Opinion

Quebec’s move to allow advance requests for MAiD ‘the worst news imaginable’

During British disability activist Liz Carr’s recent BBC documentary on euthanasia titled Better Off Dead?, a red-haired, scarlet-lipsticked vixen in a wheelchair, snorts in disbelief. Who on Earth, she demands, would “want to kill yourself over who wipes your backside?” Carr, who’s used a wheelchair since age 7 because of a rare genetic joint condition, worries that Canada’s euthanasia laws, among the most permissive in the world, could influence similar policies in Britain. She says in the rush to uphold individual autonomy, the perspectives of people like her have been sidelined.

Quebec’s decision to forge ahead with advance requests (ARs) for Medical Assistance in Dying (MAiD) as of Oct. 30 is “the worst news imaginable,” says McGill University geriatrician Catherine Ferrier, who specializes in the treatment of dementia, an “ageist, ableist attack” on the vulnerable elderly.

Quebec’s National Assembly passed legislation in 2023 to permit ARs once Parliament amends the Criminal Code, which currently requires final consent immediately before euthanasia to protect clinicians from criminal prosecution. The federal government’s Special Joint Committee on Medical Assistance in Dying, which heard competing testimony from doctors, legal scholars and disability groups on expanding MAiD for ARs, mental illness and for mature minors, issued its report the same year, recommending that Parliament change the law to allow for ARs. So far, Ottawa has failed to do so.

AR proponents such as MAiD provider Alain Naud have long argued that patients suffering from neurocognitive illnesses such as dementia and brain cancer should be able to consent while they’re still competent to do so, an ability they are likely to lose as their disease progresses.

Ferrier, the director of McGill’s Competency Assessment Clinic, who has conducted mental capacity assessments for 40 years, warns that because “everybody’s so afraid of getting demented,” real informed consent to ARs has been “thrown out the window.”

The Fourth Annual Report on Medical Assistance in Dying noted that 44,958 Canadians had died by MAiD within six years of its implementation in 2016.

The Alzheimer Society, which supports ARs for Alzheimer’s sufferers, reports that by 2030, nearly 1 million Canadians will suffer from dementia. A 2024 national survey conducted by Ipsos shows that 83 per cent of Canadians support ARs.

Experience in the Netherlands, however, has shown that ARs for people with dementia are rare – only two out of 144 people with dementia who received MAiD in 2018 had written an AR.

Naud, who has practiced palliative care for 37 years, told the parliamentary committee that he’s “never promoted medical assistance in dying,” and that imposing his will on a patient “smacks of a medical paternalism that has no place in 2022.” He also testified that AR safeguards are stringent; that “the physicians involved are able to . . . identify cases of coercion or abuse.”

Ferrier describes the “the terror of the sane person looking at someone” who might dribble when speaking. She worries about the additional burden on families faced with deciding when to activate an AR. She has witnessed conflict among the families of her patients, she says, and is concerned that ARs will further devalue the lives of patients.

“When I do a competency assessment, it usually ends up being about money.”

“Because (when) I do a competency assessment, it usually ends up being about money … How much of the money, how much inheritance” will be eaten up by costly dementia care, which can add up to thousands of dollars a month? Even burned-out but well-meaning families might end up clashing over the timing of euthanasia. And how, Ferrier wonders, will this be implemented, given the nationwide dearth of geriatricians?

She says consent to a future treatment decision “cannot be as free and informed” as ethics demands; that the present self cannot know with any certainty what the future self might find acceptable, or even pleasant. For example, Ferrier says she doesn’t consider it real consent if a patient has an AR request for MAiD for a stage when the patient cannot use the toilet independently because “(the patient) doesn’t know what it’s going to feel like when it happens. You don’t know if you’ll be happy,” or if you’ll be suffering.

University of Toronto bioethicist Ross Upshur was one of the first doctors to sign on to MAiD. He wrote a brief for the lawyers fighting for legalized assisted death in British Columbia’s Carter case that eventually led to the Supreme Court of Canada’s decriminalization of euthanasia in 2015. As a member of the Council of Canadian Academies’ expert panel for MAiD, Upshur refutes the narrative that ARs are a simple and straightforward issue, saying “the issues involved in ARs for MAiD are immensely complex.”

Upshur says he doesn’t understand why lawmakers don’t step back and examine the broader context of ARs for dementia. Given the tsunami of Alzheimer’s cases on the horizon, he wonders why Parliament doesn’t instead allocate the financial and human resources needed to better support those impaired by failing cognition. He suggests that instead of warehousing such patients, Canadians could pay caregivers to relieve family stress or follow Scotland’s lead in creating supportive communities for dementia.

In the Netherlands, where physicians are tasked with implementing ARs for euthanasia, too many doctors have opted out. He says they find it too much responsibility to bear. For example, in 2016, Dutch geriatrician Marinou Arends dropped a sedative into her patient’s coffee to carry out the AR of this institutionalized 74-year-old woman who bit other patients and defecated on the floor of their rooms. Despite the doctor’s precaution, the woman physically resisted the injection and had to be held down to complete the procedure. Upshur says he wonders if family members would be capable of carrying out this emotional step.

Judes Poirier, associate director of McGill University’s Centre for Studies in the Prevention of Alzheimer’s Disease, told the parliamentary MAiD committee that scales measuring judgment and suffering could pinpoint the right moment to activate an AR. Upshur, however, disputes this. He says such scales are research tools that are neither statistically nor clinically validated for assessment of ARs for MAiD.

Besides, Upshur says, focusing on such metrics reveals a cognitivist bias that reduces a whole human being to something less, something that is impoverished and small. That, he says, is a kind of ableism. “What if you can’t reason,” he asks, “but you can still laugh?”

With respect to consent, Upshur says there are “so many different permutations and combinations” of how a person could descend the trajectory of dementia that prioritizing one’s present self over a future self is inherently problematic.

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Disability activist Liz Carr doesn’t have dementia, but her punch-to-the-gut message can apply to progressive brain illnesses, too: You may think we’re better off dead, but we’re thrilled to be alive.

 

 

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1 Comment
  • Mike Fraumeni says:

    As a general supporter of MAID, I do find this article well written and the logic used well thought out. That being said, I’m surprised there was no mention of how it is possible to view negating advance directives could be unethical in various circumstances. Perhaps the author didn’t think of this, I don’t know. It is well known that advance care planning in healthcare is generally viewed as a something positive. Surely advance directions in MAID may be, in certain circumstances, part of advance care planning in healthcare. Even the Canadian Hospice Pallliative Care Ass’n has a page on it’s website concerning advance care planning:

    “The Importance of Advance Care Planning”
    “In the tapestry of life, we often find ourselves weaving between moments of joy, triumph, and unforeseen challenges. While it’s easy to celebrate the highs, there’s a topic that many of us tend to avoid—conversations about the inevitable lows, the uncertainties that accompany the passage of time.

    Advance care planning, a subject that might initially feel daunting, has become a vital compass in my life, guiding me through the delicate terrain of healthcare decisions and ensuring my values are honoured when I may not be able to express them.” …
    https://www.chpca.ca/blog/the-importance-of-advance-care-planning/

Authors

Ferrukh Faruqui

Contributor

Ferrukh Faruqui is an Ottawa physician and freelance journalist who writes about medical ethics. She is currently a fellow in the Dalla Lana Fellowship in Journalism and Health Impact.

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