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.
- 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>. 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/>.
[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/>. [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.
TrudoLemmens 