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Caring deeply for the dying

Meet the Halifax researcher working to change how Canadians think about assisted death

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Photo: Dalhousie University

Photo: Dalhousie University

It was a warm early spring evening, with crocuses and daffodils blooming and trees budding, when Jocelyn Downie faced a room of around 50 people at Dalhousie University’s Collaborative Health Education Building on University Avenue to talk about assisted death.

A professor in Dalhousie’s law and medical schools and an assisted death legislation researcher and policy advisor, Downie was the keynote speaker at the annual Olivieri Lecture on Medical Ethics. Her presentation (“Assisted death in Canada: Where have we been? Where are we now? Where are we going?”) was timely, as Parliament was considering Bill C-14.

The long-awaited bill stated that assisted death would be restricted to mentally competent adults who have serious and incurable illness, disease or disability. As it stands now, it limits access to mature minors, the mentally ill, and those “suffering intolerably” and grants it to those whose death from a “grievous and irremediable” medical condition is “reasonably foreseeable.” When the bill was tabled, Justice Minister Jody Wilson-Raybould said that government would further study the bill’s contentious proposals and amendments could come (in fact, Bill C-14 became law in June).

Downie began her lecture with the 1993 court case of assisted suicide advocate Sue Rodriguez, who had advanced ALS, through to Kay Carter’s court case last year. Carter v. Canada was a landmark Supreme Court of Canada decision where the prohibition of assisted suicide was challenged as violating the Canadian Charter of Rights and Freedoms by several parties, including the family of Carter, who had degenerative spinal stenosis (Downie was a member of Carter’s pro bono legal team).

“While there are things to praise in the government’s legislation, I have some serious concerns,” says Downie during an interview in her office at Dal.

First, the good news: The government committed to improving palliative and end-of-life care, allocating $3 billion over five years to home care (including palliative care). It also promised to develop a system to gather, analyze, and report the data on medical assistance in death. Downie’s criticism centres on the vague definition of a “grievous and irremediable medical condition” and a natural death that is “reasonably foreseeable.”

“Everyone’s death is reasonably foreseeable,” Downie argues, “because we know that we’re all going to die.”

At 54, Downie, who is from Kingston, Ont., has spent more than two decades studying end-of-life options for Canadians. In her third year at Queen’s University, where she earned an honours BA, she took a philosophy course on death and dying. Her interest in the topic was sparked even earlier, however, when she was a Candy Striper volunteer at Kingston General Hospital and saw an announcement for a new program: palliative care. Once she was old enough, she trained as a palliative care volunteer.

“I remember sitting with a palliative care patient who had advanced diabetes,” says Downie. “She was in heart failure, and one of her limbs had been amputated. She didn’t want to receive any further treatment, and her family supported her decision, but the cardiologist refused to stop treatment.”

Although Downie didn’t realize it at the time, it was the defining moment of what would become a constant theme in her life’s work. After earning a master’s degree in philosophy from Cambridge University in England, she began law school in 1990 at the University of Toronto. Her first published paper was titled “Voluntary Euthanasia in Canada,” written for an upper-year health law course.

In 1996, Downie joined Dalhousie’s faculty. “I wanted to come to Dal because of its extraordinary law and medical schools within which I could do this work,” she says. “I’m constantly challenged by other faculty members. There are so many people here to collaborate with who enrich my thinking.”

Halifax itself was also attractive. “It’s easier to make thing happen here because it’s easier for people to talk to each other,” she says. “You can make change and significant reform by having conversations across sectors.”

Over her career, Downie has been named a Fellow of both the Royal Society of Canada and the Canadian Academy of Health Sciences, as well as a Canada Research Chair in Health Law and Policy. She has also won many awards, including the Canadian Association of Law Teachers Award and the Abbyann D. Lynch Medal from the Royal Society for her 2004 book Dying Justice: A Case for Decriminalizing Euthanasia and Assisted Suicide in Canada.

In June 2015, Downie gathered a group of international end-of-life experts in Amsterdam to discuss how to best track incidences of assisted dying in Canada. “We need baseline data to understand what’s happening and how to track it,” she says. That October, she received a prestigious Pierre Elliot Trudeau Foundation Fellowship for $225,000 over three years to research better end-of-life care for Canadians.

Over the course of the fellowship, Downie will continue to bring together small teams of academics and practitioners from law, ethics and health care to wrestle with the complex and controversial issues and to propose changes to law, policy and practice. Her ultimate goal? To help Canadians care deeply and effectively for the dying.

“We’ve come a long way since Sue Rodriguez, but the government didn’t go as far as I would have liked with Bill C-14,” says Downie. “I can understand why it landed where it did on some issues, but we still have many miles to go. Canada can be a world leader in the responsible regulation of physician-assisted death, if we look at what everyone else is doing, learn from it and improve on it.”


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