For decades, Canadian courts and legislators have grappled with the issue of assisted dying. In 2014, following a years-long consideration of the issue by the legislature and the provincial government, Quebec enacted its Act respecting end-of-life care. Part of this law set out rights with respect to end-of-life care as well as rules relating to “medical aid in dying.”

In 2016, in response to the Supreme Court of Canada decision in Carter v. Canada (Attorney General)^[1](the Carter decision), the Criminal Code (Code) was amended to allow medical assistance in dying (MAID) for individuals whose natural death is reasonably foreseeable (i.e. “track one”), provided that they meet certain criteria. The law was later amended to allow MAID for individuals whose natural death is not reasonably foreseeable (i.e. “track two”). There is no waiting period for people who apply under track one. People who apply under track two have a 90-day waiting period, which can be waived if someone is going to imminently lose capacity to consent to MAID.[2]

Who should have access to MAID in Canada is the subject of fierce debate. How can the law protect vulnerable individuals while at the same time respect autonomy and individual choice? How do barriers to accessing healthcare, social and financial supports potentially affect a choice to seek MAID? Was the expansion of MAID beyond those whose natural death is reasonably foreseeable part of a “slippery slope?” These are but a few of the issues that the Special Joint Committee on Medical Assistance in Dying (the committee) has wrestled with over the last nine months as it undertook its review of the MAID law and its application, which included examining the state of palliative care in Canada, protections for Canadians with disabilities, MAID where mental disorder is the sole underlying medical condition (MAID MD-SUMC), MAID for mature minors, and advance requests for MAID.

During the course of its study, the committee heard from close to 150 witnesses and received more than 350 briefs and other correspondence. The considerable interest in the work of this committee speaks volumes about the prominence this issue holds for Canadians. Witnesses included healthcare practitioners, academics, and lawyers, as well as advocacy and religious organizations. The committee also heard from individuals directly affected by MAID. The committee’s sincere appreciation for those who shared such personal experiences, including stories of loss, grief, suffering and vulnerability, cannot be overstated.^[3]

The committee recognizes that for many individuals, the topic of MAID relates to deeply held moral and religious values. Some Canadians believe that MAID is not acceptable under any circumstances, and some Canadians believe that the current eligibility for individuals with disabilities whose natural deaths are not reasonably foreseeable singles them out. However, others believe that the current MAID law continues to exclude individuals who should have access to MAID, in some circumstances infringing their rights under the Canadian Charter of Rights and Freedoms (Charter). With that in mind, the committee has thoughtfully considered the issues brought forward by witnesses and in briefs and shares its summary of the debates and its recommendations below.

Parliamentary and Legislative Background

In 2015, the Supreme Court of Canada declared in the Carter decision that sections 241(b) and 14 of the Code, which prohibited assisted death, infringed the section 7 Charter right to life, liberty and security of the person.

In response to that decision, Parliament established the Special Joint Committee on Physician-Assisted Dying (PDAM) to make recommendations “on the framework for a federal response.” PDAM tabled its report in February 2016,^[4] and soon after, the government introduced Bill C-14, An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying). The bill received Royal Assent in June 2016, allowing individuals aged 18 or older who have capacity to consent and who have a grievous and irremediable medical condition and whose natural death is reasonably foreseeable to access MAID, provided that certain additional requirements are met.

Bill C-14 required that three key issues that were considered by PDAM—MAID for mature minors, advance requests for MAID, and MAID for individuals where a mental disorder is the sole underlying medical condition (MAID MD-SUMC)—were to be the subject of independent reviews.^[5] These reviews were carried out by the Council of Canadian Academies and released in 2018. Bill C-14 also required that a parliamentary committee review the law (statutory review) five years after Royal Assent.

The Code provisions related to MAID were amended again in 2021 by Bill C-7, An Act to amend the Criminal Code (medical assistance in dying) to allow individuals with a grievous and irremediable medical condition but whose natural death is not reasonably foreseeable to access MAID. These amendments were in response to the decision of the Superior Court of Quebec in Truchon c. Procureur général du Canada (the Truchon decision).^[6] The Truchon decision held that the reasonably foreseeable death requirement under the Code was contrary to the Charter rights to life, liberty and security of the person (section 7) and equality (section 15) and that the end-of-life requirement under Quebec’s legislation was also contrary to the right to equality. The infringements were not justified under section 1. Neither the Government of Canada nor the Government of Quebec appealed the decision in Truchon.

While Bill C-7 initially excluded eligibility for MAID MD-SUMC, additional amendments to the final version provided that an individual would be able to apply for MAID MD-SUMC as of 17 March 2023. The final version of Bill C-7 also required an independent expert review relating to MAID MD-SUMC.^[7]

In addition, as the parliamentary committee statutory review required by Bill C-14 had not yet taken place, section 5 of Bill C-7 required that a joint parliamentary committee be established to review the Code’s MAID provisions and their application, as well as “issues relating to mature minors, advance requests, mental illness, the state of palliative care in Canada and the protection of Canadians with disabilities.”

The statutory review began in May 2021. However, the committee only held a few meetings due to the dissolution of the 43^rd Parliament at the call of the federal election in August 2021. It was re-established in March 2022. The committee released an interim report on MAID MD-SUMC in June 2022,^[8] and the government provided its response to that report in October 2022.^[9]

On 15 December 2022, the Honourable David Lametti, Minister of Justice and Attorney General of Canada, the Honourable Jean-Yves Duclos, Minister of Health, and the Honourable Carolyn Bennett, Minister of Mental Health and Addictions and Associate Minister of Health, released a statement indicating that “our government intends to work with our parliamentary colleagues in the House of Commons and the Senate to negotiate an extension of the March 17, 2023 eligibility date,”^[10] which is the date on which eligibility for MAID MD-SUMC will be permitted. This extension is supported by witness testimony, and the committee endorses this decision by the ministers. Bill C-39, An Act to amend An Act to amend the Criminal Code (medical assistance in dying) was introduced in the House of Commons on 2 February 2023 and proposes a one year delay to the date for eligibility for MAID MD-SUMC.

Systemic and Practical Issues

Who is Accessing MAID?

Dr. James Downar, Critical Care and Palliative Care Physician, told the committee that, for the most part, those who request MAID “almost invariably have excellent access and are receiving palliative care far more than the average population.” Dr. James Downar and lawyer Bryan Salte from the College of Physicians and Surgeons of Saskatchewan pointed to evidence suggesting that those who are accessing MAID in Canada are not marginalized individuals. Professor Constance MacIntosh believed that physicians would be able to recognize cases involving social disadvantage or a lack of supports, and may not approve MAID in such cases. According to Jocelyn Downie, University Research Professor, Faculties of Law and Medicine, Dalhousie University, and Dr. Derryck Smith, Clinical Professor Emeritus, Department of Psychiatry, University of British Columbia, empirical research from several jurisdictions fails to demonstrate that MAID presents a risk to vulnerable populations, including persons with disabilities. These witnesses suggested that, if anything, vulnerable populations face barriers to accessing MAID.

Dr. Harvey Max Chochinov, Distinguished Professor of Psychiatry, University of Manitoba, however, suggested that data in Canada relating to who is accessing MAID is limited at this point since it relates primarily to those whose natural death is reasonably foreseeable.

Nurse practitioner Diane Reva Gwartz pointed to some of the barriers to accessing MAID:

Unfortunately, in many communities [,] institutional policies prevent the provision of MAID to those requesting it. For example, in my community, due to hospital policies and resources, it is difficult to receive MAID in the hospital system. The rehabilitation centre and hospice both have policies that specifically prohibit the provision of MAID in their centres. It is inequitable and unjust that individual institutions are able to establish policies that deprive those who require their services the opportunity to access an assisted death.

She also told the committee that geography can impede access to MAID, and that there is limited awareness of MAID among patients and families. The small numbers of MAID assessors and providers can also limit access;^[11] this challenge is likely to be exacerbated as more individuals become eligible to apply for MAID.^[12] The committee heard that addressing the lack of remuneration for nurse practitioners involved in MAID assessments and provisions might improve access.^[13]

Access to Healthcare

Access to healthcare is one of many social determinants of health.^[14] A number of witnesses commented on how challenges accessing both primary and specialized healthcare affect individuals in the context of MAID. For example, in response to a question about whether he had observed situations in which a patient was informed that there were no doctors available to provide treatment appropriate to their condition and were then offered MAID, Dr. Félix Pageau, Physician, Geriatrician and Ethicist, Université Laval, told the committee that “a contentious case came up in the research I conducted for my master’s degree.” When asked whether there were any statistics available to show the frequency of this happening, Dr. Pageau replied that “[a]ccording to Quebec data, one of the primary reasons why people request medical assistance in dying is that they feel they aren't getting appropriate services or treatment.” The committee notes that this reference to Quebec data conflicts with the 2021–2022 Annual Report of Quebec’s Commission on end-of-life care, which explains that 66% of individuals who received MAID had a cancer diagnosis.[15] In addition, 65% of individuals who received MAID had a survival prognosis of three months or less and 84% of individuals who received MAID had a survival prognosis of one year or less.[16]

As part of consultations with members, Tim Guest, Chief Executive Officer of the Canadian Nurses Association, told the committee that “we heard that limited access to primary care in rural and remote settings has led to patients directly reaching out to urban centres for MAID services.” He also stated that individuals may access MAID sooner than they would have if they had better access to health and social services. Nurse practitioner Julie Campbell told the committee that “[a]s we increase the complexity of patients who may be eligible [for MAID], we need to access expertise in a variety of conditions, including services with significant waiting lists, like specialty pain and psychiatric supports.”

With respect to the social determinants of health, Dr. James Downar told the committee:

I think it's very important to say that we really do need to address social determinants of health, including housing, food security, pharmacare and dental care, because these are important to the health of all Canadians. I think it's important to recognize that these measures are really not about medical assistance in dying at all, because structurally vulnerable individuals are already far less likely to use medical assistance in dying than anybody else. We should do these things simply because they're a good idea and the right thing to do.

Dr. Stefanie Green, President of the Canadian Association of MAID Assessors and Providers (CAMAP), MAID Practitioner, and Advisor to the BC Ministry of Health, explained the challenges inherent to the MAID evaluation process when access to healthcare or other supports is lacking:

what do we do in a situation when someone truly meets the criteria of eligibility for MAID but the clinician believes that maybe something more could be offered that's not actually reasonably available to that patient? That's causing distress in some of my colleagues, and we are not moving those cases forward, but we do ask that the government, federally and provincially, help to fix that situation and help make more robust the resources that can be made available.

According to Dr. Stefanie Green, “MAID and community resources for mental health, palliative care, and disability supports [should] be developed and supported in parallel.”

Psychiatrist Dr. Cornelia Wieman, stressed the importance of understanding “access” broadly:

[It’s] not just having a health care professional team or services available to provide care in a reasonable amount of time. Medical care and attention can be impeded by people choosing not to access services because of, in this instance, anti-[I]ndigenous racism and discriminatory treatment. Indigenous people choose not to access health services out of a fear of how they will be treated.

Jurisdictional Issues and Harmonization

While there is no specific reference to “health” under sections 91 and 92 of the Constitution Act, 1867, section 92(7) gives provinces jurisdiction over most hospitals. Many other health-related matters, such as the delivery of healthcare services, the practice of medicine, and the regulation of health professionals, are also within provincial jurisdiction based on sections 92(13) and 92(16).

At the same time, Parliament can and has exercised its jurisdiction over health matters under its criminal law power (section 91(27)), the federal spending power (section 91(1A)), and its general taxing power (section 91(3)). Through its spending power, the federal government may establish conditions for federal healthcare grants to the provinces and territories, including conditions that are within provincial jurisdiction and therefore cannot be directly legislated by Parliament.^[17]

Several witnesses stressed the need to ensure that MAID-related laws, policies and practices are consistent across the country. Professor Jennifer Chandler spoke to the challenges of harmonization in a federal state. While detailed regulation at the federal level could be viewed as encroaching on provincial healthcare jurisdiction, provinces and territories may develop inconsistent approaches if given too much leeway. Jennifer Chandler saw professional associations such as CAMAP as a promising source for developing a consistent approach to MAID across Canada.

According to Dr. Donna Stewart, Professor, University of Toronto, Senior Scientist, Toronto General Hospital Research Institute, Centre for Mental Health, “[i]t's essential that federal, provincial and territorial governments work to facilitate collaboration between physician and nurse regulatory bodies in the development of standards of practice for MAID.” She suggested that this could avoid cumbersome legislation. Bryan Salte was similarly in favour of relying on the judgment of medical professionals, under the guidance of regulatory bodies:

I am a regulator. I've worked with professional regulation for a long time. One role of professional regulation is to ensure that professional standards are upheld. One concern I would have, if this was incorporated in some form of regulation or statute, is that it is then difficult to change and it really may be quite rigid in terms of how it is addressed. I would support the minimum level of safeguards incorporated into the legislation [….]

In terms of any additional requirements, I think you can rely upon the regulators across Canada to provide guidance, which I think we have done. When we provide that guidance to our members, we say what we expect of them if they are to be involved in medical assistance in dying.

The committee heard that discrepancies in wording between the Code and Quebec’s Act respecting end-of-life care are causing confusion among healthcare providers and patients.^[18] In particular, Dr. Louis Roy, Physician, Collège des médecins du Québec, and Dr. Mauril Gaudreault, President, Collège des médecins du Québec, noted that the Code eligibility criteria refer to “illness,” “disease,” and “disability,” whereas Quebec’s legislation only refers to “illness.” According to Dr. Mauril Gaudreault, this has resulted in more restricted access to MAID in Quebec. The issue of disability as it relates to MAID is discussed in more detail under “Protections for Canadians with Disabilities.”

Catherine Claveau, President of the Barreau du Québec, noted that the Barreau du Québec and other professional associations have asked repeatedly for the Quebec and federal laws to be harmonized. At the same time, she affirmed that provincial and federal jurisdiction over MAID can be exercised concurrently, and urged support for provincial efforts to broaden MAID, such as those underway in Quebec with respect to advance requests.

Monitoring Safeguards and Data Collection

Throughout its meetings, the committee heard how improved data collection could help to evaluate the effectiveness of MAID safeguards. In particular, witnesses recommended improving data collection on access to and quality of palliative care in the context of MAID and in other situations, and access to disability support services. The committee notes that the recent enactment of the Regulations Amending the Regulations for the Monitoring of Medical Assistance in Dying on 1 January 2023 addresses some, but not all, of the concerns raised relating to improved data collection.

It should be noted that in December 2022, Quebec’s Commission sur les soins de fin de vie tabled its annual report which includes data on where palliative care was received.^[19]

Practitioners: Supports, Training, Education and Standards

The committee heard that supports and training for all healthcare professionals are key to the effective, equitable and safe delivery of MAID in Canada.

Tim Guest told the committee that a Canadian Nurses Association study found that some nurses limited their involvement with MAID due to a lack of supports. Diane Reva Gwartz mentioned the importance of administrative supports and community liaison activities. Support also includes appropriate remuneration.^[20]

In a background document, Dr. Gordon Gubitz, Professor, Division of Neurology, Department of Medicine, Faculty of Graduate Studies at Dalhousie University, explains the development of CAMAP’s Canadian MAID Curriculum Project.^[21] This training for assessors and providers considers the needs of Indigenous, racialized, disabled, and marginalized Canadians, and will lead to the development of a “standardized approach to MAiD assessments and provisions across Canada.”

Dr. Mona Gupta, Associate Clinical Professor and Chair of the Expert Panel on MAID and Mental Illness (Expert Panel), indicated the importance of training in the context of MAID MD-SUMC, which the committee also flagged in its interim report on mental disorder. In the government response to the interim report, the federal Minister of Health, the Honourable Jean-Yves Duclos explained that, in addition to funding CAMAP’s curriculum development, the federal government “is actively engaging [provinces and territories] and the Federation of Medical Regulatory Authorities of Canada on the development of consistent practice standards.”^[22] In its brief, the Canadian Medical Association states that its consultations have indicated strong support for the increased clarity and consistent application that clinical guidance would provide.

The committee agrees that the federal government can play a leadership role in the development of practice standards and training. For that reason, the committee recommends

Recommendation 1

That the Government of Canada, in partnership with provinces and territories, continue to facilitate the collaboration of regulatory authorities, medical practitioners and nurse practitioners to establish standards for medical practitioners and nurse practitioners for the purpose of assessing MAID requests, with a view to harmonizing access to MAID across Canada.

Recommendation 2

That the Government of Canada, through relevant federal departments and in collaboration with relevant regulatory authorities, medical practitioners, and nurse practitioners, continue to address the quality and standardization of MAID assessment and delivery.

Engagement with Indigenous Peoples

Some witnesses highlighted the importance of engaging Indigenous Peoples on the topic of MAID. The committee referenced this issue in its interim report in the context of MAID MD‑SUMC:

While the Committee notes that consulting with Indigenous communities on the issue of MAID MD-SUMC was not part of the Expert Panel’s mandate, the Expert Panel stated that “Indigenous peoples in Canada have unique perspectives on death which need to be considered in the context of the emergence of MAID including MAID MD-SUMC. However, engagement with Indigenous peoples in Canada concerning MAID has yet to occur.”^[23]

Dr. Cornelia Wieman agreed that meaningful consultation with Indigenous peoples has not occurred. She emphasized that hearing from Indigenous witnesses during the committee study “cannot be considered to be a fulsome consultation with [F]irst [N]ations, Métis or Inuit.”

Further, Dr. Cornelia Wieman noted that there are diverse opinions among Indigenous Peoples with respect to MAID:

Perspectives on MAID are on a spectrum. I have heard of medically assisted deaths occurring in [F]irst [N]ations communities that are grounded in ceremony, where the whole community is aware of what is happening and the dying person is drummed into the next world. On the other end of the spectrum are those who are still acutely distressed by their individual experiences of historical, intergenerational and contemporary traumas. Their view of MAID is that it essentially amounts to genocide.

This becomes even more complicated when we consider MAID in the MD-SUMC category. There is the potential for the spread of misinformation, as we have seen during the COVID pandemic, to the extent that some people believe [I]ndigenous youth who are suicidal will be able to access MAID. We all know that would not be allowed to happen, but these are reasons why broader engagement is necessary.

Last, I will note the fatigue of [F]irst [N]ations communities associated with engagement and consultation, speaking from my experience in British Columbia. There has been so much going on over the past several years that communities have had to contend with that asking for further consultation at this time on a highly charged topic such as MAID in general, and MAID MD-SUMC specifically, is daunting. First [N]ations communities are more likely to want to discuss the youth suicide crisis than MAID MD-SUMC, and yet they must be consulted.

The government response to the committee’s interim report noted the following with respect to engagement of Indigenous Peoples and MAID:

Health Canada recognizes the importance of meaningful engagement and ongoing dialogue with Indigenous peoples to support culturally safe implementation of MAID. We are committed to working with Indigenous partners to identify and support distinctions-based priorities with respect to an engagement process at the federal level. To date, Health Canada has reached out to National Indigenous Organizations to discuss their preferred role in a national engagement with First Nations, Inuit and Metis on the topic of MAID.

The department will complement any engagement on MAID with existing feedback received from Indigenous organizations from: the process of revising the MAID monitoring regulations (currently underway); previous research into distinctions-based views on end-of-life care; testimony at Parliamentary Committees in relation to MAID; as well as Indigenous Services Canada's engagement processes on the holistic continuum of care and Indigenous Health Legislation. Further, consultation and engagement with Indigenous partners will be informed by any applicable obligations under the United Nations Declaration on the Rights of Indigenous Peoples Act.^[24]

The committee acknowledges the Government of Canada’s commitment to work with Indigenous partners “to identify and support distinctions-based priorities with respect to an engagement process at the federal level,” and wishes to emphasize the importance of periodic reporting on this engagement process. Since this committee is a special joint committee and will cease to exist after 17 February 2023, other parliamentary standing committees should be seized of this issue.

The committee recommends therefore

Recommendation 3

That, every six months, Health Canada provide updates to the House of Commons Standing Committee on Indigenous and Northern Affairs and the Standing Senate Committee on Indigenous Peoples on its engagement with First Nations, Inuit and Métis on the subject of MAID.

Noting that organizations like CAMAP play a key role in the delivery of MAID in Canada, as do provincial and territorial regulatory authorities and provincial and territorial health professional associations, the committee also recommends

Recommendation 4

That the Government of Canada work with First Nations, Inuit and Métis partners, relevant organizations, such as the Canadian Association of MAID Assessors and Providers, regulatory authorities, and health professional associations to increase awareness of the importance of engaging with First Nations, Inuit and Métis on the subject of MAID.

MAID and Prisons

Under the Constitution Act, 1867, the federal government has legislative authority over federal penitentiaries (section 91(28)). The committee heard that, according to the internationally recognized principle of equivalence of care, incarcerated persons should have the same access to healthcare, including MAID, as those living in the community.^[25] However, systemic deficiencies in prisoner healthcare, including palliative care, are well documented.^[26] Law Professor Adelina Iftene noted that dementia and other cognitive impairments are often misdiagnosed in prison due to first responders’ lack of expertise.

Emphasis was placed on the importance of parole by exception (i.e. compassionate release) when considering MAID for prisoners. Under section 121 of the Corrections and Conditional Release Act, parole by exception may be granted in exceptional cases. It may be available to a prisoner who is terminally ill as well as to those not serving life sentences whose health is likely to suffer “serious damage” or for whom continued confinement would constitute “excessive hardship” should they remain in prison.

Associate Professor Jessica Shaw and Adelina Iftene explained that, despite the low risk posed by most prisoners with terminal illness or intolerable suffering, parole by exception is rarely granted in practice. According to Jessica Shaw, two of the three prisoners documented as having received MAID applied for parole beforehand, but were denied. She and Adelina Iftene agreed that parole by exception should be more readily accessible to those seeking end-of-life care, including, but not limited to, MAID.

The committee also heard about the challenges of ensuring that consent to MAID is voluntary in the prison context. Adelina Iftene explained:

I think the conversation is more complicated when it comes to people in custody, simply because there are concerns regarding their ability to provide consent on a free basis. I think that as long as we do not have compassionate mechanisms working for individuals who are experiencing limiting life circumstances or intolerable suffering…to be transferred to the community to make end-of-life decisions there, this conversation is going to be very complicated.

Jessica Shaw noted that the legalization of MAID MD-SUMC presents particular difficulties for prisoners, who may be driven to seek death due to the psychological suffering associated with imprisonment. She stressed the need to distinguish between remediable suffering and incurable mental disorder in this context.

Witnesses also had concerns about the governing policy and process for MAID in prisons. Adelina Iftene worried about a lack of oversight, given that Correctional Service Canada is exempt, in cases of MAID, from its usual obligation to review all deaths in prisons. Jessica Shaw was appreciative of Correctional Service Canada’s development of MAID guidelines but cautioned that they do not align with federal policy in some instances. In a paper prepared for Public Safety Canada, she notes, for example, that the guidelines require a prisoner seeking MAID to meet with the Chief of Health Services prior to being assessed for eligibility, which may amount to a third assessment or at least cause bureaucratic delay. The guidelines also prevent a prisoner from seeking a further opinion if either of the two assessors finds them ineligible for MAID. This is not the case for Canadians outside the prison system, who have the option to seek another assessment if they are deemed ineligible.

The committee agrees that incarcerated individuals should be allowed to receive MAID and related end-of-life care in the community in certain circumstances, with due attention to potential security concerns. For that reason, the committee recommends.

Recommendation 5

That the Government of Canada, through Correctional Service Canada, support approved track one MAID recipients being able to die outside a prison setting only for the event itself and any immediate preparatory palliative care that is required.

Funding

While the provinces have primary responsibility for the delivery of healthcare services, including palliative care, as mentioned above, the federal government plays a role in the financing of such services through health transfers.

The federal government announced in Budget 2017 that it would provide $6 billion over 10 years, beginning in 2017–2018, to the provinces and territories for home care initiatives, which are to include palliative care elements.^[27]

This funding is provided through a separate federal Home Care and Mental Health Transfer to the provinces and territories.[28] All provinces and territories have entered into bilateral agreements with the federal government on how these funds will be spent based on an August 2017 Common Statement of Principles on Shared Health Priorities.^[29]

In December 2018, the Minister of Health tabled the report Framework on Palliative Care in Canada (the Framework), as required by Bill C-277, An Act providing for the development of a framework on palliative care in Canada. In August 2019, Health Canada published the Action Plan on Palliative Care—Building on the Framework on Palliative Care in Canada (action plan). The latter document describes the department’s five-year plan, which includes five goals with various areas for action. Health Canada states that progress will be measured in each area of action by a set of indicators that is to be developed.^[30] The five goals of the action plan are:

• raise awareness of how palliative care can improve quality of life;
• improve palliative care skills and supports;
• improve data collection and research;
• improve access to palliative care for underserved populations; and
• improve access to culturally sensitive palliative care for Indigenous communities.

A number of witnesses noted the importance of the federal role in establishing national standards for palliative care^[31] and expressed the need to provide appropriate funding for the Action Plan.^[32]

Abby Hoffman, Senior Executive Advisor to the Deputy Minister, Department of Health, explained that while there has been increased federal funding for home and community care (which includes palliative care), provinces determine what resources to allocate to palliative care.

Dr. Leonie Herx, Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, Dr. Ebru Kaya, President, Canadian Society of Palliative Care Physicians and Associate Professor of Medicine, University of Toronto, and Dr. José Pereira, Professor and Director, Division of Palliative Care, Department of Family Medicine, McMaster University opined that the provision of MAID has negatively affected resources for palliative care. Abby Hoffman did not think that “money is being diverted from palliative care to the promotion of MAID,” and Dr. Alain Naud, Family and Palliative Care Physician, had not seen evidence that MAID led to reduced funding for palliative care. In response to a question on MAID negatively affecting palliative care funding, Dr. James Downar explained that “the money comes to the provinces and the provinces decide how it’s spent, but there’s never a sort of ‘earmarked’ anything in the physicians’ services budgets anywhere that ‘this goes to palliative care and MAID’ and you have to fight over it.”^[33]

The committee agrees that implementation of the Action Plan on Palliative Care must be adequately funded in order to improve access to palliative care across Canada. For that reason, the committee recommends

Recommendation 6

That the Government of Canada, through relevant federal departments and respecting the jurisdiction of provinces and territories, consider increasing funding for the implementation of the Action Plan on Palliative Care: Building on the Framework on Palliative Care in Canada, and make targeted and sustained investments in innovative approaches and early-stage research aimed at improving health system performance and quality of care for people living with life‑limiting illness and their caregivers.[34]

Access

While Abby Hoffman indicated that MAID and palliative care “are not completely separate and distinct,” other witnesses emphasized the importance of recognizing the distinction between the two.^[35] For example, Dr. Leonie Herx told the committee that “[p]alliative care does not hasten death and is internationally recognized as a practice that is distinct from MAID philosophically, clinically and legally.” Similarly, Dr. José Pereira stated that “[i]t's not only professional societies or associations of palliative care [that make the distinction between palliative care and MAID]; it's also the World Health Organization that doesn't see MAID as part of [palliative care].” Psychiatrist and Associate Professor Dr. Madeline Li told the committee that while “[c]onceptually, MAID and palliative care are arguably distinct…clinically speaking there needs to be better integration to ensure high-quality end-of-life care, with attention to vulnerability.”^[36] Dipti Purbhoo, Executive Director of The Dorothy Ley Hospice, explained that a recent review of their staff showed that 70% of physicians had changed their perspective on providing MAID:

[t]hey’ve seen that MAID can be one of the options in their tool kit as it relates to palliative care… I think they have changed and evolved to consider MAID as one option in the tool box [sic] of options that exist for palliative care versus seeing MAID as something separate and distinct from palliative care.

As part of the eligibility requirements, the Code requires that an individual “give informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care.”^[37] Where a person’s natural death is not reasonably foreseeable, the Code also requires that the medical practitioner or nurse practitioner “ensure that the person has been informed of the means available to relieve their suffering, including, where appropriate…palliative care and has been offered consultations with relevant professionals who provide those services or that care.”^[38] Derek Ross, Executive Director of Christian Legal Fellowship, recommended that individuals should not just be informed of options but also offered consultations with the relevant providers.

Abby Hoffman stated that more than 80% of people who chose MAID had palliative care, and that of those who didn’t have palliative care, the “overwhelming majority” had access to it. She noted that there are gaps in providing palliative care services in people’s homes and that Indigenous communities are significantly underserved.

Speaking to access to palliative care in Canada more generally, Dr. Leonie Herx stated that those who are “poor, [I]ndigenous, homeless, incarcerated or living in a rural area” are less likely to receive palliative care, and that palliative care is only available to 30% to 50% of Canadians. Dr. José Pereira also indicated that only about 15% to 25% of patients have access to specialist palliative care teams. Dr. David Henderson, Senior Medical Director, Integrated Palliative Care Nova Scotia Health, explained that the lack of access to primary care for some patients means that the only way to access palliative care is through emergency departments.

Cheryl Romaire, who was advised that that she was not eligible for palliative care because she did not have a terminal diagnosis, told the committee that regardless of a diagnosis, every patient who is approved for MAID should have access to palliative care. Witnesses also mentioned the lack of paediatric palliative care and palliative care for individuals with dementia.^[39] Paediatric palliative care is discussed further in “Mature Minors” under “Access to Supports and Services”.

Dr. Romayne Gallagher, Clinical Professor, Palliative Medicine, University of British Columbia, indicated that improving access to high-speed Internet would allow for telehealth and improve access to palliative care. Access could also be improved if individuals were better informed about the role of palliative care.^[40] To that end, physician Dr. Marjorie Tremblay proposed a national palliative care awareness campaign.

The committee agrees with witnesses who spoke about the importance of palliative care.^[41] Concerned that Canadians do not have sufficient, equitable access to quality palliative care, the committee recommends

Recommendation 7

That, with the understanding that palliative care is not a prerequisite to access or receive MAID, the Government of Canada work in partnership with the provinces and territories on the following action items:

1. Continue the National Action Plan on Palliative Care: Building on the Framework on Palliative Care in Canada and look into innovative approaches and early-stage research aimed at improving health system performance and quality of care for people living with life-limiting illness and their caregivers.
2. Support the efforts of provinces and territories to develop initiatives aiming to improve home-based palliative care and culturally appropriate palliative care for underserved populations as well as access to this care.
3. Identify ways to improve access to high-quality, culturally appropriate, palliative and end-of-life care, in a timely manner by:
4. • Supporting palliative home care;
   • Supporting specialized paediatric palliative care; and
   • Supporting access to advance care planning.

Data and Research

As mentioned above, one of the goals of Canada’s Action Plan on Palliative Care is to “[s]upport health system quality improvement through enhanced data collection and research.”

Abby Hoffman noted the limitations on information that is currently collected as part of the practitioner reporting requirements when MAID is provided:

We have information about whether the individual has had palliative care, but the extent of that care is not well documented. It is the case in many parts of the country—in most parts of the country, in fact—that there are time limits on palliative care in terms of the amount of care one can get and the proximity to death one anticipates, and so on.

Mike Kekewich, Director, Champlain Regional MAID Network, Champlain Centre for Health Care Ethics, The Ottawa Hospital, told the committee that Health Canada would be collecting additional palliative care data in the future.^[42]

Many witnesses agreed that improving palliative care in Canada involves establishing standards and measuring both access to and the quality of palliative care.^[43] Dr. Leonie Herx proposed “a national system that’s linked to Accreditation Canada’s standards and that’s administered so that provinces collect data on outcomes for patients that is patient-reported.” In addition to measuring the quality of and access to palliative care, Dr. Ebru Kaya indicated the importance of knowing who is providing palliative care to MAID patients. Nurse practitioner Julie Campbell explained that collecting palliative care data outside of the MAID context is also important. In its brief, the Canadian Cancer Society recommended “improv[ing] palliative care research and systematic, standardized data collection by developing data systems to measure access to palliative care, both at home and in community settings such as long-term care facilities and residential hospices.”

Family physician Dr. Pierre Viens noted the importance of a more precise definition of palliative care, particularly for reporting purposes under the Regulations for the Monitoring of Medical Assistance in Dying.

The committee agrees that improving data about access to palliative care and establishing standards by which the quality of palliative care is measured is an important step in improving palliative care. The committee therefore recommends

Recommendation 8

That the Government of Canada, in collaboration with the provinces and territories, work to develop data systems to collect disaggregated data for Black, Indigenous, racialized, disabled, and 2SLGBTQ+ communities beyond the regulations that went into force January 1, 2023.

Training/Accreditation

Witnesses recommended more funding for palliative care training programs, including for specialists,^[44] and that training should include “integrat[ing] a palliative approach to care in all care settings.”^[45]

In its brief, the Canadian Cancer Society recommends that the federal government “[p]rovide all healthcare providers, including allied providers, with appropriate education and training on the basic principles and practices of palliative care to ensure people with cancer receive the highest quality of care.” It also recommends that the federal government “[e]nsure an appropriate level of education and training for healthcare providers and students regarding all facets of end-of-life care, including their obligations and responsibilities relative to MAID.”

The committee agrees that supporting training and education opportunities for palliative care specialists as well as for all healthcare providers is essential to delivering high-quality palliative care.

Existential Suffering

Dr. Nathalie Zan explained that even with optimal palliative care, existential suffering is difficult to relieve. According to Dr. Madeline Li, focusing on psychosocial care within palliative care, such as CALM therapy (Managing Cancer and Living Meaningfully therapy), dignity therapy or meaning-centred psychotherapy helps to address existential suffering. Dr. Harvey Chochinov explained that affirming personhood at end-of-life is important. He also supported dignity therapy and CALM therapy.

The committee heard that psychedelics, psilocybin in particular, could potentially support individuals dealing with existential distress, but barriers prevent patient access. Currently, psilocybin is only available through Health Canada’s Special Access Program. A number of witnesses supported funding for research on psychedelics.^[46] Spencer Hawkswell, President and Chief Executive Officer of TheraPsil and Dr. James Downar both recommended that regulations relating to accessing psilocybin be reviewed.^[47] Dr. Valorie Masuda shared her experience treating patients with psilocybin:

Over the past three years I have legally and successfully treated 20 patients suffering from irremediable demoralization, fear and depression under a section 56 exemption or the special access program. I treat these patients with psilocybin, which is a psychedelic medicine that is highly efficacious and safe. With one treatment I have witnessed a total alleviation of demoralization and fear. It is a treatment that I now offer to patients I see suffering from this kind of distress who may have otherwise accessed MAID.

Dr. Madeline Li, who has applied for Canadian Institutes of Health Research funding to study psilocybin in cancer and palliative care, told the committee that psychedelics are “not going to be the panacea or antidote to MAID in any way,” and that psychedelics would not “necessarily change a patient's mind.”

The committee agrees that the regulatory process relating to promising therapies, such as psilocybin, should be reviewed to identify possible barriers or inefficiencies. The committee therefore recommends

Recommendation 9

That Health Canada review the Special Access Program, other programs and policies, and relevant laws and regulations to determine whether there are ways to improve access to promising therapies, such as psilocybin, for both research purposes and for individual use as part of palliative care supports.

Background

To be eligible for MAID under the Code, a person must have a “grievous and irremediable medical condition,”^[48] which is defined as “a serious and incurable illness, disease or disability” that has led to an “advanced state of irreversible decline” and intolerable suffering.^[49] These provisions follow the ruling in the Carter decision, which held that prohibiting a competent adult from accessing MAID is unconstitutional where, among other things,

the person has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition. [para 4]

As noted in “Jurisdictional Issues and Harmonization,” under Quebec’s Act respecting end-of-life care, eligibility is limited to those with a “serious and incurable illness”;^[50] no reference is made to “disability.”

As discussed in “Parliamentary and Legislative Background,” MAID was initially only available to those whose natural death was reasonably foreseeable or, in Quebec, to those at the end-of-life. In the Truchon decision, however, the Quebec Superior Court found these criteria to be unconstitutional, resulting in the expansion of MAID via Bill C-7. Consequently, MAID is now available to Canadians with disabilities whose natural death is not reasonably foreseeable, at least outside of Quebec, provided they meet all other eligibility criteria.

The committee heard extensive testimony on the socio-economic challenges, and widespread ableism, faced by persons with disabilities. Current efforts to address this at the federal level include Bill C-22, An Act to reduce poverty and to support the financial security of persons with disabilities by establishing the Canada disability benefit and making a consequential amendment to the Income Tax Act, introduced on 2 June 2022 to establish a Canada disability benefit. Eligibility criteria and the amount of the benefit are to be established by regulations (clauses 4, 5 and 11(1)(c)). On 7 October 2022, the federal government also released Canada’s Disability Inclusion Action Plan, 2022. The Plan builds on consultations held from June to September 2021.

The Regulations on the Monitoring of Medical Assistance in Dying require the collection of information about disability support services received or accessible to those who request MAID. On 1 January 2023, these regulations were amended to require additional information, including whether the person requesting MAID has a disability or disabilities, if they consent to provide that information, and about the type of disability support services received.

Balancing Individual Autonomy and the Protection of the Vulnerable

Witnesses held strongly opposing views on how to balance persons with disabilities’ individual autonomy and structural vulnerability. Many felt that persons with disabilities should be treated as individuals, with vulnerability assessed on a case-by-case basis.^[51] Dr. Alain Naud referred to the following conclusion from the Truchon decision:

The vulnerability of a person requesting medical assistance in dying must be assessed exclusively on a case-by-case basis, according to the characteristics of the person and not based on a reference group of so-called “vulnerable persons”. Beyond the various factors of vulnerability that physicians are able to objectify or identify, the patient’s ability to understand and to consent is ultimately the decisive factor, in addition to the other legal criteria. [para 466]

Some witnesses, including some individuals with disabilities, spoke against medical paternalism, underscoring the rights of persons with disabilities to make their own healthcare decisions,^[52] which, according to Colleen Sheppard and Derek Jones,^[53] is consistent with the Charter and the UN Convention on the Rights of Persons with Disabilities. “You have to be able to fully assume your autonomy, during life and at the time of death; there is no greater demonstration of what it means to be human,” stated Ghislain Leblond, Former Deputy Minister. Amélie Duranleau, Executive Director, Quebec Intellectual Disability Society, added that many persons with intellectual disabilities are also capable of making important life decisions, including about MAID.

In contrast, others emphasized the risks of broader impacts of MAID policy on persons with disabilities,^[54] and the duty to protect those who may be vulnerable. Tim Stainton, Director, Canadian Institute for Inclusion and Citizenship, University of British Columbia, felt this duty has been overshadowed by an increasingly individualistic conception of autonomy. According to Sarah Jama, Executive Director, Disability Justice Network of Ontario, persons with disabilities face “systemic coercion” due to the expansion of MAID, and individual rights “should not supersede the harms faced by others.” “What you are doing is going to powerfully affect whether people with disabilities in this country see ourselves as welcomed and valued citizens,” explained Catherine Frazee, Professor Emerita, School of Disability Studies, Toronto Metropolitan University.

Many witnesses—including those supportive of individual choice—questioned whether persons with disabilities, when burdened with socio-economic disadvantages and lacking access to essential supports and services, had meaningful choices regarding MAID.^[55] Ahona Mehdi, Member and Just Recovery Research Lead, Disability Justice Network of Ontario, emphasized the “collective responsibility” to address social circumstances that contribute to suffering. Jocelyn Downie supported the need for better access to supports and services, but advised: “Don’t constrain access to MAID, because you should never make individuals hostage to fixing systemic problems.” Jessica Shaw stated: “[I]f we don't live in a country where people are supported…it still comes down to who decides how long and how much suffering is enough. And I think that rests with the person.”

The committee recognizes that a delicate balance must be struck between promoting individual autonomy and protecting against socio-economic vulnerabilities.

Discrimination and Stigma

The different views on how to balance individual choice and protection from harm were often tied to differing interpretations of discrimination. Many witnesses underscored the pervasive ableism faced by persons with disabilities—compounded by ageism and racism^[56]—in the healthcare system and more generally.^[57] The committee heard about historical and ongoing institutionalization and maltreatment of persons with disabilities,^[58] the lack of infrastructure permitting their equal participation in society,^[59] and the tendency of care providers to underestimate their potential or actual quality of life.^[60]

Some witnesses worried that pre-existing ableism, and other intersecting forms of discrimination, may result in MAID being offered coercively or prematurely to persons with disabilities.^[61] Kerri Joffe, Staff Lawyer, ARCH Disability Law Centre, and Gabrielle Peters, Co‑Founder, Disability Filibuster, noted how this could negatively affect the relationship between patients with disabilities and their doctors. On the other hand, Jessica Shaw believed, based on her research, that medical ableism discourages persons with disabilities from accessing healthcare information and services, including MAID.

The availability of MAID for persons with disabilities was also described as stigmatizing, entrenching the notion that disabled lives have less value.^[62] According to many witnesses, the removal of the reasonably foreseeable death criterion under Bill C-7 has effectively singled out persons with disabilities in a discriminatory manner, making them the only vulnerable group with a “special pathway to MAID”^[63] if they are suffering intolerably.^[64] Krista Carr, Executive Vice-President, Inclusion Canada, explained:

What we're talking about here is that we have two tracks. We have a track for people at end of life who are suffering intolerably and whose lives are going to be finished soon, and they get to choose the timing, etc., but we have this other track that has pigeonholed one particular group of people. Anybody else in the country, by virtue of being any other marginalized population—[I]ndigenous, racialized or whatever—who says they are suffering intolerably from factors that are external to their personal characteristics isn't getting offered death. We're giving them support to live good lives.

Others contended that denying persons with disabilities access to MAID would itself be stigmatizing and discriminatory, because it would imply that they are less capable of making their own decisions about MAID.^[65] As noted by Catherine Claveau, this view aligns with the holding in the Truchon decision.

Access to Supports and Services

A resounding theme throughout the committee’s hearings was the level of socio‑economic disadvantage faced by persons with disabilities—a phenomenon linked to discrimination and stigma, as Gabrielle Peters noted. Witnesses underscored the connection between disability and poverty,^[66] and the need for better social supports such as income assistance and accessible and affordable housing.^[67] Krista Carr stated that 73% of Canadians with disabilities living outside the family home lived in poverty. While legislation to enact a Canada disability benefit is currently before the House of Commons, Tim Stainton opined that it has been slow to move forward.

Witnesses also noted that persons with disabilities face long wait times and high costs for specialized healthcare, and called for better access to services such as pain management, assistive devices, psychiatric and psychological services, counselling, home care, and palliative care.^[68]

The committee heard that persons with disabilities, including young adults, have been forced into institutions due to inadequate home care funding.^[69] While noting the lack of data on institutionalized persons with disabilities, Megan Linton, PhD Candidate, opined that they receive lower income supports than non-institutionalized persons with disabilities, and often live in poorly maintained facilities.

Some witnesses feared that persons with disabilities could be offered MAID in place of supportive, palliative or other care,^[70] and Krista Carr said she had heard accounts of this happening. Witnesses expressed concerns that poor conditions in long-term care settings are driving persons with disabilities to seek MAID instead.^[71] Kerri Joffe relayed having clients who have sought, and in some cases received, MAID due to unmet disability-related needs. Reports of such cases were also referenced by others.^[72] “I think we have created a system where death is easier for people with disabilities … than living with dignity,” stated Associate Adjunct Professor Heidi Janz. On the other hand, Dr. Chantal Perrot made the following comments in a brief submitted to the committee:

I will comment on a patient whose life and death received considerable media attention following her MAiD death. She asked me to advocate for others in her situation. She gave permission to share information about her publicly. This thoughtful, mature, intelligent woman has been mischaracterized as choosing MAiD simply because of lack of housing. Hers was a much more complex and considered decision than media reports suggest. … She wrote a note I received after her death: "…THANK YOU for helping me to end my suffering… for believing that MCS is real, that my suffering is REAL… for continuing to be in my corner, and believe I deserved to have MAiD, rather than trying to persuade me to stay alive… Even if I were to find a medically-safe, affordable home, I would still be isolated from the rest of the community, unable to go into public buildings OR visit friends/family [due to the risk of exposure to triggers]… With my health deteriorating… I made the only decision that I felt was available: I chose MAiD now…".

She has also been mischaracterized as living in poverty. She would be appalled. Yes, she received social assistance, but, apart from not being able to build that safe bubble, she was clear that she had: adequate resources to live; no debt; savings; and financial concerns were not contributing to her choice to have MAiD. Unfortunately, those opposed to MAiD and special interest groups wanting to misuse her life and history have created a false impression of who she was and how she chose to live and die.

According to Dr. James Downar, there is evidence that only a small percentage of people who have received MAID had trouble accessing disability services and palliative care. He stated: “there is absolutely no data suggesting that the practice of MAID at this point is driven to any degree by poor access to palliative care, socio-economic deprivation or any isolation.”

A number of witnesses advocated for MAID to be developed “in parallel” with resources such as mental healthcare, palliative care, and disability supports.^[73] Jocelyn Downie suggested that the current conversation about MAID presents an opportunity to discuss supports for persons with disabilities and mental illnesses in Canada.

The committee is deeply concerned about persons with disabilities’ lack of access to adequate care and support. This issue must be tackled in parallel with improving access to MAID. A person should not be approved for MAID due to socio-economic suffering. For these reasons, the committee recommends

Recommendation 10

That the Government of Canada continue to support persons with disabilities by implementing measures to reduce poverty and ensure economic security.

Eligibility Criteria and Safeguards

While some witnesses viewed the existing eligibility criteria and safeguards as adequate to protect persons with disabilities,^[74] others disagreed.

Many disability rights advocates felt strongly that the reasonably foreseeable death criterion—which they referred to as “the great equalizer”^[75]—must be reinstated to avoid discriminating against persons with disabilities.^[76] “Everyone dies, and this is the only safeguard that removes making value judgments about the worth of disabled lives from the equation,” explained Isabel Grant, Professor, Allard School of Law, University of British Columbia. As acknowledged by Catherine Frazee, however, reinstating this criterion would run contrary to the ruling in the Truchon decision.

Amélie Duranleau emphasized that disability “should never be a criterion for access to MAID.” David Shannon, Barrister and Solicitor, pointed out that a disability cannot be deemed “grievous and irremediable” if disability is understood as rooted in remediable social barriers. Dr. Mauril Gaudreault, on the other hand, supported harmonizing the Quebec and federal statutes so that Quebec residents with disabilities have the same access to MAID as other Canadians living with a disability.

Catherine Frazee recommended clarifying that socio‑economic circumstances cannot form the basis of a request for MAID, since intolerable suffering must be caused by a medical condition under the Code.

As already mentioned in “Palliative Care in Canada,” when natural death is not reasonably foreseeable, the Code requires a person to be “informed of the means available to relieve their suffering” and to be offered relevant consultations for services. In several witnesses’ experience, however, the problem is not a lack of information but rather a lack of access to services.^[77] As explained by Kerri Joffe,

the concern of the clients I've worked with is not so much that they're not being informed of what's available, but it's that they have, for years or months or really extended periods of time, tried to avail themselves of the services that are in fact available to them, and either they have encountered extensive barriers in not being able to access those services or the supports they needed were simply not available.

Bill Adair, Executive Director, Spinal Cord Injury Canada, and Dr. Karen Ethans, Associate Professor suggested that the waiting period for MAID where natural death is not reasonably foreseeable should be longer than 90 days. They explained that patients often struggle with suicidality following a severe injury, and can take years to adapt to their disability, at which point they often report a high quality of life.^[78] David Shannon’s lived experience bore this out. Alicia and Christie Duncan similarly recommended a mandatory waiting period for patients with mental disorders or non-terminal disabilities, with no exemptions, based on their family’s experience with MAID.

Some witnesses supported the establishment of an independent body to review MAID assessments prospectively,^[79] or to provide retrospective oversight of MAID cases.^[80] Others emphasized the importance of improved data collection and monitoring,^[81] including with respect to institutionalized persons with disabilities.^[82] Physician Dr. Ramona Coelho believed that cases of non-compliance with safeguards are not being accurately captured by Health Canada’s monitoring regime, raising concerns about inadequate data collection. Others also raised concerns about non-compliance with existing safeguards.^[83]

Given the concerns expressed by disability rights advocates, the committee feels it is important to clarify that, although persons with disabilities may be eligible for MAID, disability alone is not sufficient to determine eligibility. For this reason, the committee recommends

Recommendation 11

That the Government of Canada, through the Department of Justice, and in consultation with organizations representing persons with disabilities, explore potential amendments to the Criminal Code that would avoid stigmatizing persons with disabilities without restricting their access to MAID. Options considered should include replacing references to “disability” in section 241.2(2) of the Criminal Code, with attention to the potential legal ramifications of such an amendment across Canada.

Need for Consultation

According to Mausumi Banerjee, Director, Office for Disability Issues, Department of Employment and Social Development Canada, the Office for Disability Issues ensures that organizations representing persons with disabilities are engaged in the development of MAID policy.^[84] However, a number of witnesses testified that persons with disabilities have not been adequately consulted on MAID.^[85]

Gabrielle Peters, Krista Carr and Tim Stainton felt that persons with disabilities were not heard in the policy discourse surrounding Bill C-7. Others expressed concerns regarding the role and treatment of persons with disabilities in the current committee’s hearings.^[86] According to Isabel Grant, “ableism, sadly, has also permeated these hearings.” Sarah Jama felt that the committee’s brief submission process was not inclusive of persons with disabilities who may be unable to make written submissions online. Witnesses also stressed the need to hear from Black, racialized, and Indigenous People, as well as youth with disabilities, on the topic of MAID.^[87]

In its response to the committee’s interim report, the government described the following project funded by Budget 2021:

Another project planned in the short term…would focus on the views and experiences of persons living with disabilities that will inform and complement the information collected through the federal MAID monitoring system. This research is expected to generate evidence that responds to the concerns of organizations representing persons with disabilities and inform future policy development.

The committee wishes to acknowledge the importance of ongoing, in-depth consultations with individuals and organizations representing persons with disabilities, including Black, racialized, Indigenous and young persons with disabilities, as MAID laws and policies continue to evolve. For this reason, the committee recommends

Recommendation 12

That the Government of Canada convene an expert panel to study and report on the needs of persons with disabilities as they relate to MAID, similar to the Expert Panel on MAID and Mental Illness.

Background

When the Code provisions relating to MAID were amended by Bill C-7 to include individuals whose deaths are not reasonably foreseeable, eligibility for MAID MD-SUMC was explicitly excluded until 17 March 2023. The amendments included a requirement that experts carry out an independent review “respecting recommended protocols, guidance and safeguards to apply to requests made for medical assistance in dying by persons who have a mental illness.”^[88] That review was carried out by the Expert Panel on MAID and Mental Illness; the Expert Panel’s final report was released in May 2022.

Knowing that witnesses had concerns about whether protocols, guidance and safeguards at the provincial/territorial level would be in place by March 2023, the committee released an interim report exclusively on MAID MD-SUMC in June 2022. That interim report summarized what the committee heard about MAID MD-SUMC in the spring of 2022, including the testimony of Dr. Mona Gupta, Chair of the Expert Panel. The interim report concluded:

[I]f the Expert Panel’s recommendations are to be implemented, the work must proceed quickly as March 2023 is fast approaching. We must have standards of practice, clear guidelines, adequate training for practitioners, comprehensive patient assessments and meaningful oversight in place for the case of MAID MD‑SUMC. This task will require the efforts and collaboration of regulators, professional associations, institutional committees and all levels of government and these actors need to be engaged and supported in this important work.

Although some work is already underway to implement the recommendations of the Expert panel, there is concern that more remains to be done to ensure that all necessary steps have been taken to be ready by the March 2023 deadline when MAID provisions can be considered in the case of people suffering from a mental disorder as the sole underlying cause. We urge the federal government to work with the Provinces and Territories and others to ensure that the recommendations of the Expert Panel are implemented in a timely manner.^[89]

The Government of Canada responded to the interim report in October 2022. Federal Health Minister the Honourable Jean-Yves Duclos indicated that government efforts to implement the Expert Panel’s recommendations have “focused on health system preparedness to address complex MAID cases, including but not limited to those involving a mental disorder diagnosis.”^[90] The response explains that “[w]hile the development of practice standards falls outside of direct federal responsibility, we are leading work with key partners to complete this work in advance of March 2023.”

As mentioned above, on 15 December 2022, Minister Lametti, Minister Duclos, and Minister Bennett announced that they will be seeking to extend the date for eligibility for MAID MD-SUMC. This addresses the committee’s key concern that more time is needed for standards to be developed and training to be undertaken before the law permits MAID MD‑SUMC. Bill C-39, An Act to amend An Act to amend the Criminal Code (medical assistance in dying) was introduced in the House of Commons on 2 February 2023 and proposes a one-year delay to the date for eligibility for MAID MD‑SUMC.

As the themes raised in the fall meetings on mental disorder reflect those heard in the spring and were considered in detail in the interim report, the final report provides a more high‑level synopsis of testimony.

Potential Discrimination

A number of witnesses suggested that not allowing MAID MD-SUMC could be discriminatory^[91] and that a distinction in the law between mental and physical disorders “is unlikely to stand up to court review.”^[92] Referring to the 2020 Supreme Court of Canada decision in Ontario (Attorney General) v. G.,[93] Shakir Rahim, Lawyer, Kastner Lam LLP, told the committee that “the recommendation of the expert panel on MAID MD-SUMC conforms to the spirit and letter of the section 15 (equality) jurisprudence.”

Capacity

Having the capacity to make healthcare decisions is a key eligibility criterion for MAID, and an essential component of informed consent in the medical context more generally. As explained by Dr. Gail Beck, Interim Psychiatrist-in-Chief and Chief of Staff, Clinical Director, Youth Psychiatry Program, Royal Ottawa Health Care Group, capacity requires understanding one’s condition and treatment options, appreciating the implications of the decision, and being able to communicate the decision.^[94] The committee heard that assessing capacity in the context of a mental disorder is routine,^[95] including identifying whether someone is in crisis.

The Expert Panel considered capacity in the context of MAID MD-SUMC, explaining that:

In other areas of practice, difficulties in assessing capacity are not resolved by refusing to permit access to the intervention to all persons or a subgroup of persons. When the assessment is so difficult or uncertain that the clinicians involved cannot establish that a person is capable of giving informed consent, the intervention is not provided. Similarly, the assessors must be of the opinion the person is capable of making decisions about MAID and if the assessors cannot form this opinion, then MAID cannot […]be provided.^[96]

Dr. Georges L'Espérance, President and Neurosurgeon, Quebec Association for the Right to Die with Dignity, put forward the position that “persons with significant cognitive impairment be completely and permanently disqualified from receiving medical assistance in dying, except where there is absolute certainty that the person's decision-making ability is intact.”^[97]

Irremediability

To be eligible for MAID, a person must have a “grievous and irremediable medical condition.” As Jennifer Chandler explained, “irremediable” is not a medical or scientific term. Rather, as noted above, “grievous and irremediable” is defined in the law as incurability, being in an advanced state of irreversible decline, and “enduring physical or psychological suffering that is intolerable to [the person] and that cannot be relieved under conditions that [the person] consider[s] acceptable.”^[98]

Many witnesses discussed challenges relating to assessing irremediability in the context of MAID MD-SUMC. Some witnesses expressed the opinion that MAID MD-SUMC should not be permitted because there cannot be certainty with respect to the incurability of a mental disorder.^[99] Other witnesses told the committee that certainty is not required^[100] and that there are ways to consider irremediability (years of treatment with negligible response, for example).^[101]

With respect to the Expert Panel’s discussion on irremediability, psychiatrist and MAID assessor Dr. Justine Dembo told the committee:

The panel report states that MAID assessors should establish incurability and irreversibility with reference to treatment attempts made, the impacts of those treatments and the severity of the illness, disease or disability. The panel also states that, as with many chronic conditions, the incurability of a mental disorder cannot be established in the absence of extensive attempts at interventions with therapeutic aims. This means that someone who has not had access to adequate care would not be eligible for MAID. Therefore, MAID could never be used as a substitute for good psychiatric care.

The Final Report of the Expert Panel also emphasized the need for considering eligibility on a case-by-case basis, and that it is not possible to establish rules about the number of types of treatments and interventions, or the number of times each must be attempted over what period of time.^[102] The Expert Panel also explained that determining incurability and irreversibility involves the individual requesting MAID and the assessor coming to a shared understanding. As Dr. Alison Freeland, Chair of the Board of Directors, Co-Chair of MAiD Working Group, Canadian Psychiatric Association told the committee,

ideally, these are shared decisions because the patient is listening to the psychiatrist's perspective and input, and we are there to think about hope and recovery. At the same time, we have to listen to a competent patient's perspective and what they want to come up with a decision that forges a path forward for the patient that they find appropriate for them… ideally these are transparent, informed conversations between two people who care about somebody's outcome, treatment and care.

Some psychiatrists told the committee that they have encountered very few individuals who would meet the criteria for MAID MD-SUMC.^[103] Dr. Donna Stewart noted that in the Netherlands, 95% of MAID requests based on mental disorder were rejected in 2020.

While the Expert Panel and some witnesses addressed how irremediability could be considered in the absence of certainty, Nancy Guillemette, Member for Roberval, Government of Quebec, Chair of Quebec’s Select Committee on the Evolution of the Act respecting end-of-life care, explained that Quebec decided that MAID MD-SUMC should not be permitted at this time because of the challenges of determining irremediability as well as the lack of social consensus.

MAID and Suicide

Witnesses disagreed about whether a request for MAID MD-SUMC can be distinguished from suicidality. For example, Dr. Donna Stewart explained that “to sort out suicidality from a well-considered request for MAID after somebody has suffered for many years, tried many treatments, has carefully thought this out and feels that this is best for them” is part of a psychiatrist’s role. The Expert Panel stated that “[i]ndividualized suicide assessments … are already part of current MAID assessment practices as are suicide prevention efforts when these are warranted.”^[104] In addition, the Expert Panel explained that:

[i]n these high-stakes clinical situations the clinician must undertake three actions simultaneously: 1. consider a person’s capacity to give informed consent to make such decisions; 2. consider whether or not suicide prevention interventions should be activated, including against the will of the person if necessary; and, 3. consider what other types of interventions could be helpful to the person including non-intervention.^[105]

Professor Brian Mishara, Director, Centre for Research and Intervention on Suicide, Ethical Issues and End-of-Life Practices (CRISE), Université du Québec à Montréal did not believe it was possible to distinguish a request for MAID from suicidality.^[106] Brian Mishara also expressed the opinion that this issue was not addressed by the Expert Panel: “If you look at the expert panel report carefully and you try to find some indication of how you differentiate between someone who is suicidal and someone who is requesting MAID, all they say repeatedly is that it is not possible to provide fixed rules.” However, Dr. Tyler Black,[107] Clinical Assistant Professor at the University of British Columbia, explained to the committee,

motivations in MAID and suicide are rarely the same. In suicide, it's very rare to have a combination of fatalistic motivation, which is a controlled response to a perceived stress, an agreed-upon lack of remedy and a rational calculation of the likelihood of change, whereas in MAID this is almost always the case. In the literature, psychiatrists generally agree with the patient's unbearable suffering and futility of treatment in psychiatric MAID cases in the countries where this has been studied.

…the wish to die is not indicative of a mental illness. While depression does include suicidality as one of its nine criteria, the presence of a serious mental health diagnosis is absent in 40% to 50% of all who die by suicide. Many who experience suicidal thinking do not have a diagnosable mental illness, and the vast majority do not die by suicide.

Dr. Black continued:

[T]here are decades of experience of MAID in some countries and some with psychiatric MAID, and it suggests that it's well practised, well accepted and represents only a small fraction of all MAID deaths, 1% to 2%. Given the number of people with suicidal thinking, there is simply no credible foundation for the fear that allowing MAID for psychiatric conditions would create a flood of deaths in Canada.

One study estimated suicidal thinking as an 8% lifetime risk for adults in the Netherlands, yet 65 or 0.0004% of adults in the Netherlands have died of MAID in any given year due to psychiatric reasons.

Dr. Natalie Le Sage, Physician, Clinical Researcher and MAID Provider and Christine Grou, President and Psychologist, Ordre des psychologues du Québec, indicated that an individual in crisis or dealing with an untreated or undertreated mental disorder would not be eligible for MAID MD-SUMC.

Regardless of opinions on whether a request for MAID MD-SUMC can be distinguished from suicidality, witnesses generally agreed on the need for improved suicide prevention.^[108]

Structural Vulnerability and Access to Healthcare

The committee heard from witnesses about structural vulnerability and its possible implications for MAID MD-SUMC. As the Expert Panel summarizes,

While structural vulnerability may contribute to a person’s experience of a chronic medical condition, the Panel does not believe persons in situations of structural vulnerability should be excluded systematically from access to MAID. Rather, local MAID coordinating services should ensure assessors are equipped to present requesters with a complete picture of any additional means available to relieve suffering and should make all reasonable efforts to ensure requesters have access to these means.^[109]

Dr. Guillaume Barbès-Morin, Psychiatrist, Association des médecins psychiatres du Québec, explained “[t]he vulnerability of people with mental health problems is not something new. Mechanisms already exist to take this into consideration, and clinicians already surround themselves with multidisciplinary teams to try and best assess all of the relevant factors.”

While the Expert Panel and witnesses agreed that better social supports and improved access to care are needed, most witnesses did not believe that MAID MD-SUMC should be prohibited due to a lack of social supports.^[110] Diane Reva Gwartz emphasized that additional resources for MAID practitioners are needed, particularly for MAID MD-SUMC given the complexity of those assessments.

Safeguards, Standards and Practical Considerations

Many witnesses who supported MAID MD-SUMC referred to the safeguards included in the Expert Panel’s report, some of which are discussed above in the sections “Irremediability” and “MAID and Suicide.” While the Expert Panel concluded that no additional safeguards specific to MAID MD-SUMC need to be added to the Code, Dr. Marie Nicolini, Senior Researcher, KU Leuven University and Georgetown University, disagreed, and also expressed the opinion that safeguards cannot be discussed until the standards for MAID MD-SUMC are determined. Psychologist and Professor Georgia Vrakas told the committee that, in her opinion, there were no safeguards that could be implemented to make MAID MD-SUMC safe.

The Expert Panel’s conclusion that the existing Code safeguards are sufficient for MAID MD-SUMC does not mean that additional safeguards are not required at the clinical level. As Dr. Donna Stewart told the committee, “[t]he main concern is the uncertainty that currently exists about what the standards are going to be. The sooner this can be firmed up, the more reassured the practitioners will be.” Dr. Justine Dembo indicated, however, that there is already experience with other track two assessments, and that “the issues that come up in track two and mental illness are very similar…assessors and providers are getting practice and are prepared to be able to implement the recommendations by March 2023.” Similarly, Jennifer Chandler explained that assessors are already assessing capacity for individuals with a mental disorder where there is a comorbidity for which they are eligible for MAID for both track one and track two, and Dr. Mona Gupta did not consider that there was a significant training gap that needed to be addressed for those already involved in assessments.

While the delivery of healthcare falls to the provinces and territories, the committee heard that standards of practice, process and safeguards should be harmonized across Canada.^[111] This was Recommendation 1 of the Expert Panel’s Final Report:

The federal, provincial and territorial governments should facilitate the collaboration of physician and nurse regulatory bodies in the development of Standards of Practice for physicians and nurse practitioners for the assessment of MAID requests in situations that raise questions about incurability, irreversibility, capacity, suicidality, and the impact of structural vulnerabilities.^[112]

While the Expert Panel did not recommend that two psychiatrists be involved in each MAID MD-SUMC application, this was the recommendation from Dr. Guillaume Barbès-Morin. Dr. Justine Dembo indicated that two psychiatric assessments might sometimes be required, and the Council of Canadian Academies report on MAID MD-SUMC discussed the potential role of two psychiatrists as recommended by the Flemish Psychiatric Association:

[T]he recent advisory document from the VVP [Flemish Psychiatric Association] recommends that during the process of evaluating eligibility for psychiatric EAS [euthanasia and assisted suicide], physicians should maintain a “two track” process involving two different psychiatrists: one conducts a thorough and extended evaluation for MAID eligibility, while the other explores treatment options with the person requesting MAID from a recovery‑oriented perspective.^[113]

Dr. Natalie Le Sage pointed out, however, that requiring two psychiatric assessments could be a barrier to accessing MAID. Christine Grou recommended including the expertise of psychologists and neuropsychologists, potentially as independent assessors.

Psychiatrist Dr. Michael Trew, Clinical Associate Professor, University of Calgary, proposed that if an individual has been found ineligible for MAID MD-SUMC, there should be a waiting period before the individual can consult another healthcare provider to avoid “doctor shopping.”

In Recommendation 16 of its report, the Expert Panel proposes that “the federal government should play an active role in supporting the development of a model of prospective oversight for all or some track two cases that could be adapted by provinces and territories.”^[114] While prospective oversight “for many track two cases” was supported by Dr. Donna Stewart and the Canadian Psychiatric Association, which indicated that oversight could start at the federal level and then shift to retrospective oversight by provinces and territories after a period of time, Dr. Louis Roy from the Collège des médecins du Québec observed that it should be reserved for more “contentious” cases. The importance of monitoring and collecting information was emphasized by Ellen Cohen, National Coordinator Advocate, National Mental Health Inclusion Network and Jennifer Chandler.

MAID MD-SUMC Eligibility in March 2023

While the committee respects that some witnesses do not think that individuals whose sole underlying medical condition is a mental disorder should be eligible for MAID, the committee believes that such individuals should have access to MAID, provided that they meet the eligibility requirements. The committee is also aware of the need to ensure that individuals who are vulnerable do not seek MAID as an alternative to inadequate social and healthcare supports. While the committee supports MAID MD-SUMC, it is concerned that there has not been sufficient time to develop the standards of practice referred to by the Expert Panel. Witnesses were clear that these standards are key to ensuring a thoughtful, consistent approach to MAID MD-SUMC. The committee notes the ministers’ announcement that eligibility for MAID MD-SUMC will be delayed. As mentioned above, Bill C-39 proposes a one-year extension to March 2024. The committee recognizes that this delay in eligibility for MAID MD-SUMC may prolong the suffering of some individuals.

The committee remains seized of this issue and wants to ensure that standards are in place before eligibility for MAID MD-SUMC is permitted. For that reason, the committee recommends

Recommendation 13

That, five months prior to the coming into force of eligibility for MAID where a mental disorder is the sole underlying medical condition, a Special Joint Committee on Medical Assistance in Dying be re-established by the House of Commons and the Senate in order to verify the degree of preparedness attained for a safe and adequate application of MAID (in MD-SUMC situations). Following this assessment, the Special Joint Committee will make its final recommendation to the House of Commons and the Senate.

Background

MAID for Minors in Canada and Internationally

In Canada, a person must be at least 18 years old to access MAID. However, minors with the requisite capacity are generally entitled to make their own healthcare decisions.^[115] The exact parameters of minor consent to healthcare vary by province. A Canadian Paediatric Society study cited by several witnesses shows that pediatricians have been fielding questions about MAID for minors.^[116]

Minors can legally access MAID in only a few jurisdictions worldwide. In the Netherlands, MAID is allowed for minors aged 12 and over, and may soon be expanded to include younger children.^[117] In Belgium, there is no minimum age, so long as the minor has the requisite capacity.^[118] As noted by several witnesses, the number of minors accessing MAID where it is legal is very low.^[119]

What is a “Mature Minor”?

The term “mature minor” refers to a common law doctrine according to which “an adolescent’s treatment wishes should be granted a degree of deference that is reflective of his or her evolving maturity.”^[120] This doctrine was endorsed by the Supreme Court of Canada in A.C. v. Manitoba (Director of Child and Family Services). According to Bryan Salte,

the discussion around the Council of Canadian Academies table was that “decisional capacity” is a much better term than “mature minors” because “mature minors”, as a legal term, is understood by lawyers and judges, but is not so clearly understood by members of the public.

Jay Potter, Acting Senior Counsel, Department of Justice, suggested that Parliament may need to define “mature minor” if MAID is expanded to this group.

Need for Further Consultation and Research

One of the most resounding messages from witnesses was the need for greater engagement with directly affected youth and their families on the topic of MAID for mature minors, including youth with terminal illnesses, youth with disabilities, youth in the child welfare system and Indigenous youth.^[121] “[R]especting our responsibilities to young people would include studying their perspectives and bringing their voices into deliberations about expanded access,” stated Dr. Randi Zlotnik Shaul, Director, Department of Bioethics, Hospital for Sick Children. The committee was concerned to hear that youth have been largely excluded from such discussions in both clinical care and policy-making contexts,^[122] and that there is little national or international data capturing their views and experiences regarding end‑of‑life issues.^[123]

The committee heard that this knowledge gap was a major source of concern for the Council of Canadian Academies Expert Panel Working Group on MAID for Mature Minors (CCA Mature Minors Working Group).^[124] Mary Ellen MacDonald, Endowed Chair in Palliative Care at McGill University described

an experience of frustration that we were trying to advance policy and practice ideas without having ample evidence from youth themselves on the topic at hand. We continually circled back to the lack of research we could draw upon to help think forward about what MAID for mature minors could and should look like.

This experience led her and her colleagues to submit a proposal to Health Canada for a three-year study examining the views of youth and their caregivers on MAID and other end-of-life issues, which could provide an evidence base for recommendations.^[125]

Witnesses described other preliminary efforts to better understand youth perspectives on this topic. Franco Carnevale, Professor and Clinical Ethicist, and founder of the VOICE childhood research program at McGill University, conducted interviews with youth leaders with disabilities at Holland Bloorview Kids Rehabilitation Hospital. Kevin Liu, a member of the VOICE Youth Advisory Council, conducted a study examining the views of youth aged 16–24 years (not including youth with terminal illnesses) on MAID, the results of which are currently under review for publication. The participants’ perspectives varied, but many recognized the benefits of MAID and that youth could make MAID-related decisions. Moving forward, Kevin Liu said it was important to seek input from vulnerable groups, including Indigenous youth and youth with terminal illnesses. Youth councils and children’s hospitals were recommended as good places to start.^[126]

The committee heard compelling testimony about the lived experience of two families, both of whom lost teenaged sons to bone cancer. Caroline Marcoux described her son Charles’ desire to access MAID to relieve his anxiety and pain, and to gain control over his death:

I know that the decision to expand access to medical assistance in dying to mature minors is not to be taken lightly, nor did Charles, from the height of his 17 years, at the end of his life, take it lightly. It might not have hastened his death by much, since he was already at the end of life. … But he was ready and he deserved that choice. It would have been his decision, in the end. It would have been he who chose the time to leave and the people who would be with him.

Mike Schouten, on the other hand, relayed how excellent palliative care enabled his family “to spend every living moment we had yet with [our son] Markus living well,” without ending Markus’ life prematurely.[127]

While Cheryl Milne, Executive Director, David Asper Centre for Constitutional Rights, and Dr. Randi Zlotnik Shaul affirmed the importance of hearing from youth, they cautioned that the time-sensitive needs of minors seeking MAID must also be considered. “A delay is not a neutral position,” observed Dr. Randi Zlotnik Shaul.^[128]

The committee agrees that a balance must be struck between addressing the urgent needs of currently suffering minors and soliciting more information from youth to ensure that MAID policy decisions are properly evidence-based. For that reason, the committee recommends

Recommendation 14

That the Government of Canada undertake consultations with minors on the topic of MAID, including minors with terminal illnesses, minors with disabilities, minors in the child welfare system and Indigenous minors, within five years of the tabling of this report.

Recommendation 15

That the Government of Canada provide funding through Health Canada and other relevant departments for research into the views and experiences of minors with respect to MAID, including minors with terminal illnesses, minors with disabilities, minors in the child welfare system and Indigenous minors, to be completed within five years of the tabling of this report.

Access to Supports and Services

As in the case of adults, some witnesses raised concerns about providing MAID to minors who may not have adequate access to care, supports and services.^[129] While some saw this as a reason to halt the expansion of MAID,^[130] others viewed it as a distinct issue that ought to be addressed in parallel with the provision of MAID.^[131]

Myeengun Henry, Indigenous Knowledge Keeper, University of Waterloo, and Conrad Saulis, Executive Director, Wabanaki Council on Disability, highlighted the importance of Indigenous healing practices to support Indigenous youth who are suffering. Mr. Saulis referred to “a vacuum of youth programming and support for [I]ndigenous youth.” Professor Roderick McCormick worried that many Indigenous and other youth are not aware of, or do not accurately understand, their treatment options. He also emphasized the need for improved mental health services for Indigenous and other youth.

Kimberley Widger, Associate Professor, spoke about the value of specialized pediatric palliative care teams, a point Mike Schouten affirmed based on his family’s experience:

[I]t was incredibly comforting to know that they were always one step ahead of us…every day when they would come to our house, the Canuck Place hospice nurses would assess Markus and say, “I think we need this type of medication” or “We need an extra dose of this type of medication to treat this” or “Let's bring in some more bedding”, or pillows or oxygen. Whatever it had to be, they were always ahead of us.

Professor Widger’s research found that many minors do not have access to this kind of care, and that there are “concerning inequities” regarding who has access. Others raised similar concerns regarding palliative care for minors generally.^[132] Roderick McCormick, referred to a “near total absence of palliative care services” for Indigenous youth.

According to the testimony of several medical professionals, however, even excellent palliative care may not always be sufficient to alleviate a minor’s suffering.^[133] This was the lived experience of Caroline Marcoux’s son Charles: “The [palliative care] team did its best, within the limits of the options available to it, but was never able to completely relieve the pain,” she explained.

The committee wishes to underscore the importance of ensuring that all minors have access to the care, supports and services they need, including specialized paediatric palliative care delivered in a culturally appropriate manner (see recommendations under “Palliative Care”).

Capacity and Age

The applicable standard for capacity to make healthcare decisions, and the clinical capacity assessment process, are similar regardless of age.^[134]

Witnesses described various contextual factors that may affect a minor’s decisional capacity, including their level of development,^[135] experiences with illness,^[136] cultural and familial influences,^[137] and the way they are engaged in the decision-making process itself.^[138] It was widely acknowledged that the frontal lobe of the brain, which plays a key role in risk assessment and decision-making, is not fully developed until well into adulthood.^[139] On the other hand, Bryan Salte pointed to evidence showing that individuals with terminal illnesses are “very informed about their condition and very thoughtful about the decisions they make.” Several other witnesses affirmed, based on both professional and personal experience, that adolescents suffering from serious illnesses tend to possess an uncommon level of maturity.^[140]

Dr. Timothy Ehmann, Child and Adolescent Psychiatrist, and Mike Schouten worried that there are many systemic influences on a minor’s decision-making, including the government’s MAID policy itself. According to Cheryl Milne, while minors often make decisions with their families, this does not mean that their consent is not voluntary.

Several witnesses underscored that decisional capacity is time and treatment-specific, and that the threshold for capacity depends on the gravity of the decision.^[141] Some felt that the decision to seek MAID is simply too weighty for a minor to make.^[142] Several others pointed out that Canadian minors are already allowed to make decisions about withholding or ceasing treatment, even when such decisions may hasten death.^[143] While Elizabeth Sheehy, Professor Emerita of Law, University of Ottawa, and Dr. Timothy Ehmann viewed such decisions as substantially different from the decision to seek MAID, Dr. Dawn Davies, Pediatrician, Palliative Care Physician, viewed them as comparable. Kathryn Morrison, Clinical and Organizational Ethicist, suggested that a decision that leads to death when a long future is possible may actually be weightier than a decision to seek MAID when one is already at the end‑of‑life.

Many witnesses held firm convictions that neither suffering^[144] nor capacity^[145] is a function of age. This was often supported by clinical observations.^[146] Others questioned the constitutionality, or at least the justifiability, of denying access to MAID based on age.^[147] Dr. Randi Zlotnik Shaul explained:

I think having the capacity piece not tied exclusively to an age is giving recognition to fact that the lived experience of an individual informs their ability to understand and appreciate the question before them. In terms of social context and in terms of experience in living with an illness, all these pieces will inform and add to the maturity they may have …

Most clinicians were confident that healthcare professionals could appropriately assess capacity on a case-by-case basis.^[148] Dr. Arundhati Dhara, Family Physician, stated:

We need to approach MAID for mature minors the same way we do for every patient: Each is unique and must be treated with careful consideration of their personal circumstances in the context of their life.

She noted that MAID providers operate within a “community of practice” which enables them to seek further opinions when faced with complex cases. Dr. Timothy Ehmann, on the other hand, expressed the view that according to his understanding of the research literature, capacity assessments of minors are unreliable.

While clinicians generally supported a capacity-based approach, Elizabeth Sheehy felt that a clear minimum age was important to avoid recourse to the courts. Should a minimum age be adopted, Constance MacIntosh recommended setting it at 12 years old, based on psychological evidence that a child younger than 12 is very unlikely to have the necessary decisional capacity for MAID.

A December 2021 report published by the Collège des médecins du Québec concludes that minors aged 14 and older should have access to MAID with parental consent,^[149] which accords with Quebec’s existing healthcare consent law.^[150] Several representatives of the Collège reiterated this position in their testimony,[151] including Collège president Dr. Mauril Gaudreault, who explained:

for mature minors aged 14 to 18 years, our thinking was based on the following considerations. First of all, suffering does not pay any attention to age. Suffering has no age. Then, the act already acknowledges that minors, aged 14 and over, have the right to consent on their own to certain types of care, such as abortion. The consent of parents or the guardian is compulsory, of course, when care represents a serious risk to a minor's health.

In its brief submitted to the Committee, the Collège similarly states:

The Collège believes that MAID can be requested by minors aged 14 to 17, if jointly requested by the person with parental authority or guardian. The Collège bases its position on the fact that suffering is independent of age and that suffering experienced by minors can be as intolerable as it is for adults.

Even though she supported a capacity-based approach, Dr. Randi Zlotnik Shaul proposed the option of a staged expansion of access, beginning with 16 or 17 year-olds, in order to provide an opportunity for further youth engagement on the topic.

Given the many factors that influence a minor’s decision-making capacity, the committee believes that eligibility for MAID should not be denied on the basis of age alone. For that reason, the committee recommends

Recommendation 16

That the Government of Canada amend the eligibility criteria for MAID set out in the Criminal Code to include minors deemed to have the requisite decision-making capacity upon assessment.

Other Eligibility Criteria and Safeguards

Mature minors make up a potentially vulnerable group calling for heightened societal protection.^[152] While acknowledging that MAID for mature minors should therefore involve special safeguards, a number of witnesses emphasized that these should not create onerous barriers to access.^[153]

Reasonably Foreseeable Death and Mental Disorder

Most witnesses agreed that MAID should only be expanded to include mature minors whose natural death is reasonably foreseeable, at least initially.^[154] As explained by Kathryn Morrison and Cheryl Milne, there is greater uncertainty regarding the vulnerabilities at play in cases where natural death is not reasonably foreseeable, necessitating further study. Dr. Gordon Gubitz noted that the Canadian public may not be ready for track two MAID for minors, and recommended, along with others, a cautious, stepped approach.^[155] Bryan Salte, however, questioned the constitutionality of limiting MAID for mature minors to track one.

Others held firm convictions that track two MAID and MAID MD-SUMC are unacceptable for minors, and feared these would inevitably follow any expansion to track one.^[156] Elizabeth Sheehy was particularly concerned about the discriminatory impacts of allowing MAID for minors with disabilities, who often face mental health challenges and may struggle to imagine a positive future for themselves. Ahona Mehdi worried that minors with disabilities may feel like a burden due to the costs associated with their care, including parental time off work. Conrad Saulis relayed the fears of Indigenous youth regarding MAID, given the mental health and youth suicide challenges in their communities. Kathryn Morrison, however, opined that the uncertainties raised by track two MAID and MAID MD-SUMC “should not undermine the case for a mature minor to access MAID under track one.”

While some witnesses remained open to the possibility of track two MAID for mature minors in future, there was a general consensus that MAID is not appropriate for mature minors suffering solely from a mental disorder.^[157] Dr. Randi Zlotnik Shaul and Dr. Dawn Davies concurred with the CCA Mature Minors Working Group finding that a mental disorder is unlikely to be deemed irremediable prior to the age of majority.^[158] Youth psychiatrist Dr. Gail Beck explained that a person could not exhaust all treatments for a mental disorder by the age of majority.

The committee agrees with the many witnesses who opined that MAID for mature minors should be limited to track one at this stage, especially given the lack of youth perspectives on the topic. For that reason, the committee recommends

Recommendation 17

That the Government of Canada restrict MAID for mature minors to those whose natural death is reasonably foreseeable.

Other Safeguards

Some witnesses stressed that there are already robust safeguards built into the clinical approach to capacity assessment for minors making healthcare decisions.^[159] To build on this, Constance MacIntosh recommended codifying—via the Code or regulations—and potentially enhancing, the process for assessing the capacity of minors seeking MAID. She also recommended more detailed, publicly available guidelines from healthcare associations on assisting youth with decision-making, and more consistency in how such decisions are approached across the provinces. Kathryn Morrison directed the committee to the safeguards outlined in the report of the CCA Mature Minors Working Group, which include the creation of standards of practice for assessing the capacity of minors seeking MAID, and the development of safeguards such as professional competency requirements at the provincial level.

Kimberley Widger thought that specialized pediatric palliative care teams should be involved in assessing minors seeking MAID to ensure that all care options have been fully explored—a suggestion that others agreed with.^[160]

The committee agrees that standards of practice for capacity assessment should be established in the context of MAID for mature minors. For this reason, the committee recommends

Recommendation 18

That the Government of Canada work with provinces, territories and First Nations, Inuit and Métis communities and organizations to establish standards for assessing the capacity of mature minors seeking MAID.

The committee also heard evidence about the importance of parental involvement in the decision-making process, which ultimately affects the whole family.^[161] As already noted, the Collège des médecins du Québec has taken the position that parental consent should be required for minors to access MAID. Parental consent is also a requirement in Belgium and the Netherlands for certain age groups.^[162] Other witnesses supported a requirement for parental consultation, but not consent.^[163] Kathryn Morrison observed that, as with adults, family members can be “autonomy supporting but also autonomy limiting.” She cautioned that a parental consent requirement would be incompatible with the current framework for consent to treatment. Bryan Salte added that parents may be reluctant to consent to the death of their child. Despite these concerns, there was testimony that in most cases, youth and caregivers agree on end-of-life decisions.^[164]

Other safeguards that were discussed included requiring the opinion of a psychiatrist on the minor’s maturity, as in Belgium,^[165] requiring a “cooling off” period between the initial MAID request and the administration of MAID,^[166] and having an Indigenous healer or practitioner on hand to support the decision-making process for Indigenous youth.^[167] Dr. Dawn Davies felt that any “extra level of sober second thought” should occur within the context of the minor’s healthcare team, rather than via an external review panel, to avoid placing an additional burden on the minor. Constance MacIntosh recommended the implementation of post-facto review boards.

The committee agrees with those witnesses who supported a requirement for parental consultation, but not consent, in the context of MAID for mature minors. For that reason, the committee recommends

Recommendation 19

That the Government of Canada establish a requirement that, where appropriate, the parents or guardians of a mature minor be consulted in the course of the assessment process for MAID, but that the will of a minor who is found to have the requisite decision-making capacity ultimately take priority.

The committee also agrees with those witnesses who suggested that it is important to proceed cautiously in allowing MAID for mature minors. For this reason, the committee recommends

Recommendation 20

That the Government of Canada appoint an independent expert panel to evaluate the Criminal Code provisions relating to MAID for mature minors within five years of the day on which those provisions receive Royal Assent, and that the panel report their findings to Parliament.

Background

At this point in time, the Code provisions allow the final consent that is required immediately before MAID is provided to be waived in certain circumstances. A person whose natural death is reasonably foreseeable, who has been approved for MAID and who has arranged for MAID to be provided on a certain day can enter into a written agreement consenting to the administration of MAID if they lose capacity to consent.^[168] In the case of a loss of capacity to consent, MAID can be administered unless the person demonstrates “refusal to have the substance administered or resistance to its administration.”^[169]

An advance request for MAID would allow a person who is at risk of losing capacity to consent to MAID to set out the conditions under which they would want MAID to be provided, should such a loss of capacity occur. An advance request for MAID should not be confused with an advance medical or healthcare directive, in which an individual gives permission for another person to make healthcare decisions on their behalf if the individual becomes incapable of doing so. An advance medical or healthcare directive can also include an individual’s treatment preferences as guidance for a designated substitute decision-maker.^[170]

A number of polls indicate that Canadians support being able to make an advance request for MAID,^[171] and many witnesses echoed that there is public support.^[172] Helen Long, Chief Executive Officer, Dying with Dignity Canada told the committee that “[b]y far, the most frequently asked questions we receive are those related to advance requests for MAID.” Geriatric physician Dr. David Lussier noted that there is broad acceptance of advance requests in Quebec, including among those “with major neurocognitive disorders and their loved ones,” as well as among health professionals. PDAM and the Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying both recommended that advance requests be permitted, as did Quebec’s Select Committee on the Evolution of the Act respecting end-of-life care.^[173] In the spring of 2022, Quebec introduced Bill 38 which would have permitted advance requests for MAID in some circumstances,^[174] but that bill was put on hold and did not proceed prior to the provincial election.

In poignant testimony, Sandra Demontigny, who is 43 years old and has early onset Alzheimer’s, shared what an advance request would mean for her:

… I don't want to experience the final phase of the disease, completely dependent and unable to express myself very much, if at all. I've seen it and I don't want to live through it. That's what I would specify in an advance request. It would definitely give me more time.

Without wishing to put pressure on you, if advance requests were not approved by Parliament, then unfortunately, I would have to decide to leave before entering that phase, in order to avoid becoming trapped.

Dr. Serge Gauthier, Emeritus Professor and neurologist, emphasized that many of his patients desire advance requests, with some having even signed documents indicating their request. Some of his patients advised that they would contemplate suicide without having advance requests as an option.

Dr. Ellen Wiebe noted that while her research confirmed that public support for advance requests is overwhelming, there is hesitation among MAID providers to act on one should they be permitted by law.

While some witnesses expressed the opinion that moving forward with advance requests for MAID is problematic, the majority of witnesses were supportive of permitting this option. Witnesses shared ways in which individuals who make the request, their families, and their healthcare team can be confident that they are proceeding with MAID at the appropriate time. Dr. David Lussier explained that there have already been cases in which individuals with dementia who still have capacity to consent have accessed MAID, as “there is a moment when the decline is advanced and the disease is serious enough to be considered incurable.”

The potential risks relating to advance requests, the experiences of other jurisdictions that permit advance requests for MAID, and the process and safeguards suggested by witnesses are summarized below.

Potential Risks of Permitting Advance Requests for MAID

Some witnesses expressed the opinion that the difficulty in predicting the rate of decline of an individual with a neurodegenerative condition, and the complexity involved in anticipating what an individual might find intolerable in the future make advance requests problematic.^[175]

Witnesses concerned about allowing advance requests suggested that such requests stem from ableism, ageism, and stigma.^[176] The committee heard that some individuals might make an advance request out of fear of being a burden on caregivers.

In the opinion of Trudo Lemmens, Professor, Scholl Chair, Health Law and Policy, Faculty of Law, University of Toronto, an advance request for MAID “expresses in law also the view that life with cognitive disability involves loss of dignity.” At the same time, Jocelyn Downie suggested that by not letting someone make an advance request, “you're in a sense saying that people with dementia can't be trusted to make decisions for themselves in the future because they're too vulnerable to these external pressures and so on… that itself is stigmatizing of persons with dementia.”

Some witnesses emphasized the need for better support for people with dementia, including access to geriatricians (of which there is a shortage),^[177] palliative care and hospice care.^[178] Dr. Melissa Andrew, Professor of Medicine in Geriatrics, Dalhousie University, noted the need for action on the National Dementia Strategy.

Dr. Félix Pageau emphasized that research “could establish reliable scales for assessing physical, psychological and existential suffering for patients with advanced dementia.” According to Dr. Ross Upshur, Professor, Dalla Lana School of Public Health and Department of Family and Community Medicine, University of Toronto, addressing the knowledge gaps that were identified by the Council of Canadian Academies^[179] is essential “in order for there to be evidence-informed supports for substitute decision-makers, clinicians and others, because the circle of individuals around MAID is quite extensive.”

Some witnesses were of the opinion that providing advance consent is not true consent,^[180] suggesting that it cannot be fully informed^[181] and it cannot be withdrawn.^[182] Trudo Lemmens opined that the Council of Canadian Academies report on advance request “shows that there is no evidence that procedural solutions can easily address the legal and ethical concerns.” Finally, Michael Bach, Managing Director, Institute for Research and Development on Inclusion and Society, suggested that permitting advance requests is a slippery slope: “[a]uthorize advance requests and the hinges start to come off the door.”

Some witnesses were concerned that a substitute decision-maker would be deciding when the advance request should be acted upon.^[183] Jocelyn Downie disagreed:

There is no room for substitute decision-making in this context. It is the individual who was saying what is to be done to them at a point at which they have lost decision-making capacity, and the clinician assesses the objectively assessable conditions because you've sorted that out by writing down your written request. You figured out what will work. It is something that clinicians can assess, and they determine whether those conditions have been met or not.

With respect to disease progression, many witnesses talked about “happy dementia,” and Dr. David Lussier explained how this relates to suffering and advance requests:

In some cases, there is undeniable objectifiable suffering, accompanied by non-verbal signs of pain and psychological and behavioural symptoms associated with dementia, such as aggressiveness. In other cases, which are, rightly or wrongly, called pleasant dementia cases, patients are happy in their day-to-day lives despite their cognitive disorders and loss of autonomy. However, if they had seen themselves in that state, they might not have wanted to live. Should the eligibility criterion be contemporaneous suffering or anticipated suffering? That's an important and complex question.^[184]

Personal accounts of loved ones with dementia challenged the concept of “happy dementia.”^[185] Sandra Demontigny, who also supported her father through dementia, told the committee

[t]o be quite honest, I don't believe in [happy dementia]. Contented dementia amounts to symptoms of a disease being expressed. It's not that the person is content, but rather that brain plaques have disrupted their neurotransmitters, causing what appears to be expressions of joy.

In her brief, Catherine Leclerc shares the experience of her mother, who has lived with dementia for 16 years:

The illness has not made her aggressive; she has remained gentle, she smiles, and sometimes she laughs. It is easy for a health care professional who assesses her once a year to perceive that she is comfortable with the disease. Yvette has what some call “happy dementia.” Happy dementia is a trap. Yvette smiles, not because she is not in pain, but simply because the disease has not yet taken away her ability to do so.

Judes Poirier, Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, shared his opinion of “happy dementia”:

Are these people happy? No. My mom would not have repeatedly asked me to die. There are biological changes over which we have no control, as I explained earlier. Underestimating psychological pain is often the problem in our fine health care system. We look for physical problems and tend to see psychological problems less. I think that is where the problem lies. In research, we have tools to document it.

I'm sorry, but in my opinion, happy dementia is a strange myth.

The committee heard that permitting advance requests could lead to coercion and abuse,^[186] and that there might be problems interpreting the written documents that establish the advance request.^[187] How to address situations in which a person with an advance request appears to be resisting at the time MAID is to be administered was mentioned by a number of witnesses.^[188] Dr. David Lussier told the committee that “[a]t an advanced stage, many individuals resist all contact and treatment and become aggressive when touched. As a result, they reject attempts to insert any intravenous device without previously being sedated or restrained.” While any conscious refusal or resistance should be respected,^[189] unconscious resistance could be addressed by including in an advance request direction about what action a clinician is to take, or not take, if there are signs of resistance.^[190],[191]

Safeguards and Scope of the Request

Most witnesses who supported advance requests indicated that they should only be available once a person has received a diagnosis.^[192] Danielle Chalifoux, Lawyer and Chair, Institut de planification des soins du Québec, suggested however that restricting advance requests to people with a diagnosis would be contrary to the Charter, and Dr. Chantal Perrot indicated that it should be available to more people than those with neurocognitive conditions.

Many witnesses spoke about the importance of very clear, observable criteria that a person would need to set out in an advance request for MAID, such as not being able to recognize one’s family members, being bedridden, or not being able to eat, that would constitute their intolerable suffering.^[193] As Peter Reiner, Professor of Neuroethics, Department of Psychiatry, University of British Columbia explained, clear criteria, including an explanation of why a specific situation would be considered to be intolerable suffering, would support clinicians, reinforcing “the idea that they were doing the right thing at the right time.”

In addition to having a written document setting out the advance request, witnesses emphasized the importance of making sure that one’s wishes are known to family and healthcare providers.^[194]

Proponents of advance requests emphasized the importance of periodically reaffirming a request,^[195] although there was no agreement on how frequently the reaffirmation should take place. As Dr. Chantal Perrot told the committee, “I don't think a clinician could reasonably be expected to act on an advance request that was written 25 years ago and was never revisited or reaffirmed.” Finally, some witnesses suggested there should be a national database of advance requests to ensure continuity of the request if a person moved from one province or territory to another.^[196]

To make a well-informed decision relating to an advance request, Sandra Demontigny emphasized the importance of healthcare supports:

I have access to a psychologist and a social worker. I speak freely with them about my experience with Alzheimer's and the process I'm going through. It does me a lot of good. If they can't answer my questions, they will, when required, go and obtain information for me and tell me about what they found. It's important for people to have access to these services, which are difficult to obtain in the health system. However, to make a well-informed decision after having examined the entire range of possibilities, what's required, in my opinion, is access to qualified professional.

Nancy Guillemette told the committee: “I am convinced that we can create a process that will respect people's values and their right to self-determination, while protecting vulnerable individuals. It is very important not to lose sight of that aspect.” The committee agrees. As Liana Brittain told the committee,

I believe it is our responsibility as a society to educate everyone, in particular those with physical disabilities like me about what options are available to them in collaboration with the medical community as they make the final leg of their end of life journey. This is true people-patient centred care, care where the individual is in charge of taking responsibility and actively participating in their own plan. I may be physically disabled but I want to know what are my choices. I want to weigh those options and make an informed decision about what I can choose to do next in consultation with the experts. I don't want to feel vulnerable.

In keeping with the eligibility criteria and safeguards set out in the existing Code provisions relating to MAID, the committee emphasizes that an advance request must be voluntary, non-coercive, well-considered and made by a person with the requisite capacity.

The committee recognizes that while permitting advance requests for MAID would require an amendment to the Code, provinces and territories will be the ones developing standards and safeguards. As Pierre Deschamps, Lawyer and Ethicist, explained to the committee,

there can be no doubt that provincial statutes, as in Quebec's case, will be required to determine the circumstances in which an advance request for medical assistance in dying may be activated when a person is considered incapable of giving consent yet is still conscious, even if minimally so.

As mentioned above, Quebec’s Select Committee on the Evolution of The Act Respecting End-Of-Life Care recommended that advance requests be permitted. The committee agrees that the Quebec committee’s recommendations provide guidance for other legislators who may contemplate permitting advance requests and has thus attached the Select Committee’s recommendations and observations as an Appendix to this report.

Finally, Sandra Demontigny eloquently and movingly shared with the committee the sense of peace that advance requests might provide in situations like hers:

I am working to calm my vanishing brain and my troubled heart. I feel a need to be reassured about my future so that I can do a better job of living out my remaining days and coping with the more frequent trials I will be experiencing.

My plan is to make the most of my final years while life is still good, with a free mind and without fear.

For these reasons, the committee recommends

Recommendation 21

That the Government of Canada amend the Criminal Code to allow for advance requests following a diagnosis of a serious and incurable medical condition disease, or disorder leading to incapacity.

Recommendation 22

That the Government of Canada work with provinces and territories, regulatory authorities, provincial and territorial law societies and stakeholders to adopt the necessary safeguards for advance requests.

Recommendation 23

That the Government of Canada work with the provinces and territories and regulatory authorities to develop a framework for interprovincial recognition of advance requests.