Disability community feels ignored in Canada’s assisted dying expansion

Controversial expansion

Nearly 45 000 Canadians have used MAID since its 2016 introduction, and the number each year increased rapidly as eligibility expanded. In 2022, 13 241 people underwent MAID, representing 4.1% of deaths in Canada.

There have always been advocates for expansion, and they succeeded in 2021 with an expansion—“track two”—of criteria to include people whose natural death is not reasonably foreseeable (see box). Just before the 2021 bill passed, senator Stan Kutcher added a sunset clause that would expand MAID to those with mental illness after a set time period.9

To be eligible for MAID where natural death is not reasonably foreseeable, two independent physicians or nurse practitioners must provide an assessment. If neither of the two assessors has a history with the medical condition of the requestor, expert consultation is required.710

Additionally, the person requesting MAID must be informed of available services and the assessors have to confirm that all options to relieve suffering, such as mental health and disability support, have been considered.11 If approved, clinician or self-administered MAID is provided after a 90 day waiting period.

Eligible conditions to qualify under the proposed MAID expansion include those described in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, that are primarily treated in psychiatry, such as depression, anxiety, eating disorders, bipolar disorder, and schizophrenia.

Unlike other countries with MAID outside of an end-of-life context, such as Belgium and the Netherlands, Canada does not require agreement between healthcare providers that there are no other treatment options. Further, the extent that alternatives must be considered before MAID approval remains unclear.12

Proponents of the expansion of MAID, including senators Kutcher, Pamela Wallin, and Marie-Françoise Mégie, who serve on the parliamentary committee, say that denying MAID to people with mental illness is unconstitutional and discriminatory.1

“In our opinion, this is fundamentally a Canadian Charter of Rights and Freedoms matter,” Kutcher said. “All Canadians, regardless of where they live, who they love, what illness they have, have the same rights. And this goes for people with a mental disorder.”13

Canada has demonstrated preparedness and the expansion should come into effect to ensure all people have equitable access to MAID, proponents say. But opponents disagree.

“There’s a perversion here of the concept of equality when people say that the failure to extend assisted dying to people with mental illness is somehow an intrusion on equality,” says Archie Kaiser, professor of law with expertise in mental disability law at Dalhousie University. “The original sin here is the failure to protect equality rights in our society.”

Kaiser adds that the UN Special Rapporteur on the rights of people with disabilities explicitly denounced Canada’s 2021 MAID expansion to those whose death is not reasonably foreseeable, citing shortfalls. For instance, it identified the need for protocols that ensure people with disabilities are provided alternatives to MAID and protection from accessing MAID because of a lack of health and social services.14 The Canadian Human Rights Commission expressed the same concerns in a February statement.15

Unheard voices

“For the implementation of MAID practices, and education and guidelines, Health Canada and the government has exclusively relied, or nearly exclusively relied, on a small group of people and a small group of providers, who in my view have shown an incredible focus on access, not on protection,” says Trudo Lemmens, professor and Scholl chair in health law and policy at the University of Toronto.

Several committee members have openly supported unrestricted access to MAID for all populations, he says, raising questions about their objective evaluation of evidence. Around 900 statements were submitted by citizens and professionals to the committee. At the time of writing, less than half are available on the parliament website.16 Lemmens tells The BMJ that the committee demonstrated a lack of interest in hearing from people who expressed concerns during its sessions.

Krista Carr, executive vice president at Inclusion Canada, a coalition of community living and intellectual and developmental disability groups, says there was mistreatment of people with disabilities and disability advocates. “People were dismissed and undermined, and in some cases, people were told their personal testimonial was harmful and even violent,” she tells The BMJ. “Many people with disabilities were not properly accommodated to present to the committee.” For instance, people who required extra time to deliver their testimony were told to pre-record it, where it was then played sped up and distorted, she says.

Not only is mental illness increasingly considered a disability,17 but people with disabilities are at least twice as likely to have poor mental health.18 Yet, the committee did not appropriately consult with those most likely to be affected by the proposed expansion, Carr says.

Neil Belanger, chief executive at Indigenous Disability Canada/British Columbia Aboriginal Network on Disability Society, says the committee process also lacked engagement with Indigenous people, who face additional marginalisation and health inequities. For instance, none of the three parliamentary reports on the proposed expansion to include mental illness involved Indigenous communities.

In response to questions, Tammy Jarbeau, senior media relations adviser for Health Canada and the Public Health Agency of Canada, told The BMJ that in 2023, the government of Canada launched a two year engagement process with Indigenous people on end-of-life care, including MAID.

Suicide prevention v MAID

Another concern for advocates is the distinction between suicide and MAID. Who gets mental health support and suicide prevention, and who is offered MAID? Critics of the policy fear that people who live with more severe mental illness or who experience more social and structural barriers will be directed towards MAID, which they say is already happening to those experiencing poverty.

Safeguards surrounding MAID are not stringent enough or miss key components altogether, they add. For instance, MAID approval requires medical assessment of irremediability and suicidality—whether one’s condition can improve or whether they are suicidal—both of which remain evidentially unanswerable in MAID for mental illness.19

The guidelines outlined by the Canadian Association of MAID Assessors and Providers, a federally funded organisation of healthcare practitioners who provide MAID, have also drawn condemnation from opponents to MAID expansion. Its information material advises on ways someone requesting MAID who has track two eligibility can be transferred to track one, thereby bypassing safeguards.¹⁹

Mona Gupta, psychiatrist and chair of the parliamentary expert panel on MAID and mental illness, does not believe mental illness should be treated any differently than physical illness and says necessary safeguards and training are in place to appraise requests informed by suicidal ideation and social circumstances.

Not providing people with mental illness access to MAID is paternalistic and undervalues their autonomy, she and other supporters of the expansion say. “I’m worried about the message this sends about the status of people with mental disorders in our society…that they can’t be trusted to make their own decisions and they require the state to exercise control over their lives,” Gupta wrote in Maclean’s magazine.20

Peters emphasises the potential harms this will have on the disability community. “Disabled people, particularly disabled poor people, do not operate in this world with the same degree of autonomy as a non-disabled person,” she said. She explains that she must overcome several barriers to access the care she needs, including doctors’ notes to replace necessary medical equipment. Despite this, MAID is the one thing that proponents are working to make readily available for her to exercise autonomy. “That really kind of seems like enticement to me.”

While some in the disability community support MAID expansion, the vast majority are opposed. More than 100 disability organisations have opposed track two and the 2021 bill given the gaps in mental health services their community needs.21

Gaps in care

A 2022 analysis by government agency Statistics Canada reported more than five million people (18% of the population) met the criteria for a mood, anxiety, or substance use disorder, with a near doubling of the prevalence of depression and anxiety since 2012.4 More than one in three Canadians with mental illness report unmet health and mental healthcare needs, with long wait times and affordability creating gaps in care. Unlike other G7 countries, Canada does not have a suicide prevention strategy.

Carr and Belanger say their community members consider or turn to MAID because they cannot access health and social services. They say that offering MAID as an alternative to appropriate support sends a troubling message to people with disabilities—that it is better to be dead than live with a disability. And they worry that expansion will remove impetus for the government to improve critically needed mental health services.

“We know we have to fight for services,” Belanger says. “Never in my wildest imaginings did I ever think that we’d have to actually say, you know what, don’t just kill people because they have mental illness or disabilities, when we’re not providing them the necessary support to live.”