‘When you have severe disabilities, life isn’t over’: Expansion of MAiD raises concerns

Roger Foley is determined to live life as best he can.

At age 49, he can no longer walk. He was born with spinocerebellar ataxia, a genetic disease that has progressed to the point where he needs help to swallow, bathe and empty his bowels. He’s confined to a hospital room in London, Ont. – where he has been offered Medical Assistance in Dying (MAiD) on four occasions – because he can’t get the supports he needs to live at home. Before his condition worsened, Foley was the National E-Business Manager for Dominion Securities and looked after his ailing father.

In 2020, Foley begged parliamentarians in the House of Commons Standing Committee on Justice and Human Rights to reject Bill C-7, the law that was set to expand MAiD to individuals whose natural death was not reasonably foreseeable (Track 2 MAiD).

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Bill C-7 received royal assent in 2021. Now, a coalition of Canadian disability groups that filed a Charter of Rights challenge to Track 2 MAiD is garnering international as well as domestic support. Opponents, however, argue that the lawsuit, filed in the Superior Court of Ontario in September, undermines the constitutional rights of disabled people.

Dutch bioethicist Theo Boer, who once served on a Dutch euthanasia review committee, supports the charter challenge. He sees similarities between Canadian MAiD expansion and the Dutch experience, saying that “for an increasing number of people (in Holland), euthanasia becomes the default way to die.”

Matthew Valliere, president of the New York-based Patients’ Rights Action Fund, which works to prevent expansion of physician-assisted suicide for the terminally ill in the United States, agrees, calling Canada’s Track 2 MAiD “a complete disaster.”

But Dying with Dignity Canada, which lobbies for the expansion of MAiD, expressed disappointment at the charter challenge. The group claims the law upholds the autonomy of disabled people and launched its own court challenge last August to lift restrictions on MAiD for the mentally ill.

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Krista Carr is laser focused. As the executive vice-president of Inclusion Canada, which advocates for society’s full inclusion of people with disabilities, she’s working with Indigenous Disability Canada/British Columbia Aboriginal Network on Disability Society, the Council of Canadians with Disabilities and the Disabled Women’s Network of Canada to repeal Bill C-7, which activists fought hard to prevent from being enacted in the first place.

Inclusion Canada was an intervenor in the Carter case, which led to Parliament enacting MAiD for terminal patients in 2016. Even then, says Carr, the group knew where things were heading. But it couldn’t predict how quickly Canada would broaden eligibility.

Two individual plaintiffs – only one agreed to be identified — have joined the fight. In 2023, 40-year-old Kathrin Mentler, who struggles with suicidality, was shocked when a clinician at Vancouver General Hospital suggested she consider MAiD as a treatment option.

Carr says she “can’t count” the number of similar stories she’s heard from people who are suffering not from their disabilities but from lack of supports to live. When the disabled seek help to lead dignified lives only to be offered MAiD – which is both cheap and available – their sense of worth plummets, Carr adds.

The coalition’s message is clear: Prioritizing the autonomy of privileged Canadians who seek a controlled death over the safety of disabled people without privilege is discrimination.

Since announcing the lawsuit, Carr says the coalition has been flooded with emails from Canadians pleased that “somebody is finally doing something” about Bill C-7. Some able-bodied Canadians say they can’t believe that Canadian doctors have been legally killing non-dying patients since 2021. “We do that?” they ask incredulously, says Carr.

There’s some opposition too. It comes from the able-bodied afraid of losing control in the face of future disability, says Carr. It reminds her of the hostility in Parliament when disabled community members, some in wheelchairs, testified against adopting Track 2 MAiD: “The bias was so evident,” she says.

“The bias was so evident.”

Doctors and nurses aren’t immune to ableist bias, either, she adds. They can unconsciously steer disabled people to death by implying their lives aren’t worth living.

Carr says that although Inclusion Canada and its partner organizations hear accounts “every single day” about disabled people being offered MAiD instead of the health or social supports they need, she’s frustrated that federal agencies aren’t collecting this data. Track 2 accounted for 682 deaths as of 2022. Without further updates, it’s impossible to know just who is accepting MAiD. Is it members of the queer community? Disabled people giving up because they can’t get the support they need to live?

Recent reports from the Office of the Chief Coroner of Ontario reveal that vulnerable people, some with untreated mental illness, have died through Track 2 MAiD. Of 116 deaths in 2023, 40 per cent reported being isolated during their lives, while nearly 63 per cent reported being disabled. Women made up 61 per cent of deaths, which occurred more often among those living in the poorest neighbourhoods.

Carr calls these “real people with real stories.” But when gaps in data can’t compile evidence, she says, these cases are dismissed as anecdotal and alarmist.

Stefanie Green, past president of the Canadian Association of MAiD Assessors and Providers (CAMAP), declined an interview. So did CAMAP, which emailed a statement advising that it “does not comment on court challenges, nor does it advocate for legislative changes related to MAiD.”

The federal government invited Boer, a professor at the Protestant Theological University of Groningen, to Montreal as an expert witness in 2019’s Truchon v. Canada case, in which the plaintiff, who suffered from cerebral palsy but had years to live, sued for the right to die. Boer says he was “very disappointed” that Quebec ruled as unconstitutional the “reasonable foreseeability of natural death” clause contained in federal MAiD legislation. This decision led to the enactment of Bill C-7 18 months later.

In 2023, Boer wrote to British lawmakers to warn against enacting euthanasia legislation there. He particularly cited the rapid expansion of Canadian MAiD laws from 2016 to 2023.

Before resigning from euthanasia review committee work in 2014, Boer reviewed 4,000 Dutch euthanasia cases. At first, he says, he felt reassured that The Netherlands had struck the right balance between respect for autonomy and protection of human life. But as euthanasia numbers rose, and doctors began euthanizing people with decades still to live, he grew disillusioned. In 2014, non-terminal patients with mental illness accounted for 41 euthanasia deaths; by 2023, that number increased to 138.

He says 5.4 per cent of Dutch deaths were euthanasia-related in 2023 and adds that it is on track to increase this year. Boer is troubled that 80 per cent of the Dutch public believe it’s normal, “just like the doctor provides a flu shot.”

Offering death to disabled people is like saying “people like you . . . are beyond hope. We not only sympathize with your death wish but we will organize your death for you.”

Boer also describes the paradoxical but compelling vulnerability of the affluent. Some Dutch citizens living in expensive parts of Amsterdam, where the euthanasia rate is 15 per cent, choose death because they cannot face the emptiness of lives without deceased partners, without grown children busy with their own lives.

In the U.S., physician-assisted-dying for patients with a prognosis of six months or less to live is legal in 10 states as well as in Washington, D.C. Doctors prescribe an oral cocktail that eligible patients swallow.

“We don’t call it suicide,” because these patients are dying, explains Geoff Sugerman, Death with Dignity’s national political strategist. His organization upholds the right of competent adults to choose the manner of their death without state interference. But following Canada’s MAiD pathway is a “big no.” Sugerman says that’s not the U.S. way, and his organization has “never wavered” from this position.

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Roger Foley continues to advocate against MAiD. On Nov. 5, he made his third appearance on a YouTube podcast hosted by Canadian combat veteran and resiliency coach Kelsi Sheren. He lay propped up in his hospital bed, dressed in his hospital gown, occasionally slurring his words.

“I’m doing all I can,” he told listeners. “I’m not going to give up, until my last breath.”