Cheryl Romaire, who wears a fentanyl patch for pain from a degenerative spinal condition, was recently approved for an assisted death. Photo / Ian Austen, The New York Times
Since the government expanded the eligibility for assisted death last year to include those with disabilities, critics have been saying there should be more checks and balances.
The first time Cheryl Romaire tried to end her life under Canada's assisted suicide law, her application was rejected. But after a loosening of the law, she received approval to end her life — and she now intends to do just that.
"It felt like a weight had been lifted off my chest," Romaire said recently, as one of her cats and a dog competed for her attention at her apartment in Calgary, Alberta.
Last year, Canada changed its assisted death law, permitting people with chronic, "grievous and irremediable" conditions and physical disabilities to kill themselves, even if they are not terminally ill. And so this allowed Romaire, 46 — who has undergone 41 medical procedures in 10 years for a painful and worsening spinal cord condition but had been told her death from the condition was not "reasonably foreseeable'' — to qualify for a death on her own terms.
"You can have a good death; you can have your family there with you," she said. "It's traumatic still to them. But it's not the same as the shock of suicide, which people will do when they're at pain levels where there's no hope."
Canada is among 12 countries, including New Zealand, where assisted death is permitted in certain circumstances. Since last year, it has been one of at least three — including Belgium and the Netherlands — that allow an assisted death if the person is suffering from a chronic painful condition, even if that condition is not terminal.
Although the Canadian law was hotly debated in 2016, when it was originally enacted, it has won broad public acceptance since then, with polls showing strong support. Through December of 2021, 31,664 Canadians have received assisted deaths. Of those, 224 who died last year were not terminally ill, taking advantage of last year's amendment.
But the change in the law has reignited debate over the system. In March the law will expand again, to apply to people with some mental disorders. A parliamentary committee of lawmakers is studying what standards should govern those cases; its report is expected in the fall.
Already, though, critics are saying Canada is now going too far.
Among those critics are three United Nations disability and human rights experts, who said, in a letter to the Canadian government, that in legalising assisted suicide for disabled people who are not terminally ill, the law, as written, has devalued their lives by suggesting "that significant disability can be worse than death."
Some say that with the law's expansions, Canada is turning assisted suicide into an almost routine medical option, instead of treating it as an extraordinary measure taken in limited situations.
"Canada has the least safeguards of all of countries that allow it," said Trudo Lemmens, chair in health law and policy in the faculty of law at the University of Toronto, referring to the assisted suicide legislation generally, "and it has the most open-ended system."
"It's a state-funded, state-organised, medical system providing end of life," he continued. "What I find particularly troublesome is that there is no other jurisdiction that treats the ending of life by a physician as a standard medical practice."
Under the current law, people who are terminally ill when they apply for assisted death must be assessed by a physician or nurse practitioner. Applicants who have non-life-threatening illnesses and disabilities must undergo assessments by two separate clinicians. They must also undergo a 90-day waiting period.
While patients have the option of swallowing prescribed medication to end their lives, the overwhelming majority elect to have a physician or nurse practitioner make a lethal injection. The clinicians are the final arbiters of whether the person qualifies for assisted death. But all requests for assisted death and the deaths themselves must be reported to the federal health department, which monitors them as well.
Helen Long, CEO of Dying With Dignity Canada, a group that helps patients considering assisted deaths, said any doctors who don't follow the rules would face severe consequences. "I think the system is working fairly well," she said. "The reality is they risk losing their medical license, if not criminal charges, if they're not following the rules."
Jocelyn Downie, a professor in the law and medical faculties at Dalhousie University in Halifax, Nova Scotia, said, "There's no good evidence that the Canadian system is not working well, and we do have systems in place to detect when it is not working well."
She added, "Relative to the rest of the world, I actually think we have an excellent system."
But a series of committee hearings, including the current parliamentary ones, have provided a public forum for the rekindled debate both about the expanded law and the country's experience with assisted dying.
The committees have heard from people frustrated by being shut out of the process that led to the deaths of family members; the decision to choose death is, under the law, one in which family members have no say. Many characterised the amended law as a dangerous assault on people with disabilities and have raised the possibility that people facing economic or housing challenges may now simply give up and opt to die.
Others worried that including mental disorders will undermine suicide prevention efforts or that death was being inappropriately raised as an alternative to treatment or more support.
Experts said there were often disagreements within families when someone chooses assisted suicide. But the government says there have not been documented abuses of the system.
In a statement, Health Canada said the new law introduced extra safeguards to protect people with disabilities and mental disorders as well as increased the government's tracking of who is applying to die and of their motives. The government also said that the new law provided more oversight of doctors.
The committee that is studying how to apply the changes in the law heard hours of testimony and reviewed piles of written submissions.
Committee members wrestled with questions like whether minors should be allowed to choose assisted death and, if so, how, and whether healthy Canadians should be able to choose an assisted death before they develop dementia or any other condition that would prevent them from making a valid request.
One submission came from Christopher Lyon, whose father sought an assisted death under the amended law. The father, who lived in western Canada, had a long history of depression, suicidal thoughts and threats of suicide, Lyon said. When he fell and stopped eating, his doctors ruled him terminally ill and granted him an assisted death at age 77. The son, who has recently moved to Britain, said the process was rushed and opaque to his family.
"We still haven't gotten the records, but what we do have raises more questions than answers about the circumstances of his death, and to me that's quite alarming," Lyon said. "The current law in Canada and the level of rigour that goes into an assessment does not seem to be strong."
Canada's move toward assisted suicide was driven by the courts. The original 2016 law was a response to a 2015 decision by the Supreme Court of Canada that federal criminal law prohibiting assisted death violated the country's Charter of Rights and Freedoms. The amended law was a response to a 2019 ruling by a Quebec court that parts of the system were unconstitutional by being too restrictive.
In Calgary, Romaire, who is a divorced mother of two adult children, said the debate over the new law has at times angered her but also made her anxious that the approval she's received for an assisted death could be taken away.
Despite wearing a fentanyl patch, Romaire said she was in constant pain. Once an avid walker and yoga practitioner, she can no longer make it to the Co-Op supermarket a block from her home.
Romaire said that she has no immediate plans to go ahead with her death, partly because she first wants to sort out things with two family members who are struggling with her decision.
Romaire said she has a message for people who want to add additional safeguards or roll back the system's scope by arguing that it is a threat to people with disabilities.
"I wish they wouldn't speak for me," she said. Assisted death "is not something that somebody can be pushed into," she said. "It's a very difficult process to go through; it's not as easy as people think."
This article originally appeared in The New York Times.
Written by: Ian Austen
Photographs by: Ian Austen
© 2022 THE NEW YORK TIMES
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