Doctors say it's time for Canadians to talk about end-of-life care

CMA president Louis Hugo Francescutti says Canada needs to debate euthanasia and physician-assisted death

TORONTO — Canada needs to create a national palliative-care strategy that will give all Canadians facing the end of life the opportunity to have “the best death possible,” says the country’s largest doctors organization.

In a report released Tuesday in Ottawa, the Canadian Medical Association (CMA) also said the public, politicians and policy makers need to engage in a national dialogue about end-of-life issues, including discussions about such controversial topics as euthanasia and physician-assisted death.

The authors also strongly encourage individuals to talk to loved ones about their wishes regarding death, including a written advance care directive that clearly spells out how they want to spend their final days.

The report, entitled End-of-Life Care: A National Dialogue, follows a series of public meetings hosted by the CMA over the last year in five cities across the country, as well as online discussions.

“What the report says is Canadians want good access to palliative care,” said Dr. Louis Hugo Francescutti, president of the 78,000-member organization. “Patients are telling us they don’t want to die in pain. They don’t want to die alone. And they don’t want to be a burden to their families, their friends, their caregivers.”

“Palliative care is adding quality of life to the remaining days of an individual,” he told an Ottawa news conference. “And unfortunately, maybe 15 to 30 per cent of Canadians — depending on your postal code — will be afforded the opportunity to have good palliative care.”

What a person wants their end of life to look like needs be discussed with family — and family members need to be open to those conversations, said the report, which suggests that everyone should have advance care planning and/or directives in place.

But only about 10 to 15 per cent of Canadians have undertaken that kind of planning with their families, Francescutti said.

“Once Canadians understand that it’s important that they share their wishes as to end-of-life issues with their family members, then we need to make sure these are respected, no matter where the jurisdiction is,” he said, noting that in some cases the health-care institutions didn’t live up to the wishes expressed by the dying patient and their loved ones.

“Canadians should periodically revisit these issues as things change, and make it crystal clear that it’s not just old people that die; we can all at a moment’s notice with a diagnosis be put in a situation where end of life becomes an issue for our children or ourselves.”

Dr. James Downar, a palliative-care specialist at Toronto General Hospital, lauded the CMA’s call for a national strategy to provide specialized compassionate care for the dying.

“And we need to get behind that and give it some teeth and give it some funding,” he said, noting that about 95 per cent of the 240,000 Canadians who will die this year will have non-sudden deaths, often resulting from a chronic illness, and could be referred for palliative care.

Downar was also pleased to see attention given to advance care planning, and the report’s detailing of the challenges that can be involved.

“Everyone does support the idea of talking about death and dying and values, but it’s not always as straightforward as many people believe,” he said. “So highlighting some of those challenges makes it a bit more real for people reading the report. They may get a better idea about the kinds of questions they should be asking and the kinds of conversations they should be having.”

For instance, a person may say they want to be “kept comfortable at home” as their life comes to a close. But some pain relief cannot be provided in the home, so planning must include whether the patient is willing to go to hospital for advanced care, Downar explained. Or if home care becomes too much of a burden for the family, would the dying patient be amenable to going to hospital or a palliative-care placement?

“Even what may seem like a very clear instruction to most of us doesn’t necessarily translate into a plan that can be easily implemented,” he said.

The CMA report also discusses euthanasia and physician-assisted death, and Francescutti said there is still much divisiveness over the issue of helping someone to end their life, both among the public and doctors.

But even those who support the legalization of medically enabled death said they would want to see many restrictions, including protection for the elderly or those with severe physical or mental disabilities from being euthanized against their will.

Doctors also want to avoid such a slippery slope, he said. “We would absolutely as a profession make sure that vulnerable individuals and vulnerable populations are protected.”

Wendy Morris, CEO of Dying with Dignity, said she is pleased to see movement by the CMA over end-of-life issues, including their use of neutral language like doctor-assisted dying, instead of doctor-assisted suicide.

“Canadians want end-of-life choice,” she said. But in the past, the doctors group was “very oppositional to the idea of choice at the end of life … and now in this report, the CMA has moved beyond that to say if we have medically assisted dying, physician-assisted dying, then we need to ensure that we have strict safeguards and protocols.

“We’re really pleased about that and we would echo what the CMA is saying: nobody is looking for end-of-life choice without strict safeguards,” said Morris, whose organization advocates for expanded choice for people facing death.

While helping another person to die is illegal under Canada’s Criminal Code, the moral and ethical landscape around the act seems to be shifting.

With its passage last week, Quebec’s hotly debated, landmark right-to-die bill became the first legislation of its kind in Canada, setting up a potential legal challenge by the federal government.

The legislation, which aims to expand palliative care, also sets out protocols for doctors sedating suffering patients until they die naturally and offers guidelines to help patients who want to end their pain. It refers to medically assisted death with a doctor administering medication to a terminally ill patient if they meet a host of requirements, including filling out a consent form and gaining the written approval of two doctors.

At the federal level, the Supreme Court of Canada will review the existing law prohibiting medically assisted death in October. The hearing stems from a 2012 B.C. Supreme Court ruling that found the ban on assisted suicide was unconstitutional. Right-to-die advocates, aided by the British Columbia Civil Liberties Association, took the issue to Canada’s highest court after the B.C. Court of Appeal overturned the earlier provincial court ruling last year.

The legal challenge is known as the Carter case; one of the plaintiffs is Lee Carter, whose mother, Kathleen Carter, suffered from severely painful and debilitating spinal stenosis. She chose to end her life in Switzerland, where doctor-assisted death is legal.

Assisted suicide is permitted by law in some other European countries, among them Belgium and the Netherlands, as well as five U.S. states, including Washington and Oregon.

Francescutti said the medical profession will follow the lead of society, whether it’s through the courts or the government, “and be prepared if they’re put in a position that they have to be involved in physician-assisted suicide.”

However, he stressed, no doctor who opposes such an act as a right of conscience would be forced to participate in ending another’s life.

“As it currently stands, it’s illegal in Canada. Until that changes, physicians are of the viewpoint that it’s illegal and we’re going to follow the rules of law.”