What is end-of-life care like in Canada?

The Supreme Court of Canada decision Friday to allow people with "grievous and irremediable medical conditions" to ask for doctor-assisted suicide should be just the start of a national conversation about end-of-life care in the country, doctors say.

"The Supreme Court has lit a fire under us," Dr. James Downar, Co-Chair of the Physicians Advisory Council for Dying with Dignity, said in an interview.

Doctors in palliative care have been pushing for years for more consultation with governments and families about end-of-life care.

The Canadian Medical Association, in reaction, to the Supreme Court decision released a statement that said it "will continue to work to promote access to high-quality palliative care" — an aspect of end-of-life care that many doctors feel goes hand-in-hand with assisted death.

Downar, for one, emphasized that the court's decision is about choice and not "promoting assisted death."

He also stressed that the majority of people who seek a physician-assisted death are already in palliative care, where the goal is to relieve symptoms and improve quality of life without necessarily providing a cure.

"In countries such as England or the Netherlands where assisted death is legal, palliative care is the best," he noted.

The Royal Society issued a report in 2011 on end-of-life decision-making, which concluded that "the better it is, the fewer requests you will have" for an assisted death, said Udo Schuklenk, who chaired the Royal Society panel.

'People say this is a slippery slope and that's hardly the case.'- Dr.James Downar, Dying with Dignity

"When Quebec passed its [Act Respecting End-of-Life Care], they also put more money into palliative care. It's a win-win situation," he added.

Downar also pointed out that in Belgium and the Netherlands, doctor-assisted death is a "tiny number" — about two to three per cent of total deaths. And in Oregon, another jurisdiction where the practice is legal, the number is 0.2 per cent.

"People say this is a slippery slope and that's hardly the case," he said. "The No. 1 reason for doctor-assisted suicide is usually the fear of the loss of control in how they die."

Vulnerable populations

The Supreme Court's ruling included statements concerning the "risk to vulnerable populations (such as the elderly and disabled)."

It also said: "There was no evidence from permissive jurisdictions that people with disabilities are at heightened risk of accessing physician-assisted dying [and] there was no evidence of inordinate impact on socially vulnerable populations."

In Belgium and the Netherlands, doctor-assisted suicide is a "tiny number" – about two to three per cent of total deaths. (Sebastien Bozon/AFP/Getty Images)

In addition, the ruling concluded that the advent of doctor-assisted death would not impede the development of palliative care in the country, saying that any changes to the doctor-patient relationship would be "neutral or for the good."

Downar said there will be a need for stringent new laws and safeguards to integrate doctor-assisted death into the Canadian rules surrounding end-of-life care.

Indeed, the president of the CMA is concerned about how doctors will assess the competency of a patient and what constitutes an "irremediable" condition.

"There are grey zones around medical competency," Dr. Chris Simpson told CBC News. "Maybe we should use two doctors or maybe a board" to [assess a patient's mental state].

'Prepared to hasten your death'

Nothing about the court's decision is comforting to Heidi Janz, who was born with cerebral palsy, uses a motorized wheelchair and gets her daily nutrition from a feeding tube.

'We won't do anything to help you LIVE, but now, we're prepared to hasten your death.'- Heidi Janz, Council of Canadians on Disabilities

"Many Canadians with disabilities do not have access to adequate home care, housing, education, employment, or medical care," Janz wrote in an email to CBC News.

"The Supreme Court, in its decision, has failed to provide any protection whatsoever to this vulnerable population. It amounts to saying, 'We won't do anything to help you LIVE, but now, we're prepared to hasten your death.'"

Janz, who sits on the Bioethics Committee of the Council of Canadians with Disabilities, said about 16 to 30 per cent of Canadians have access to palliative care. But in the disabled community, it's only five to 10 per cent.

"This decision removes rather than provides any incentive to improve access to palliative care for people with disabilities."

Heidi Janz, who sits on the Bioethics Committee of the Council of Canadians with Disabilities, said about 16 to 30 per cent of Canadians have access to palliative care. But in the disabled community, it's only five to 10 per cent. (Carsten Koall/Getty Images)

Downar and Janz do agree on one thing, however, which is that "independent of the decision, we need to improve palliative care across the country," said Downar.

Canada ranked in the top 10 in a 2010 study published by The Economist and surveying 40 countries and their "Quality of death" — which measured hospice and palliative care. But in two of the four key areas, Canada ranked much lower, particularly in cost of care, because a majority of people died in hospitals.

The report concluded that "Canada has engendered a culture where many people are afraid to raise the topic of death."

To die at home

Downar is especially eager to push that discussion, and to have Canadians make plans about their end days.

In addition to drafting up new rules for end-of-life care, he said it is also crucial to push people and their doctors to have the appropriate discussions soon enough — before an individual is incapacitated. At that juncture, "it's just too stressful for the family," he said.

"The majority of Canadians want to have comfort at the end of life. They want non-hospital care. They want to be at home," he said. "But our focus in health care is aggressive, acute care and that option to [be at home] doesn't happen for a lot of people."

According to Statistics Canada, approximately 70 per cent of Canadians will die in a hospital and of those who do, 10 to 15 per cent will be admitted to an ICU.

Downar has been active getting doctors, patients and family members to start their end-of-life care discussions ahead of time. He often points people to the Advanced Care Planning website, which contains a set of tools to guide people through the discussion about end-of-life care.

According to Statistics Canada, approximately 70 per cent of Canadians will die in a hospital. (Christopher Furlong/Getty Images)

In a Canadian study published in CMAJ in November 2014, Dr. John You and his team discovered doctors weren't having enough conversations about a patient's end-of-life preferences.

"We actually went straight to pretty sick patients in Canadian hospitals, as well as their family members, and we asked them directly what their preferences would be for the kind of treatment they might want if they were to become really sick to the point of being life threatening," You, an associate professor at McMaster University's Michael G. DeGroote School of Medicine, told CBC Radio.

"What they told us was they generally preferred a care plan that didn't include resuscitation and other heroic measures, and the majority wanted care that was focused on quality of life and comfort."

Let's talk about it

For Udo Schuklenk, the Ontario Research Chair in Bioethics and chair of the Royal Society of Canada's panel on end-of-life decision-making, the issues of palliative care and doctor-assisted suicide shouldn't be mixed.

'Palliative care, properly-done, shouldn't shorten a person's life.'- Udo Schuklenk, health bioethicist

"Palliative care, properly done, shouldn't shorten a person's life. It's about managing the symptoms, pain control," Schuklenk told CBC News.

"We should have more of it, and in some parts of the country, access to it is sketchy."

Quebec's Bill 52, passed in June 2014, incorporates medically assisted death into provincial health-care legislation. The new law allows people with a terminal illness that is causing unbearable suffering to ask a physician to administer a lethal dose of medication.

That law may now have to be revised in light of the Supreme Court ruling.

Schuklenk, who also lectures at Queen's University in Kingston, Ont., said in his time researching the topic, he's run into many doctors who have helped their patients die.

"You'd be surprised how many doctors openly have said they've helped a lot of patients die," he said.

"For doctors, and for all of us, it's fundamentally driven by empathy for the suffering patient and for respecting their end-of-life decision. It's a no brainer."