Disability advocates and health policy experts say the special joint committee studying Canada’s assisted dying legislation needs to investigate how MAiD is being applied before expanding access, following reports about people obtaining a medically assisted death because they lack access to adequate housing or other social support.

CTV News reported on April 13 that “a 51-year-old Ontario woman with severe sensitivities to chemicals” applied for and received a medically-assisted death after a frustrated two-year search for affordable housing “free of cigarette smoke and chemical cleaners.” The report added that four Toronto physicians wrote to government housing and disability officials on the woman’s behalf, saying they found it “unconscionable that no other solution is proposed to this situation other than medical assistance in dying.”

Independent Senator Chantal Petitclerc (Grandville, Que.), who sponsored the 2021 bill that expanded access to MAiD beyond people whose deaths were “reasonably foreseeable,” told The Hill Times it was difficult for her to comment without knowing the specifics of each case, but said she was “very troubled” by what she has read so far.

“Medical assistance in dying is not and should never be something that an individual will have access to because we don’t do enough as a country, as a province, to provide the care, the services, the tools that a person needs,” said Petitclerc, who uses a wheelchair.

NDP MP Alistair MacGregor (Cowichan-Malahat-Langford, B.C.), who sits on the joint House-Senate committee conducting the statutory review of the law, told The Hill Times that “no one should feel pressured to end their life sooner for lack of services and resources.”

“At the same time, we can’t shy away from the fact that this is a reality for so many people who live with disabilities in Canada,” said MacGregor, citing Statistics Canada data that says people with mild and severe disabilities are more likely to be below the poverty line than the general Canadian population.

Referencing the news reports, Petitclerc said she recognized “this was a fear” expressed by groups representing persons with disabilities.

Former Ontario Lt-Governor David Onley says expanding access to MAiD without creating adequate social support amounts to ‘political assistance in dying.’ Photograph courtesy of the Office of the Lt-Governor of Ontario

“We had them as witnesses, we listened to them, and they had some very strong concerns,” said Petitclerc. But, she added, the 2021 legislation’s text made clear there were to be safeguards in place “to prevent something like this from happening.”

“So what exactly happened? And did we fail? We need to look at this closely.”

David Onley, a former lieutenant-governor of Ontario who now teaches at the University of Toronto Scarborough, told The Hill Times that “all three levels of government” failed the woman in the CTV News story, who lived in “phenomenal discomfort” for two years while looking, unsuccessfully, for adequate accommodation.

“There are two forms of assistance in dying. One for medical reasons where the person has no chance of recovery, and is living in severe physical and psychological pain. That I don’t have as much difficulty with,” said Onley, who uses a wheelchair. “As opposed to political assistance in dying, where the various politicians and various other people in the structure of government simply fail to do their jobs.”

Health Canada aware of concerns MAiD being sought as an alternative to inadequate social services

Canada decriminalized medical assistance in dying on June 17, 2016, for cases involving people with a serious and incurable illness, disease or disability, whose death was “reasonably foreseeable.” A 2019 Quebec Superior Court ruling said the requirement for death to be “reasonably foreseeable” was too restrictive and ordered the government to expand access.

The federal government passed a revised version of the original bill on March 17, 2021, that added a second track for people who were suffering intolerably but who were not near the natural end of their lives. The revised bill also expanded access to MAiD to people whose only medical condition was a mental illness, but delayed implementation until March 17, 2023, to give the government time to study possible safeguards.

According to Statistics Canada, there were 5,425 medically assisted deaths in Canada in 2019, accounting for 1.9 per cent of all deaths in Canada. That number rose to 7,383 medically assisted deaths in 2020, or 2.4 per cent of all deaths. Cancer was the underlying condition for two thirds of all applications in these years, and three quarters of all applicants ended up receiving MAiD.

In a written statement to The Hill Times, Health Canada said it was aware of concerns that some people may seek MAiD “in the absence of appropriate housing or other supports.”

The unsigned statement described “stringent eligibility criteria and robust procedural safeguards” intended to guarantee informed consent and guard against coercion, including recent changes to MAiD legislation that require medical practitioners to ensure that people seeking MAiD are “made aware of the supports available to them,” in order to “identify and potentially address the sources of suffering and vulnerability that could lead the person to ask for MAID.”

But a MAiD provider cannot create a housing program or an income support program that does not exist. Health Canada acknowledged that “there are disparities in access to services and supports across the country,” and said “governments are working hard to address these disparities.”

The special joint House-Senate committee conducting the statutory review of MAiD legislation in Canada began its work under the previous Parliament but was only able to meet three times before Parliament was dissolved in June 2021 for the general election. The relaunched committee began meeting again in April.

Two Senators who sit on the joint committee declined to comment while the committee’s study is still underway: Conservative Senator Yonah Martin (British Columbia), the joint chair, and Independent Senator Stan Kutcher (Nova Scotia), a leading psychiatrist.

Balancing individual rights with structural injustices

Advocates for medical assistance in dying tend to talk about individual agency and the right to have control over one’s own end-of-life decisions, whereas the disability advocates who are critical of the MAiD regime tend to talk about structural injustices and the broader social context of ableism.

Helen Long, the CEO of Dying With Dignity Canada (DWDC), said in a written statement that “there are clear shortfalls in the health care and social service systems that must be addressed, but we cannot deny MAID to those who want to end their suffering because of the failings of these separate systems.”

Long described the MAiD regime on one hand and health and social services on the other hand as parallel priorities that should both receive sufficient attention from governments. “DWDC urges the government to work and directly consult individuals with disabilities and disability groups,” she said, “to ensure their concerns around safeguards are addressed while respecting autonomy rights.”

NDP MP Alistair MacGregor says ‘no one should feel pressured to end their life sooner for lack of services and resources.’ The Hill Times photograph by Aidan Chamandy

NDP MP Macgregor said he thinks Canada is capable of doing both. “Ideally I’d like to have a system in place that respects individual agency and the right of people to choose to die with dignity,” he said, while also building up social support programs “so that people are able to live with dignity.”

Trudo Lemmens, the Scholl chair in health law and policy at the University of Toronto, told The Hill Times that the government has “prioritized this ending of life on the basis of an abstract notion of autonomy, without recognizing the social context.”

“We talk about voluntariness,” he said, “but if you know you will be put into a long-term care home, and warehoused in substandard conditions—as we saw during the pandemic—or if you are a person with a disability with no access to adequate care, these conditions will obviously influence your decision.”

Lemmens has appeared before other committees to discuss MAiD, and is scheduled to appear again as part of the joint committee’s ongoing study. He said MAiD should not be “a surrogate for social services.”

Lemmens said he was aware of other cases where the families of people with disabilities were questioning the process that led to their loved ones receiving MAiD, and provided The Hill Times with a patient request record for a person who received MAiD in B.C. The form listed “hearing loss” as the medical diagnosis relevant to the request for MAiD.

Petitclerc acknowledged that “this conversation was not easy six years ago when I arrived in the Senate, and it was not easy when we passed the updated bill in 2021.”

MacGregor said the joint committee had completed up its hearings on the state of palliative care in Canada and would next focus on advanced directives, with further hearings expected on MAiD as it relates to persons with disabilities, mature minors, and mental illness as an underlying condition.

The House of Commons voted to extend the committee’s mandate from June 23 to Oct. 17. MacGregor said the extension brought “a sense of relief” among committee members charged with examining such a “polarizing” subject.

kphilipupillai@hilltimes.com

The Hill Times

 

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