Fear of losing access to medical assistance in dying put 'panic' in woman with terminal cancer, says son
Medical Assistance in Dying law under review after Quebec court ruled parts of it are too restrictive
After she was diagnosed with terminal cancer, Carolyn Zicari was told that her access to medical assistance in dying could be revoked if the disease progressed to affect her mind and ability to consent.
"That kind of put a panic in us. ... You certainly don't want to end the life prematurely," her son Mike Cormier told The Current's Matt Galloway.
"However, the thought of her losing that eligibility and suffering for several more months possibly, and slowly deteriorating, just seemed like a tragic outcome."
Zicari was diagnosed in early December. She refused treatment — doctors agreed it wouldn't be effective — and met with a palliative care doctor within days. She was warned that as the cancer progressed, her symptoms could lead to confusion, which would make her ineligible for MAID.
To receive MAID, a patient must answer a series of questions, on the same day the procedure is administered. If the patient is deemed incompetent, assistance in dying cannot be offered.
"She was so adamant that she did not want to live a life of dependence, in a joyless body," said Cormier.
His mother waited to spend one final Christmas with her children and grandchildren, then called the hospital to ask for an appointment. She died on New Year's Eve, less than a month after her initial diagnosis.
"The thing that comforted me most was that realization that she isn't deciding to die — that decision was made for her," Cormier said.
"She just wants to go peacefully, with some dignity."
Jocelyn Downie, a professor of law and public policy at Dalhousie University, said there are no firm figures for the number of people receiving MAID earlier over eligibility concerns.
"But we certainly have a lot of reports from family members, and also MAID assessors and providers, that this is a real concern for people. It's causing a lot of anxiety," said Downie.
The federal government is undertaking a review of MAID and whether access should be extended, allowing Canadians two weeks to submit their views online.
The move comes after a Quebec court ruled in September that the 2016 law is too restrictive, overturning the clause that a person's death must be "reasonably foreseeable."
Downie explained that "reasonably foreseeable" means that either the time or specific cause of a person's death can be confidently predicted.
In the Quebec case, the plaintiffs were suffering from long-term disabilities, but with no immediate risk of death, she said.
"They had extreme life circumstances that caused them enduring and intolerable suffering, but they couldn't access MAID because of the 'reasonably foreseeable' criterion."
If the review of the law results in the removal of the clause, "it means that an additional group of people will have access," Downie said.
"We can protect the people who need to be protected without the provision 'reasonably foreseeable,'" she told Galloway.
"By taking it out, what we're not doing then is protecting people from themselves."
Trudo Lemmens, a professor of health law and policy at the University of Toronto, said there are disagreements about what a widening of MAID criteria would mean, but he's worried about the message it could send.
He said MAID could become a system that promotes the idea that chronic physical or mental disabilities, or just the ailments of old age, "are in and of itself a sufficient basis to ask and to have a confirmation that your life is no longer as worth living as if you would not have these particular conditions."
How will we decide that the person is now in a state of unbearable suffering?- Trudo Lemmens
He said there are also questions about safeguards, and how to implement advance requests for MAID (where, for example, Alzheimer's patients request that the procedure will be administered later, when they may no longer have full mental capacity).
"How will we decide that the person is now in a state of unbearable suffering?" said Lemmens.
Downie said that the current review should focus on people who are eligible for MAID, but feel pressure to speed up the process for fear of losing eligibility.
The larger question of advance requests — for people with chronic conditions who are not yet eligible for MAID — can be addressed in a larger consultation planned for June, she suggested.
"There are real harms associated with not having access in those kinds of circumstances, and we can fix that."
Written by Padraig Moran. Produced by Ines Colabrese and Idella Sturino.