The cry for more palliative care continues to grow louder in Canada.
While protesting the introduction of legislation expected to expand access to assisted suicide next month, Canada’s bishops joined many advocates in decrying stalled plans to give Canadians the alternative of palliative care.
“As citizens, we see all levels of government, abetted by regulatory bodies and the media, give priority to those who want to choose euthanasia and assisted suicide while providing minimal funding and support for palliative care, home care and hospices,” said the bishops’ Jan. 31 letter to Prime Minister Justin Trudeau, signed by Canadian Conference of Catholic Bishops (CCCB) president Archbishop Richard Gagnon.
A guaranteed right to doctor-assisted death in Canada has still not been matched with a right to palliative care as the vast majority of Canadians continue to die among strangers in institutions, either without palliative care or with too little palliative care delivered too late in their disease trajectory, palliative care experts told Canadian Catholic News.
Of Canadians who died at home in 2016-17, even though two-thirds (66 per cent) received home care during their last year, less than one-in-six (15 per cent) received palliative care at home, according to a 2018 Canadian Institutes of Health Information (CIHI) report. Only six per cent of people in long-term care, and just 22 per cent of long-term care residents with less than six months to live, received palliative care.
Only 15 per cent of Canadians die at home, even though 75 per cent say they would prefer to spend their final hours with family at home. In contrast, over 40 per cent of Medical Aid in Dying procedures provide death at home.
“Before you can even start looking at the data for MAiD, you have to make palliative care a consistent and equal access for everybody,” said palliative care specialist Dr. Sheri Bergeron. “Because if you don’t, then are people making this choice because there isn’t any other choice?”
Canada’s Catholic bishops and other opponents of MAiD aren’t wrong to suggest greater access to palliative care might keep voluntary euthanasia down to a dull roar, according to Bergeron.
“Are people still going to choose MAiD, even if they have access to palliative care? Probably,” she said. “But the bigger shame would be people choosing MAiD because of lack of access.”
“Experience has shown that patients are more likely to request euthanasia/assisted suicide when their pain is not properly managed by palliative care,” said the CCCB letter.
“Health care practitioners, elected officials and policy makers must not have recourse to euthanasia/assisted suicide as an answer to pressures and deficiencies in the current health care system given that an alternative already exists, namely palliative care.”
Governments have been talking about alternatives to medicalized and institutionalized dying for at least 25 years, points out Sr. Nuala Kenny, a doctor, retired professor of medicine and bioethicist.
The first major report on the availability of palliative care, tabled in the Senate in 1995 by Senator Sharon Carstairs, was called Of Life and Death. In June 2000, Carstairs tried again with an even bigger, more detailed report called Quality End-of-Life Care: The Right of Every Canadian.
The courts, however, have not ruled Canadians have a right to palliative care.
“We know that MAiD is law. It’s now a right bestowed on all Canadians. I’m not sure the same can be said about the availability of palliative care as a viable option of care for all Canadians,” Pallium Canada CEO Jeff Moat told Canadian Catholic News. “Fundamentally, Canadians now have a legal right to die, but they also have a right to live.”
Pallium Canada provides palliative care training to a broad range of health care professionals and has been working with the CCCB to produce education kits aimed at helping parishes ensure Catholics understand what palliative care is and how they can access it. The kits will be available in 2021.
“These (government) promises (to boost palliative care) go way, way, way back,” said Kenny. “We then legalized and decriminalized (voluntary euthanasia) first, before we delivered on the promise of hospice palliative care.”
The country’s largest provider of home care is seeing small, gradual increases in funding and access to palliative care at home, said Nancy Lefebre, chief clinical executive and senior vice president of St. Elizabeth Health Care in Markham, Ont.
Ottawa’s Action Plan on Palliative Care is making some progress in making health care professionals and patients more aware of the scope and benefits of palliative care, she said.
“They’re overall trying to increase awareness and understanding. I think there’s a lot of work being done in that area,” she said.
In 2017 Parliament passed the Framework on Palliative Care in Canada Act, then spent 2018 negotiating with the provinces and territories who have responsibility for delivering health care. Funding agreements signed with provinces and territories in 2019 covered some aspects of palliative care.
In the 2017 budget the federal government committed to spend $6 billion over five years building up palliative care capacity across Canada. Health Minister Patty Hadju must report progress on the Framework on Palliative Care to Parliament in 2023.
“Some activities have already begun, while others are at the concept stage and will be developed further and rolled out over the coming years,” Health Canada spokesperson Natalie Mohamed told Canadian Catholic News in an e-mail.
Kenny sees very little happening to expand access to palliative care, despite the 2017 budget commitment and the 2019 Action Plan.
“I still get all the medical correspondence. I’ve never seen anything since this announcement, and I’m involved in the area,” she said.
Whatever procedural safeguards result from the recent two-week, online consultation on MAiD regulation, palliative care is still in the shadows, according to Kenny.
“Medically-assisted death has become normalized so rapidly,” she said.