Disability advocates and health policy experts say special joint committee studying Canada’s assisted dying legislation must investigate how MAID is enforced before expanding access , following reports of people obtaining medical assistance in dying because they lack access to adequate housing or other forms of social support.
CTV News reported April 13 that “a 51-year-old Ontario woman with severe chemical sensitivities” requested and received medical assistance in dying after a frustrated two-year search for affordable housing “free of cigarette smoke and cleaners.” chemicals”. The report adds that four Toronto doctors wrote to government housing and disability officials on the woman’s behalf, saying they found it “unconscionable that no other solution is being offered to this situation other than help medicine to die for”.
Independent Senator Chantal Petitclerc (Grandville, Quebec), who sponsored the 2021 bill expanding access to MAID beyond those whose death was “reasonably foreseeable,” said hill time it was difficult for her to comment without knowing the specifics of each case, but said she was “very disturbed” by what she had read so far.
“Medical assistance in dying is not and should never be something that anyone will have access to because we are not doing enough as a country, as a province, to provide the care, the services , the tools 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 tasked with the statutory review of the law, said hill time that “no one should feel compelled to end their life early for lack of services and resources”.
“At the same time, we can’t hesitate to say this is a reality for so many people with disabilities in Canada,” MacGregor said, citing Statistics Canada data that indicates people with mild and severe disabilities are more likely below the poverty line than the general Canadian population.
Referring to the news reports, Petitclerc said she recognized “it was a fear” expressed by groups representing people with disabilities.
“We had them as witnesses, we listened to them and they had very strong concerns,” Petitclerc said. But, she added, the text of the 2021 legislation made it clear that there had to be safeguards in place “to prevent something like this from happening”.
“So what exactly happened?” And have we failed? You have to watch it closely. »
David Onley, a former lieutenant governor of Ontario who now teaches at the University of Toronto at Scarborough, said hill time that “all three levels of government” failed the woman in the CTV News report, who lived in “phenomenal discomfort” for two years while searching unsuccessfully for adequate housing.
“There are two forms of assisted dying. One for medical reasons where the person has no chance of recovery and lives in intense physical and psychological pain. It doesn’t bother me as much,” said Onley, who uses a wheelchair. “As opposed to politically assisted dying, where the various politicians and various other people in the structure of government simply fail to do their jobs.”
Health Canada is aware of concerns that MAID is 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 that death 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, which added a second track for people who were in intolerable pain but were not near the natural end of life. 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 guarantees.
According to Statistics Canada, there were 5,425 physician-assisted deaths in Canada in 2019, representing 1.9% of all deaths in Canada. This number rose to 7,383 medically assisted deaths in 2020, or 2.4% of all deaths. Cancer was the underlying condition for two-thirds of all requests during those years, and three-quarters of all applicants eventually received MAID.
In a written statement to hill timeHealth Canada said it is aware of concerns that some people may seek MAID “in the absence of appropriate housing or other supports”.
The unsigned statement outlined “rigorous eligibility criteria and strong procedural safeguards” intended to ensure informed consent and guard against coercion, including recent changes to MAID legislation that require physicians to s ensure that persons seeking MAID are “informed of the supports available to them,” in order to “identify and possibly address sources of suffering and vulnerability that could lead the person to seek 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 on Statutory Review of MAID Legislation in Canada began its work under the previous Parliament, but was only able to meet three times before Parliament dissolved in June 2021 to general elections. The revived 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), co-chair, and Independent Senator Stan Kutcher (Nova Scotia), a prominent psychiatrist.
Balancing individual rights with structural injustices
Physician-assisted dying advocates tend to speak of individual agency and the right to control one’s own end-of-life decisions, while disability advocates who criticize the MAID regime tend to speak of structural injustices and the broader social context of ableism.
Helen Long, CEO of Dying With Dignity Canada (DWDC), said in a written statement that “there are clear gaps in the health and social care systems that need to be addressed, but we cannot refuse MAID to those who want to end their suffering because of the failures of these separate systems.
Long described the MAID regime on the one hand and health and social services on the other as parallel priorities that both should receive sufficient attention from governments. “DWDC urges the government to work and consult directly with people with disabilities and disability groups,” she said, “to ensure that their concerns about safeguards are addressed while respecting the rights to autonomy”.
NDP MP Macgregor said he thinks Canada can do both. “Ideally, I would like to have a system in place that respects individual agency and people’s right to choose to die with dignity,” he said, while putting in place social support programs “so that people can live with dignity.”
Trudo Lemmens, Scholl Chair in Health Law and Policy at the University of Toronto, said hill time that the government has “prioritized this end of life on the basis of an abstract notion of autonomy, without recognizing the social context”.
“We talk about volunteering,” he said, “but if you know you’ll be placed in a long-term care home and stored in substandard conditions — like we’ve seen during the pandemic — or if you are a disabled person with no access to adequate care, these conditions will obviously influence your decision.
Lemmens has appeared before other committees to discuss MAID and is due to appear again as part of the joint committee’s ongoing study. He said MAID should not be “a substitute for social services”.
Lemmens said he is aware of other cases where families of people with disabilities question the process that led to their loved ones receiving MAID, and provided hill time with a patient request file for a person who received MAID in BC. The form listed “hearing loss” as a medical diagnosis relevant to the request for MAID.
Petitclerc acknowledged that “this conversation was not easy six years ago when I came to the Senate, and it was not easy when we passed the updated bill in 2021.”
MacGregor said the joint committee has completed its hearings on the state of palliative care in Canada and will then focus on advance directives, with further hearings expected on MAID as it relates to people 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 October 17. MacGregor said the extension has brought “a sense of relief” among committee members tasked with examining such a “polarizing” topic.