2007, 822 in 2009, 1,133 in 2011, 1,816 in 2013, and 2,021 in 2015. There is a striking, largely

45 Penney Lewis and Isra Black “Adherence to the Request Criterion in Jurisdictions Where Assisted Dying is Lawful? Review of the Criteria and Evidence in the Netherlands, Belgium, Oregon, and Switzerland” (2013) 41(4) J of Law, Medicine & Ethics 885 at 893.

46 See Carter v Canada (Attorney General) [2015] 1 SCR 331 (Affidavit of Professor Etienne Montero) [Montero Affidavit] at [85].

47 For an interesting application of Eugene Volokh’s theory of slippery slope through law in the euthanasia context, see Mary Shariff “Assisted Death and the Slippery Slope – Finding Clarity

Amid Advocacy, Convergence, and Complexity” (2012) 19(3) Current Oncology 143.

unexplained discrepancy in reported cases between two parts of the country. The French-speaking region located in the south counts for about 40% of the country’s population, yet for only 20% of the reported cases of euthanasia. In Dutch-speaking Flanders, euthanasia constituted 3.8% of all deaths in 2007, which had increased to 6.3% of all deaths in 2013, which means that one out of every 16 patients dies with euthanasia. A recently published survey of physicians in Flanders also suggested a significant increase in the number of requests that are granted: from 56.3% in 2007 to 76.8% in 2013, which indicates a growing comfort level among physicians in granting requests and in performing euthanasia.48

But does this mean an empirical slippery slope? There are difficulties with the interpretation of the evidence provided in, for example, the Dutch and Belgian euthanasia reports. First, we do not have reliable figures about the number of cases before the introduction of the euthanasia law. Reports suggest that euthanasia was being practiced in Belgium,49 as is undoubtedly the case in most if not all jurisdictions, but it is obviously difficult to obtain reliable data and thus to draw clear conclusions about the prevalence of a hidden, criminalized practice. While it can be argued that there is now at least more transparency and reliable data about what is going on as a result of the legalization of the practice, we do not really know for sure how the reported cases relate to the unreported cases.

One of the arguments in favour of legalization is that with a legalized practice and resulting self-reporting, we will have clear data and a better understanding of what is happening in the field. Yet, one thing is clear from the reports on euthanasia practices in Belgium and the Netherlands: a legal structure with reporting obligations does not solve problems of under- and misreporting. The argument that a legalized system creates transparency and understanding must thus be qualified: it gives us more data, but hidden practices remain, and interpretation of the reported cases of compliance and non-compliance requires further refinement and interpretation. It could very well be that there is simply a shift – with previously hidden practices now regulated, and other forms of euthanasia, including involuntary euthanasia and practices that do not respect the legal procedures, actually increasing. The post-factum reporting systems of Belgium and the Netherlands do not prevent those hidden practices and do not

48 For these statistics, see Kenneth Chambaere and others “Recent Trends in Euthanasia and Other End-of-Life Practices in Belgium” (2015) 372(12) New England J of Medicine 1179. See in general also the Reports of the Federal Euthanasia Control and Evaluation Commission, <http://overlegorganen.gezondheid.belgie.be/nl/advies-en-overlegorgaan/commissies/ federale-controle-en-evaluatiecommissie-euthanasie>

49 Luc Deliens and others “End-of-Life Decisions in Medical Practice in Flanders, Belgium: A Nationwide Survey” (2000) 356(9244) The Lancet 1806.

give us more certainty about what is happening. They could in fact give a false sense of security and control over the practice.

Looking at the growing reported numbers seems to confirm that the practice has been normalized, that more patients request euthanasia, and that more requests are fulfilled. Those who have moral or policy related concerns are likely worried about this significant increase. It may suggest that people who might otherwise still have some quality of life in the context of palliative care now opt for euthanasia, that there may be growing pressure on people to end one’s life with euthanasia, and that within such a large group, there are more likely some people who were vulnerable and died prematurely.

3.3 Expansion of the Practice in Problematic Areas

A different and more pernicious slippery slope is used to describe a situation in which legislation originally designed to cover one specific set of circumstances leaves room for a more flexible interpretation that can lead to a significant expansion of the practice once adopted. The concern here is that it can be very difficult to delineate what constitutes acceptable practice, in order to ensure that other unintended practices do not gradually occur. It would be problematic not to take into consideration the risk that vague criteria may lead to practices that the legislator did not intend.

The Belgian law introduces specific criteria for obtaining euthanasia, both objective and subjective, which must be verified by a physician and submitted for consultation to a colleague. The objective components are that the situation must be ‘medically hopeless’ and result from a ‘serious or incurable disorder’ ‘caused by illness or accident.’ On the other hand, the experience of ‘physical or mental suffering’ is a subjective factor: it is the patient who determines whether the suffering is unbearable. The vague and open-ended nature of the terms ‘medically hopeless situation’ and a very subjective interpretation of the term ‘constant and unbearable physical or mental suffering’ have clearly opened the door to many instances of euthanasia which are controversial. There is growing criticism of the expansion of euthanasia in areas including more existential suffering, disabilities, and increasingly also mental health. Many of these conditions were clearly not envisaged when the law was introduced, but the vague criteria enabled expansion in these areas. This expansion can seriously affect people who are experiencing life-changing disabilities, or situations which are associated with loneliness, isolation, social stigmatization and rejection, difficulties with managing daily activities, and difficulties functioning independently.

Euthanasia has been performed in Belgium on people who expressed concern about: becoming dependent on others (e.g. deaf-mute brothers who were becoming blind);50 loneliness and decline of quality of life (e.g. elderly couples who expressed the desire to die together51 and an 85-year old woman who was ‘tired of life’ after losing her daughter);52 future dementia;53 and the absence of appropriate treatment for sexual deviation in a prison setting.54 Controversies also arose when a transgendered person was euthanized,55 and when a patient with depression was euthanized, without prior warning to her family.56

These cases do not represent the majority of MHD cases in Belgium, but they are real experiences that have resulted in arguably premature deaths of vulnerable people, traumatization of family members, created moral anguish among health care providers, and disturbed the established commitment of medicine towards those in need. This has to be weighed, indeed, against the relief that legalized euthanasia has provided to many people who preferred to have access to a more controlled death, but it seems problematic to argue that the premature killing of some people and the significant emotional and societal turmoil within a lightly

50 See Dirk Verbessem (brother of the euthanized twins) interviewed in “10 jaar LEIF: moet er nog euthanasia zijn?” (November 2013) Eric Raspoet <www.erikraspoet.be/?p=355>: “The prospect of becoming totally isolated and dependent was too much for them.”

51 “Samen Sterven: Ann en François aan de Vooravond van Hun Euthanasia” Humo (17 June 2014) <www.humo.be/humo-archief/290374/samen-sterven-anne-francois-aan-devooravond-van-huneuthanasie>.

52 This is in fact the only case so far where the FCEC decided to forward the case to the prosecutor. See Jan Lippens “De Vrouw Die Niet Zonder Dochter Wilde Leven” KNACK (18 November 2015) 68-69; Graeme Hamilton “Belgian Doctor Facing Possible Murder Charge for Euthanizing Senior Seen as Warning for Canada” The National Post (29 October 2015) <http://news.nationalpost.com/news/belgian-doctor-facing-possible-murder-chargefor-euthanizing-senior-seen-as-warning-for-canada> .

53 See the quote from Dr. Wim Distelmans, co-chair of the FCEC, about the euthanasia of well-known Flemish author Hugo Claus: “Like Hugo Claus, dozens of people are euthanized here in the early states of dementia, as a preventive measure”, quoted in Carter v Canada (Attorney General) [2015] 1 SCR 331 (Affidavit of Professor Etienne Montero) at [35].

54 See “Overplaatsing Van Den Bleeken naar Nederland zeer onzeker” De Standaard (1 June 2015) <www.standaard.be/cnt/dmf20150531_01707275>; “Belgian Serial Rapist will not be Euthanised” The Telegraph (6 January 2015) <www.telegraph.co.uk/news/worldnews/europe/ belgium/11327541/Belgian-serial-rapist-will-not-be-euthanised-as-planned.html>.

55 “Eerste Maar Niet Laatste Euthanasia bij Transgenders” De Standaard (2 October 2013). <www.standaard.be/cnt/dmf20131001_00769803>; “Ook vriendin van transgender Nathan pleegt binnenkort euthanasia” Het Laatste Nieuws (5 October 2013) <http://www.hln.be/ hln/nl/957/Binnenland/article/detail/1717203/2013/10/05/Ook-vriendin-van-transgenderNathan-pleegt-binnenkort-euthanasie.dhtml> .

56 See Rachel Aviv “The Death Treatment” (22 June 2015) The New Yorker <www.newyorker. com/magazine/2015/06/22/the-death-treatment>.

regulated regime, are acceptable prices to pay to ensure that as many people as possible have access to euthanasia. We ought to take these concerns very seriously when implementing legislation in Canada or elsewhere.

3.4 The Mental Health Context

Specific concerns have been voiced about the expansion of requests for euthanasia in the context of mental health. The proportion of euthanasia deaths involving neuropsychiatric disorders has increased in Belgium from 1.2% of cases in 2004/05, to 2.8% (or 58 cases) in 2010/11, to 3.7% (or 67 cases) in 2013/14.57 There are also other indications that the number of people with mental illness expressing an interest in euthanasia is significantly increasing in Belgium.58

A 2015 study published in BMJ Open documents the practice of euthanasia of people with mental health issues in Belgium.59 The study involved 100 patients who had requested euthanasia and were assessed in the clinic of one consulting psychiatrist between 2007 and 2011. Patients suffered from a variety of disorders including mood, personality, post-traumatic stress, anxiety and eating disorders, schizophrenia, addiction, autism, and complicated grief, many with comorbidities.60 They were all deemed competent, but no information was available about how this was determined in the complex population. The authors also deemed that “[i]n all patients, the suffering was chronic, constant and unbearable, without prospect of improvement due to treatment resistance.”61 Yet, the outcome of the study (37 patients euthanized; 38 withdrawals of requests, 11 postponing

57 For these statistics, see the Reports of the Federal Euthanasia Control and Evaluation Commission, which are posted by LevensEinde InformatieForum <www.leif.be/professioneel/ professionelegids/139-rapportenevaluatiecommissieeuthanasie.html>.

58 See e.g. Lieve Thienpont Libera Me: Over Euthanasie en Psychisch Lijden [About Euthanasia and Psychological Suffering] (Witsand Uitgevers, sl, 2015) at 204. Dr. Thienpont, a psychiatrist who is arguably the most active practitioner of euthanasia in psychiatric patients in Belgium, mentions that in the first three years following the 2011 establishment of a new end-of-life consultancy service which actively supports euthanasia, about 50% of the 900 consultations involved patients with primarily psychiatric problems.

59 Lieve Thienpont and others “Euthanasia Requests, Procedures and Outcomes for 100 Belgian patients suffering from Psychiatric Disorders: A Retrospective, Descriptive Study” (2015) 5(7) BMJ Open 1 <http://bmjopen.bmj.com/content/5/7/e007454.full> .

60 Lieve Thienpont and Monica Verhofstadt “A Commentary on ‘Euthanasia for Psychiatric Patients: Ethical and Legal Concerns about the Belgian Practice’ from Claes et al.” (2016) 5:7 BMJ Open. <http://bmjopen.bmj.com/content/5/7/e007454.abstract/reply#bmjopen_ el_9360> .

61 In 48 cases the request was approved. While 37 patients were euthanized, 11 postponed their request and were still alive 1 year later. Of the 100 patients, 38 also withdrew their request. In total: 57 people were still alive one year later. Thienpont and others, above n 59.

of euthanasia after request granted; 5 independent suicides) raises serious doubt about the original determination of being ‘treatment resistant,’ the absence of possible recovery, and the competency of people with serious mental health conditions.

Following this publication, a group of 65 prominent Belgian psychiatrists, psychologists, health care professionals, and ethicists severely criticized the publication in an open letter in the bulletin for physicians and in the leading newspapers, questioning various components of the Euthanasia Law, including the competency assessment, the high number of approved cases, the treatment resistant nature of the conditions, and the fact that the study showed how one psychiatrist can be primarily responsible for a very substantial percentage of euthanasia cases of mental health patients in Belgium.62 They wrote that psychiatric conditions ought to be removed from the Euthanasia Law as a basis for euthanasia, while others responded in support of the current practice.63

Problems with psychiatric euthanasia cases are similar in the Netherlands, where there is more publicly available information. Psychiatrist-bioethicist Scott Kim and colleagues have been studying the individual case summaries of persons who have received euthanasia for psychiatric disorders in the Netherlands.64 They have identified several problems that are not reflected in the large-scale surveys of self-reporting physicians and in official reports. For instance, even though it is often

62 Stephen Claes and others “Euthanasia for Psychiatric Patients: Ethical and Legal Concerns about the Belgian Situation” (2015) BMJ Open <http://bmjopen.bmj.com/content/5/7/ e007454. abstract/reply#bmjopen_el_9360> . The authors suggest that the psychiatrist involved in the study as first author is certainly responsible for more than 35% and probably close to 50% of all euthanasia cases for psychiatric diseases in Belgium in the period of the study. Yet, if one excludes cases of Alzheimer from the general reported category of ‘neuropsychiatric disorders,’ the percentage could be even higher.

63 Ariane Bazan and others “Euthanasie pour souffrance psychique: un cadre legal discutable et des dommages societaux” Le Sour en Ligne (9 September 2015) <www.lesoir.be/985006/article/ debats/2015-09-09/l-euthanasie-pour-souffrance-psychique-un-cadre-legal-discutable-et-desdommages>. With a response (signed by multiple others) Johan Braeckman, An Ravellingien and Maarten Boudry “Banaliseer psychisch lijden niet” [‘Don’t trivialize psychological suffering’] De Morgen (11 December 2015) <www.demorgen.be/opinie/banaliseer-psychischlijden-niet-bdb8ed05/> (Lemmens’ translation available at <http://wp.me/p71HQ4-S> ); and a reply to the response by Ariane Bazan and others, “Psychisch lijden is nooit banal” [psychological suffering is never trivial], De Morgen (14 December 2015) <www.demorgen. be/opinie/psychisch-lijden-is-nooit-banaal-b8e8699f/1CfTcY/> (Lemmens’ translation available at <http://wp.me/p71HQ4-1e> ).

64 Scott Kim, Raymond De Vries and John Peteet “Euthanasia and Assisted Suicide of Patients with Psychiatric Disorders in the Netherlands 2011 to 2014” (2016) 73(4) JAMA Psychiatry 362-368. [Kim]

presented as if euthanasia is only practiced in extreme cases of psychiatric suffering such as “treatment-resistant depression,”65 Kim et al. find that while depressive disorders were the primary psychiatric issue in 55% of these cases, euthanasia is also provided to people with psychosis, post-traumatic, somatoform, neurocognitive, and eating disorders, as well as prolonged grief and autism.66 The majority of cases he studied involve socially isolated, lonely people, often with personality disorders.67 Another problem he locates in these psychiatric euthanasia cases is the frequent disagreement among physicians about whether the regulatory criteria for euthanasia have been met. There were disagreements among the physicians in 24% of the cases, generally having to do with whether the criteria of competence and futility had been satisfied; nonetheless, the euthanasia proceeded with these disagreements unresolved for most patients’ cases.68 Kim et al. also identified problems with competency assessment in these cases; they are psychiatrically very complex, but in 11% of the cases, there was no independent psychiatrist involved in the patient’s evaluation.69 In most cases, the physician was a general practitioner, with no particular expertise in competency. A final point of interest in the Kim study is the ratio of women to men: 2.3 to 1,70 which is consistent with the rate of suicide attempts among the general population. Kim et al note that it is possible that the availability of euthanasia renders the desire to die in psychiatric patients more effective, an interpretation which is consistent with the fact that most patients in the study had previously attempted suicide.

Concerns about the practice of MHD in the context of mental health reveal the overall problematic nature of a regulatory system that relies on competency assessment and informed consent procedures by individual physicians. Assessing competency in medical decision-making is already notoriously difficult.71 Physicians often do not have a good grasp of the concept, and often have limited appreciation of the inherent difficulties in competency assessment. Furthermore,

65 Paul Appelbaum discusses this in his response to the article in “Physician-Assisted Death for Patients with Mental Disorders – Reasons for Concern” (2016) 73(4) JAMA Psychiatry 325 326.
66 Kim, above n 64, at E3.
67 At E1.
68 At E4.
69 At E4.
70 At E5.

71 For a general discussion of the complex nature of and the challenges in competency assessment, see Scott Kim Evaluation of Capacity to Consent to Treatment and Research (Oxford University Press, New York, 2010). For a discussion of the challenge of relying on competency assessment in the context of PAD, see Louis Charland, Trudo Lemmens and Kyoko Wada “Decision-Making Capacity to Consent to Medical Assistance in Dying for Persons with Mental Health Disorders” (2016) Journal of Ethics in Mental Health (forthcoming)

the beliefs and value-systems of those assessing competency influence whether they perceive a patient to be competent in making the request. Physicians who are firmly committed to MHD are more likely to judge patients competent to opt for MHD, even when they suffer from depression and other mental health conditions. This has already been documented in the MHD context with a study of competency assessment in Oregon.72 It is precisely in the context of end-of-life, and when patients suffer from a mental health condition that can be accompanied by a desire to die, that competency assessment is likely to vary significantly depending on the assessor’s commitment to MHD. As Annabel Price points out: “It is in the grey areas that capacity is the most difficult to determine, and these grey areas are where clinicians’ individual values are most likely to affect the process.”73

Whether there is no hope for improvement and thus whether a condition is untreatable or ‘irremediable’, is particularly hard to assess in the mental health context. The concept of ‘treatment-resistant depression,’ for example, is in and of itself highly contested.74 People do suffer tremendously and often chronically from depression. Yet, studies focusing on treatment-resistant depression indicate that many patients, in one study even 60.2%, fully recover.75 While the evidence of the success rate varies, it is very difficult, if not impossible, to predict who will certainly not recover.76 Mental health treatment often takes time, in particular because finding the correct diagnosis is often hard, and the right treatment even harder. The availability of good social support services, easy access to good quality mental health care, and so on, are determinant factors in recovery and improvement. Yet in many countries, including Belgium and Canada, good quality mental health care services are in short supply.

72 Linda Ganzini and others “Evaluation of Competence to Consent to Assisted Suicide: Views of Forensic Psychiatrists” (2000) 157 Am J Psychiatry 595. Cited in Annabel Price “Mental Capacity as Safeguard in Assisted Dying: Clarity is Needed” (2015) 351 BMJ 1.
73 At 1.

74 See discussion in Franklin Miller “Treatment-Resistant Depression and Physician-Assisted Death” (2015) 41(11) J of Medical Ethics 885.

75 See Abebaw Fekadu and others “Prediction of Longer-Term Outcome of Treatment-Resistant Depression in Tertiary Care” (2012) 201 Brit J Psychiatry 369. Other studies show lower rates: David Dunner and others “Prospective, Long-Term, Multicentre Study of the Naturalistic Outcome of Patients with Treatment-Resistant Depression” (2006) 67(5) J Clinical Psychiatry 688; Francis Vergunst and others “Longitudinal Course of Symptoms Severity and Fluctuation in Patients with Unipolar and Bipolar Depression” (2003) 207 Psychiatry Res 143.
76 Miller, above n 74.

3.5 The Limits of the Regulatory and Reporting System

Yet another concern relates to the regulatory structure around MHD. Physicians are given an extraordinary amount of power in the Belgian system. This leaves room for overly committed and flexible physicians to attract many requests for euthanasia. When a physician rules that some of the legal requirements are not met, there is nothing that prevents a patient from going to a more lenient physician. Particularly when the criteria for permitting MHD are vague, this raises serious concerns about premature deaths. Since there is no requirement that physicians have a long-standing therapeutic relationship with the patient, physicians can develop a MHD-focused practice, with significant professional interest in recruiting patients.77 Again, it seems naïve to think that in the absence of a rigorous review and active disciplinary system there will be no abuse and professional conflict-of-interest driven behaviour.

Furthermore, the specific organization of the post-factum reporting system in Belgium is problematic. This system includes those who are heavily involved in the provision of euthanasia, on a federal review board that examines the same cases, and then decides whether a case will be forwarded to the federal prosecutor. This situation creates an unacceptable conflict of interest. It is even more remarkable that one of the co-chairs of the review committee has publicly commented on controversial cases in which he was involved, and was apparently on the panel that reviewed these cases.78 This reflects an extraordinary confidence in the integrity and good judgment of all those involved in making crucial decisions in the context of active life-ending acts.

The Belgian experience also shows that post-factum reporting is limited even with respect to how it promotes transparency and a clear understanding of what is happening. Underreporting and errors in reporting continue in Belgium, with one 2010-study estimating that only one in two cases of euthanasia are reported.79

77 See for example Kim, above n 64, at E3 who in his research on mental illness MHD cases, found that 14 (27%) of the patients received the procedure from physicians who were new to the patient, 14 of whom were physicians from the End-of-Life Clinic, a mobile euthanasia clinic.

78 See the comments regarding euthanasia for dementia patients by Dr. Wim Distelmans, above n 53.

79 Tinne Smets and others “Reporting of Euthanasia in Medical Practice in Flanders: Cross Sectional Analysis of Reported and Unreported Cases” (2010) 341(7777) BMJ 819 <www. bmj.com/content/341/bmj.c5174>. The authors conclude: “Countries debating legalization of euthanasia should simultaneously consider developing a policy facilitating the due care and reporting obligations of physicians.” Underreporting likely continues. According to Statistics Belgium, there were 61,621 deaths in Flanders in 2013. The study by Chambaere and others,

Studies also suggest that physicians continue to practice euthansia without consent and these instances are obviously not officially reported.80 Thus: hidden practices may have become visible as a result of the de-criminalization coupled with reporting, but other practices remain hidden. What is hidden may simply have shifted. The reporting system may create, in fact, a false sense of control over the practice, and lead to an overly bureaucratic assessment of cases on the basis of limited practical information, with few incentives to intervene after the fact.

Therefore, the Kim et al. study of individual case summaries in the Netherlands is again revealing.81 Its findings of problems related to competency, expansion in problematic areas, and serious disagreements among physicians, are not reflected in the data produced by the official review agencies and in large-scale anonymous surveys of physicians. In Belgium, there have been reports that physicians are not respecting the reporting requirements.82 Yet, the FCEC has forwarded only one file to the public prosecutor, while more than 11,000 patients had their life terminated. Considering the often-public confessions of physicians that they have not respected the requirements, it would be surprising if this was truly the only case of violation of the rules that merits scrutiny by a public prosecutor.

above n 48, suggests that 4.6% of deaths involved euthanasia. That amounts to 2,834 cases. Yet, the Federal Euthanasia Control and Evaluation Commission received only 1,454 reports of cases in 2013. See Federale Controle en Evaluatie Commisse Euthanasie, Zesde Verslag aan de Wetgevende Kamers (2012-2013) (19 August 2014) <http://www.dekamer.be/flwb/ pdf/54/0135/54K0135001.pdf> .

80 Kenneth Chambaere and others “Characteristics of Belgian ‘Life-Ending Acts Without Explicit Request’: A Large-Scale Death Certificate Survey Revisited” (2014) 2(4) CMAJ Open E262. See also the comments on the study, the reply by the authors, and further correspondence <http://www.cmaj.ca/content/186/18/1368.full/reply%23CMAJ_el_726624/reply#cmaj_ el_728013> . See the statement by Dr. Wim Distelmans, co-chair of the FCEC: “There is always still a dark number: physicians who practice euthanasia but do not register, because of which we do not have a view on the real number,” [Lemmens’ translation] De Standaard (27 January 2016) <http://www.standaard.be/cnt/dmf20160127_02092952> . On the concerns of the prevalence of life-ending actions without explicit request in Belgium, see in general the discussion by Cohen-Almagor, above n 44.
81 Kim, above n 64.

82 See above n 44 for Raphael Cohen Almagor’s study indicating the low report rate. For a public statement, see for example an interview in De Standaard with Dr. Mark Cosyns, a palliative care specialist who has performed many euthanasia procedures. When asked: “Dr. Cosyns, you are still not reporting euthanasia to the Commission?” his answer is: “No, not when they are our own patients. I do everything on the basis of the Act on Patient’s Rights [note of translator: another piece of legislation]. We also don’t have to justify each time we do an operation why this doesn’t constitute assault.” [Lemmens’ translation] in Veerle Beel and Lieven Sioen “In de VS zat ik al lang achter de tralies. En jij samen met mij” [In de VS I’d already be in prison a long time ago. And you with me] De Standaard (21 December 2013) <http://www.standaard.be/cnt/dmf20131219_00896009> .

3.6 Normalization of the Practice in Society

Another issue that arises is the normalization of MHD as a mode of dying in Belgium. One can argue that this is in and of itself not problematic and reflects the fulfillment of a popular need. Yet, it clearly shows a shift away from MHD as an exceptional procedure to deal with unbearable suffering, to becoming a procedure aimed at producing death more swiftly, and in more controlled circumstances. When combined with the growing demands for MHD in cases of more existential suffering, it does raise questions about how societal and structural components (ease of access to appropriate care, the costs associated with elderly care, palliative care, mental health services) will contribute to transforming MHD into a normalized form of dying.83 In light of the reality of limited funding for health care and social support services, particularly in the area of mental health, an easy availability of MHD will surely affect the types of end-of-life choices that people will deem reasonable, and will surely affect governmental decision-making in terms of resource allocation. Once implemented and more widely practiced, MHD can clearly save costs. Governments’ incentives to invest more aggressively in appropriate elderly care, long-term and complex mental health care services, disability support, and so on, can be affected.

It is important to realize that once active life-ending decisions become part of medical practice, it can lead to a normalization even of situations that go beyond those where MHD was seen to be a compassionate response (i.e. significant physical suffering at the end of life). This normalization could result in more physicians feeling comfortable about practicing it even outside of the legal framework. Several of the physicians who ardently support euthanasia and who are involved in it, have made strong public statements about the need to widen the practice.84 Some have even publicly stated their rejection of some of the most basic regulatory requirements in the context of euthanasia, such as the reporting of cases or the imposition of a consultation with a second physician.85 It reflects a

83 The normalization of MHD in society may also potentially have the effect of normalizing suicide more generally. For instance, David Albert Jones and David Patton in “How Does Legalization of Physician-Assisted Suicide Affect Rates of Suicide?” (2015) 108(10) Southern Med J 599, find that legalizing PAS in certain states has been associated with an increased rate of total suicides relative to other states and no decrease in non-assisted suicides.

84 See e.g. in general Thienpont, above n 59. See also Graeme Hamilton “Death by Doctor: Controversial Physician Has Made His Name Delivering Euthanasia When No One Else Will” National Post (22 November 2013) <http://news.nationalpost.com/news/canada/deathby-doctor-controversial-physician-has-made-his-name-delivering-euthanasia-when-no-oneelse-will> .

85 See the discussion of failure to consult a second or third physician in Cohen-Almagor, above n 44.

comfort level in Belgium towards the practice of euthanasia outside the contours of an already quite open-ended regulatory regime.

CONCLUSION: LESSONS FROM BELGIUM FOR CANADA

The Belgian system provides access to MHD on the basis of vague and flexible criteria, which gives individual physicians an extraordinary liberty to determine who has access to MHD and in what situations. It has de facto led to an open-ended access regime that has significantly expanded, including with respect to the types of situations in which MHD is provided. MHD has expanded in problematic areas, such as in the context of mental health. The Belgian experience also shows that some individual physicians have become particularly active in providing access to MHD in controversial areas, with no regulatory intervention other than limited post-factum review of reported cases, where only limited self-reported information is provided.

The problematic components of the Belgian system are important to recognize in the current debate in Canada and potentially in other countries that are contemplating legalization of MHD. They are informative of the types of problems we could face under legislation that could be based on the recommendations by the PTEAG and the Joint Committee, and to a much lesser degree under the Quebec legislation. The recommendations by the PTEAG and the Joint Committee do not provide what the Supreme Court called “a very strict regulatory regime”; one which does not leave too much room for discretion, and which protects the vulnerable. Rather than flexible and open-ended criteria for MHD, Parliament ought to legislate a very strict regime that narrows the conditions under which euthanasia can be requested. A narrow regulatory regime that adequately protects the vulnerable would involve both substantive (threshold) and procedural protections. It could be developed along the lines of the Vulnerable Person Standard, an approach which has been endorsed by a large and growing coalition of health and disability advocacy groups, professional organizations, health care institutions, and individuals with a wide variety of ideological and religious affiliations.86

Substantively, access to MHD could be limited to individuals who are 1) Legally competent; 2) Experiencing enduring and intolerable physical suffering that cannot be reasonably alleviated; 3) Resulting from a serious and incurable disorder caused by illness or accident; 4) Who is at the end of life. This relatively narrow threshold would ensure access to MHD for those paradigmatic situations, such as that of Ms. Taylor in the Carter case, for which legalization of MHD is rightfully

86 The Vulnerable Persons Standard (2016) <www.vps-npv.ca>.

considered to be a compassionate and medically justifiable response to suffering. On the other hand, it would prevent certain vulnerable individuals from obtaining easy access to MHD – people who the Supreme Court seems to have excluded from those whom it ruled should have access to MHD – such as those who experience mood, personality and anxiety disorders, schizophrenia, addiction, and autism, to name just a few of the controversial groups of individuals who have been granted access to MHD in Belgium and the Netherlands. Such a limitation would not close the door to people simply by virtue of the fact that they experience psychological suffering, but on its own, without physical suffering, psychological symptoms would not meet this proposed threshold for access to MHD. Rather than open the door to MHD for these vulnerable groups, Parliament must actively work towards developing more effective and comprehensive mental health treatment plans throughout Canada.

Procedurally, a review system should be in effect at both the prior and post-MHD stages. A MHD request ought to be subjected to an expedited prior review and authorization by a judge or independent body with expertise in the fields of health care, ethics, and law. David Baker and Gilbert Sharpe have already developed a detailed proposal for an independent review structure that would build on the existing federal review structure in the context of mental health for those not held criminally responsible because of mental illness.87 This model was presented to the Joint Parliamentary Committee, which decided to ignore it and to recommend instead a system with the only additional safeguard to have the competency and clinical assessment of one physician being confirmed by another. Considering the risk of error and the potential for abuse with devastating consequences, it is crucial that a more independent assessment is undertaken by others who are not involved with the provision of MHD, and undertaken prior to the procedure itself. Especially in light of the frequent disagreements between physicians as to whether the criteria for MHD have been met, as shown in the Kim et al. study, an arms-length prior-review process is crucial to ensure that errors are not made before a patient has actually died and to promote some level of coherence in the decision making process. Alternately, since the main reason generally cited for having only a post-factum evaluation is the urgency of a patient’s end-of-life situation, a prior-review system ought at the very least to be implemented if the legislation would allow for MHD in situations where the patient is not as closely

87 David Baker and Gilbert Sharpe “Draft Federal Legislation to Amend the Criminal Code to be Consistent with Carter v Carter (Attorney General) 2015 SCC 5 (22 January 2016) <www.bakerlaw.ca/wp-content/uploads/16-01-22-An-Act-to-Amend-the-Criminal-CodePhysician-Assisted-Suicide-_FINAL.pdf>.

to the end-of-life.88 Urgency is generally not a factor to consider if a patient is not dying so there exists no valid reason not to at least implement a prior-review system for these particularly complex cases, where the risk of error deprives people even more significantly of months if not years of life.

Under the Belgian legislation, and the PTEAG and Joint Committee recommendations, physicians are given too much room to flexibly interpret value-laden and open-ended concepts, for which they can hardly be seen to have the required expertise. Allowing the provision of MHD to be completely dictated by individual patient and physician choice risks abandoning vulnerable patients at times when they need support and protection against self-harm. This is why a stricter regime with less flexibility for interpretation, and an arms-length prior review process is, in our view, necessary.

88 In a letter to the co-chairs of the Special Joint Committee on Physician-Assisted Dying (10 February 2016), Dr. Joris Vandenberghe, a Belgian psychiatrist and member of the National Bioethics Commission, who has been extensively involved in psychiatric assessments and consultations related to euthanasia in Belgium and who supports the legalization of MHD, urges Canadian Parliament to implement such a prior review and to avoid the serious problems with the Belgian regime.