https://toronto.citynews.ca/2022/08/11/experts-see-canadas-euthanasia-laws-as-threat-to-disabled/

TORONTO (AP) — Alan Nichols had a history of depression and other medical issues, but none were life-threatening. When the 61-year-old Canadian was hospitalized in June 2019 over fears he might be suicidal, he asked his brother to “bust him out” as soon as possible.

Within a month, Nichols submitted a request to be euthanized and he was killed, despite concerns raised by his family and a nurse practitioner.

His application for euthanasia listed only one health condition as the reason for his request to die: hearing loss.

Nichols’ family reported the case to police and health authorities, arguing that he lacked the capacity to understand the process and was not suffering unbearably — among the requirements for euthanasia. They say he was not taking needed medication, wasn’t using the cochlear implant that helped him hear, and that hospital staffers improperly helped him request euthanasia.

“Alan was basically put to death,” his brother Gary Nichols said.

Disability experts say the story is not unique in Canada, which arguably has the world’s most permissive euthanasia rules — allowing people with serious disabilities to choose to be killed in the absence of any other medical issue.

Many Canadians support euthanasia and the advocacy group Dying With Dignity says the procedure is “driven by compassion, an end to suffering and discrimination and desire for personal autonomy.” But human rights advocates say the country’s regulations lack necessary safeguards, devalue the lives of disabled people and are prompting doctors and health workers to suggest the procedure to those who might not otherwise consider it.

Equally troubling, advocates say, are instances in which people have sought to be killed because they weren’t getting adequate government support to live.

Canada is set to expand euthanasia access next year, but these advocates say the system warrants further scrutiny now.

Euthanasia “cannot be a default for Canada’s failure to fulfill its human rights obligations,” said Marie-Claude Landry, the head of its Human Rights Commission.

Landry said she shares the “grave concern” voiced last year by three U.N. human rights experts, who wrote that Canada’s euthanasia law appeared to violate the agency’s Universal Declaration of Human Rights. They said the law had a “discriminatory impact” on disabled people and was inconsistent with Canada’s obligations to uphold international human rights standards.

Tim Stainton, director of the Canadian Institute for Inclusion and Citizenship at the University of British Columbia, described Canada’s law as “probably the biggest existential threat to disabled people since the Nazis’ program in Germany in the 1930s.”

During his recent trip to Canada, Pope Francis blasted what he has labeled the culture of waste that considers elderly and disabled people disposable. “We need to learn how to listen to the pain” of the poor and most marginalized, Francis said, lamenting the “patients who, in place of affection, are administered death.”

Canada prides itself on being liberal and accepting, said David Jones, director of the Anscombe Bioethics Centre in Britain, “but what’s happening with euthanasia suggests there may be a darker side.”

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Euthanasia, where doctors use drugs to kill patients, is legal in seven countries — Belgium, Canada, Colombia, Luxembourg, Netherlands, New Zealand and Spain — plus several states in Australia.

Other jurisdictions, including several U.S. states, permit assisted suicide — in which patients take the lethal drug themselves, typically in a drink prescribed by a doctor.

In Canada, the two options are referred to as medical assistance in dying, though more than 99.9% of such deaths are euthanasia. There were more than 10,000 deaths by euthanasia last year, an increase of about a third from the previous year.

Canada’s road to allowing euthanasia began in 2015, when its highest court declared that outlawing assisted suicide deprived people of their dignity and autonomy. It gave national leaders a year to draft legislation.

The resulting 2016 law legalized both euthanasia and assisted suicide for people aged 18 and over provided they met certain conditions: They had to have a serious condition, disease or disability that was in an advanced, irreversible state of decline and enduring “unbearable physical or mental suffering that cannot be relieved under conditions that patients consider acceptable.” Their death also had to be “reasonably foreseeable,” and the request for euthanasia had to be approved by at least two physicians.

The law was later amended to allow people who are not terminally ill to choose death, significantly broadening the number of eligible people. Critics say that change removed a key safeguard aimed at protecting people with potentially years or decades of life left.

Today, any adult with a serious illness, disease or disability can seek help in dying.

Canadian health minister Jean-Yves Duclos said the country’s euthanasia law “recognizes the rights of all persons … as well as the inherent and equal value of every life.”

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The countries that allow euthanasia and assisted suicide vary in how they administer and regulate the practices, but Canada has several policies that set it apart from others. For example:

— Unlike Belgium and the Netherlands, where euthanasia has been legal for two decades, Canada doesn’t have monthly commissions to review potentially troubling cases, although it does publish yearly reports of euthanasia trends.

— Canada is the only country that allows nurse practitioners, not just doctors, to end patients’ lives. Medical authorities in its two largest provinces, Ontario and Quebec, explicitly instruct doctors not to indicate on death certificates if people died from euthanasia.

— Belgian doctors are advised to avoid mentioning euthanasia to patients since it could be misinterpreted as medical advice. The Australian state of Victoria forbids doctors from raising euthanasia with patients. There are no such restrictions in Canada. The association of Canadian health professionals who provide euthanasia tells physicians and nurses to inform patients if they might qualify to be killed, as one of their possible “clinical care options.”

— Canadian patients are not required to have exhausted all treatment alternatives before seeking euthanasia, as is the case in Belgium and the Netherlands.

Still, Duclos said there were adequate safeguards in place, including “stringent eligibility criteria” to ensure no disabled people were being encouraged or coerced into ending their lives. Government figures show more than 65% of people are being euthanized due to cancer, followed by heart problems, respiratory issues and neurological conditions.

Theresia Degener, a professor of law and disability studies at the Protestant University for Applied Sciences in northwestern Germany, said allowing euthanasia based exclusively on disability was a clear human rights violation.

“The implication of (Canada’s) law is that a life with disability is automatically less worth living and that in some cases, death is preferable,” said Degener.

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Alan Nichols lost his hearing after brain surgery at age 12 and suffered a stroke in recent years, but he lived mostly on his own. “He needed some help from us, but he was not so disabled that he qualified for euthanasia,” said Gary Nichols.

In one of the assessments filed by a nurse practitioner before Nichols was killed, she noted his history of seizures, frailty and “a failure to thrive.” She also wrote that Nichols had hearing and vision loss.

The Nichols family were horrified that his death appeared to be approved based partly on Alan’s hearing loss and had other concerns about how Alan was euthanized. They lodged complaints with the British Columbia agency that regulates doctors and the Royal Canadian Mounted Police, asking for criminal charges. They also wrote to Canada’s minister of justice.

“Somebody needs to take responsibility so that it never happens to another family,” said Trish Nichols, Gary’s wife. “I am terrified of my husband or another relative being put in the hospital and somehow getting these (euthanasia) forms in their hand.”

The hospital says Alan Nichols made a valid request for euthanasia and that, in line with patient privacy, it was not obligated to inform relatives or include them in treatment discussions.

The provincial regulatory agency, British Columbia’s College of Doctors and Surgeons, told the family it could not proceed without a police investigation. In March, Royal Canadian Mounted Police Cpl. Patrick Maisonneuve emailed the relatives to say he had reviewed the documentation and concluded Alan Nichols “met the criteria” for euthanasia.

The family’s parliamentary representative, Laurie Throness, asked British Columbia’s health minister for a public investigation, calling the death “deeply disturbing.”

The health minister, Adrian Dix, said the province’s oversight unit reviewed the case and “has not referred it for any further inquiry.” He pointed out that the euthanasia law does not allow for families to review euthanasia requests or be privy to hospitals’ decisions.

Trudo Lemmens, chair of health law and policy at the University of Toronto, said it was “astonishing” that authorities concluded Nichols’ death was justified.

“This case demonstrates that the rules are too loose and that even when people die who shouldn’t have died, there is almost no way to hold the doctors and hospitals responsible,” he said.

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Some disabled Canadians have decided to be killed in the face of mounting bills.

Before being euthanized in August 2019 at age 41, Sean Tagert struggled to get the 24-hour-a-day care he needed. The government provided Tagert, who had Lou Gehrig’s disease, with 16 hours of daily care at his home in Powell River, British Columbia. He spent about 264 Canadian dollars ($206) a day to pay coverage during the other eight hours.

Health authorities proposed that Tagert move to an institution, but he refused, saying he would be too far from his young son. He called the suggestion “a death sentence” in an interview with the Canadian Broadcasting Corporation.

Before his death, Tagert had raised more than CA$16,000 ($12,400) to buy specialized medical equipment he needed to live at home with caretakers. But it still wasn’t enough.

“I know I’m asking for change,” Tagert wrote in a Facebook post before his death. “I just didn’t realize that was an unacceptable thing to do.”

Stainton, the University of British Columbia professor, pointed out that no province or territory provides a disability benefit income above the poverty line. In some regions, he said, it is as low as CA$850 ($662) a month — less than half the amount the government provided to people unable to work during the COVID-19 pandemic.

Heidi Janz, an assistant adjunct professor in Disability Ethics at the University of Alberta, said “a person with disabilities in Canada has to jump through so many hoops to get support that it can often be enough to tip the scales” and lead them to euthanasia.

Duclos, the national health minister, told The Associated Press that he could not comment on specific cases but said all jurisdictions have a broad range of policies to support disabled people. He acknowledged “disparities in access to services and supports across the country.”

Other disabled people say the easy availability of euthanasia has led to unsettling and sometimes frightening discussions.

Roger Foley, who has a degenerative brain disorder and is hospitalized in London, Ontario, was so alarmed by staffers mentioning euthanasia that he began secretly recording some of their conversations.

In one recording obtained by the AP, the hospital’s director of ethics told Foley that for him to remain in the hospital, it would cost “north of $1,500 a day.” Foley replied that mentioning fees felt like coercion and asked what plan there was for his long-term care.

“Roger, this is not my show,” the ethicist responded. “My piece of this was to talk to you, (to see) if you had an interest in assisted dying.”

Foley said he had never previously mentioned euthanasia. The hospital says there is no prohibition on staff raising the issue.

Catherine Frazee, a professor emerita at Toronto’s Ryerson University, said cases like Foley’s were likely just the tip of the iceberg.

“It’s difficult to quantify it, because there is no easy way to track these cases, but I and other advocates are hearing regularly from disabled people every week who are considering (euthanasia),” she said.

Frazee cited the case of Candice Lewis, a 25-year-old woman who has cerebral palsy and spina bifida. Lewis’ mother, Sheila Elson, took her to an emergency room in Newfoundland five years ago. During her hospital stay, a doctor said Lewis was a candidate for euthanasia and that if her mother chose not to pursue it, that would be “selfish,” Elson told the Canadian Broadcasting Corporation.

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Canada has tweaked its euthanasia rules since they were first enacted six years ago, but critics say more needs to be done — especially as Canada expands access further.

Next year, the country is set to allow people to be killed exclusively for mental health reasons. It is also considering extending euthanasia to “mature” minors — children under 18 who meet the same requirements as adults.

Chantalle Aubertin, spokeswoman for Canadian Justice Minister David Lametti, said in an email that the government had taken into account concerns raised by the disabled community when it added safeguards to its euthanasia regulations last year. Those changes included that people were to be informed of all services, such as mental health support and palliative care, before asking to die.

Aubertin said those and other measures would “help to honor the difficult and personal decisions of some Canadians to end their suffering on their own terms, while enshrining important safeguards to protect the vulnerable.”

Dr. Jean Marmoreo, a family physician who regularly provides euthanasia services in Ontario, has called for specialized panels to provide a second opinion in difficult cases.

“I think this is not something you want to rush, but at the same time, if the person has made a considered request for this and they meet the eligibility criteria, then they should not be denied their right to a dignified death,” she said.

Landry, Canada’s human rights commissioner, said leaders should listen to the concerns of those facing hardships who believe euthanasia is their only option. She called for social and economic rights to be enshrined in Canadian law to ensure people can get adequate housing, health care and support.

“In an era where we recognize the right to die with dignity, we must do more to guarantee the right to live with dignity,” she said.

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Nicole Winfield in Edmonton, Alberta, contributed to this report.

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education. The AP is solely responsible for all content.

Maria Cheng, The Associated Press