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The Guardian - UK
The Guardian - UK
World
Leyland Cecco in Toronto

Canada’s assisted dying laws in spotlight as expansion paused again

Woman holding hands with relative on hospital bed
Canada’s experiment in physician-assisted death has made international headlines in recent years. Photograph: gorodenkoff/Getty Images/iStockphoto

When Canada’s justice minister announced plans to legalise medically assisted dying nearly a decade ago, she acknowledged the proposed law might prove divisive. “For some, medical assistance in dying will be troubling,” Jody Wilson-Raybould told reporters in 2016. “For others, this legislation will not go far enough.”

A fresh delay in expanding the scope of who can access a medically assisted death has once again put a spotlight on the system, which critics and advocates agree is one of the most liberal in the world. But the two groups remain sharply divided on what that means for improving the quality of life – and death – in the country.

Medical assistance in dying (Maid) laws, crafted in response to a supreme court decision, initially permitted only terminally ill Canadians to be eligible for the procedure. But in 2019, a Quebec judge ruled that restricting access to those who had a “reasonably foreseeable death” was unconstitutional, forcing federal lawmakers to amend and expand the existing laws.

In the years since, Canada’s experiment in physician-assisted death has made international headlines – including a feature article in the Atlantic magazine last year that investigated how the country’s assisted dying laws “went wrong”. In 2021, three UN human rights experts cautioned that an expansion to the law, which permitted people with chronic conditions to apply for assisted death, would create a “two-tiered system” and push people with disabilities towards suicide.

Government figures show that 13,102 people ended their lives under Maid in 2022 – an increase of 30% on the previous year.

“Maid is different depending on what it’s provided for and how it’s provided. It’s not only one thing,” said Sonu Gaind, chief of psychiatry at Toronto’s Sunnybrook hospital. “And in that context, these expansions of assisted death in Canada are way beyond what most Canadians would actually support.”

In a survey of those 13,102 Canadians who ended their lives under Maid, the vast majority cited the “loss of ability to engage in meaningful life activities” as the reason for wanting to die. But other responses have troubled healthcare experts. More than one-third of respondents said their decision was, in part, informed by a feeling they were a perceived burden on family, friends or caregivers.

The surge means Canada has one of the highest rates of euthanasia in the world, with 4.1% of deaths aided by doctors.

“No other country has had these numbers in terms of the rate of growth after introducing assisted dying laws,” said Gaind. “The precipitous growth that we’ve had is unparalleled anywhere.”

Jody Wilson-Raybould, who introduced major legislation on medical assistance in dying.
Jody Wilson-Raybould, who introduced major legislation on medical assistance in dying. Photograph: Darryl Dyck/AP

For others, however, that increase reflects a system working as intended – and serving a group of Canadians looking to ease immense suffering.

“What this increase tells me is that Canada has paid the most attention to individual human rights and autonomy,” said Chantal Perrot, a physician and Maid provider. “An increase in deaths with Maid means to me that people are choosing to die with their loved ones around them. The last days, weeks or months of life can be horrific. Why would they want to go through that if they could have a peaceful death surrounded by their family and loved ones?”

Of the 13,102 people who died using assisted death, 96.5% had terminal illnesses or faced imminent death. Only 463 people suffering from a chronic condition accessed Maid.

“I work in the healthcare system and see people with severe chronic medical conditions all the time,” said Mona Gupta, a psychiatrist at the University of Montreal and the chair of the federal panel on Maid and Mental Illness. “The idea that 400 of them – in a country of 40 million people – had reached the point where they had exhausted all treatment options, and wanted to access Maid, does not seems extreme to me.”

In the UK there have been renewed calls for parliament to vote on a law change after a report in the Observer in December about an impassioned plea from the actor Diana Rigg to legalise assisted dying, made in a message recorded shortly before her death from cancer three years ago.

Just before Christmas, the Childline founder and broadcaster Esther Rantzen revealed how she has considered assisted dying if her lung cancer treatment does not improve her condition.

Critics of a potential British assisted dying law have warned about the difficulties in defining who is eligible, the danger of people being pressured into a decision, and subsequent attempts to widen the law.

Quebec – the province with the highest rate of Maid – is studying why people are accessing assisted dying in greater numbers each year. Officials in the province have also requested an amendment to the criminal code that would permit people to consent to medically assisted death before the onset of conditions like Alzheimer’s.

Still, a string of prominent cases that critics say reflect a broken system have put physicians on the defensive.

In one instance, a Canadian Forces veteran claimed she had been offered Maid in response to a request for a wheelchair lift or ramp at her house. While a subsequent investigation found no record that assisted death was offered, Veterans Affairs discovered four cases in which Maid had been inappropriately suggested. The case manager was suspended and the incident was referred to the Royal Canadian Mounted police.

In another case, the family of Alan Nichols said he died by euthanasia, with hearing loss listed as the sole criterion. The family reported it to police and health authorities- but neither saw cause to investigate further. The RCMP told the family that Nichols “met the criteria” for assisted death.

But physicians who provide Maid caution that anecdotes of Canadians slipping through the cracks often ignore other critical details of their respective cases, which must include a “grievous and irremediable medical condition” and do not necessarily suggest a failure in the system.

“I have never heard of a case of the Maid criteria being applied wrongly or abusively, or someone who has received Maid who should not have. I’ve heard of none reported by any of the coroner’s offices or any of their provincial oversight groups,” said Perrot. “I ask a lot of questions, but I tend to trust my patients. And so in their answers, until I’m proven otherwise, I assume they’re telling me the truth.”

However, she said that doctors cannot stop patients from lying.

“We should be very concerned, if we have reasons to believe that there are cases of Maid that are happening where people don’t fulfil the criteria,” said Gupta. “That would obviously be completely unacceptable. But we’re not seeing that reflected anywhere.”

The next battleground in the expansion of Maid is the inclusion of people with chronic mental illness. When it was forced to rework its laws, the federal government faced pressure from senators to include mental illness as a reason for accessing assisted death.

“A competent person with a mental disorder who is suffering terribly and persistently should be able to decide how they will choose to proceed with their life,” the senator Stan Kuthcher told lawmakers last year. “To deny them this right while permitting it for people whose illness is not a mental disorder is not just stigmatising, it is exclusionary.”

In December 2022, the federal government said it would temporarily pause the expansion after facing sharp criticism from healthcare providers, who feared the system was not equipped to handle cases of mental illness. Earlier this month, however, the federal government announced its second pause on expanding the scope of Maid for those with mental illness, pushing it back to 2027.

“We have to make triple sure that we’ve got the rigorous assessment and training that are in place so that people can make that evaluation – it’s critical to get that evaluation right,” the justice minister, Arif Virani, recently told reporters, adding that his government believed that physician-assisted death for someone with mental illness is different to other situations. “I don’t think the constitution mandates me or our government to provide a service, in this case a healthcare service, when it is not safe to do so and that is our determination that it is not safe at this time.”

Arif Virani, the justice minister, in Ottawa earlier this month.
Arif Virani, the justice minister, in Ottawa earlier this month. Photograph: Patrick Doyle/Reuters

Gaind, who previously chaired the Maid committee at Toronto’s Humber River hospital, has emerged as one of the country’s most vocal critics for allowing mental illness as a criterion. He previously testified to a parliamentary committee that he and other psychiatrists worry that they are unable to predict the irremediability of mental illness in patients.

He cautioned that the country’s assisted death system has become “overly permissive” and has strayed from its original aims of giving Canadians with a terminal illness the chance to prematurely end suffering.

“When you look at it at a system level, it’s like that old saying: every system is perfectly designed to deliver precisely the results that it delivers,” he said. “The bottom line is that we’re providing death to people who are not dying.”

The dispute has highlighted a fractious clash between ethics and law – where courts have found rules preventing certain groups from accessing assisted death to be unconstitutional.

“Disagreement with the law that we have does not mean that the law … is not being respected or that there are abuses,” said Gupta. “[Whether we have Maid] is up to society to decide – and society has decided through its courts and lawmakers that people who are not at the end of life can have access to Maid.”

The friction over medically assisted death comes against the backdrop of a healthcare system pushed to the brink and straining to offer adequate care to many Canadians.

Tammy Moore, head of the ALS Society of Canada, said one in four people suffering from amyotrophic lateral sclerosis choose to end their lives with Maid. “It’s not that we don’t want people to have access to [assisted death]. But we want people to have choices. And unfortunately, due to the limited services that are available to people with ALS, often they feel that they don’t have a choice,” she said.

Like other advocacy groups, ALS Canada has pleaded for funding. In Ontario, the most populous province, they say C$6m (£3.5m) – a figure that’s “not even a rounding error” – could make an immense change in the quality of life for those with ALS. But if the funding does not come, Moore fears that without financial support, more people with ALS will seek assisted death.

For Gaind, the country’s push to liberalise suicide has deterred much-needed investment in the ailing healthcare system and reshaped how society thinks about alleviating suffering.

“This focus on providing easy deaths – curing ‘suffering’ by ending life – I hope it keeps people sensitised to the reality of how people are suffering in different ways.

“Rather than saying the only thing we can do about that suffering is to end life, we should be asking how we can help with the suffering. How can we actually help people live better, help you get access to the care that they need? How can we help people live with dignity?”

For Perrot, the clashing of experts comes at the cost of patients, some of whom have been waiting for decades for the chance to end their lives on their own terms.

“Patients voices are the least that are considered. These are not people who want to talk to the media, to talk to politicians or write letters to politicians. There are people who speak to us as clinicians and we have to try to be their voice. But we’re unfortunately falling on deaf ears.”

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