The Autism Diagnosis Saved My Life by Janis Schaerlaeken

Introductory Note Trudo Lemmens

The commentary below appeared in January 2020 in one of the leading Flemish-Belgian newspapers (De Standaard) at the start of the criminal trial of 3 Belgian physicians involved in the 2010 death of 37-year Tine Nys. Her life was ended by euthanasia (the term used in Belgium and the Netherlands for what in Canada is now termed “Medical Assistance in Dying”).  Tine Nys had been diagnosed by a psychiatrist, one of the co-accused in this trial, with Asperger’s syndrome. Two months later her life was ended, on her request, by one of the physicians. Her family was deeply troubled by the approval of her euthanasia request and traumatized by the allegedly sloppy way in which the procedure was performed.

Under Belgium’s euthanasia law, people can ask a physician to terminate their life when they have an irremediable medical condition that causes unbearable suffering, which cannot be alleviated. The law requires a confirmation by a second physician and in situations of mental illness, a third evaluation by a specialist. The three physicians were involved in either providing the lethal medication or the assessment and approval of her request. Although the federal Euthanasia Review Commission concluded that all legal criteria were fulfilled in this case, a Court of Indictment (on appeal of a first rejection) found that there were sufficient grounds to launch a criminal trial, for the criminal offence of ‘poisoning’ of Tine Nys. The euthanasia law in Belgium does not contain a specific criminal penalty in case of non-compliance with the law, so the general prohibitions of the criminal law apply.

Belgium is one of only two countries (with the Netherlands) that allow and practice euthanasia for reasons of mental illness. It is only since about 2010 that the countries have seen a gradual increase in the number of euthanasia cases for mental health reasons. This also coincides with a significant increase in euthanasia procedures involving people who are not terminally ill or in the final stages of their life. More details on these developments in Belgium and the Netherlands, which reveal a normalization of the practice outside the end-of-life context, can be found here.

This commentary is of particular interest in Canada, where the government appears committed to expand by March 2020 the current Medical Assistance in Dying [MAID] law outside the context of end-of-life, in response to the Quebec trial court decision in Truchon, which the Attorneys General of Canada and Quebec failed to appeal (for a commentary on why they should have appealed, see here).

This translated commentary captures well some of the concerns and challenges that arise when “Medical Assistance in Dying” is made available in the context of mental health  or for chronic neurological conditions and disabilities. Some of those who have been arguing for broad access to MAID may suggest that the current Canadian safeguards are sufficient to protect against abuse, or may come up with some additional procedures. The commentary highlights some of the key challenges in one specific group of people, but raises broader questions around ableist presumptions about quality of life for people with disabilities, the nature and determination of unbearable suffering, and capacity assessments in this context (for several commentaries on capacity assessment in the context of MAID/euthanasia and mental health, see here under Capacity, and subsequent commentaries). We further have to ask the fundamental question whether some of the concerns raised here can be adequately addressed by technical-procedural solutions; and whether the legal promotion of the right to control the manner and timing of one’s death, particularly when outside the context of end-of-life, is not fundamentally undermining our commitment to protecting and promoting the rights and interests of those who are dealing with these challenges]

Being diagnosed with Autism saved my life

Janis Schaerlaeken, Primary Care Physician

(original article  in Dutch in De Standaard 18 January 2020  ; translation T. Lemmens)

Janis Schaerlaeken is concerned about the euthanasia trial. She knows very well how it feels to hear as adult woman that you have autism, as Tine Nys experienced. Will there be sufficient attention for context at this trial?

Tine Nys wanted peace. Unfortunately, she did not get the time to find it. I never knew Tine. But her story and pain are recognizable. As Tine, and so many women around 40, I belong to this ‘lost generation’ of autistic women. Clinicians and scientists started to realize only in the last ten years that women can also be autistic. For us, there was no timely diagnosis and therefore no proper guidance.

As a doctor, I worked for several years in psychiatry. When I look back, I realize that I also often missed diagnoses of autism among women. Those women wandered for years in psychiatric care. Usually they were incorrectly diagnosed with “borderline personality disorder”. With all its consequences, since the treatment that flows from that diagnosis is usually damaging for an autistic woman.

I am concerned about the criminal trial against the three doctors who performed euthanasia on Tine Nys. How will autism and capacity for decision-making be connected? Will adult autistic women be heard, be invited to testify about their supposedly “hopeless medical condition”? Will they be able to tell about the alternatives they found, which reveal that living with autism does not need to be hopeless?

Tine Nys had only just found out that she was autistic – a few weeks or months are too short to mourn your old life, your old self, and to reinvent yourself.

As many autistic adults say: “autism is not only an impairment, it is also a disability which can become a handicap”: you become ‘dis-abled’, also through a context, a society that surrounds you. In the case of Tine Nys, that elimination took place literally. Els Van Veen, a Dutch family physician with autism, once put it this way: “Do I suffer from my autism, or do I suffer because I cannot live up to the expectations of the world around me?” The societal context determines in part the extent to which someone experiences autism as a limitation or disability.

This trial is not in the first place about euthanasia, or about an ideological struggle. It is about the allegedly “hopeless” psychological suffering of Tine Nys. It is about her alleged capacity for decision-making: to what extent is someone with autism capable of decision-making when they are seriously overwhelmed – that was very likely the case, as a result of her recent diagnosis, a relationship breakdown, a difficult childhood, unresolved traumas, and more generally a life that was not yet adjusted to her specific sensitivity?

Perhaps you have already been extensively informed about the experience of adult, intelligent autistic women. To make sure you are, I want to share with you some of my concerns and insights.

Dramatic event

I am not in principle against euthanasia, but it should not be used as a solution for suffering that is connected to, or the direct result of, societal failures

For some years, I have been following this case through the media and I am very indignant. It troubles me deeply that a young woman of 38 years, who knew only since a few weeks that she was autistic, didn’t get the chance to integrate this challenging event in her life..

For many with autism, getting a diagnosis feels like a breakthrough; in my case, it saved my life. Finally you get the tools to learn how to regulate yourself and to influence the environment, so that you stimulation level is adapted to the specific sensitivity (sensory, emotional) that characterizes autism. The diagnosis can offer a new and hopeful perspective. But you must receive the time and space to work yourself through all the emotions of a grieving process: anger, indignation … Intense emotions can temporarily put your cognitive ability under pressure. That has an influence on your capacity. You also need understanding and respect from social workers, physician-advisors of health insurance organizations, family members, friends and partner.

A few weeks or months are too short to mourn your old life, your old me, and reinvent yourself. The environment, a potential partner, family members, must also be given the time to start relating to you in a different way. Such a process usually takes two to five years- I rely for this on the many stories I came across via online self-help groups, of women who received a late diagnosis of autism; and on my own experience.

Most autistic women are not diagnosed with ASD, or receive that diagnosis too late. They frequently also suffer from post-traumatic stress disorder (PTSD). In relations, they are more often victim of border-transgressing behaviour than non-autistic women. Admissions in psychiatry, whether voluntary or by force, are extra damaging. The PTSD diagnosis is often missed because in autism, the appearance of the disorder is different and results from other causes, such as conflicts, harassment, and loss of control.

When a woman with autism is in her mid-thirties, the chances of psychological decompensation augment: the inability to continue functioning normally and healthy, because psychological capacities are failing. Relationships and marriages are under great pressure. Difficulties with finding a job and in keeping it leads to increasing uncertainty, undermines one’s self-image further and leads to financial troubles and challenging living conditions.

To be able to live an adjusted life in which your exposure to stimuli is limited and to pay appropriate professional support, you need money. Relational and professional suffering piles up, and when this is combined with a deep feeling of powerlessness and trauma, you have a deadly cocktail.

Society Fails

It is easy to imagine how death is seen as a way out in those circumstances. People with autism have a great need for predictability- to help them control the stimuli. Moreover, they often respond to overstimulation and perceived loss of control with extreme emotions. Those emotions can feel black and white, due to their rigid thought patterns.

According to the Belgian federal euthanasia commission, five people with autism died with euthanasia in 2017 and 2015. What worries me, is that these take place in a Flemish context in which outpatient mental health care is not well developed, not accessible enough, and unaffordable for many people. The options for psychotherapy for adults with autism is limited. People who are also traumatized fall completely out of the boat, despite the real need for treatment in cases of late diagnosis. In fact, society is profoundly failing in its care for and inclusion of people with autism.

Autism is a challenge for our society. In a book I read the following wise statement of an adult man with Asperger syndrome: “Autism is being awake in a world that is still in a coma.” How does society cope with this gift? Now that I already live with my diagnosis for some years, I have come to think that a form of pain of living is indeed part of a life with autism, because we see things as they are, and that is not always very comforting. Also, people don’t always want to know what you are seeing.

Not without hope

Autism is in and of itself not a hopeless medical condition. I am convinced of that. In the well-developed international community of people with autism, there is some form of consensus that autism is not necessarily a “disorder”. The fact that autism is included in the psychiatric Diagnostic and Statistical Manual of Mental Disorders (DSM) is hotly contested. There are quite some arguments to classify autism as a neurological disorder. There are also more and more voices within the neurodiversity movement that state that autism represents a valuable genetic variant of the human species and that the many problems seen with autism are related to other disorders and result of a mismatch between the person and the context.

What people with autism have to offer is sometimes in conflict with what is expected from them, expectations that they cannot meet. Autism becomes a disability in a society that does not adapt to neurodiversity in all relevant areas such as work, living, community organization and sports clubs, education, school and professional training.

Let us not forget that suffering never occurs in a social vacuum. I am not in principle against euthanasia, in particular in situations of extreme suffering for which there are no medical, social or psychological solutions. But euthanasia should not be offered as a solution for suffering that is related to, or a consequence of, societal failings: dehumanization of care as a result of extreme fiscal austerity, the loss of social cohesion, lack of tolerance for human diversity.

Why would we not propose an alternative trajectory, from a life perspective, as Raf De Rycke, the chairman of the Brothers of Charity [note translator: BofC is one of the major providers of mental health care in Belgium], proposed on these pages (DS January 15)? The pain, the longing for death or the longing for an end to one’s suffering, loneliness, social isolation: they want to be heard. Therapies focusing on meaning and dignity- existential or spiritual guidance – in a place where you can share and be heard safely, without fear of a collocation: for me it was an essential part in my recovery.

The real expert

To what extent will the medical experts called in the course of this criminal trial be up to date with the most recent scientific and clinical knowledge about autism? Do they have knowledge of the wider existential and societal context? Do they have verifiable experience with the guidance and treatment of adult autistic women? The appearance of autism in women is different from that in men, and the treatment must also be gender-specific. I know from experience, as physician and as patient, that knowledge among most doctors and psychologists is limited, one-sided and stereotypical. Clinicians who have experience treating autistic adults and are at the same time closely following contemporary neuroscience research on autism: they are a rare breed. In Flanders, I don’t know any. I wonder if autistic adults themselves, the other true autism experts, will also receive a platform to testify about all aspects of autism.

To what extent did the defendant physicians have sound clinical knowledge about autism from a perspective that offers hope? Did they know how to communicate well with an autistic person and how to assess their capacity and mental status? That is not something obvious. Misunderstandings arise quickly and often fail to come to light immediately. Twists and turns in the conversation are often understood differently by the autistic person. Several reasons account for this: they fail to understand the (social) context, have linguistic problems or a poor theory of mind (understanding that others have different beliefs, desires, intentions and perspectives than yourself). For the people with autism, it is also difficult to express their needs: as a result of alexithymia (inability to recognize and express one’s own feelings), delays in the processing of information, fear, limitations with facial expressions and restrained gestures.

Physicians also tend to have difficulties empathizing with the inner world of the autistic person and to appreciate their specific needs: research has shown that emphatic processes between non-autistic and autistic people are disturbed, but work well within both groups. It is not inconceivable that the defendant doctors were not sufficiently trained to realize that their assessment and decisions failed to take into account the specific disability from which Tine Nys suffered – a social and communicative limitation, which made her extra vulnerable to medical errors. I can bear testimony to this: I barely escaped death when I had blood in my lungs. The physician had picked up insufficient signals that the situation was life threatening. He prescribed a tranquilizer.

I hope this piece can contribute to a warmer welcome in our society for adults with autism, based on respect and equality.

Advance Requests for MAID raise fundamental ethical, constitutional and human rights concerns

Recent Submissions to Canada’s Joint Parliamentary Committee on Medical Assistance in Dying [MAID]

Introductory Note

In the spring of 2022, a Canadian federal joint parliamentary committee of Senators and MPs was set up to review Canada’s developing MAID practice. (MAID is the term invented in Canada for the combined practice of Euthanasia and Assisted Suicide). The committee was mandated to look at four different issues, which it originally intended to have done by the end of June of 2022: 1. Review of MAID law and practice in Canada since its introduction in 2016; 2. how to organize MAID for mental illness—considering the recent explicit legislative commitment to allow it by March 2023; 3. MAID for mature minors; 4. MAID on the basis of advance requests.

Likely because it accepted the frankly impossible task to do all that in the time-span of a few months–it was originally planning to finalize all that by June 2022–, it quickly restricted submissions to a mere 1,000 words (references included). This explains why I am reproducing here two submissions. The first was my standard submission, which was sent in prior to oral testimony at Committee hearings. After my testimony, Senator Wallin appeared squeamish about my reference to the ‘surreptitious medicating’ of persons with dementia in the context of the euthanasia practice in the Netherlands, which she qualified as a ‘negative term’. She also hinted that there was no evidence for my claims but did not allow me to respond or expand on the points I raised. She also mobilized another academic expert to trivialize my suggestion that the practice arguably runs counter to the Supreme Court’s emphasis in the Carter case on ‘clear consent’. I responded to this specific claim also in a blog post on Impact Ethics. Her intervention exemplifies the hostility expert witnesses have faced, particularly from some senators and MPs, when they shared concerns about problematic components of Canada’s MAID practice, or concerns about expansion. (I briefly discuss this in a blog for the University of Toronto Faculty of Law here).

After filing a complaint to the Committee about her in my view violation of parliamentary decorum in her treatment of expert witnesses, I was invited to submit a more extensive memorandum with references to provide evidence for my claims. This is the second memorandum reproduced below.  

Why Advance Requests for MAID Raise Fundamental Ethical and Human Rights Concerns

Submission to the Joint Parliamentary Committee on Medical Assistance in Dying

(9 May 2022)

Trudo Lemmens

Professor and Scholl Chair in Health Law and Policy

University of Toronto

We already witness how lack of housing, disability support, and quality elderly care, lead Canadians who are not dying to request MAID. In this context some promote Advance Requests [AR] for MAID as a ‘solution’ to what they term a ‘loss of dignity’. Yet, we know that housing, disability support, and good quality care are possible, and allow the preservation of dignity that is inherent to all human beings, as recognized in international human rights and constitutional law.  

For some, health care providers would even need to introduce MAID when informing a patient of a devastating diagnosis, say, of early Alzheimer’s, to let them prepare an AR. This ignores the dynamics of doctor-patient relations and the pressure potentially resulting from professionals suggesting to patients that medicalized death is a solution, particularly in a context where lack of social support and good elderly care are already undermining consent. Creating a duty to put ending-of-life on the table when informing a patient of a devastating diagnosis would undermine the important role of physicians in instilling hope and reassuring patients that they will be there to care for them and to act in their best interest.

ARs for MAID further raise insurmountable ethical and human rights concerns. This is reflected in this: Belgium only allows MAID based on AR when persons are permanently unconscious, to avoid euthanizing people who still enjoy life and may resist. The Netherlands originally had difficulty with MAID based on AR, since it was considered impossible to defend this practice on the basis that persons ‘suffer unbearably’, when they were no longer able to confirm this. It now has permitted it for persons even when they appear to resist.

Neither regime involves explicit, contemporary consent, which is arguably constitutionally required. The Supreme Court explicitly restricted in Carter its ruling to the circumstances of the case, a case that involved a capable person able to express her wish, and approaching her natural death. If one combines the emphasis on the exceptional nature of active ending of life, the need for stringent safeguards, and the emphasis on ‘clear consent’, ARs for MAID appear to run counter to the Supreme Court’s parameters in Carter.

Allowing ARs for MAID reflects the idea that prior wishes of patients, who cannot fully appreciate what future illness will bring, have priority over current interests; that this can be done through procedures that give third persons clarity about patients’ experience of suffering and their real wishes; and that there are no serious implications for family members, health care providers, other disabled persons, and society at large. ARs for MAID are, in this view, a question of management.

The CCA Expert report shows that procedural solutions cannot fully address the legal and ethical concerns. Even the CCA report’s discussion of communication tools to reduce uncertainty shows that these solutions are theoretical and speculative. The CCA report discusses how advance directive regimes in standard health care practice are also confronted with problems of interpretation. Importantly, while these indeed allow abstaining from health care interventions that may save people’s lives, this can be more easily defended from the perspective of erring on the side of non-violation of a person’s bodily integrity, in situations of uncertainty about current wishes.

When we are dealing with MAID, the situation is reversed: implementing an AR for MAID involves an active intervention that most definitely intrudes upon a person’s physical integrity. In the absence of consent, such an invasion of bodily integrity is in law an assault. Abstaining from health care interventions without consent, even if it results in death, is never assault. This makes respect for ARs for MAID fundamentally different from respecting advance directives in standard medical care.

The International Convention on the Rights of Persons with Disabilities explicitly recognizes in article 12 the inherent legal capacity of persons with cognitive disabilities. This implies a duty to enable expressions of current interest.

Evidence from the Netherlands, the only jurisdiction that allows euthanasia of persons with advanced dementia who are still conscious, shows what implementing ARs for MAID requires. It inevitably involves third-party consent and evaluation of the person’s suffering. It usually involves surreptitious medicating patients to suppress resistance; and then actively ending life. Contrary to withholding treatment, it involves an active invasion of a person’s bodily integrity. Surreptitious medicating and suppressing resistance fundamentally violate ethical norms and run counter to the duty to enable an expression of current interests of cognitively disabled persons, which the International Convention requires. It moves us into involuntary ending of life.

It further confirms in law the view that life with cognitive disability involves loss of dignity. Once we agree in a legal regime that this is appropriate for persons with dementia, even if it is on the basis of prior consent, we make a collective statement about the value of the life of persons with cognitive disabilities who cannot–or no longer–consent. This violates a core foundation of human rights: the recognition of the universal and equal value of all human beings.

I urge the committee to obtain a translation of a recent article by Belgian and Dutch experts (many if not all in support of legalized euthanasia) who argue, with comprehensive arguments and up to date evidence, why “advanced directives for euthanasia… are not easy to implement in an optimized dementia care pathway.”[1] Belgium legalized euthanasia in 2002. Twenty years later, and informed by the practice in the neighbouring country, it still has not expanded its AR regime for MAID.

Our current MAID regime already goes beyond Belgian law while our social and health care support is below the OECD average. The Dutch experience reveals that ARs for MAID create insurmountable ethical and legal concerns. We need instead to invest in health care and social support that promotes the human rights of all, including those with cognitive disability.

[1] J. Versijpt, P. Crass, L. Dewitte, JJM. van Delden & C. Gastmans, “Euthanasie bij dementia middels een voorafgaande wilsverklaring: een reflectie vanuit België en Nederland” Tijdschrift voor Geneeskunde en Gezondheidszorg doi.org/10.47671/TVG.77.21.199 (forthcoming)

Submission to the Joint Parliamentary Committee on Medical Assistance in Dying: Corroborating Evidence in Response to Questions Committee Hearing Advance Requests for MAID

(4 June 2022)

Trudo Lemmens, Professor and Scholl Chair in Health Law and Policy, Faculty of Law, University of Toronto

This memorandum provides evidence and more detailed arguments to corroborate my testimony at the May 9 hearings of the Joint Parliamentary Committee on Medical Assistance in Dying. This responds to questions about the evidence in support of my key points about the practice of advance requests for MAID in Belgium and the Netherlands, and the reasonableness of the argument that legalizing advance requests for MAID would violate constitutional and human rights norms.

  1. Evidence and documentation of Dutch practice of euthanasia/MAID of persons with dementia

My testimony largely—but not exclusively—built on the Council of Canadian Academies [CCA] Expert Panel Committee Report on Advance Requests for MAID,[1] which was mentioned in my testimony, and which was commissioned by the government to provide a detailed a review of relevant evidence. The committee members have this report at their disposal. I contributed extensively to this report as an expert member of the CCA Expert Panel. The report was endorsed by 14 experts and peer-reviewed by 11 national and international experts. I also submitted to the committee a recent publication by five Belgian and Dutch experts, several of whom have explicitly supported the legalization of euthanasia, but express concerns about the Dutch practice in the context of dementia.[2] The article provides an updated review of the issues raised by the Dutch practice and recommends against introducing it in Belgium. Belgium legalized euthanasia in 2002 and has not deemed it appropriate to follow the Dutch approach. It only allows euthanasia/MAID based on advance requests in situations where patients have become permanently unconscious.

Questions were raised about my reference to ‘surreptitious medicating’ of patients with dementia and the potential use of force in the euthanasia/MAID practice in the Netherlands. This has been a component of euthanasia/MAID practice in the Netherlands for persons with advanced dementia who are still conscious. The Netherlands is the only jurisdictions that allows this practice. It is discussed in those terms in the CCA report,[3] has been reported in case reports by the Dutch Regional Review Committees,[4] and has been documented in detail in the Dutch judicial proceedings that resulted in a 2019 Hoge Raad (Dutch Supreme Court) decision known as ‘The Coffee Judgment,”[5] which gave the controversial practice a legal endorsement.

Dutch scholars have described the procedure at issue in the ‘Coffee Judgment’ as follows:

In order to avoid confusion and (apparent) resistance the physician sedated the patient before the euthanasia, mixing the sedative in the patient’s morning coffee. These steps were discussed in advance with the family. The actual euthanasia was not discussed with the patient at that time, and the patient did not know she was about to die. During the performance of the euthanasia, the patient did respond physically to the administration of the medication, by sitting up despite the sedative. The patient was restrained by her family during the further performance of the euthanasia.[6]  

This and some similar cases have been the subject of intense public debate in the Dutch medical community and society at large.[7] The practice has been critically discussed by other Dutch and international legal and ethics commentators.[8] I can provide further information to the Committee about the Dutch and Belgian experience, which I have studied and followed closely, facilitated by my mastery of Dutch and French.  

With respect to ‘surreptitious medicating’:[9] hundreds of Dutch physicians (including many geriatricians, and euthanasia [MAID]-consultants and euthanasia practitioners) signed a petition calling for a halt to the practice of euthanasia with “stiekem” [surreptitious] medicating of patients and made a promise to their patients that they will never end their life when they can no longer confirm their consent.[10] They strongly resist the practice. I translated into English an article in which psychiatrist Boudewijn Chabot, who overall supports legalized euthanasia/MAID, discusses the concerns about the expansion of it with regards to persons with dementia and mental health, and the Dutch debate about it.[11] The CCA report references Chabot’s article and other publications and reports on this debate.[12]

2. Compatibility of Advance Requests for MAID with International Human Rights Norms and the Charter.

Questions were asked about my claim that MAID on the basis of advance requests violates the Charter and that contemporaneous consent is “arguably constitutionally required if we take the emphasis on clear consent in Carter seriously”. This is connected to the point that advance requests for MAID inevitably introduce some form of third-party consent to perform a life-ending procedure, as the CCA report states,[13] and thus blurs the line between voluntary and involuntary MAID. Of course, Carter does not explicitly prohibit MAID based on advance requests, since that was not before the court. But the Court went out of its way to emphasize that “clear consent” was a vital component of allowing some form of MAID in the restricted circumstances where it needed to be allowed.

First, it explicitly restricted the scope of its decision to “the factual circumstances in this case”–a person with ALS able to confirm consent–and emphasized it made “no pronouncement on other situations where [MAID] may be sought.”[14] The Court confirmed the validity of a criminal law prohibition on ending another person’s life. Secondly, it stated that “euthanasia for minors or persons with psychiatric disorders” did “not fall within the parameters” of its ruling,[15] which at least means situations of cognitive disability and cognitive decline were not considered in Carter to be a necessary part of what the Supreme Court considered a required exemption to the prohibition to end another person’s life.

Thirdly, the Court said that some problematic cases 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.” [16] It hereby explicitly confirmed that a Canadian legislative regime could avoid this and be more restrictive. Interestingly, when it comes to advance requests, Belgium only allows them for euthanasia/MAID when a person has become permanently unconscious, to avoid the type of ambiguity that surrounds the Dutch practice. Canada will move further beyond that, and already allows it in broader circumstances than Belgium.

Fourthly, the court acknowledged that safeguards, beyond those of normal medical practice, were key, thus undermining the argument that advance requests for MAID are permissible because they resemble advance directives in medical practice. It should be noted, as the CCA report does, that there is a fundamental difference between advance requests for MAID and advance directives in end-of-life care: “Practitioner-administered MAID fundamentally involves invading a person’s bodily integrity. That is, an AR for MAID is a request for an intervention that specifically ends the life of another person”.[17] This contrasts with an advance directive related to withholding life-saving treatment, which involves abstaining from bodily invasion. In situations of uncertainty about whether a person may still be committed to a prior decision, it is more reasonable to abstain from invading a person’s body than to invade; invasion without proper consent is always an assault, unlike abstention.

Finally, the Court emphasized that MAID had to be available for a “competent adult” who ‘clearly consents’, and approvingly cited Justice Smith’s statement that it would only be ethical when causing death is “clearly consistent with the patient’s wishes and best interests”.  The qualifiers ‘clearly’ and ‘competent’ are there for a reason.

Dutch legal scholars have argued that their practice violates the right to life under the European Convention on Human Rights,[18] precisely because of the inherent ambiguity that surrounds the practice, which has been revealed also by detailed media reports of some cases in the Netherlands. [19] The inherent ambiguity is also documented in the CCA report, which discusses how this is the reason why it is already difficult to implement and to give legal effect to advance directives in normal medical practice.[20]

This is also why the practice violates in my opinion the International Convention on the Rights of Persons with Disabilities, in particular article 12 (equal recognition before the law), article 5 (equal protection), and article 10 (right to life). Comment 1 of the United Nations Committee of the Rights of Persons with Disabilities warns that “persons with cognitive or psychosocial disabilities have been, and still are, disproportionately affected by substitute decision-making regimes and denial of legal capacity” and that a disability, including a cognitive disability, should never be a “grounds for denying legal capacity.”[21] Although the UNCRPD recognizes the value of advance planning, it strongly emphasizes an ongoing obligation to involve a person with cognitive disability in decision making, and to respect the will of the person. Surreptitious medicating and ending life without directly stimulating the person’s involvement in a most crucial decision, even if it is through non-verbal means, and this at the very moment that the decision to end their life is being made, clearly runs counter to that requirement. The practice of MAID in persons with advanced dementia involves suppressing, not encouraging participation in decision-making. The committee also warns about the danger of undue influence on decision-making and the danger of abuse when persons have cognitive disabilities.

Some may argue that our Canadian law already prevents the disturbing practice of providing MAID to someone who resists. Following Bill C-7, our criminal code stipulates that a health care provider can only provide a substance to cause death if “the person does not demonstrate, by words, sounds or gestures, refusal to have the substance administered or resistance to its administration” (S. 241.2 (3.2) (c)).[22] This is likely meant to address the concern about potential resistance by persons who can no longer consent. But this alleged safeguard is undermined by S. 241.2 (3.‍3): “For greater certainty, involuntary words, sounds or gestures made in response to contact do not constitute a demonstration of refusal or resistance for the purposes of paragraph (3.‍2)‍(c).” This removes the limited protection offered by S.241.2 (3.2)(c).

A person who is performing a life-ending procedure of a now incapacitated person can always easily conclude that the words, sounds, or gestures were involuntary, since a finding of incapacity overlaps with a finding of lack of voluntariness. The law thus disturbingly allows health care providers to end the life of patients who physically and in sound or words resist and are deemed no longer capable of decision-making, by facilitating a conclusion that the person’s resistance to the procedure to end her life is involuntary. Health care providers who already came to the conclusion that the person is now suffering unbearable, based on a prior statement, will more likely be biased towards interpreting these reactions as involuntary. If the recommendation of some is followed, this will be expanded in very broad circumstances when a person indicates, even prior to a diagnosis, that they would want to have MAID, for example when not recognizing family members, or in other inherently nebulous circumstances.

Note that the law remains silent about surreptitious medicating of patients. This problematic practice has been documented and continues to occur in medical practice, but the consequences are obviously of an extreme seriousness when it is used to avoid any form of expression of disagreement about the ending of the person’s life.[23]

For all these reasons, I urge the committee to recommend against the expansion of advance requests for MAID, and to urge a serious reconsideration of how the more limited form of advance request already introduced through Bill C7 violates constitutional and international human rights norms.

[1] The Expert Panel Working Group on Advance Requests for MAID, The State of Knowledge on Advance Requests for Medical Assistance in Dying. (Ottawa (ON): Council of Canadian Academies, 2018).

[2] J. Versijpt et al., “Euthanasie bij dementia middels een voorafgaande wilsverklaring: een reflectie vanuit België en Nederland” (2022) 4 Tijdschrift voor Geneeskunde en Gezondheidszorg 1 doi.org/10.47671/TVG.77.21.199  [Euthanasia in situations of dementia based on an advance declaration: a reflection from Belgium and the Netherlands]

[3] The Expert Panel Working Group on Advance Requests for MAID, supra note 1 at p. 74, where it refers to “the surreptitious administration of a sedative in a decisionally incapacitated patient with severe dementia” (my emphasis).

[4] The Regional Review Commissions publish a selection of the due care evaluations they conduct, a practice which contrasts sharply in terms of transparency (and level of review) with what we currently have in place in Canada. For a report of a case involving ‘premedicatie’, as the Commissions term it, see https://www.euthanasiecommissie.nl/uitspraken/publicaties/oordelen/2020/2020-101-e.v/oordeel-2020-118

[5] HR ECLI:NL:PHR:2019: 1338 (17-12-2019) online: https://linkeddata.overheid.nl/front/portal/document-viewer?ext-id=ECLI:NL:PHR:2019:1338

[6] Eva Constance Alida Asscher & Suzanne van de Vathorst, “First prosecution of a Dutch doctor since the Euthanasia Act of 2002: what does the verdict mean?” (2020) 46:2 J Med Ethics 71–75. https://jme.bmj.com/content/46/2/71

[7] “Artsen worstelen met euthanasie bij gevorderde dementie”, online: <https://www.medischcontact.nl/nieuws/laatste-nieuws/artikel/artsen-worstelen-met-euthanasie-bij-gevorderde-dementie.htm&gt;. See also Jaap Schuurmans et al, “Euthanasia requests in dementia cases; what are experiences and needs of Dutch physicians? A qualitative interview study” (2019) 20(1) BMC Med Ethics 66. 

[8] See e.g. David G. Miller et al., “Advance euthanasia directives: a controversial case and its ethical implications” (2019) 45(2) 84-89; Britta van Beers, “Staat van verwarring: Over euthanasie, vergevorderde dementia en het recht op leven” [State of confusion: About euthanasia, advanced dementia, and the right to life] Ars Aequi (February 2020) 141-149. Online: https://arsaequi.nl/product/staat-van-verwarring/

[9] The term “surreptitious” is a translation of the term ‘stiekem’ used by Dutch practitioners (see infra note 7), and is used in the CCA report and in English publications discussing the practice. See e.g. the peer-reviewed discussion of cases in David G. Miller & Scott Y. H. Kim, “Euthanasia and physician-assisted suicide not meeting due care criteria in the Netherlands: a qualitative review of review committee judgements” (2017) 7:10 BMJ Open e017628.“In case 2016-85, in which the patient was surreptitiously given sedatives and later held down in order to administer more drugs, the physician justified her actions, saying that she would have performed EAS ‘even if the patient had said at that moment: “I don’t want to die.”

[10] Boudewijn Chabot, Piet van Leeuwen & Jaap Schuurmans, “Niet stiekem bij dementie”, online: <http://nietstiekembijdementie.nl/&gt;.

[11] Boudewijn Chabot, “Worrisome Culture Shift in the Context of Self-Selected Death”, NRC Handelsblad (16 June 2017), online: <https://trudolemmens.wordpress.com/2017/06/19/the-euthanasia-genie-is-out-of-the-bottle-by-boudewijn-chabot-translation/&gt;. [my translation officially approved by Dr. Chabot]

[12] Supra note 1 at 74, 117, 118.

[13] The CCA report states: “ARs for MAID differ from advance directives in that they inevitably involve a third party who must, based on a documented request, determine the exact timing and circumstances of a person’s death.” Ibid. at 39.

[14] Carter v Canada (AG) 215 SCR 331 at para. 127

[15] Ibid. at para. 111.

[16] Ibid. at para. 113.

[17] Supra note 1 at 38.

[18] van Beers, supra note 8.

[19] For an interesting example documented in a media report in the Netherlands, see Evelien van Veen, “Dat is pa niet, het is de Alzheimer die klinkt” [That’s not dad, that’s the Alzheimer’s speaking] De Volkskrant (18 May 2018) online https://www.volkskrant.nl/mensen/dat-is-pa-niet-het-is-de-alzheimer-die-klinkt~bc7a61d0/?referrer=https%3A%2F%2Ftrudolemmens.wordpress.com%2F My translation available online: https://trudolemmens.wordpress.com/2018/07/14/thats-not-dad-thats-the-alzheimers-that-sounds-by-evelien-van-veen/

[20] See the discussion in supra note 1 at 85-105.

[21] Committee on the Rights of Persons with Disabilities, General Comment No. 1 – Article 12: Equal Recognition Before the Law, UN Doc. No. CRPD/C/GC/1, adopted at the 11th Session (April 2014), at para 9. https://www.ohchr.org/en/documents/general-comments-and-recommendations/general-comment-no-1-article-12-equal-recognition-1. See e.g. the discussion in Anna Arstein-Kerslake & Eilionóir Flynn, “The General Comment on Article 12 of the Convention on the Rights of Persons with Disabilities: A Roadmap for Equality Before the Law” (2016) 20(4) International Journal of Human Rights 471.

[22] Criminal Code (R.S.C., 1985, c. C-46). See also S. 241.2 (3.4):  Once a person demonstrates, by words, sounds or gestures, in accordance with subsection (3.2), refusal to have the substance administered or resistance to its administration, medical assistance in dying can no longer be provided to them on the basis of the consent given by them under subparagraph (3.2)(a)(iv).

[23] C. Tess Sheldon, “Proof in the Pudding: The Value of a Rights Based Approach to Understanding the Covert Administration of Psychotropic Medication to Adult Inpatients Determined to be Decisionally-incapable in Ontario’s Psychiatric Setting, (2017) 45(2) Journal of Law, Medicine & Ethics, 170-181 & Trudo Lemmens & C. Tess Sheldon, “The Governance of the Safety and Efficacy of Psychopharmaceuticals: Challenges and Opportunities for Reform” in J. Chandler & Colleen Flood (eds), Law and Mind: Mental Health Law and Policy in Canada (LexisNexis 2016) 223.

Medical Assistance in Dying: Brief to the Senate Standing Committee on Legal and Constitutional Affairs by Trudo Lemmens and Mary Shariff

Brief to the Senate Standing Committee on Legal and Constitutional Affairs; Re. Bill C-7: An Act to amend the Criminal Code (medical assistance in dying) (November 19, 2020)

Trudo Lemmens & Mary J Shariff

Trudo Lemmens (LicJur, LLM (bioethics), DCL) is the Scholl Chair in Health Law and Policy at the Faculty of Law of the University of Toronto. He is cross-appointed to the Dalla Lana School of Public Health and the Joint Centre for Bioethics. Mary J Shariff (LLB, LLM, PhD) is an Associate Professor and Associate Dean at the Faculty of Law of the University of Manitoba. Both authors have published extensively on Medical Assistance in Dying and have studied the issue from a comparative law and ethics perspective. Both authors also contributed to the work of the Council of Canadian Academies Expert Panel on Medical Assistance in Dying. Professor Lemmens was a member of the Panel’s Subcommittee on Advance Requests for MAID. Professor Shariff wrote a commissioned comparative law report for the Panel. Professor Lemmens was an expert witness for the Attorney General in the Truchon and Lamb cases. Professor Shariff was an expert witness for the Attorney General in the Carter and Lamb cases.

This brief discusses in five subsections why Bill C-7:

1) undermines the balance of Parliament’s constitutional obligations under various Charter rights and violates the International Convention on the Rights of Persons with Disabilities, mentioned in the preamble to Bill C-7 as a human rights standard Parliament needs to respect;

2) is discriminatory towards persons with disabilities and chronic illness as it infringes on their right to equal protection under the law. It also discriminates based on age, since older persons are disproportionally affected by disability and chronic illness;

3) fundamentally alters health care providers’ professional and legal obligations related to the standard of care by presenting the ending-of-life as another therapeutic option, without requiring that reasonable options are made available and explored first. In doing so, the Bill moves Canada beyond the most liberal MAID regimes in the world and fundamentally alters long-standing legal and ethical norms of health care practice;

4) fails to introduce sufficient data gathering and monitoring practices;

5) inappropriately cancels the safeguard, embedded in the 10-day wait period, that encourages careful reflection for people whose death is reasonably foreseeable. This 10-day waiting period was not questioned in the Truchon decision. The Bill thereby also introduces some form of Advance Requests for MAID, while the current law requires this to be carefully reviewed by Parliament. The government commissioned a detailed report for this purpose from the Council of Canadian Academies.  


We urge members of Parliament to carefully consider the serious implications of Bill C-7 on Medical Assistance in Dying [MAID] for the life, health care, and wellbeing of people with disabilities and chronic illness; for how we value the life of people who are older, ill, or disabled; for the integrity of health care and the professional and ethical commitment of health care providers; and ultimately for the state’s constitutional obligations to protect life and to do so without discrimination (sections 7 & 15 of the Charter). These concerns, some of which were highlighted in a recent report of the UN Special Rapporteur on the Rights of Persons with Disabilities, are the focus of this brief. These concerns open up the legislation to a Charter challenge based on S. 7 and S. 15 of the Charter.

In the recent report on the Department of Justice online public consultations following the Truchon decision, the government states that Canada’s MAID system will “change from a regime that aims to enable people to have a peaceful death rather than a painful or prolonged dying process, to a regime that offers the choice of MAID to relieve intolerable suffering, regardless of proximity to natural death.”[1]

The seriousness of this shift, which was never carefully debated in Parliament nor analyzed by the Supreme Court of Canada [SCC], cannot be overemphasized.[2] As the term suggests, “Medical Assistance in Dying” was originally presented as a means to facilitate a dying process and to allow people to control the manner and timing of their dying. Bill C-7 transforms this into a tool to solve suffering in life. Presenting the Bill as offering ‘choice to relieve suffering’ is rhetorically powerful. Who could be against the relief of intolerable suffering, and even more so when, unlike any medical therapy, it is always 100% effective? But this rhetoric obscures the fact that causing death remains, as recognized in our criminal law, a most serious and irreversible harm, and the fact that MAID will disproportionally impact Canadians who are subject to the Bill’s reach. Any state action that imposes an increased risk of death on a person (directly or indirectly) engages the right to life. Accordingly, equal protection must be given deliberate and sober consideration.

The Bill prioritizes the liberty for some to end their life with medical and state support, over the rights and interests of others to be protected against premature death, and to have access to health care that supports them in life and address their pain and suffering while alive. Simply put, the Bill fails to ensure a proper balance between the different rights and interests at stake. The matter at hand is not only about facilitating an abstract notion of autonomy for someone seeking death. It is also about ensuring that our laws balance the right to make self-regarding decisions with the responsibility and obligation to protect the right to life and the right to equal protection under the law, particularly for already disadvantaged and marginalized people and who also have a right to autonomy. The Bill fails to contemplate and incorporate into the law through appropriate safeguards, the social, economic and health care contexts that impact on how persons make autonomous decisions, particularly when faced with the challenges of chronic illness and disability.

The current pandemic context has highlighted the seriousness and complexity of the challenges people and health care providers face when making health care decisions, as well as the disproportionate impact of these challenges on disadvantaged persons. Rather than introducing a social experiment with the expansion of MAID as a therapy for suffering, Parliament should take seriously the issues that emerge from our current MAID regime, even if this means pausing and not immediately responding to a judicial ruling from the Quebec superior court, which we know really only has implications for the status and application of the law in Quebec. If it is indeed concerned about constitutional implications, Parliament should consider asking Cabinet to submit a revised MAID bill, with strengthened safeguards, for reference to the Supreme Court of Canada. 

Turning to each of the five points noted above:

1) The Bill undermines the balance of Charter rights and obligations.

The Bill is introduced in response to the Quebec Truchon decision, which found the restriction to ‘reasonably foreseeable death’ unconstitutional. The Bill however disrupts the balance that the existing law tries to achieve, particularly the balance between the state’s duties to protect the right to life and the right to liberty.

In Carter, the SCC explicitly rejected the claims that the “right to life include[s] a right to die with dignity” or the “right to determine whether to take one’s own life.”[3] While ruling that an absolute prohibition violated, in certain respects, the right to life, liberty and security of the person, the SCC confirmed that the state continues to have a strong obligation to uphold the right to life. Suicide prevention, avoidance of premature death, and protection of the equal value of the life of persons who are older, ill, or disabled, remain crucial state obligations. Criminal law restrictions and strong safeguards are thus not constitutionally suspect; they are essential to protect the key Charter right to life.

The right to life remains a cornerstone of other rights, as it protects the very existence of the person who can exercise rights. The ‘reasonably foreseeable death’ criterion aims to protect all people regardless of disability, chronic illness, or age, from premature death. While Following Carter, facilitating the “passage to death”[4] through MAID is seen as an important tool to allow control over the timing and manner of death and relieve suffering, going beyond the end-of-life context trivializes the state obligation to protect life and the medical standard of care. The SCC neither explicitly demanded nor endorsed it.

Following her recent visit to Canada, the United Nations Special Rapporteur on the Rights of Persons with Disabilities already expressed concern about the implementation of Canada’s current MAID law, and urged for better safeguards.[5] Her 2019 report to the UN General Assembly further explicitly states that the expansion of MAID law outside the end-of-life context violates the right to life:

If assisted dying is to be permitted, it must be accompanied by strong measures to protect the right to life of persons with disabilities. First, access to assisted dying should be restricted to those who are at the end of life; having an impairment should never be a reason for assisted dying to be permitted.[6]

The new Bill thus ignores the Special Rapporteur’s expression of concern about applications under the current law, and moves explicitly in the opposite direction, by removing the essential safeguard of restricting MAID access to end-of-life, and by diminishing other safeguards. The Bill thereby violates the right to life.

We recommend maintaining the safeguard of restriction to reasonable foreseeable death, or the introduction of another, more precise end-of-life restriction. We further recommend that other safeguards in the current law be strengthened to respect the state’s obligations under sections 7 and 15 of the Charter.

2) The bill discriminates against persons with disabilities and chronic illness

With the removal of the restriction to ‘reasonably foreseeable death’, a state-supported and health care provider organized system of ending-of-life of people who may have years or decades to live is being introduced and indirectly promoted, but only for persons with disabilities or chronic illness. For them, since it is potentially deadly, the system introduces a most troubling form of discrimination. Others will continue to be protected to a greater degree by the restriction of MAID to situations where their death is reasonably foreseeable and the Bill’s proposed additional safeguards do not address this discrimination. The Bill thus exposes the law also to a Charter challenge based on S. 15.

The Bill’s expansion is said to address discriminatory exclusion from MAID. But no SCC decision has ever deemed a restriction of MAID to be discriminatory. The Bill’s expansion to all persons who are disabled or chronically ill is based on the questionable finding in Truchon that the ‘reasonable foreseeable death’ restriction discriminates against persons with disabilities and chronic illness whose death is not reasonably foreseeable, as compared to persons with disabilities and chronic illness whose death is reasonably foreseeable, since only the latter have access.[7]

The SCC has emphasized that a discrimination analysis involves “a flexible and contextual inquiry into whether a distinction has the effect of perpetuating arbitrary disadvantage.[8]  There is, however, no arbitrary, long-standing history of disadvantaging persons with disabilities and chronic illness whose deaths are not reasonably foreseeable, as compared to those whose deaths are reasonably foreseeable. The trial judge suggested that the restriction perpetuates long-standing stereotypes that persons with disabilities cannot decide for themselves. But this ignores the fact that the restriction to end-of-life applies to all, not only persons with disabilities and chronic illness, and is focused on protecting the life of all those who still have years or decades to live. The judge in Truchon failed to appreciate how such a restriction reflects the protection of the equal value of the lives of all Canadians – a constitutional duty. 

In the health care context, the arbitrary and stigmatizing disadvantaging of persons with disability and chronic illness lies precisely in not providing adequate accommodation to facilitate living, not providing adequate access to care, and in making health care decisions or recommendations for care that devalue the life of people who are ill, disabled or older (e.g. offering MAID when it has not been requested or sought out). That is the lived experience of many persons with disabilities.

The Bill problematically adds to this historical and systemic disadvantaging of persons with disabilities by facilitating their premature death, and by depriving them of the protection against premature death that the criminal law will continue to offer to those who are not disabled or chronically ill. While no doubt well intended, it is based on, and further fuels, stereotypes based on misleading and ableist perceptions of the value and tolerability of a life with disability or chronic illness. The fact that some empowered persons with disability or chronic illness have asked for MAID does not mean that protective measures are constitutionally invalid. Very few equality-promoting and protecting measures would survive constitutional scrutiny if individual preferences were always prioritized over broader interests of a disadvantaged community. On the contrary, protective measures are required to ensure equal protection under the law.

The COVID-19 pandemic’s impact reflects the reality of the deep marginalization and disadvantaging of persons with disability and chronic illness in Canada. It has brought our attention to the existence of discrimination and the lack of access to accommodation and care for persons with disabilities, frail older persons and those who are chronically ill. Reports of the situation in long-term care facilities reveal the inequality in access to proper health care. They also reveal how the failure to provide adequate options for home care and supported living directly threatens the life, as well as the physical and mental wellbeing of persons with disabilities or chronic illness and older persons. Pandemic response measures have disproportionally impacted people with disabilities and chronic illness, as well as older persons in long-term care facilities. Many have been abruptly deprived of essential support offered by family and close others.[9] Stigmatizing and discriminatory attitudes in health care planning are also arguably reflected in pandemic prioritizing plans for access to intensive care.[10]

The pandemic clearly illustrates the need to consider the broader health care and socio-economic context in which persons with disability and chronic illness have to make their decisions. In addition to pointing to the discriminatory nature of enabling the ending of life on the basis of disability, the Special Rapporteur on the Rights of Persons with Disabilities emphasizes that:

access to appropriate palliative care, rights-based support, home care and other social measures must be guaranteed; decisions about assisted death should not be made because life has been made unbearable through lack of choices and control.[11]

3) The Bill fundamentally alters professional obligations related to standard of care

The new Bill relies on an assessment process to ensure that people whose death is not reasonably foreseeable are informed of and have considered all other available options. But unlike any other jurisdiction in the world — and less than a handful allow MAID outside the end-of-life context — the bill will not require that these options are made available and explored first. The new Bill thereby fails to treat MAID as the exceptional, last-resort option the few jurisdictions that allow MAID rightly consider it to be. In Belgium and the Netherlands, currently the most liberal MAID jurisdictions, physicians have to agree that there is no other option before providing MAID.[12] And with reason: unlike other treatment choices, ending a person’s life is irreversible and results in what we, in all other situations, would clearly consider the most serious of harms. Moreover, it can impose a serious emotional and moral burden on health care providers and family members who are asked to provide it or participate in it. Health care providers have to be able to reconcile MAID with their duty of care.

The SCC in Carter and the current law both recognize, at least in principle, the exceptional nature of MAID practice. The law currently permits that in exceptional circumstances, helping the passage to death can be reconciled with health care providers’ duty of beneficence. The law does indeed rely to a significant degree on patients’ own determination of the reasonableness of treatment options. But a decision to forgo treatment and asking health care providers to support or facilitate an approaching death is one thing. Asking health care providers to actually end the life of patients who have years or decades to live when, in their professional opinion, several treatment or support options can provide cure and/or relief of suffering, is something very different. The impact of error, the risk of which cannot be excluded, is also clearly so much greater.

There is no other area of medical practice where health care providers can perform an active medical intervention that harms the person or puts the person’s life at significant risk, when compared to standard medical interventions that offer a reasonable chance of recovery or relief from pain and suffering. Patients cannot insist that health care providers contribute to procedures that clearly run counter to the professional standard of care and that are not medically indicated. Even if patients insist on using novel, untested drugs or medical devices, for example, health care professionals would rightly be considered in violation of their professional duties if they provide them. With several high-risk medical interventions, patients also only have access if other options are explored first and fail. In other words: making access to some interventions conditional on trying others is not unusual, and seems a most minimal requirement when the intervention is irreversible and results in death.   

Actively providing MAID outside of an end-of-life context cannot be compared to non-interference when a patient refuses an intervention. Patients can always refuse treatment (even if the outcome is the patient’s death), but this is based on the combination of two legal/ethical principles: the patient’s right to make self-regarding medical decisions; and the prohibition against physically invading a person’s body without consent (which constitutes assault).[13] A patient’s right to refuse treatment cannot fundamentally alter the standard of care in terms of treatment options identified by the health care provider.

We therefore recommend as an essential safeguard, if Parliament lifts the restriction of reasonable foreseeable death, that all reasonable treatment options have to be made available and explored first. This does not affect the right of patients to refuse treatment.

The risk to the doctor-patient relationship, in which the duties of beneficence and non-maleficence are central, is exacerbated by the suggestions that have been made by some who advocate for broad access to MAID that physicians always have an obligation to raise MAID as a clinical option (as if it were like any other evidenced-based medical treatment) with all people who may qualify under the law. On what basis could a physician ever assert that a patient’s condition would clinically improve with death? Clearly, a physician could never make such an assertion, therefore MAID as a treatment option is exceptional and distinct from every other treatment option within the standard of care.

If the duty to introduce MAID as option applied outside the end-of-life context, the new law could result in any person with disability and chronic illness, including older persons, being systematically counselled about MAID. This is discriminatory. Those who assert that this inherently constitutes patient empowerment and promotes choice ignore the stigmatizing nature of such offers, and the potential impact of such counselling, taking into consideration the health-care provider-patient imbalance of power and knowledge. A person with a disability or chronic illness being offered death as therapy while having years or decades of life ahead- without having asked for it – is stigmatizing, taints the health care provider-patient relation, and risks creating undue pressure or subtle coercion. Physicians who know that there are reasonable treatment options for their patient have as part of their professional duty the obligation to instill hope and support resilience in patients to promote their health and wellbeing – not stimulate a desire to die. Offering MAID to a patient who has not raised it could effectively contribute to their death and suicidality. There is already anecdotal evidence, revealed to us by medical practitioners and family members, that patients may interpret an offer of MAID by their trusted health care provider as an indication that their suffering will be intolerable and that MAID is the recommended way out. 

The government is obligated to protect vulnerable persons from being induced to end their lives. As part of MAID practice, health care providers have an obligation to assess individual vulnerability. Given the power and knowledge differentials, health care providers who raise MAID as an option to end the suffering of patients who have not expressly requested MAID operate as a potential source of vulnerability, a vulnerability they are simultaneously tasked with assessing. Legally this is untenable. 

We therefore recommend the introduction of an explicit provision in the Bill that health care providers should not offer MAID when other clinically indicated treatment options exist; and that MAID dialogue should only be triggered upon explicit patient request.

4) The safeguards in the existing legislation and in the new Bill are not sufficient.

As mentioned – restriction to end-of-life, triggering MAID dialogue only on the basis of a patient’s explicit request, imposing an obligation to make all other reasonable options available and have them explored first – constitute essential safeguards to protect patients and the integrity of the health care professions. But other safeguards are also essential, and become more so if Parliament decides to accept that MAID is to be offered outside the end-of-life context. We discuss some of the safeguards in the Bill here: 

The 90-day assessment period for people whose death is not reasonable foreseeable

Some have suggested that the 90-day assessment period for people whose death is not reasonably foreseeable is too long. We believe it is insufficient to ensure that patients confronted with life-changing, catastrophic disability or chronic illness, are given a significant chance to recover and to learn how to cope with these changes. 

Some examples put this time frame in perspective:

  • Treatment and rehabilitation for spinal cord injuries is a long-term process, involving multiple health care providers and interventions spread over months and years.[14] People who experience such a life altering injury could obtain MAID before treatment and rehabilitation start providing hope.
  • Wait time for various specialized mental health care often exceeds 90 days.[15] And as we are currently experiencing, wait times are significantly extended in a pandemic context. People with disability and chronic illness are disproportionally suffering from mental health issues. The new Bill all-too-easily presumes that mental health reasons underling a request to die will be identified properly by non-specialists and addressed in a 90-day period.
  • Many people with disability and chronic illness need specialized long-term care, but people waited 126 days on average in Ontario in 2018-2019, for example, to have access to it.[16] Adequate home care or supported living, preferred by most people with disabilities and safer in a pandemic context, are not or are insufficiently available in several provinces.
  • The median wait time for access to specialized pain clinics was around 5.5 months in 2017-18, with some persons waiting up to four years,[17] making it faster to obtain MAID than to receive pain treatment.

These examples highlight the danger of relying on a 90-day assessment period as a tool to respond to the concerns raised by expanding MAID to persons with disabilities and chronic illness. It also confirms the importance of our recommendations that all reasonable treatment options be made available and explored first, should the reasonable foreseeable death criterion not be maintained; and that other safeguards need to be strengthened.

Reporting and Monitoring: Need for Strengthening

We support the recommendations of the Vulnerable Person Standard group with respect to the need for more detailed reporting and monitoring of MAID practice. A document submitted in response to Bill C-7 makes detailed recommendations with respect to the need for more thorough federal data gathering and monitoring than what is currently being undertaken across the country in various provinces.[18] We endorse the recommendations for standard setting by the federal government under the federal criminal law power. Better mandatory reporting and monitoring as part of the criminal law-based regulation of MAID is essential to respect the state’s obligation to protect the right to life and to prevent discrimination.

5) The 10-day Reflection Period and Confirmation of Consent should be maintained

The Bill’s proposal to diminish the already limited safeguard of a 10-day reflection period is problematic and requires further discussion. The removal of this reflection period is in no way required in response to Truchon. We note that this requirement is already flexible under the current law and that the waiting period can be waived, as has already been frequently done, when incapacity is imminent. But the principle remains important and corresponds with the SCC’s insistence on ‘clear consent’.

Many people, disproportionately persons with disabilities and older persons, suffer from loneliness and isolation, which is amplified by the COVID-19 pandemic. Some are giving up on life because of the context in which they find themselves. Decisions about end-of-life (whether to accept or forgo treatment; whether to opt for MAID or not) tend to be characterized by uncertainty, doubt, ambiguity, and decisional fluctuations. We are very concerned, in the context of the pandemic, about the Bill’s removal of a safeguard that may prevent, for example, an isolated older person requesting and receiving MAID without loved ones or close others even being able to physically meet with the person or be given the time to explore alternatives that could instill a renewed desire to live.

We further note that some have argued that a flexible interpretation of the ‘reasonably foreseeable death’ criterion, combined with the abolishing of the need to reconfirm consent after 10 days, would now permit the use of an advance request for people with a diagnosis of dementia or Alzheimer’s disease who want to have their life ended at some point in the future when they will no longer be capable of decision-making.[19]

We find it concerning that the government hereby introduces Advance Requests [AR] for MAID, when the current law explicitly requires parliament to study it in detail. The government asked the Council of Canadian Academies [CCA] to organize a review of AR for MAID for that very purpose. The report of the CCA Subcommittee on AR for MAID documents the evidence and the ethical and legal dilemmas ARs for MAID raise.[20] Only 4 jurisdictions explicitly allow AR for MAID, three of which only allow it to be performed when a person has become permanently unconscious or is imminently dying. Only one country allows it for people who are conscious and not imminently dying, as Bill C-7 does.[21] It is rarely used and when it has, it has often evoked serious controversy. Ending the life of a person in those circumstances violates in our opinion the International Convention on the Rights of Persons with Disabilities.[22]

Bill C-7 reflects some realization of the concerns raised in relation to reported cases in the Netherlands of people who made an AR for MAID but then physically resisted the MAID procedure while lacking capacity.[23] Bill C-7 indicates that a health care provider can only provide a substance to cause death if “the person does not demonstrate, by words, sounds or gestures, refusal to have the substance administered or resistance to its administration” (S. 3.2(c)). But the Bill undermines this requirement by introducing in S. 3.‍3 “For greater certainty, involuntary words, sounds or gestures made in response to contact do not constitute a demonstration of refusal or resistance for the purposes of paragraph (3.‍2)‍(c).” This provision largely removes the already limited protection offered by S.3.2(c). A person who is performing a life-ending procedure of a now incapacitated person can always easily conclude that the words, sounds, or gestures were involuntary, since a finding of incapacity overlaps with a finding of lack of voluntariness. The Bill will thus disturbingly allow health care providers to end the life of patients who physically and in sound or words resist and are deemed no longer capable of decision-making, by facilitating a conclusion that the persons’s resistance to the procedure to end her life is involuntary.

Nothing in the Truchon decision requires the 10-day reflection period to be abolished. Parliament should take the time to study the difficult legal and ethical challenges raised by AR for MAID in detail, as it is required to do by law. The government commissioned the CCA Expert Committee’s reports for that very reason.

We recommend that Parliament maintain the 10-day reflection period by removing s. 1.5.

We recommend that Parliament comprehensively study the ethical and legal challenges raised by Advance Requests for MAID including the evidence as detailed in the Council of Canadian Academy Report, prior to making a decision on the introduction of AR for MAID.

If Parliament removes the 10-day reflection period (and thus maintains s. 1.5 of the Bill), we recommend that s. 3.3 is replaced by: “For greater certainty, any word, sound or gesture that may reflect a demonstration of refusal or resistance to the MAID procedure should result in a halting of the procedure.”

List of Recommendations

  1. The restriction of MAID to situations of reasonable foreseeable death should be maintained or another more precise restriction to end-of-life should be introduced. Other safeguards in the current law should be strengthened to respect the state’s obligations under sections 7 and 15 of the Charter.
  2. If the restriction to end-of-life is not maintained, Bill C-7 should include a requirement that all reasonable treatment options have to be made available and explored first, and not just considered. This does not affect a patient’s right to refuse treatment.
  3. Bill C-7 should introduce a provision that health care providers should not be allowed to offer MAID when other clinically indicated treatment options exist. MAID dialogue should be triggered only by explicit patient request.
  4. We endorse the recommendations by the Vulnerable Person Standard for more comprehensive monitoring and data gathering standards, to be developed under the federal criminal law power. 
  5. Bill C-7 should not abolish a 10-day reflection period; s. 1(5) should be removed.
  6. Parliament should comprehensively study the ethical and legal challenges raised by Advance Requests for MAID, including the evidence as detailed in the Council of Canadian Academy Report, prior to making a decision on the introduction of AR for MAID.
  7. If Parliament removes the 10-day reflection period (and thus maintains s. 1.5 of the Bill), section 3.3 should read: “For greater certainty, any word, sound or gesture that could reflect a demonstration of refusal or resistance to the MAID procedure should result in a halting of the procedure.”


[1] Department of Justice, What We Heard Report: A Public Consultation on Medical Assistance in Dying (2020) online: https://www.justice.gc.ca/eng/cj-jp/ad-am/wwh-cqnae/index.html

[2] The government has frequently invoked broad public support to justify its shift with Bill C-7. But public support is obviously a very poor justification for measures that infringe on human rights. Worth noting is that the public consultation was based on a questionnaire which started from the premise of broader access to MAID outside the end-of-life context. In addition, the online consultation system had no measures in place to ensure representation validity.  As such, the questionaire is also a very weak basis for claiming public support.

[3] See the discussion of these claims in Carter v Canada (AG) 215 SCR 331 at par. 59-62 [Carter]. See also Karine Millaire, “Le concept d’autonomie dans l’arrêt Carter c. Canada : Au-delà du libre-choix” (2017) 63:2 McGill L Rev 283 at 302.

[4] Carter,supra note 1 at par. 63.

[5] UN Special Rapporteur on the Rights of People with Disabilities, “End of Mission Statement by the United Nations Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, on her visit to Canada” (12 April 2019) online: https://www.ohchr.org/en/NewsEvents/Pages/DisplayNews.aspx?NewsID=24481&LangID=E; Canada ratified The Convention on The Rights of Persons with Disabilities (A/RES/61/106) in 2010 and acceded to the Optional Protocol in 2018, online: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html

[6] United Nations, General Assembly, Report of the Special Rapporteur on the Rights of Persons with Disabilities, Human Rights Council, 43rd session A/HRC/43/41, at para. 70 (references omitted); online: https://undocs.org/en/A/HRC/43/41

[7] Trudo Lemmens & Laverne Jacobs, “The latest medical assistance in dying decision needs to be appealed: Here’s why” (9 October 2019), The Conversation, online: https://theconversation.com/the-latest-medical-assistance-in-dying-decision-needs-to-be-appealed-heres-why-124955.

[8] Quebec (Attorney General) v. A, [2013] 1 S.C.R. 61 at para. 331 [our emphasis]

[9] Canadian Foundation for Health Care Improvement, Better Together: Re-Integration of Family Caregivers as Essential Partners in Care in a Time of COVID-19 (Canadian Foundation for Health Care Improvement: Ottawa, 2020) online: https://www.cfhi-fcass.ca/docs/default-source/itr/tools-and-resources/bt-re-integration-of-family-caregivers-as-essential-partners-covid-19-e.pdf?sfvrsn=5b3d8f3d_2

[10] See Chief Commissioner Ena Chadna, “Letter to the Minister of Health on Bioethics Table recommendations and proposed framework for a COVID-19 Triage Protocol” (Ontario Human Rights Commission, 30 October 2020) online: http://www.ohrc.on.ca/en/news_centre/letter-minister-health-bioethics-table-recommendations-and-proposed-framework-covid-19-triage; Robert Latanzio et al. ARCH Disability Law Centre Submissions and Recommendations Regarding Ontario’s Triage Protocol Draft dated July 7, 2020 (20 July 2020) online: https://archdisabilitylaw.ca/wp-content/uploads/2020/08/MASTER-Triage-Protocol-Submissions-FINAL-D.pdf)

[11] United Nations, General Assembly, Report of the Special Rapporteur on the Rights of Persons with Disabilities, Human Rights Council, 43rd session A/HRC/43/41, at para. 70 (references omitted). For discussion of meaningful choice and Canada’s obligations with respect to palliative care and the right to the enjoyment of the highest attainable standard of health under the International Covenant on Economic, Social and Cultural Rights (which entered into force in Canada in 1976) see, Mary J Shariff, “Navigating Assisted Death and End-of-Life Care” CMAJ April 05, 2011 183 (6) 643-644, https://www.cmaj.ca/content/183/6/643; and Yude M Henteleff, Mary J Shariff & Darcy L MacPherson, “Palliative Care, An Enforceable Canadian Human Right” (2011) 5(1) McGill Journal of Law and Health 107. https://mjlhmcgill.files.wordpress.com/2017/07/mjlh-vol-v-no-1-shariff.pdf.

[12] Belgium and the Netherlands, two jurisdictions often put forward as models for Canada, and reviewed in Carter, require physicians to determine that there is no medical option left and no reasonable alternative. In Belgium, the law requires physicians to determine that the situation is medically hopeless and that there are no other ways to alleviate suffering. In the Netherlands, they have to determine that there is no prospect of improvement, and no reasonable alternative. While there is ongoing discussion about how to reconcile the right to refuse treatment with the physician’s obligation to determine whether there are other options, access to MAID is explicitly stated to be a last resort; and physicians have to agree there is no reasonable option left. There is no systemic obligation to provide MAID if physicians conclude there are other options, and no right to insist to have MAID performed. See Trudo Lemmens, “Charter Scrutiny of Canada’s Medical Assistance in Dying Law and the Shifting Landscape of Belgian and Dutch Euthanasia Practice” (2018) 85 Supreme Court Law Review (2nd)453 at 471-472.

[13] The Expert Panel Working Group on Advance Requests for MAID, Council of Canadian Academies, The State of Knowledge on Advance Requests for Medical Assistance in Dying. (Ottawa, ON: Council of Canadian Academies, 2018) at 38-39, online: https://cca-reports.ca/wp-content/uploads/2019/02/The-State-of-Knowledge-on-Advance-Requests-for-Medical-Assistance-in-Dying.pdf; Sonu K. Gaind et al., Canada at a Crossroads: Recommendations on Medical Assistance in Dying and Persons with a Mental Disorder: An Evidence-Based Critique of the Halifax Group IRPP Report (26 March 2020) (Toronto, Expert Advisory Group on Medical Assistance in Dying, 2020) at 22-23 & 27-29 online https://www.eagmaid.org/report

[14] Kemal Nas et al. “Rehabilitation of spinal cord injuries” (2015) 6 World J Orthop 8

[15] Rachel Loebach & Sasha Ayoubzadeh, “Wait times for psychiatric care in Ontario” (2017) 86 UWOMJ 48. See also: https://www.cbc.ca/news/canada/kitchener-waterloo/wait-times-for-some-mental-health-services-up-to-a-year-long-in-waterloo-wellington-1.5441205

[16] Health Quality Ontario, “Wait Times for Long-term Care Homes” online: https://www.hqontario.ca/System-Performance/Long-Term-Care-Home-Performance/Wait-Times

[17] Canadian Pain Task Force, Chronic Pain in Canada: Laying a Foundation for Action – A Report by the Canadian Pain Task Force, (Ottawa: Minister of Health, 2019) at 18-19.

Online https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force/report-2019.html#a2.7

[18] Advisors to the Vulnerable Person Standard, “Failing People with Disabilities Who Experiene Systemic Suffering: Gaps in the Monitoring System for Medical Assistance in Dying” (October 2020). Online: https://static1.squarespace.com/static/56bb84cb01dbae77f988b71a/t/5f90666476d4f07d2c0233dc/1603298916667/MAID+Monitoring+-+Failing+People+with+Disabilities+-+Final.pdf

[19] Jocelyn Downie “Medical assistance in dying an important step forward for Canadians with dementia” (27 October 2020) Policy Options online: https://policyoptions.irpp.org/magazines/october-2020/medical-assistance-in-dying-bill-an-important-step-forward-for-canadians-with-dementia/

[20] The Expert Panel Working Group on Advance Requests for MAID, Council of Canadian Academies, supra note 13.

[21] See the overview in ibid. at 74-115.

[22] For example, in the Netherlands, the only country that allows AR for MAID to be used with people who are conscious but incapable of decision making even, some people with Alzheimer’s disease have been surreptitiously sedated prior to receiving a final injection. The Dutch High Court has further affirmed the legality of continuing a MAID procedure even when a patient physically resists. Both practices constitute a violation of art. 12 (equal recognition before the law) of the International Convention of the Rights of Persons with Disabilities.

[23] See the discussion in The Expert Panel Working Group on Advance Requests for MAID, Council of Canadian Academies, supra note 13 at 127-133. See also David G. Miller et al, “Advance Euthanasia Directives: A Controversial Case and Its Ethical Implications” (2019) 45 Journal of Medical Ethics 84.

“That’s not Dad, that’s the Alzheimer speaking” by Evelien van Veen (de Volkskrant 18/05/2018)

And what about his father saying: life does not bother me as such? Luc shakes his head. “That’s not Dad, that’s the Alzheimer’s speaking.”

For many years, Jacques Beemsterboer was convinced: when things are no longer going well, there is still euthanasia. But things are turning out differently

(My translation (TL), with suggestions Ray De Vries, of an article in de Volkskrant, original in Dutch available here)

It is March 9, 2018, and Luc Beemsterboer (52) enters the nursing home where his father has been living for three days. He walks through the long hallway and types in the access code for the glass sliding doors, just when his dad arrives behind the door.  A little man, a bit stooped by old age, neat jacket suit. When he sees his son, he momentarily pretends to run past him, a teasing twinkle in his eyes.

“How are you doing, Dad?”, asks Luc, when the tall and the short man stand head to head.

“Shitty”, is the answer – with a tone of: what did you expect?

Jacques Beemsterboer (80) is not in a nursing home because he really wanted it badly. He would by far have preferred to stay with his Toos, his wife of  55 years, in their new flat in the center of Papendrecht. But it did not work anymore. Jacques has Alzheimer’s; he is confused; at home he ran around at night like a ghost, keeping Toos busy with him at the most impossible times. Sometimes, he realizes that he has dementia. “It enters your life insidiously,” he says when you ask him about it. “I can still participate quite well in conversations about nearly anything, but will I still know about it in fourteen days? That’s another question.”

His room in the nursing home is still a bit bare: a bed, a cupboard, a table with two chairs. The photo album that lays on the table shows the Beemsterboer family during birthdays and barbecues; with two sons, two daughters, grandchildren, great-grandchildren and a lot of other folks, it was regularly full-house. When you say: “A nice bunch, Mr Beemsterboer”, he answers dryly: “I did my best.”

A man with a sense of humor, his whole life shopkeeper, owner of two drug stores in Rotterdam. A lover of sports; he cycled, finished the Four-Day Nijmegen March with ease, and even managed to run four marathons. “Running is still nice”, he says, “but things that I used to be able to do, like running the marathon, I can’t do anymore. I would still like to do it, but you have to be realistic, I cannot handle that anymore. Cycling of course, but not as much anymore. You have to do everything more modestly, you get used to that after a while.” Looking a little uncertain at his son Luc: ‘Can you still agree with all the things I’m saying?’

“Well, Dad, you completely stopped cycling,” says Luc. Jacques nods a little, he seems suddenly lost in thought. When his wife Toos is mentioned, he cries briefly and silently. Yes, it is very difficult for him to spend his days without her now. She will come to visit this afternoon with daughter Marlies, says Luc when he is about to leave. Jacques’ eyes twinkle again. With gallows humour: “Oh, that one too? What a tough day I have.” They never intended to put his father is in a nursing home, says Luc Beemsterboer earlier in the day in his mother’s new flat in the city centre of Papendrecht. Toos (79) serves coffee; daughter Marlies (48) is also present. Jacques had wanted to step out of life on time, all three agreed. The fact that this did not happen, says Toos, is because ‘in the Netherlands a handful of important men apparently decide about life and death.’


Jacques Beemsterboer is diagnosed with Alzheimer’s disease in 2013. By then, he is getting more and more forgetful, for several years already; the diagnosis hardly comes as a surprise to him and Toos. He also realizes that he will continue to decline, but he does not want to let that happen. He makes an appointment with a euthanasia consultant. He then signs a living will in which he indicates that he wants euthanasia if there is unbearable and hopeless suffering and his life is ‘no longer human’. From then on, he continues to sign such a statement every six months; his GP keeps them in his file.

In the Alzheimer cafés that Jacques and Toos visit almost monthly, Jacques gives regular lectures about his decision to opt for euthanasia when life no longer makes any sense to him. But we’re not there yet in those early years: he is member of a walking club, enjoys his vegetable garden, he loves his children and grandchildren and – even though he forgets the facts more and more quickly – he still follows the news every night.  But in November 2017, it has been enough, Toos continues her story. Jacques has deteriorated rapidly in recent months. His short-term memory is a tragedy; Toos has to help him with washing and dressing, and leads him back to bed with a gentle hand when he suddenly gets up at night. The names of his grandchildren are a mystery to him and when he comes across his mirror image, he sometimes says in surprise: “Someone is walking there.” Two days a week, Jacques goes to a care farm to give some relief to Toos. And although he always enters the van without protest, he admits that “it’s no longer worth it for me.”

Toos and Jacques then go to the doctor to tell him that Jacques has made up his mind. He wants to spend the holidays with his family and then it can be over for him. Toos: “I made him write it down the very same day.” Luc: “In retrospect, that was not a good idea, that you were sitting here doing this together. Those who are looking for evil can say: you surely forced him. A doctor should do that.” The GP has always supported them, Toos replies. “He was and still is fully in support of Jacques’ decision.”

In the statement that Jacques signs that day, he repeats his request for euthanasia when he has ‘permanent and almost total loss of my capacity for mental activity’ and ‘an irreversible decline’. A handwritten note is added: that the euthanasia request is for ‘early 2018’. “After Christmas, in January,” says Toos. “That was a good time for Jacques.”

An independent physician must always be consulted when there is a request for euthanasia, and the general practitioner therefore involves a SCEN doctor (SCEN stands for Support and Consultation with Euthanasia in the Netherlands). From that moment on, say Toos and the Beemsterboer children, things go wrong. That is why they show up with the SCEN reports at the newspaper: in situations like those of their husband and father, they argue, you are abandoned in the Netherlands with your euthanasia request, regardless of the fact that Jacques has always been consistent with the declaration of his intent. Marlies: “My father is now submitted to everything he never wanted. That is our struggle.”

A Visit

The SCEN doctor pays a visit to Jacques on 12 December 2017. Toos and Marlies are there with him, until the doctor says he wants to talk with Jacques privately. His visit lasts a total of one hour. When the doctor is gone, Jacques takes a wooden elephant he himself once carved from the closet. He begins to cry and says to Marlies, “This is a farewell present for your mother. I won’t be alive in a few weeks. ”

It is clear to him, Toos and Marlies think at that moment: he has expressed his death wish to the SCEN doctor. But when a little later their family physician sends them the SCEN report, it turns out things are not that clear. The SCEN doctor writes- he does not want to talk to the media about individual cases, but has no objection to having his report quoted -: ‘I meet Mr Beemsterboer in his living room and I first speak to him in the presence of his wife and a daughter. When I explain to him why I’m here, he gradually realizes that I am there to support you, his doctor, in case he opts for euthanasia. He confirms that he does want euthanasia: “if it is becoming insupportable, but it is still working out fine now.” There is an advent candle with two burning candles on the table and when I ask him if he had thought that he might want euthanasia after the fourth candle, after Christmas, he says “No way, death is not yet part of my program, I’m in no hurry . . .” When I ask him how many grandchildren he has, he does not know how to respond, but then he says, “I never counted them all” and then he looks at his wife and daughter as if to ask for a little help. He finds it annoying that he does not know the name of his grandson, “but I do not suffer from that, I can still enjoy the coziness around me.” His wife says that he is often sad and that he cries a lot. He looks at his wife somewhat surprised, but when I ask him if I can write that down in my report, he is fine with that. During the time that I am with him, without the presence of his wife and daughter, he says emphatically: “I was the first to suggest euthanasia, that is my wish, but there is no date. It all depends on: what about Jacques Beemsterboer in his totality? I’m a bit on the way out, but I’m not there yet.”

The SCEN-doctor further notes that Jacques tries his best ‘to come across as witty and sensible, but particularly when his relatives are present, he appears insecure and sometimes a little grumpy’. He finally states that Jacques does not give him the impression to be suffering. Even though the physician expects in the same report that Jacques’ condition will deteriorate in the short term ‘and he fears a ‘further decline in illness-insight and capacity’, his conclusion is that ‘Mr Beemsterboer does not currently want euthanasia’ and that the due care requirements are therefore not met.

The family physician, who wrote to Toos: ‘I thought we had a good file . . .’, seems at first obliged to accept the advice of his colleague. Toos is dismayed about these developments. She writes to the doctor: “My daughter and I were present, but were then briefly sent away. In that brief moment it was decided that Jacques does not suffer unbearably and that the advance directive cannot be implemented. How can a SCEN doctor take this decision when he knows that he is dealing with an Alzheimer’s patient? Is an Alzheimer’s patient not suffering?”

A second visit

A ​​second SCEN doctor is consulted in early January. Again Jacques is taken aside and again the Beemsterboers receive the report a few days later through the family physician. This second SCEN doctor – she also gives permission to quote from her report – writes to the general practitioner, with whom she had contact before by telephone: ‘The family is putting pressure on you as a family physician. The couple has just gotten a new home and the family does not want to move the patient to the new flat. The euthanasia should therefore take place before the move, specifically before the end of the month.’

“What is she talking about?”, the Beemsterboers later say, distraught. “It does not make sense. On the advice of our family physician, we wanted to postpone the move until after the euthanasia, so that my father could die in his familiar surroundings.”

The second doctor further notes: ‘The patient says: “I do not want to be forced to die like a used shoelace. We made that decision two months ago and when I now see how I am doing, it’s not my turn yet, I’m still too intellectually good for that. I am still able to do a lot of things.” When I ask the patient what it would be like for him if the doctor would come today with the medication for euthanasia, the patient replied: “Then I would say: why don’t you take that home?” ‘

About the second part of the conversation, where Toos, Luc and Marlies are present, she writes: ‘The family is disappointed about the turn of the conversation and asks the patient if he wants to be admitted to a nursing home. The patient answers: “I do not want to sit in a nursing home, so why don’t you give me a shot then. (…) It is a good solution to get rid of me, and it feels like I am now being disposed of.”’

This physician also concludes that the patient is currently not suffering unbearably because ‘the boundaries have moved upwards during the disease process’. Conclusion: ‘The carefully drafted declaration of intent is currently not applicable.’ 


So no euthanasia is performed- Toos and the children find it terrible for Jacques that his long-cherished wish is not carried out. They also find it incomprehensible how the SCEN doctors have done their work: how can you, in the space of one hour, draw conclusions that run counter to a file full of advance request declarations that has been five years in the making? The fact that both SCEN doctors have spoken to Jacques alone makes the family also particularly uncomfortable. Luc: “How did that conversation go? I would like to know that. I don’t trust it. My father does not know what he says; he does not realize the impact of his words. It is indeed possible that he answers ‘no’ to the question: do you want to die? But if you describe what life in a nursing home, without mom, looks like and ask him if he wants to live like that, then you get a different story. Moreover, after five minutes, my father does not know anymore what he just said. A statement from him is in any case a snapshot. He is no longer capable of decision-making.”

Toos: “He was also confused himself. A few days after the SCEN doctor’s visit, he said: “Didn’t we agree that I would go for euthanasia in early 2018?”

The first SCEN doctor hears about the astonishment of the family and writes them an email in which he says he can well imagine how ‘powerless you can feel when things turn out differently than expected’. But he also writes that he could not observe any ‘current request’ for euthanasia from Jacques, and no unbearable suffering. Furthermore, he writes: ‘The case where someone with dementia is drugged without his current consent and then gets a lethal injection, has now become the target of a criminal prosecution … A clear comment from father himself -” I want it now “- thus remains a desirable condition.’

Criminal investigation

At the beginning of March it became public that the justice department is currently conducting criminal investigations into five euthanasia cases that had earlier been assessed as ‘careless’ by the euthanasia review committee. Among these cases, the case of a 67-year-old woman with Alzheimer’s for whom, according to the review committee, the doctor could not establish whether it was a ‘voluntary and well-considered request’ for euthanasia. That the justice department is so on top of these cases is new. In the fifteen-year history of the euthanasia law, a criminal investigation was initiated only once.

SCEN physicians must adhere to the rules of the euthanasia law, says Erik van Wijlick, policy coordinator for the SCEN program of the Royal Dutch Society of Medicine. But especially with people with dementia the situation can be ‘extremely complicated’. “Does the patient find his suffering unbearable and does he want euthanasia now? Patients’ boundaries often shift, and of course that is allowed, such an advance request is not carved in stone. What seemed to be unbearable in the past can become acceptable later.”

The euthanasia conversation with the SCEN physician must, as a rule, be conducted at least in part in private, – with a few exceptions, for example when the patient is unable to talk properly. ‘The rationale is to prevent others from influencing the euthanasia wish. Sometimes the presence of third persons steers things in an undesirable direction, for example when they take over the conversation, and even when they have the best of intentions.

The right moment

Van Wijlick understands that family members can be really surprised when a request for euthanasia is not honored while the patient is in their eyes no longer capable of decision-making. “But what someone says now supersedes what someone wrote down a while ago: an oral expression supersedes someone’s advance request. That is how we stipulated it in the law. Performing euthanasia on someone who signals that they do not want it – or no longer want it -, that cannot be done with impunity, there is also a legal history behind this. You may very well say: ‘He does not know what he says’, – that’s true, but he is still saying it, and that is what counts.”

Van Wijlick recognizes that there is a moment when a person suffering from dementia is no longer aware of his previous desire for euthanasia and can no longer express a request. “It is terribly difficult – and sometimes impossible – to be ahead of such a situation. You can decide to step out of life on time, even before the onset of unbearable suffering. That requires a lot of courage from the patient, and a window of opportunity to use the right moment. But do not forget that there are other choices at the end of life. Deliberately refraining from eating and drinking can also be a real option, just like palliative care. There is much more than only a euthanasia request. ”

Stopping with eating is not on Jacques’ agenda: every night at six o’clock he is in line on time for the dinner in the nursing home. Sometimes he helps the caretakers peeling potatoes. “Indeed,” he says, “you have to keep busy one way or the other.”

‘Tucked away’

At home in the flat on the town square of Papendrecht, Toos says that she lived here with Jacques for only six weeks before he had to leave the house. “It was no longer feasible at home. He just wandered around, I was terrified that he would fall down the stairs. He was totally helpless. They recommended immediate placement. It is urgent, madam, I was told. You should not even start with homecare.”

Toos is deeply troubled by the fact that she has ‘tucked Jacques away’. “When I wave goodbye to him, we both cry on opposite sides of that glass door.” Daughter Marlies: “Fortunately, very soon he will no longer realize it. His future is hopeless. I call that suffering; no SCEN doctor or politician can talk me out of that. And we suffer with him.” Her brother Luc slides forward in his chair and nods affirmatively. “Soon he will shit his pants and scold the lovely nurses, because that is what Alzheimer’s does to you. And we’re going to visit him for social reasons, because he’s your father, the guy behind the geraniums. But he is no longer the same. He never wanted to end up like a crazy old man.”

Getting on with life for a while

Later in the afternoon, when he is asked how he likes it here in the nursing home, Jacques looks for words. After a brief silence: “Actually … I don’t really like it. You ask me what’s nice here, and I couldn’t name anything. But I have to put up with it.” “This lady is from the newspaper, Dad,” son Luc next to him at the table tells him, “she writes about euthanasia. Do you remember how you were busy with that?” Jacques nods slowly, repeating the word. “Euthanasia … yes, it is stepping out of your life for a specific purpose. I don’t remember that I have been specifically involved with that.” When asked whether he still values his life, he says: “I still value my life, but there is not so much left for me. Well, you can still do a jigsaw puzzle . . . ; you have to do everything a little more modestly”

He repeats the latter when he is asked about the euthanasia doctor who had visited him, and what he would say to him if he asked the same question this afternoon: do you want to die? “Then I would say: life does not really bother me as such. I want to continue living, but you have to do it a little more modestly.” Outside, on the sidewalk next to the nursing home, Luc takes his car keys out of his pocket. “If we go back inside now, my dad will have forgotten that we were there five minutes ago. You heard it: when I asked him ‘How are you?’, his first response is: ‘Shitty’. It is sad to see him like this.” And what about his father saying: life does not bother me as such? Luc shakes his head. “That’s not Dad, that’s the Alzheimer’s speaking.”

SHE WANTED A GOOD DEATH, EVEN PRIOR TO CHRISTMAS by Rianne Oosterom (Trouw, 29 May 2018)

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients.

[Note; this is my translation (TL) of an article in Dutch in Trouw. the original Dutch version of this article can be found here]

Euthanasia for severe psychiatric suffering can be provided under strict conditions, but what does that do to other patients? Psychiatrists are worried.

It is late at night when Cornelia (28) receives an invitation by telephone. Not for a birthday party, but for the ‘good death’ of her friend Désirée. That is how Désirée calls the euthanasia granted to her by the End of Life Clinic. She wants to go before Christmas, she tells Cornelia, when the tree has not yet been decorated. So in two weeks.

Désirée says it was difficult to make the phone call. That she postponed it, precisely because she knows that Cornelia is struggling with the same things as her. The friends know each other from the clinic where they ended up because they both no longer wanted to live. They felt understood by each other during group therapy sessions.

When Cornelia hangs up the phone, she feels light-headed. That night, she sleeps two hours and decides to write a letter to herself. More letters will be written in the weeks before the euthanasia of Désirée, and in the months after. Cornelia describes in her letters what the euthanasia of one psychiatric patient does to another patient.

It is as if it is my death on Wednesday and not hers. Part of me is going to die with her, part of her is still alive with me. Why do I suffer so much from losing her? Maybe I have to realize that she was more important than I thought. I sometimes thought about her as an aunt. She was some kind of family, a family I selected freely myself, and therefore even dearer to me. Our connection has become very strong because of our common experiences

Incited by death

Cornelia has a reason to make these excerpts public now: more and more psychiatric patients are getting euthanasia and that frightens her. She reads about it. Watches documentaries. Because she still wants to die, even though she is doing PhD research and she has a house for herself and lovely people around her. The depressive symptoms continue to come.

She feels that perspective is lacking in the stories about euthanasia in psychiatric patients. The perspective of the environment around the patient who opts for euthanasia, an environment that often includes other patients who can be incited by death.

A number of prominent psychiatrists are concerned about this, according to an inquiry by Trouw. Their expectation is that the risk of suicide among other patients increases when more psychiatric patients receive euthanasia, That Cornelia is still alive is actually a miracle. She became suicidal after the euthanasia of her friend; so this had already happened once before, but now she really has gone downhill.

No research has been carried out on the effects of euthanasia on other psychiatric patients and that must be done, according to Jim van Os, professor of psychiatry at UMC Utrecht. “This is a completely new topic,” he says. “We know that in a network of patients, traumatic events can be a trigger for suicide. If there is suddenly an empty chair in group therapy, where people are trying to support each other, it has an enormous impact on the group. When someone disappears, it can destabilize another person.”

Psychiatrist Esther van Fenema has the same concern: “I think that after a euthanasia, you have to count on the same effect as with a suicide.” Her cautious hypothesis: “Patients can ‘ignite’ each other with suicide. Whether that works the same way with euthanasia has never been demonstrated, but indeed, it sounds logical.”

The end-of-life clinic is not so sure about that. “We have not done any research on this, but emotionally I would rather think that euthanasia in the environment leads to less instead of more suicides”, a spokesman responds. “It shows that there is a more humane way to die than the way of the violent, lonely suicide.”

The Recorder

Désirée said herself that she found it now going a bit fast. Me too. Way too fast. What else had she still wanted to do? 

What were her dreams? What would she want to do if this wasn’t it, if she was healthy, healthier?

There they stand, in Désirée’s living room, the husband and some friends, drinking wine while crying.  Désirée loves her wine. The doctors initially had trouble finding a vein to insert the infusion. Cornelia picks up her recorder and plays ‘Nun komm, der Heiden Heiland’ [now come, Gentile Saviour] , a song of salvation.

Because, she says later, “Désirée did not want to die, she wanted to get rid of her suffering.” When her friend has taken her last breath, Cornelia’s friend comes to pick her up. She feels sad, but also relieved, because she is still alive. She had this delusional thought that she would also be put on the drip.

I would have preferred to tear the mourning card into pieces. It reflected so much misunderstanding. Should I ever succumb to my death wish (which is rather unwavering, but fortunately not the only thing I have), then I hope that my mourning card will say: “We never supported you in your choice, you are too valuable for that.”

After her friend is deceased, Cornelia feels worthless. “That she got euthanasia, reflected for me a judgment. I suffer from life in the same way as she does, so am I still allowed to live? Am I not too much a burden on society? Is there a place for people like me? “By writing everything down, it became clear to me: the real problem with this is hope; and that hope was taken away from me by her death.”

Psychiatrist Van Fenema can very well imagine this. Together with Bram Bakker she organized a petition against euthanasia in psychiatry. “I recently received an email from a patient who wrote: “Please, if I am gloomy and go to the End-of-Life clinic, protect me against euthanasia. ”

Prior to that, Van Fenema had never thought about it, she says, that the threat emanating from euthanasia can be very real for patients. That they want to fight for their lives, but cannot stand up for themselves. That they feel less valuable because patients to whom they relate get euthanasia.

This does not happen just like that. In 2017 psychological problems were the reason for euthanasia 83 times, in 2016 it was 60 times. Physicians can only grant euthanasia to psychiatric patients if they can see no new treatment options. There are strict rules for that.

“We do see that the demand of one patient in a department sometimes also encourages other patients to talk about euthanasia and possibly also to formulate a request with the End-of-Life Clinic, where every request is checked to see if it meets the legal criteria,” says the spokesman for the End of Life Clinic. “Only about 10 percent of the requests are honoured.”

“Still, it remains a subjective judgment,” Van Fenema says. “It is very different than when someone has a metastatic form of lung cancer, and patients may wonder: why one person and not the other? This can cause uncertainty and anxiety.” But discussing a death wish can also yield something, says the spokesman for the End of Life Clinic. Because some people precisely abandon the idea of euthanasia after conversations, grateful for the intensive and open conversation.

Why do I continue to stick to life like that? “Life may not be worth it, but I think that it demands perseverance”, I said to Désirée a few months ago. Why am I so restless about your early death? After all, you became twenty years older than I am now. You fought twenty years more than I. Perhaps I will be as tired as you when I reach your age. Maybe I will understand you then. But perhaps I already understand you better than I want.

In the News

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients, says director Jan Mokkenstorm. When the subject is in the news, the helpline receives many phone calls from people with suicidal thoughts who refer to it.

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients

He finds it worrisome. “I have said this from the very beginning when the end-of-life issues were on the political agenda. Also during a roundtable discussion about the end of life of psychiatric patients. In my opinion, we have to discuss this cautiously. And I also said that you have to know what you’re doing when you have this conversation publicly or through the media.”

According to Mokkenstorm, not only the euthanasia of fellow patients can lead to suicide, but the media attention to “completed life”, powders, and pills also plays a role. “Psychiatrists have known about this effect for a long time. I hope we do not have to wait five years for the definitive research on this, in order to find out that we have to deal with it more prudently.”

Mokkenstorm often receives compliments from psychiatrists abroad, because of the good work that 113 is doing in reducing suicide. “But they also say: it’s a shame that you work in a country where they have thrown death into advertising.”

It is promising that, in contrast with the trend toward end-of-life in psychiatry, the so-called recovery idea is also gaining in popularity, says Professor Van Os. “If the symptoms of a mental illness do not completely disappear, that does not have to mean the end. You can also make a mental effort and say: I am going to try to find a way to find meaning despite the voices, depressions, or fears. ”

Is there enough attention to this in current psychiatry? “It is difficult to introduce that philosophy in a mental health care system that is increasingly embracing a market model. That model focuses on removing symptoms, not the recovery of perspective despite symptoms. If you don’t help patients to find perspective, they are going to experience hopelessness. In this situation, the idea of ​​euthanasia finds a fertile ground.”

If you don’t help patients to find perspective, they are going to experience hopelessness. In this situation, the idea of ​​euthanasia finds a fertile ground.

Things are not going so well with Cornelia now. She keeps writing letters about euthanasia and still has the desire to disappear. She is treated by a fine psychiatrist, but she distrusts him. “Is it for real, what is happening in the consulting room, or is there really no hope left for me and are they just ticking off all therapies until I finished them all?”

I understand why Désirée was tired of this struggle. I am tired of it too. The difference between us may be that I try to live with this inner world. That I choose to make a small peep hole in the soot that blackens the windows.

(Cornelia is only mentioned with her first name because of her privacy. Her entire name is known to the editors.)

Talking about suicide is possible through emergency and prevention phone lines. Website with contact information for crisis centres with helplines in all Canadian provinces: https://suicideprevention.ca/need-help/

Ontario Mental Health Helpline



Boudewijn Chabot, “Worrisome Culture Shift in the Context of Self-Selected Death” (translation)

(NRC Handelsblad June 16, 2017; for the original version, click here)

(translation Trudo Lemmens)

Message for the government coalition negotiation table

The Euthanasia Law does not provide protection to people with dementia and psychiatric problems, says Boudewijn Chabot. “Silently, the foundation of the law is being eroded.”

Boudewijn Chabot is a geriatric psychiatrist and researcher of voluntary end-of-life choices.

About twenty years ago, I was sitting on the bench for the accused in the High Court. This was ten years before the adoption of the Euthanasia Act, after I had given a fatal drink to a 50-year-old, physically healthy social worker. Judgment: ‘guilty without punishment’. I fought – and fight- for self-determination. However, I am now worried about the rate at which euthanasia is performed on demented and chronic psychiatric patients.

Recently, the third evaluation of the Euthanasia Act, which came into force in 2002, came out. And like the previous evaluations, the tone was positive. “The goals of the law have been realized. All actors are satisfied about the content and functioning of the law.” That sounds all very well, but it’s not. Since this contentment hides problems which the researchers fail to mention.

To understand what has gone wrong, the reader must know the three most important “due care criteria” of the law. There must be: 1) a voluntary and deliberate request; 2. unbearable suffering without prospect of improvement; 3. No reasonable alternative to euthanasia.

The second and third requirements are closely linked because if another solution, such as specialist palliative care, is indicated, the suffering is not without prospect of improvement. If the patient refuses that option, the physician will not be convinced of the “unbearable” nature of the suffering and will not provide euthanasia.

At least as important is what is not in the law. There is no requirement that the disease has to be physical, and the doctor need not have a treatment relationship with the patient. Many doctors and lay people thought this was the case. But such restrictions are deliberately omitted to allow for the development of concepts such as “unbearable suffering without prospect of improvement.”

In the last ten years, the number of euthanasia reports has increased from two thousand to six thousand per year. People ask for it more often, doctors are more often willing to provide it, and consultants who assist the doctors give more often the green light. In 2016 the review committee found that only 10 of the 6,091 (0.16 percent) cases was done without due care.

Screen Shot 2017-06-19 at 5.16.26 PM

All of this indicates a shift in culture in relation to self-selected dying under the custody of the doctor. Apparently doctors heed the increasing demand for euthanasia in the context of all kinds of nasty diseases, particularly cancer. In and of itself, this increase does not disturb me – even if the number exceeds ten thousand in a few years.

What does worry me is the increase in the number of times euthanasia was performed on dementia patients, from 12 in 2009 to 141 in 2016, and on chronic psychiatric patients, from 0 to 60. That number is small, one might object. But note the rapid increase of brain diseases such as dementia and chronic psychiatric diseases. More than one hundred thousand patients suffer from these diseases, and their disease can almost never be cured. Particularly in these groups, the financial dismantling of care has affected patients’ quality of life. One can easily predict that all of this could cause a skyrocketing increase in the number of euthanasia cases.

Strikingly, doctors from the End of Life Clinic Foundation* are often euthanizing these patients, while as a matter of principle they never treat patients for their illness. By 2015, a quarter of euthanasia cases on demented patients were performed by these doctors; in 2016 it had risen to one third. By 2015, doctors of the End of Life Clinic performed 60 percent of euthanasia cases in chronic psychiatric patients, by 2016 that had increased to 75 percent (46 out of 60 people).

There appears to be a realization that something is going wrong, because the review committee has recently been strengthened with a few specialists in the field of geriatric medicine and psychiatry. However, their vote will be lost in the choir of the forty-five commissioners who are responsible for the current ‘jurisprudence’.

These figures also cannot be found in the annual report of the committee or in the statistical tables of the researchers. For sure, the fact that in 2016 euthanasia has been granted to a total of sixty psychiatric patients is included in the annual report of the review committee. But nowhere in the report is it mentioned that in 46 of these cases, it was a physician at the End of Life Clinic who granted the request. That number you have to dig up from the annual report of the End of Life Clinic. Is this fog purely coincidental?

Cornerstone of the law

Is it still possible to put a break on this development? It won’t come from the review committee, which cannot go back on its ‘case law’. Already back in 2012, at the time of the second review of the law, it became apparent that the review committee no longer discussed whether the due care criteria of “unbearable suffering without prospect of improvement” were fulfilled. The committee members found this difficult to evaluate, as was already apparent from the previous review of the law: “If the notifying physician and the consultant found the suffering to be unbearable, who are we to say something more about it here?”

The interpretation of this cornerstone of the law already came down to what the doctor and consultant accept as unbearable suffering without prospect of improvement.

This is also clear from the reviews. In 2016, the committee found in only one of the 201 cases of euthanasia in dementia and psychiatry that the evaluation had been careless [not in line with due care] because the requirement of “unbearable suffering” had not been met. What problem is this evaluation structure, which costs about four million euros annually, really solving? The researchers fail to answer this question.

Once upon a time, moving to a nursing home or receiving treatment with some medication was still considered a “reasonable alternative” for euthanasia. At least it had to be tried. Many doctors now accept that a patient can refuse a reasonable alternative and that this does not create a barrier for euthanasia. That brake has now also disappeared.

In the Chabot judgment, the Supreme Court had still required “exceptionally great caution” with respect to psychiatric patients. Those words are now trite, because a reasonable alternative to death can now be refused and the committee will still provide its stamp of approval that the euthanasia was done with due care. This has been the case for many years, since already at the time of the previous evaluation of the law the majority of the review committee did not find that doctors were too easily accepting that patients reject a reasonable alternative.

Within the End of Life Clinic, a group culture has emerged in which euthanasia is regarded as virtuous labor

Ethicist Govert Hartogh, who has for many years been a member of the Evaluation Committee, has identified this subtle but steady process of erosion: “The patient suffers unbearably when he says he suffers unbearably and an alternative is not a reasonable alternative if the patient rejects it. In fact, these requirements then add little to the requirement of a voluntary and thoughtful request.”

The erosion of nice words reminds us how it has gone with the abortion law. In order to get abortion, a woman had to be in an “emergency” situation. Soon every woman knew that she got what she wanted if she requested it and rejected any other solution. The Dutch legislature has often been creative in areas of morality, with big words that, after a while, completely lost their bite. Consider the “enduring disruption” that was required for divorce.

The fading of legal requirements does not have to be a problem. Sometimes this leads to an amendment of the law, such as with “enduring disruption.” Sometimes we also accept that the core idea behind the law has shifted to favour self-determination, such as in the case of abortion. The problem is, however, that the euthanasia committee continues to speak of “unbearable and hopeless suffering” in its annual reports, as if these words still really have great weight.

While researchers are pointing to the growing emphasis on self-determination, they fail to mention the erosion of the two other legal requirements. Silently, the very foundation of the law is eroded.

The doctors working within the End of Life Clinic consider themselves at the “forefront” and call the clinic a ‘centre of expertise’. Unfortunately, there is very little expertise in palliative care, for the simple reason that when a patient rejects treatment it is accepted as an expression of self-determination.

In 2016, about 40 physicians working part-time at the End of Life Clinic performed euthanasia 498 times. On average, this amounts to 12 euthanasia’s per doctor, one per month. Within the clinic, a group culture has emerged in which euthanasia is considered to be virtuous labour, especially in severe dementia and chronic psychiatric patients. The fact that the End of Life Clinic also rejects many requests is thereby irrelevant, since many people who do not at all qualify for euthanasia contact the clinic.

What happens to doctors for whom a deadly injection becomes a monthly routine? They are surely well-intended, but do they also realize how they are fanning a smoldering fire that can become a blaze because they fuel the death wish of vulnerable people who are still trying to live with their disabilities?

The End of Life Clinic is now actively recruiting psychiatrists. It justifies this by pointing to the long waiting list. Their task: relieving the unbearable and unrelievable suffering from psychiatric patients through euthanasia. Every time the Clinic is in the news, a wave of depressed patients whose treatments are allegedly exhausted but many of whom have never been properly treated report to the Clinic. Ever since budget cuts turned chronic psychiatry into a diagnosis-prescription business, good treatment has become scarce.

The newly recruited psychiatrists won’t need to enter into a treatment relation with the patient. The evaluation committee has accepted that in the case of severe physical illnesses. Now it has also applied this to incurable brain diseases—without discussing it with members of the psychiatric profession by the way.

Ever since budget cuts turned chronic psychiatry into a diagnosis-prescription industry, good treatment has become scarce.

This has been an overly hasty step. Without a therapeutic relationship, by far most psychiatrists cannot reliably determine whether a death wish is a serious, enduring desire. Even within a therapeutic relationship, it remains difficult. But a psychiatrist of the clinic can do so without a therapeutic relationship, with less than ten ‘in-depth’ conversations? Well …

With dementia there is another concern. The Euthanasia Law has added that a written letter of intent may replace an oral request, while the other due care criteria remain applicable. According to ethicist Den Hartogh, this implies that for a demented patient, two of the three due care criteria disappear—the requirement of a well-considered request and the requirement that reasonable alternatives have to be tried—because they cannot be applicable.

What remains is the requirement that there should be unbearable suffering that cannot be alleviated. But it is often very hard to determine whether there is unbearable suffering in advanced dementia, as five professors of geriatric medicine recently stated in NRC. The personal colouring of ‘suffering’ in dementia plays a major role.

Yet, that uncertainty doesn’t appear to be a problem for the review committee. When a physician and a geriatric specialist note in their report that a person with dementia suffers unbearably, the committee may occasionally ask a question about that, but it doesn’t cause any further problems.

With the erosion of the concept of “unbearable suffering” and the determination that a written consent is the same as an oral request, the door has been opened wide for euthanasia of patients with severe dementia.

Yet, we still face a formidable obstacle in the context of severe dementia: how do you kill someone who does not collaborate because he has no realization of what will be happening? Already in 2012, NRC described how this works. A spouse mixed sleep medication in the porridge of his demented wife before the GP arrived with his deadly syringe. At the time, the review committee failed to mention anything about this assistance. In later cases of euthanasia with advanced dementia, the committee also remained silent about the precise details of the execution.

In 2016, there were three reports of euthanasia of deep-demented persons who could not confirm their death wish. One of the three was identified as having been done without due care; her advance request could be interpreted in different ways. The execution was also done without due care; the doctor had first put a sedative in her coffee. When the patient was lying drowsily on her bed and was about to be given a high dose, she got up with fear in her eyes and had to be held down by family members. The doctor stated that she had continued the procedure very consciously.

Thus, a doctor can kill someone surreptitiously, because you cannot resist after being sedated. If necessary, physical force is used. A large group of doctors called this “sneaky” and published a full-page advertisement, including in NRC, letting our society know that they will not do this.

History repeats itself

In the third review of the law we can find the following remarkable sentence about the surreptitious administration of a fatal drug: “This can in those cases be inherent to the nature of the situation and has not been previously considered a problem.”

The surreptitious administration of medication has previously occurred, but has never been mentioned in an annual report. That is odd, because the committee queries doctors relatively frequently about the medications they administered and judges deviations from the Euthanasia Directive relatively frequently as careless. In a deeply demented person, we are dealing with a morally problematic act: how do you kill someone who does not understand that he will be killed? Remaining silent about the precise way of execution appears very far removed from the transparency that the committee expects of doctors.

The researchers compare this form of cover-up to be “inherent to the nature of the situation”. When it comes to the killing of a defenceless human being, everything that is deemed “inherent to the situation” should be very clearly identified in the evaluation and in the annual report. The review committee has failed in transparency, for five years now. And the researchers smoothen this out.

Would the Public Prosecutor’s Office now take up its responsibility after being laid back about it for fifteen years, and submit the case to the court? Earlier, when the review committee considered in one euthanasia case that due care had not been met for all three legal requirements, the public prosecutor failed to prosecute.

In the context of severe dementia, the following legal questions can only be answered with authority by the Supreme Court: can people be killed surreptitiously? Isn’t that a form of duress, since any possible resistance is being prevented? Isn’t it precisely when we’re dealing with a defenceless person that any hint of coercive force must be avoided?

In the case of the woman who got up with fear in her eyes, the public prosecutor can launch an appeal in the interest of the law. He can then submit the matter directly to the Supreme Court. I think that the public prosecutor will very likely take a wait and see approach. In that case, geriatricians, for whom clarity on this legal question is of utmost importance, can appeal the decision not to prosecute in a court of law.

History repeats itself when it comes to laws dealing with challenging ethical issues. Self-determination around the end of life is for many people as important as in the context of abortion. It is therefore not surprising that the first due care criterion, a voluntary and well-considered request, has gained in importance. And that criterion has pushed the other two due care requirements to the margins. What is astonishing is that in the third evaluation of the law, the researchers still keep up the smoke screen around ‘unbearable suffering without prospect of improvement’.

Where did the Euthanasia Law go off the tracks? The euthanasia practice is running amok because the legal requirements which doctors can reasonably apply in the context of physically ill people, are being declared equally applicable without limitation in the context of vulnerable patients with incurable brain diseases. In psychiatry, an essential limitation disappeared when the existence of a treatment relationship was no longer required. In the case of dementia, such a restriction disappeared by making the written advance request equivalent to an actual oral request. And lastly, it really went off the tracks when the review committee concealed that incapacitated people were surreptitiously killed.

I don’t see how we can get the genie back in the bottle. It would already mean a lot if we’d acknowledge it got out.

(*note translator: The End of Life Clinic (official name: Stichting Levenseindekliniek) offers access to euthanasia to patients whose own physicians have denied their request for euthanasia. For more information on the organization, click here)

Victor Lamme, “The Practice of Euthanasia Has Landed on A Slippery Slope. Huppakee Weg!” [Hoppity gone] (transl. op-ed Volkskrant)

Huppakee Weg [Hoppity Gone]!

The Monday evening NTR broadcast of the documentary about the End of Life Clinic shows, according to Victor Lamme, professor of Cognitive Neuroscience, that the Dutch euthanasia practice is on a slippery slope.

Victor Lamme is Professor of Cognitive Neuroscience at the University of Amsterdam (UvA) and the author of, among other things, “De Vrije Wil Bestaat Niet”

[translation TL: click here for the original version]

February 16, 2016

In a documentary broadcast Monday by NTR, the End of Life Clinic very proudly presented three cases of euthanasia. Excerpts of this documentary had been shown earlier in the programme The World Keeps Turning, where the clinic’s work was highly praised; how ‘beautiful’ it all was. ‘Horrible’ seems to me the more appropriate term.

The euthanasia doctor found in her pronunciation of the word ‘huppakee’ [hoppity] sufficient evidence for a clearly present desire to die

It has become very clear now that the Dutch euthanasia practice has landed on a slippery slope and is now used to solve very different problems than unbearable suffering. A most obvious case in point was that of Hannie Goudriaan, a woman with semantic dementia. This woman had written a will in 2010, in which she had declared that she no longer wanted to live if as a result of her dementia she would no longer know who she was and would be housebound. The End of Life Clinic decided that this point had been reached. They got strong support from the husband, who spoke for her.

Anyone who has seen the documentary could feel the pressure Hannie was under to stick to her once completed advance directive. She was able to drive, visit a skating competition, and have a drink in a pub. But her husband had no intention to visit her if she would end up in a home, and the euthanasia doctor found in the pronunciation of the word ‘huppakee’ sufficient evidence for a clear and present desire to die.

The disappearing desire to die

Should we keep people with dementia to their previously completed Living Will? Many people resent the prospect of dementia. It is therefore increasingly common to prepare an advance directive like Hannie did. What is thereby forgotten is that once that time has come, this desire to die most often disappears, and demented elderly are often far from unhappy.

A comparable situation – and easier to investigate – is that of patients with locked-in syndrome, a brain injury that causes total paralysis and whereby people can only blink their eyes. Nearly every normal person says that if he would ever end up in this situation, he would like to put an end to his life. It appears, however, that these patients rate their quality of life on average with a 7, similar to the score given by the average student. People simply adapt very quickly to a new situation, how miserable that situation may be.

In addition: dementia changes the brain. He or she thus becomes literally a different person; with other norms, feelings, and desires. He is then simply no longer the person who signed at one point in the past the advance directive. To hold demented people to their living will is as weird as saying to an 18-year old that he must become a fireman, simply because he said that once when he was eight years old. People change, and nowhere faster than in the context of dementia.

Euthanasia Marketing

Finally, it is highly questionable how ‘free’ people are when they complete such an advance directive. The pressure on the elderly is continuously increasing. They are being told that health care costs are being wasted in the last years of life, and that they wouldn’t want to be a burden on their children. And that it is really so very ‘beautiful’ to take matters into your own hands.

The elderly are being told how ‘beautiful’ it is to take matters into one’s own hands

That kind of social pressure can become very forceful, consciously or unconsciously; and there is ample scientific evidence for that. Do not underestimate at all the power of the “euthanasia marketing” of recent years, with associations like “Uit Vrije Will”, which do not shy away from using marketing ploys such as the use of celebrity endorsement, proudly displaying Dutch celebs like Hedy d’Ancona, Mies Bouwman, Frits Bolkestein and Dick Swaab on their websites. That way it becomes more or less the norm to end your life when it becomes somewhat less appealing.

What problem is euthanasia really supposed to solve? Elderly take up time, and demand money and effort, which modern society doesn’t want to muster. In the same NTR broadcast we see the centenarian Ans, who fully enjoys a day at sea. Her suffering mostly consist of the fact that no one takes her there anymore. Except on that last day.

It all comes eerily close to the famous scene from the science fiction film Soylent Green, where elderly people are encouraged to commit euthanasia after seeing a movie about how beautiful life on earth once was, a long time ago.

When Hannie gets the lethal injection she says ‘it is horrible’. It is the first time she says something else than “huppakee.” [hoppity] Her last words touch the essence.

Victor Lamme is Professor of Cognitive Neuroscience at the University of Amsterdam (UvA) and the author of, among other things “De Vrije Wil Bestaat Niet”.

[I translated this op-ed using google translate as a rough basis to save time, then corrected and improved the translation based on the original Dutch version]

Chris Rutenfrans: “They Often Arrive Here Waving Their Euthanasia Declaration” (transl. editorial Volkskrant)

[Note: Translation of an op-ed published in the Dutch Newspaper De Volkskrant of 17 February 2016. “Ze komen vaak wapperend met hun euthanasieverklaring binnen”] Screen Shot 2016-02-27 at 12.58.32 PM.png

It’s Euthanasia week. Monday, February 15 NTR broadcasted a documentary “End of Life Clinic” which caused a huge uproar in the (social) media.

Chris Rutenfrans, opinion editor of the Volkskrant. February 17, 2016.

Her doctor refused euthanasia because he never heard from her that she wanted euthanasia or wanted to die.

It is highly questionable whether Marcel Ouddeken and Hans Kema have done a favour to the support for euthanasia with their documentary “End of Life Clinic.” The broadcast by the NTR Monday has evoked so much horror that it could very well be a turning point in the euthanasia debate. Former journalist Wouke van Scherrenburg posted on Twitter: “I’ve dreamed about that woman in the chair and it was a gruesome dream.”

The viewer sees three cases of termination of life by a doctor at the End of Life Clinic, an institution that handles death requests of those whose requests are refused by their family physician (GP). The euthanasia of Hannie Goudriaan touched a particularly sensitive nerve, as is apparent from the responses. Hannie Goudriaan suffers from semantic dementia, a form of dementia that primarily affects the speech center in the brain. Her ability to verbally express herself is limited, and is in the documentary largely restricted to the expression “huppakee, weg!” [hoppity gone]

Her life is terminated on the basis of an advance directive from 2010. It is very obvious that she doesn’t know anything anymore about this. Her family physician has refused euthanasia because he has never heard from her that she wants euthanasia or that she wants to die. He says that he has not been sufficiently supported by the SCEN-physician [note translator: SCEN is the official Dutch Support and Consultation Service for Euthanasia] and the neurologist he consulted. But the doctor of the End of Life Clinic maintains that in the seven conversations he has had with her, she has made it clear to him that with respect to her wish to die by euthanasia, she “knows what she wants.”

Hannie receives, seated in a chair, a lethal dose of medication. Her death takes place in front of the camera. Hans Beerekamp writes in the NRC Handelsblad on Tuesday: “The images of how she receives a lethal injection seated in her armchair at home will be shown around for years to come, at home and abroad. In the Netherlands, the formula ‘Huppakee. Weg” [hoppity gone] now counts as a valid expression when establishing consent, and for determining the presence of unbearable and hopeless suffering.”

This is clearly not an emergency situation of hopelessness. The weekend before her death, you see Hannie Goudriaan enjoying a day at Thialf [note translator: a skating ring] in Heerenveen. You also see how she skillfully drives her car while her husband, who insists on the termination of her life, sits next to her passively, as he has done for 35 years.


Rob Bruntink, a palliative care expert, writes on his blog Bureau MORBidee: “Never before have I seen a euthanasia that looked like an execution. A slaughter. But the husband found it beautiful. And the doctor found it worthy, “because she didn’t snore in the process.”

Bruntink says he can imagine that this documentary can represent a turning point in the thinking about euthanasia in the Netherlands. “Many people call this outright murder. I got a message from my mother with the question ‘was this real or was it fake?’ That is, I think, illustrative of the astonishment this broadcast evoked across the country. ”

Bruntink himself avoids the use of the term “murder”, “because it keeps the discussion away from what it should really be about: do we as a society really want to go in this direction?”

He believes that the supply of euthanasia creates the demand and that it makes other options superfluous. He is convinced that palliative care, where pain management and relief of suffering are central, is less well developed in the Netherlands because of the option of euthanasia.

His work in hospices, specialized in terminal care, have taught Bruntink that people have difficulty judging what they can handle in the future. “At the hospice, they often arrive waving their euthanasia requests, but only one in a hundred will also receive euthanasia. The others find again and again that life is still quite bearable. You could say that euthanasia prevents that people continue to mature.”

Euthanasia prevents that people continue to mature

Bruntink finds the report of the Advisory Committee Completed Life chaired by Paul Schnabel encouraging: “It says that we should worry about each other and increase investment in health care for the elderly, especially for people with dementia and chronic psychiatric patients.”

Chris Rutenfrans is opinion editor of the newspaper.

[Translated by me (TL) with google translation for a rough basis to save time, then correction and improvement of the text]


“Psychological Suffering is Never Trivial” (translation response letter)

This is a response to the letter by Johan Braeckman et al., which itself was a response to a letter by Ariane Bazan et al.. in which the authors argued that the Belgian legislator ought to remove the option to request euthanasia purely on the basis of psychological suffering. This response was published in De Morgen on 14/12/2015

(Google translation was used for a rough basis, and I corrected the text based on my own knowledge of Dutch–my mother tongue)

Psychological Suffering Is Never Trivial

Ariane Bazan (Prof Clinical Psychology ULB), Gertrudis van de Vijver (Prof Philosophy, University of Gent), Willem Lemmens (Prof Philosophy, University of Antwerpen), Maarten Van Dijck (Prof Epistemology & History of Science, University of Gent), Jasper Feyaerts (Clinical Psychologist, University of Gent)

“Don’t trivialize psychological suffering,” Johan Braeckman and others write in response to our open letter, and this is about the best possible outcome we could have expected. It is the very essence of our argument.

We must, however, qualify the distinction objective/subjective as put forward in the response by Braeckman and others. Psychological suffering is obviously a subjective experience, that is clear, but a mental illness is always more than just subjective. The way the illness relates to objective factors is different than in the case of physical disorders. There is no tissue damage, no detectable degradation process in the brain: you cannot see in an autopsy if someone had a depression or not, which you can, for example, in the case of dementia.

But, contrary to what our critics suggest, brain scans do show changes, for example when someone suffers from depression. What is important is that these changes are functional and dynamic: what they show depends on when the scan is taken. They don’t have the irreversible character of tissue damage. Herein lies the fundamental difference with the subjective suffering in the case of physical ailments: you can objectively determine an irreversible process that underlies this suffering.

The person who plunges into a depression falls prey to a real feeling of lack of perspective. Clinical and research experience show, however, that even a succession of major depressive episodes doesn’t imply that the suffering is hopeless.

Suppose someone says, “I have failed in all areas of my life, professional, personal, familial,” and the therapist thinks otherwise on the basis of various specific elements that the patient previously mentioned. Is the only way to avoid being paternalistic or pedantic to simply respond to this patient: “Yes, You are right.”? No, the therapist will both respond to the reality that the patient experiences while also gently suggesting other angles. Clinical care is empathic, indeed, but it is also thoughtful empathy, which involves a gentle invitation to entertain a different perspective. Here, clinical ethics requires to be receptive to the feeling of hopelessness and to acknowledge it, without abandoning the ethical duty to also explore the horizon of other options.

Not trivializing psychological suffering means precisely this: taking account of its uniqueness. The course of a cancer is indifferent to the way the oncologist listens and speaks. Research shows that with mental problems, the relationship between patient and therapist is a decisive factor for the success of the treatment. That constitutes the fundamentally different reality of mental illness. The patient who suffers psychologically is fundamentally attached to the words of the therapist, while the cancer does not care about what the oncologist says.

This brings us to the crux of the ethical basis of the euthanasia legislation: the centrality of the value of autonomy. Testimonials from euthanasia cases involving patients with purely psychological suffering indicate that patients sometimes ask at the last minute: “You are sure, doctor, aren’t you, that nothing more can be done to help me?” Or “You really can confirm that my disease is incurable, isn’t it doctor? ” (see for example the case of Christophe, Knack, 10.22.2014).

This shows how the will of the patient is neither purely autonomous, or undivided, nor unambiguously expressed. In order to recognize the autonomy of a patient, you have to take into account how the will is divided and always probes what the other wants. The patient becomes far more articulate when she is empowered to explore the broad spectrum of her will, with the support of the therapist who continuously invites her to do so. The role of the therapist is in other words never that of a neutral expert who merely confirms the patient’s choice.

Obviously, this problem presents itself in the context of every euthanasia request, but in the context of physical conditions there is an unambiguous limitation as a result of objectively determinable irreversibility. This crucial containment factor is missing here. We are therefore concerned about how the law assigns a position of medical expert to the doctor in the context of issues that primarily concern interpersonal relations. The debate about euthanasia on grounds of mental suffering alone cannot be settled simply by referring to the virtue of diligence and the value of autonomy. Moreover, it is precisely because of the importance of autonomy as a core value that we have to be very careful with how we assign in our legislation an exceptional position to experts.

Even those who are deeply concerned about the right to self-determination should be sensitive to these concerns.

“Don’t Trivialize Psychological Suffering” (translation response letter)

This is a translation from Dutch of a Response by Johan Braeckman et al. to an Open Letter Ariane Brazan et al. re Belgian Euthanasia practices in the context of psychological suffering, published in the Flemish-Belgian newspaper De Morgen 8/12/2015. (see also the translation of the response by Ariane Brazan et al. to this letter, published in De Morgen 9/14/2015)

Don’t Trivialize Psychological Suffering (De Morgen 11/12/2015)

Johan Braeckman (Prof Philosophy University of Gent), An Ravelingien (Ethicist, Bioethics Institute Ghent), Maarten Boudry (Philosopher, University of Gent))

In an open letter, dozens of academics and health care providers voice their concerns about the regulation concerning euthanasia in the context of unbearable mental suffering (DM, 8/12). This concern is undoubtedly well intentioned but nonetheless misguided. The letter writers demand “objective” evidence of the irreversibility of psychological distress, such as an “organic injury or tissue damage.” They expect “factors that are independent of what is subjectively felt on the disease and is thought.” They wan to eliminate euthanasia based on “purely psychological suffering” from the current legislation. Particularly the word “merely” is very significant here.

We believe it is a misconception that only in cases of so-called physical suffering euthanasia is “responsible”. The demand to make suffering (and pain) “objectifiable” is a strange form of positivism and scientism. Do we have to ignore the repeated and clear testimony of people’s psychological suffering and not take it seriously as long as we cannot establish it scientifically? Do we address the ultimate request for help only when a brain scan demonstrates the suffering? The letter writers fail to appreciate not only the professional competence of doctors and therapists who establish the diagnosis, but they also want to turn the clock back by decades, by declaring patients incapable of expressing themselves about the nature and intensity of their suffering.

Hopeless suffering

Of course, suffering is subjective. How else could it be? If a person suffers, he or she is obviously the only one who can reasonably assess this experience. Suffering belongs to a subject. To ignore this subjective dimension showcases a lack of empathy. The letter writers’ comment that they are “alarmed by the increasing trivialisation of euthanasia on the grounds of psychological suffering” is therefore questionable.

In an interview with Bart Schols in The Appointment (8/12), Ariane Bazan, one of the initiators of the letter, refers to an article and the book by psychiatrist Lieve Thienpont, “Libera me: About euthanasia and psychological suffering.” The work of Lieve Thienpont apparently convinced her that euthanasia for psychological suffering must again be banned. That’s remarkable, since the book by Lieve Thienpont makes it precisely all too clear how hopeless the situation is of those who request euthanasia for reasons of psychological suffering. These are people who one often has tried to help for many years, with all the means that medicine and psychological support services have to offer. Some of these patients are so desperate that they commit suicide, with sometimes terrible and dehumanizing consequences.

Do the letter writers really think that the legislator, and the doctors who are willing to meet some (!) requests for help, tread so lightly with the request to bid farewell to life in a dignified manner? That they are not aware of the potential of various therapies and of the strict conditions for euthanasia in cases of psychological suffering? Precisely because psychological suffering is harder to measure, and a specific group of patients is not terminally ill, the legislator has added two additional criteria of good care for these patients to a euthanasia request: a second opinion by a psychiatrist and a minimum waiting period of one month.

The letter writers stick to a general discussion about the “feeling of hopelessness” that people experience when they are depressed, which for them is “in no way proportionate to the real hopelessness of a situation.” But obviously, not everyone with a depression qualifies for euthanasia without further therapeutic intervention. That is obvious. In practice, it concerns in our country about fifty people per year, a tiny fraction of the number of people going through a depression.

The letter writers’ dismissal of the hopeless suffering of this small group of people as “purely subjective”, a feeling that is an inherent part of depression, not only illustrates a lack of empathy; it also amounts to a paternalistic reflex: “You think you suffer hopelessly, but we know better. ” Incidentally, acute depression (eg. through a grieving process) usually interferes with the statutory requirement of voluntariness. In most cases of request for euthanasia, it involves other mental disorders, sometimes in combination with long-term chronic and treatment-resistant depression.

The false distinction between physical and psychological suffering

For the letter writers, the idea that the prospect of death can be part of good care amounts to “the radical failure of the mental health care sector”. This remarkable statement was a few decades ago still an often-heard objection in the euthanasia debate, also in the context of physical suffering, “Death is the enemy of medicine; when a physician reliefs someone from his misery, it means the failure of medical care.” Since then, we have come to know better. Unfortunately, the suffering of some patients is so unfathomably deep, that granting their request for an assisted medical and painless death remains the best thing the health sector has to offer. Ariane Bazan and her co-authors are apparently of the opinion that psychiatric patients’ treatments never end. That comes down to the idea that mental patients have no right to refuse treatment, which is completely contrary to the law on patients’ rights.

The euthanasia legislation is based on some fundamental philosophical principles related to a dignified end of life, in which empathy and self-determination are key. We see no good reason why patients who suffer unbearably psychologically, as unambiguously recognized by competent physicians and in line with the legislation, should be taken less seriously than those who are identified as suffering from a supposedly “objective physical” cause. By the way, people with an incurable physical illness also experience mental suffering. If we follow the logic of the letter writers, one can therefore contest the “unbearable” nature of each euthanasia request, which is a violation of the autonomy and therefore the dignity of any patient requesting euthanasia. The vast majority of caregivers today are not precipitating, nor was the legislator in 2002.

Johan Braeckman (hoogleraar wijsbegeerte, Universiteit Gent)
An Ravelingien (ethicus, Bioethics Institute Ghent)
Maarten Boudry (wetenschapsfilosoof, postdoctoraal onderzoeker, Universiteit Gent)
Etienne Vermeersch (gewezen voorzitter van het Raadgevend Comité voor Bio-ethiek)
Wim Distelmans (prof palliatieve geneeskunde, VUB)
Paul De Knop (Rector, VUB)
Wouter Duyck (opleidingsvoorzitter psychologie, Universiteit Gent)
Freddy Mortier (ethicus, UGent)
Marleen Temmerman (buitengewoon Hoogleraar, Universiteit Gent)
Gwendolyn Rutten (voorzitter Open Vld)
Jacinta De Roeck (gewezen senator en voorzitter van LEIF Antwerpen)
Serge Gutwirth (Professor mensenrechten, VUB)
Tony Van Loon (emeritus moraalwetenschappen, Vrije Universiteit Brussel)
Jean-Jacques Amy (Emeritus Hoogleraar Gynaecologie-Verloskunde, Vrije Universiteit Brussel)
Sonja Snacken (Professor criminologie, Vrije Universiteit Brussel)
Peter Paul De Deyn (Neuropsychiater, Hoogleraar, Universiteit Antwerpen en Groningen)
Paul Destrooper (bestuurder LEIF, Forum Palliatieve Zorg en Zuster Leontine Fonds)
Geert De Soete (Decaan Fac. Psychologie en Pedagogische Wetetenschappen, UGent)
Rik Schots (Professor Hematologie UZ Brussel)
Thierry Vansweevelt (Hoogleraar Medisch recht, Universiteit Antwerpen)
Jean Paul Van Bendegem (filosoof VUB, Brussel)
Marina Van Haeren (algemeen directeur deMens.nu en secretaris-generaal Centraal Vrijzinnige Raad)
Frank Schweitser (Ma Wijsbegeerte & Moraalwetenschappen, Verpleegkundige,
W.E.M.M.E.L. expertisecentrum ‘waardig levenseinde’)
Edel Maex (Psychiater, Ziekenhuis Netwerk Antwerpen)
Sylvain Peeters (psycholoog en voorzitter van deMens.nu)
Patrik Vankrunkelsven (docent huisartsgeneeskunde, KULeuven)
Peter Deconinck (emeritus hoogleraar kinderchirurgie, VUB)
Piet Hoebeke (professor, Voorzitter Medische Raad, Vakgroepvoorzitter Uro-Gynaecologie, Diensthoofd Urologie, UZ Gent)
Mario Van Essche (voorzitter HVV en advocaat, Putte)
Gert De Nutte (algemeen coördinator Humanistisch-Vrijzinnige Vereniging)
Franky Bussche (directeur Studie en Onderzoek deMens.nu)
Guy Peeters (arts, Voorzitter Socialistische Mutualiteiten)
Anne-France Ketelaer (jurist en adjunct-algemeen directeur van UVV/deMens.nu)
Marjan Joris (coördinator De Maakbare Mens vzw)
Frank Christiaens (Anesthesioloog – Urgentiegeneesheer, LEIF-arts)
Stefaan De Smet (lector psychiatrische verpleegkunde en onderzoeker forensische psychiatrie, Hogeschool Gent – Vrije Universiteit Brussel – Universiteit Gent)
Bea Verbeeck (Psychiater-psychotherapeut Brussel)
Liesbet Lauwereys (coördinator De Maakbare Mens vzw)
Gwen Verbeke (LEIF-arts, Palliatief arts-geriater AZ Jan Portaels, Vilvoorde)
Magali de Jonghe (lid van de Federale Controle Commissie Euthanasie, lid RvB LEIF W-VL en vrijzinnig humanistisch consulent huisvandeMens Brugge)
Andrea Thienpont (onthaalmedewerker LEIF GENT)
Mia Fermon (partner van Koen, twee jaar geleden overleden door euthanasie)
Benneth De Proft (bestuur Vonkel en LEIF Antwerpen)
Jacqueline Herremans (advokaat, voorzitster association pour le droit de mourir dans la dignité, lid van de Euthanasie commissie)
Robert Gosselin (radioloog – UZ Gent)
Reinier Hueting (huisarts, LEIFarts, Geraardsbergen)
Ann Staels (klinisch psycholoog, Vonkel)
Tino Ruyters (directeur vzw Free Clinic, Antwerpen)
Robert Schurink (arts, directeur Nederlandse Vereniging voor een Vrijwillig
Marc Tourwé (hoogleraar Universiteit Antwerpen, faculteit Toegepaste Ingenieurswetenschappen)
Christine Demeulemeester (psychotherapeut, Aalst)
Patrick Wyffels (leifarts, huisarts in Halle-Zoersel)
Winne Caemaert (Osteopate)
Jan Bernheim (Professor em. End-of-Life Care Research Group, Faculty of Medicine, Vrije Universiteit Brussel)
Guido Pennings (hoogleraar Bioethics Institute Ghent)
Heidi Mertes (ethicus UGent)
Dirk Demuynck (uitgever)
Brenda Froyen (ervaringsdeskundige, auteur van het boek Kortsluiting in mijn hoofd)
Rahis Remmery (Onthaalmedewerker LEIF GENT)
Hilde Verbruggen (Onthaal medewerker Leif Antwerpen)
André Van Nieuwkerke (Voorzitter LEIF West-Vlaanderen, Eresenator)
Inès Staelens (patiënt, ervaringsdeskundige)
Dominique Lossignol (M.D., Institut Jules Bordet, ULB)
Ann Callebert (klinisch psycholoog – onderzoekster herstel en euthanasie)
Kurt Audenaert (Hoogleraar psychiatrie, Universiteit Gent)
Erik Struys (bestuurder vzw Omega)
Bert Coessens (Sympathisant Vonkel)
Frank Vandendries (moreel consulent, levenseindecounselor Zuid-Nederland)
Rik Achten (Voorzitter Breinwijzer VZW, Diensthoofd radiologie UZGent)
Marleen Peters (projectleider en publicist, gespecialiseerd in het zelfgewilde levenseinde, Amsterdam)
Erna Van der Auwera (onthaalmedewerker LEIF Antwerpen)
Willy Depecker (psychoanalyticus-psychotherapeut, Brugge)
Dirk Devroey (professor, voorzitter vakgroep huisartsgeneeskunde en chronische zorg VUB)
Gaston R. Demarée (KMI-wetenschapper op rust)
Charles Susanne (prof. antropologie, VUB)
Nathalie Albert (ervaringsdeskundige Alexianen Zorggroep Tienen)
Elke Gyselaers (ervaringsdeskundige, Licentiaat Moraalwetenschappen, VUB)
Bart Callebert (ervaringsdeskundige, Gent)
Jasmien Caemaert (maatschappelijk werker)
Kathleen Van Steenkiste (vrijzinnig humanistisch consulent)
Simon Van Belle (medisch oncoloog, U Gent / UZ Gent)
Karl Laurent (Moreel Consulent Luchthaven Zaventem)
Diana Van de Gracht (vrijwilligster bij ,,Netwerk Levenseinde” in Oudenaarde)
Frank Heyvaert (LEIF arts voor LEIF Antwerpen)
Luc Proot (coördinerend LEIFarts LEIF West-Vlaanderen)
Louisette Vervaet (vrijwilligster verschillende organisaties, eredirecteur)
Peter Theuns (Hoofddocent statistiek en deontologie, Vrije Universiteit Brussel)
Gert De Rouck (informaticus)
Petra de Jong (voormalig directeur NVVE)
Arnold Decraene (huisarts, Lede)
Edward Keppens (emeritus professor, Vrije Universiteit Brussel)
Koen Titeca (psychiater, Kortrijk)
Rita Thienpont (vrijwilligster LEIFpunt Gent/VONKEL)
Wim Betz (arts, professor emeritus VUB)
Geert Derre (zelfstandig psychotherapeut, bestuurder Vonkel en onhaalmedewerker Leif Gent)
Hilde Borms (vrijzinnig humanistisch consulent)
Gustaaf Cornelis (wetenschapsethicus, Vrije Universiteit Brussel, Universiteit Antwerpen)
Jeannine Bellaert (LEIF-W.VL., Coördinator vrijwilligers)
Sigrid Lauwereys, vrijzinnig humanistisch consulent, Aalst
Serge Coopman (arts, Skin & Laser Clinic, Antwerpen)
Gerard De Fré (Psychiater, Aalst)
Mia Voordeckers (Radiotherapie/Leifarts UZ Brussel)
Jurgen Slembrouck (moreel consulent, Antwerpen)
Bart De Schutter (ere-rector VUB)
Pierre Martin Neirinckx (moreel consulent, criminoloog)
Ton Vink (filosoof en counselor, Nederland)
Ruddy Verbinnen (arts, bestuurder van de vzw Omega en Algemeen Coördinator van de Universitaire Associatie Brussel)
Roos Deschamps (ervaringsdeskundige)
François Pauwels (LEIFarts, equipearts Omega)
Maridi Aerts (gastro-enteroloog, LEIF arts, Brussel)
Jaak Remes (vrijwillige medewerker LEIF Gent)
Nathalie Vanderbruggen (Psychiater/ psychotherapeut, UZ Brussel)
Fredje Baert (PASS Actief Gent)
Chantal De Poorter (onthaalmedewerker LEIF-Gent – Vonkel)
Els Verbelen (klinisch psychologe te Kalmthout)
Tom Hannes (filosoof & schrijver)
Fred Waumans (socioloog, Hasselt)
Lidia Rura (doctoraal onderzoeker vertaalwetenschap, UGent, ex-partner van een overleden euthanasiepatiënt)
Jos van Wijk – Voorzitter Coöperatie Laatste Wil – http://www.laatstewil.nu
Gert Rebergen – Secr./penningmeester Coöperatie Laatste Wil – http://www.laatstewil.nu
Karen François (hoofddocent wijsbegeerte, VUB)
Cathy Macharis, Professor, Brussel
Karen Verstraeten (psychotherapeute, specialisatie chronisch zieken, Deurne)
Albert Stas (Directeur deMens.nu)
Kristel De Vos (begeleidster volwassenen met een beperking, Lennik)
Mayke Hundhausen (Onthaalmedewerker LEIF Gent)
Colette Raymakers, voorzitter Netwerk Levenseinde, bestuurder LEIF
Michel Flamée (emeritus professor, Vrije Universiteit Brussel)
Laura Michiels (vrijwilligster LEIFAntwerpen)
Steven De Lelie (acteur)
Jean Meurs, Humanistisch-Vrijzinnige Vereniging, Mol
Mia Tytgat, Humanistisch-Vrijzinnige Vereniging, Mol
Klara Jacops (psychologe, Gent)
Patrick Rentmeesters (burger)
Mil Kooyman (Gewezen vakbondsverantwoordelijke, Bestuurder van Woonzorgcentrum Domino)
Herman Thienpont (psycholoog)
Willem Laureys (MD, Omnipracticus op rust)
Elisa Bulckens (criminologe, psychotherapeut, Antwerpen)
Rudi Collijs (lid Liberales, Lochristi)
Michael Portzky (klinisch psycholoog, Gent)
Jan Baccaert (geoloog, vrijwilliger UGent)
Marjorie Vangansbeke (Massage-therapist)
Herbert Plovie (Geneeskeer-Kolonel b.d., Bredene)
Jean-Jacques De Gucht (gemeenschapssenator)
Veerle De Vos (Psychotherapeute en medewerkster Vonkel, Gent)
Philippe Van Cauwenberghe (Psychiater, Gent)
Patrick Simons (Huisarts- Leif-arts – palliatieve equipearts, Halle)
Henri Bartholomeeusen (Président du Centre d’Action Laïque)
Maya Franssens (Klinisch Psychologe-Neuropsychologe en Psychodiagnosticus, Sleidinge)
Asteer Caemaert (ex-psycholoog/psychotherapeut)
Miek Caenberghs (psychologe en familietherapeute)
Joke Denekens (emeritus Hoogleraar huisartsgeneeskunde)
Rika Peters (LEIF-medewerker Gent)
Jelissa Boiy (verslavingsarts Kortrijk en Roeselare)
Joeri Van Looy (Klinische psycholoog en oplossingsgericht systeemtherapeut, Wilsele)
Marijke Mulder (levenseindecounselor en zingevingscoach, Noord Nederland)
Robert Geeraert (bestuurder LEIF)
Det Tacq (psychologe, Gent)
Frank Stappaerts (inspecteur niet-confessionele zedenleer)
Geert Crombez (professor, Department Experimental-Clinical and Health Psychology, Health Psychology Lab, Universiteit Gent)
Ann Naessens (onthaalmedewerkster LEIF Antwerpen)
Hendrik Cammu (professor, arts, VUBrussel)
Hubert Van Hoorde (ereprofessor, Universiteit Gent)
Eddy Van Gelder (voorzitter raad van bestuur VUB)
Michele Leunen (gynaecologe, UZ Brussel)
Sebastiaan Engelborghs (neuroloog en hoogleraar neurowetenschappen, UAntwerpen)
Ann Buysse (hoogleraar psychologie, UGent)
Marie Jeanne Vanrobaeys (zus van iemand die uit het leven stapte op basis van ondraaglijk psychisch lijden)
Carlo Goethals ( leraar, ervaringsdeskundige)
Hugo U. Besard – Kunstenaar/graficus – prof Artesis Plantijn Hogeschool Antwerpen
Monica Verhofstadt (masterstudente klinische psychologie, onderzoekster naar ondraaglijk lijden bij psychiatrische patiënten)
Ann Weckx (scenografe en kunstenaar, verbonden aan Topaz in Wemmel)
Greta Fiers (Oostende)
Piet Van Leuven (emeritus gewoon hoogleraar, Mol)
Vera Rogiers (professor, diensthoofd Toxicologie, fac G&F, VUB)
Guy Hubens (Chirurg Antwerpen, hoogleraar UA)
Bart Keymeulen (Gewoon hoogleraar VUB, Endocrino-diabetoloog)
Els Goderis (directeur huizenvandeMens West-Vlaanderen & ondervoorzitter Leif West-Vlaanderen)
Frank Scheelings (docent VUB, coördinator Centrum voor Academische en Vrijzinnige Archieven)
Carine Vrancken (psycholoog, abortuscentrum Hasselt )
Isabelle Libbrecht (psychiater)
Johan Braeckman (uroloog UZ Brussel, professor VUB)
Mia Taffijn (Verpleegkundige UZ Brussel)
Sven Estercam (arts, diensthoofd en medisch coördinator diensten psychiatrie St Franciskusziekenhuis Heusden-Zolder en Jessaziekenhuis Hasselt)
Charlotte Stolte (Anesthesiste, AZ Nikolaas)
Dirk Avonts (professor huisartsgeneeskunde, Universiteit Gent)
Wim Vandenbussche (hoogleraar Nederlandse taalkunde VUB)
Anouck Debroye (HR Interim Manager & Coach)
Gily Coene (professor VUB)
Magriet De Maegd (Cultureel medewerker in het supportief en palliatief dagcentrum TOPAZ)
Michel De Brabander (huisarts, Humbeek)
Gemma Cogen (verplegende, UZ Brussel)
Frie Blanckaert (gepensioneerd lector Arteveldehogeschool)
Eliane van den Ende (journalist, Beigem)
Theo Compernolle (psychiater)
Mieke VERDIN (actrice, medewerker bij de communicatiemodule van de Leif-opleidingen in Wemmel)
Niels De Temmerman, professor, Vrije Universiteit Brussel
Greet Blanckaert (psychotherapeut, Gent)
Michel Deneyer (docent bio-ethiek, VUB)
Marc Noppen (arts, pneumoloog, CEO UZ Brussel)
Dr. Eric Vandevelde (gynaecoloog, LEIFarts, Ronse)
Jim Van Leemput (ere algemeen directeur VUB, voorzitter Instelling Morele Dienstverlening Antwerpen)
Winnie Belpaeme (vrijzinnig-humanistisch moreel consulente, Gent)
Rik Pinxten (professor emeritus culturele antropologie, Gent)
Hilde Depla (zelfstandig schilder)
Henri Oger (onthaalmedewerker LEIF, Gent)
Tessa vermeiren (journalist met rust)
Pierre Pol Vincke, (zoöloog, gewezen Minister-raad voor Internationale samenwerking FOD-BZ.
Ruth Raes (Coördinator Netwerk Levenseinde, Palliatieve thuiszorg Zuid-Oost-Vlaanderen).
Marianne Marchand (Gewezen Voorzitter Humanistisch Verbond)
Robert Cliquet (prof. em. Antropologie, UGent)
Joris Weyns (LEIF-arts, equipe-arts)
Yves Kengen (Directeur Communication – Médias, Centre d’Action Laïque ASBL)
Katrien Van den Meerschaute (vrijzinnig humanistisch consulent, huisvandeMens, Aalst)
Rita Van der Stoelen (Onthaalmedewerker LEIF, Gent)
Paula Schepens (onthaalmedewerker Leif Gent en Brugge)
Jutte van der Werff ten Bosch (Kinderarts)
Alex Michotte (neuroloog UZ Brussel)
Tine Berbé (vrijzinnig humanistisch consulent, Brussel)
Tim Trachet (VRT journalist)
En: Els Vermeeren, Marc De Waele, Marc Coucke en tientallen andere patiënten, psychologen, therapeuten, artsen, ethici e.a.