A British Columbia woman with a rare neurodegenerative disease says a “shadow has lifted” now that she knows she would meet the eligibility criteria for a medically assisted death if she wanted one.
As a result, Julia Lamb, 28, who uses a wheelchair and requires nearly around-the-clock care, has decided to drop the constitutional challenge she and the British Columbia Civil Liberties Association (BCCLA) filed in 2016, days after Ottawa passed a law that limited medical assistance in dying to patients whose deaths are “reasonably foreseeable.”
“For years, a shadow loomed over me," Ms. Lamb said. "I feared a future where I was trapped in pain and forceful suffering as my disease would continuously progress, but not kill me. Now that all-familiar shadow has lifted.”
Ms. Lamb’s case, which was scheduled to go to trial in November, took an unusual turn when the federal government’s medical expert explained in a written submission that Ms. Lamb would, in fact, be eligible for an assisted death – largely because a consensus has developed in the medical community over the past three years that a patient’s death does not have to be imminent to count as reasonably foreseeable.
Ms. Lamb and the civil liberties group asked for an adjournment and it was granted last week.
The outcome is a high-profile example of how the application of Canada’s assisted-dying law is evolving through daily decisions on the front lines of medicine, rather than solely through court rulings.
Madeline Li, leader of the assisted-dying program at Toronto’s University Health Network and the expert who wrote the pivotal submission, told The Globe and Mail Ms. Lamb would likely qualify “without needing to remove the reasonably foreseeable criteria from the law.”
If Ms. Lamb, who has spinal muscular atrophy, were to announce that she planned to stop using the ventilator that helps her breathe at night and refuse treatment for the inevitable chest infection, she would meet the reasonably foreseeable death requirement, Dr. Li said.
Crucially, Ms. Lamb – and patients like her – would not actually have to do that to qualify.
“There’s been a growing consensus among medical practitioners … that in order to have a reasonably foreseeable death, a patient doesn’t need to refuse preventative care, develop a horrible infection [and] develop bed sores that become infected,” said Grace Pastine, the BCCLA’s litigation director.
“They don’t need to refuse food and water to make their deaths reasonably foreseeable. This is incredibly welcome news because, in fact, since the law was passed, many Canadians have done just that.”
Ms. Lamb said on Wednesday that she has no plans to pursue an assisted death now, but she was relieved to know she had the option if her condition worsened.
She said that although she has deteriorated physically since filing her claim, she has also got married, travelled, volunteered and made art “surrounded by supportive family and friends that fill my world with light.”
She added that she hoped the expert evidence in her case would reassure doctors about what counts as a reasonably foreseeable death.
Kelsey Goforth, the support program manager for the advocacy group Dying with Dignity Canada, said the vague wording of the assisted dying law has led to much more restrictive application of the rules in some parts of the country.
“In some cases, clinicians are telling patients that they must have a prognosis of one or two years left in order to qualify for [medically assisted death,] when that is simply not accurate,” Ms. Goforth said by e-mail.
Dr. Li, a cancer psychiatrist who provides oversight for all medically assisted deaths at UHN’s hospitals, emphasized in her interview that she has not assessed Ms. Lamb for her eligibility.
Instead, Dr. Li described in her report why she believed that, if Ms. Lamb were to apply, she would meet the current criteria for having a “grievous and irremediable” medical condition, one of which is that natural death be reasonably foreseeable.
“Initially, people interpreted that as being very near the end of life,” Dr. Li told The Globe.
But the definition has gradually become broader, she said, in part because a 2017 Ontario Superior Court decision confirmed that doctors have discretion in interpreting the law.
She said a clinical practice guideline published by a national association of Canadian assisted-death providers in 2017 also moved the needle: It encouraged doctors and nurse practitioners to read the vague term broadly, with no specific measuring of how long a patient has left to live.
Last week, a Quebec Superior Court judge struck down the reasonably foreseeable death clause and a similar one in Quebec’s end-of-life law.
The judge gave the federal and Quebec governments six months to deal with the fallout. But she allowed the plaintiffs, Nicole Gladu, 73, and Jean Truchon, 51, to proceed with their bids for assisted deaths.
Legal experts had warned Prime Minister Justin Trudeau’s Liberal government that the reasonably foreseeable clause in its legislation was at odds with the Supreme Court decision that overturned the ban on medically assisted dying.
Mr. Trudeau has said his government was trying to balance respecting the Charter rights of suffering patients with protecting the vulnerable.
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