TORONTO — Nearly three years into her battle with terminal breast cancer, Audrey Parker, a 57-year-old former television makeup artist who loved doling out fashion advice, decided it was time.
Though she was approved, there was a problem.
Under Canadian law, patients must be lucid enough to give informed consent to their deaths twice: at the time the request is made and immediately before they are administered the cocktail of life-ending drugs.
Parker told CTV News that she wanted to experience one final Christmas, but she feared that if she waited that long, the disease and her medication might rob her of the mental cognition to consent a second time. She was forced, she believed, into dying earlier than she intended.
In her final farewell on Facebook, published the morning of Nov. 1, Parker wrote that while “dying is a messy business,” those approved for a medically assisted death should be free to “figure out when the right time to die is upon them.” Later that day, she was given a lethal injection and died.
Since Canada’s supreme court ruled in 2015 that adults suffering from “grievous and irremediable” medical conditions whose deaths were “reasonably foreseeable” had the right to a physician-assisted death, more than 3,700 Canadians have received one.
But criticism of the country’s medically assisted dying legislation, which was passed by Prime Minister Justin Trudeau’s government in 2016, has bubbled to the surface following Parker’s death.
Critics say it forces patients to make a cruel choice: forgoing the death they want and prolonging their suffering; or ending their lives before they want to. Neither scenario provides them the autonomy to end their lives on their own terms.
“It’s one of the tragic ironies of our law,” said Shanaaz Gokool, the chief executive of Dying With Dignity Canada.
Cases like Parker’s are “definitely not rare,” said Gary Rodin, the doctor in charge of the supportive care department at the Princess Margaret Cancer Center in Toronto.
“The ability to control the circumstances of dying is very important for people who choose physician-assisted death,” he said.
When Canada was drafting the legislation, two independent advisory committees recommended that the government permit the use of “advance requests,” written instructions that detail the terms for a physician-assisted death that must be followed even if the person is unable to provide late-stage consent.
But others voiced opposition, fearing the inclusion of “advance requests” would harm vulnerable people, particularly those with degenerative neurological disorders such as dementia, who may be unable to speak for themselves and forced instead to have others decide whether they live or die.
“For those who care for them, it is difficult or impossible to know what the person with dementia comes to value over time, especially if those values are at odds with previously expressed desires,” Mimi Lowi-Young, the chief executive of the Alzheimer Society of Canada, testified before a parliamentary committee.
The government opted to leave out advance requests as a safeguard.
Jocelyn Downie, a professor of health and ethics law at Dalhousie University and a member of one of the advisory committees, said the decision has had unintended consequences.
Not only are people being forced to die earlier than they wish but some patients also are dialing back their pain medication before their physician-assisted death so they are lucid enough to consent, even though it can cause them excruciating suffering.
According to Health Canada, loss of capacity is the top reason requests for the procedure are declined.
Downie notes that there is a distinction between cases like Parker’s and the more ethically fraught ones of those with dementia, because “there is no way you can argue Parker is going to change her mind.”
Moreover, she added, people with dementia frequently spell out their wishes for their end-of-life care in advance directives, which are supposed to be respected by their health-care providers and powers of attorney. They may indicate, for instance, that they wish to refuse treatment in the event of a pneumonia or ask to decline tube feeding if they can no longer eat on their own.
“To say the complexity of the situation with dementia means we shouldn’t allow any requests at all doesn’t work,” Downie said. Asked in Parliament whether the government would amend its medically assisted dying law, Ginette Petitpas Taylor, the federal health minister, expressed sympathy for Parker’s plight.
“If I could have given authorization for her advanced request, I would absolutely have done so,” she said. “But as parliamentarians, the laws we make are for all Canadians.”
Canada’s law required the government to commission an independent study focused on whether the law should be expanded to include three types of patients: those like Parker who want to make advance requests, patients whose sole purpose for seeking a physician-assisted death is mental illness, and mature minors.
The Council of Canadian Academies, a nonprofit with a public policy focus, will release the report next month. It will summarize the evidence but will not make any recommendations.