She's 47, anorexic and wants help dying. Canada will soon allow it

[July 17, 2023]  By Anna Mehler Paperny

TORONTO (Reuters) - Lisa Pauli wants to die.

The 47-year-old has wrestled with the eating disorder anorexia for decades; she says she has had a warped relationship with her body since age 8.

These days, Pauli says, she weighs 92 pounds and may go days without eating solid food. She says she is too weak to carry groceries home without stopping for breaks.

"Every day is hell," she said. "I'm so tired. I'm done. I've tried everything. I feel like I've lived my life."

Pauli cannot legally get medical help to die - yet.

An expansion of the criteria for medically assisted death that comes into force in March 2024 will allow Canadians like Pauli, whose sole underlying condition is mental illness, to choose medically assisted death.

Canada legalized assisted death in 2016 for people with terminal illness and expanded it in 2021 to people with incurable, but not terminal, conditions. The legal changes were precipitated by court rulings that struck down prohibitions on helping people to die.

The new mental health provision will make Canada one of the most expansive countries in the world when it comes to medical assistance in dying (MAID), according to an expert panel report to Canada's parliament.

Proponents of assisted death - which is still a novel concept in many parts of the world - say it is an issue of personal autonomy.

But six disability rights and religious advocates told Reuters that the pace of the planned changes to the assisted death framework in Canada brings additional risks of people opting for MAID because they are unable to access social services - that lack of which could exacerbate their suffering.

Canada's Justice Minister, David Lametti, dismissed criticism that the country was moving too fast or opening up the system to abuse. Some disability advocates have demanded rolling back the current framework because they argue it puts people with disabilities at risk.

"We have gotten where we are through a number of very prudent steps," Lametti said in an interview with Reuters in June. "It's been a slow and careful evolution. And I'm proud of that."

In 2021, the most recent year available, 10,064 people died through medically assisted death, about 3.3% of deaths in Canada that year. That compared to 4.5% in the Netherlands and 2.4% in Belgium, where assisted dying has been legal since 2002, according to each country's official data.

The vast majority of assisted deaths in Canada conformed to the legal rules but provincial authorities deemed a small number worthy of investigation, according to previously unreported provincial government data. Provinces and territories are responsible for health care in Canada.

In 2021-22, Quebec found 15 assisted deaths, 0.4% of the total, did not follow the rules. The province referred the cases to Quebec's self-governing medical body and medical facilities, provincial spokesperson Marie-Claude Lacasse said. In six of those cases, the person did not have a serious and incurable condition, according to a provincial commission.

In British Columbia, government officials have referred 19 assisted death cases to regulatory bodies and a further two to law enforcement since 2018, according to a provincial spokesperson who did not provide further details.

None of the referrals in the two provinces resulted in disciplinary action for doctors, regulatory bodies said, declining to provide further details.

Four other provinces reported no problematic cases of medically assisted death. Other provinces and territories including Ontario, Canada's most populous province, did not respond.

30,000 MEDICALLY ASSISTED DEATHS

More than 30,000 people have died with medical assistance in Canada since 2016, more than 10,000 of them in 2021 when the law was expanded to people whose deaths were not "reasonably foreseeable." Even after the change in the legislation, about 98% of the assisted deaths in 2021 were people deemed near their natural death, according to Health Canada data.

"So far nothing I see would suggest that we need to worry about having gone too far," Lametti said.

The procedure is only available to people covered by a Canadian healthcare program. It requires a written application and assessments from two independent medical practitioners, including at least one specialized in their condition if the applicant is not near their natural death. The procedure frequently involves an injection administered at home.

Lametti said the federal government is considering recommendations from a parliamentary committee to allow advance requests and "mature minors" - people under 18 deemed capable of making this decision - to access assisted death.

Quebec passed a law June 7 that would allow people to make advance requests for assisted death that would go into effect when they reach a predetermined point of incapacity due to Alzheimer's or similar conditions.

REUTERS/Carlos Osorio

But Georges L'Esperance, president of the Quebec Association for the Right to Die with Dignity, said it could take up to two years for the provision to go into effect.

Dying With Dignity Canada has organized nearly 10,000 letters this year to government officials seeking to legalize advance requests across Canada, spokesperson Sarah Dobec said.

Lametti did not say whether the federal government – which is responsible for administering the criminal code - would challenge Quebec's law in the courts. When it comes to minors and advance requests, he said: "We need more time" to gauge public opinion and address policy questions.

Pauli first raised the idea of assisted death with psychiatrist Justine Dembo in April 2021.

Dembo served on an expert panel on assisted death and mental illness that presented a report to Canada's parliament last year. She assesses people for MAID although on that visit Pauli was seeing her for body dysmorphic disorder.

Pauli has tried a multitude of treatments and been hospitalized twice but said she still thinks constantly about what she has eaten; what she will eat.

Dembo told Pauli she could be eligible for assisted death once Canada's law changes.

"She's undergone very high-quality treatments and they just have not made an impact," she said.

When Dembo assesses people for MAID, she said, she treats it as "a last resort," and tries to determine whether they have received all available medical and social supports.

Pauli says she plans to apply for MAID once she is eligible. When Pauli first broached the possibility of getting help dying, her mother Mary Heatley could not accept it.

"The wind knocked out of me. … I just couldn't imagine her not being in this world," she said in an interview.

But Heatley talked to her daughter and realized what she was going through.

"She just could not foresee another 10, 20, whatever years of this, living with this eating disorder," she said.

"I say to myself, 'You have to try and remember. This is what she wanted. It's her life.' … And I would just have to go on without her."

MEDICAL CRITERIA

Some medical experts say mental illness alone should not be a criterion for assisted death. It can be difficult to determine whether a mental illness is truly irremediable, as the law requires, and to differentiate between pathological suicidality and a rational desire to die, says Sonu Gaind, chief psychiatrist at Toronto's Sunnybrook Health Sciences Centre.

"We don't even understand the biology of most mental illnesses," he said.

Six activists said Canada's expansion of assisted death puts people with intellectual and physical disabilities, low incomes or other vulnerabilities at risk.

"My biggest fear is that we go to this absolute terminal end and people die but we haven't invested time, money, people in putting the things in place that would mean that people don't want to consider" assisted death, Michelle Hewitt, co-chair of the advocacy group Disability Without Poverty, said in an interview.

Hewitt pointed to a widely reported case of a British Columbia man, Sean Tagert, with amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease who opted for medically assisted death in 2019 after he struggled to get 24-hour care.

"[H]e was very clear on what he wanted - more care hours at home - and when he was told he would have to move to a care facility a distance from his family, particularly his young son, he used MAID," Hewitt wrote in an email.

Social media posts by Tagert's family said that finding care was "a constant struggle and source of stress for Sean".

The reported cases of people resorting to medically assisted death in part due to lack of supports are "tragic," Lametti said.

But "you can't get MAID simply because you're having some social challenges or economic challenges. ... Unless they fall into the medical criteria, they can't access."

While the reported numbers of problematic assisted deaths in Canada are low, some opponents of assisted death in other jurisdictions are using the country's experience as a cautionary tale, three people involved in the debate in Britain told Reuters.

"Canada is being used primarily as an argument against us, not an argument in favour," said Charles Falconer, a British Labour peer who supports assisted death for people with a terminal illness in Britain, where it is not legal.

"It does in one sense [represent a slippery slope], doesn't it, because it started off with terminal illness and it's ended up with non-terminal illness and mental illness."

($1 = 1.3211 Canadian dollars)

(Reporting by Anna Mehler Paperny; Editing by Denny Thomas and Suzanne Goldenberg)

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