Even though three-quarters of Canadians say they want to die at home, most of us don’t, according to the report released last month. Only 15 per cent of those who died in 2016-17 received publicly-funded palliative care at home.
Most patients (62 per cent) who had any form of palliative care only received it in an acute care hospital and mostly during the last month of their lives. When hospitals identify patients as palliative, nearly half of those patients (47 per cent) die before they can be discharged to a more appropriate setting.
Rather than trusted family doctors or community nurses, huge numbers of Canadians access palliative care via the emergency room. The CIHI report says 88 per cent of those who died in hospital had no record of palliative needs before they were first admitted to hospital, despite the fact patients tend to have many interactions with the health care system in their last year of life.
The 2015 Economist Intelligence Unit’s Quality of Death Index ranked Canada’s health system 11th in the world in terms of providing a good death. The United Kingdom and Australia are tops.
When Canadians do get palliative care at home they are 2.5 times more likely to die in their own beds under their own roof.
CIHI estimates 89 per cent of all Canadians could benefit from palliative care during their last year of life.
While the statistical picture in the report is more detailed and more extensively documented than anything that has ever been produced in Canada, there are still big gaps in the data. While we know that just 15 per cent of people who died in 2016-17 received publicly-funded palliative home care in Ontario and Alberta, there isn’t enough information gathered to know about the rest of the country.
“Home care and palliative care are both not covered under the Canada Health Act and it results in a huge patchwork of programs across the country that are not consistent, well-funded or well-known,” said St. Elizabeth Health Care chief clinical executive and senior vice president Nancy Lefebre. “We’re certainly not where we need to be honouring people’s wishes to be dying at their place of choice and with dignity.”
The CIHI report paints a picture of a health care system unready for death, starting with medical schools. While 90 per cent of medical schools lecture students about palliative care, only 12 per cent of medical students were required to participate in mandatory clinical rotations in palliative care. Few medical residents get hands-on palliative care training — including just 18 per cent of residents in acute care hospitals, 18 per cent in cancer care centres and a mere 11 per cent of residents in community or outpatient environments. The report also notes, “There are few faculty positions in Canadian universities to address undergraduate and postgraduate needs for education in palliative care.”
But the problem extends beyond the professionals, said Providence Healthcare chief nursing executive Maggie Bruneau.
“One of the biggest things is that people don’t want to talk about dying. They’ll talk about pregnancy and birth, but they won’t talk about dying,” Bruneau said. “To try to get somebody onto a palliative trajectory — even if it exists, and clearly the report shows that there’s lots of gaps there — is difficult just from the perspective of people not wanting to recognize that they are palliative.”
“There is a cultural change that needs to take place and there is a reluctance,” said Carleen Brenneis, director of Covenant Health’s Palliative Institute in Edmonton. “We are a death-denying society. These are difficult discussions.”
If people think of palliative care as a fancy medical word for giving up, then it’s no shock that patients refuse palliative care or refuse to discuss palliative care until the very end. But the science shows the earlier palliative care starts the longer patients live, said Palliative Institute scientific director Konrad Fassbender.
The report itself is big news for palliative care professionals who have waited years for thorough, credible information about death and dying in Canada.
“This is one of the main events of the year” said Fassbender.
At St. Elizabeth, where 9,000 employees support 20,000 home visits a day — 30 to 40 per cent of them focused on people who are dying at home — the CIHI report is going to fuel efforts to talk to politicians and policy-makers, said Lefebre. The palliative care discussion will get more intense when Health Minister Ginette Pettipas-Taylor’s framework for palliative care is tabled in Parliament in December.
“We need to continue to advocate for good access to palliative care,” said Lefebre. “We need to be part of the movement that mainstreams conversations about engaging people in what’s a good death. What does that look like? We need to raise public awareness of what’s actually available and what they have a right to access.”
Meantime, 40 per cent of those who choose so-called medical assistance in dying (MAiD) end their lives at home, under circumstances they control. A clear and accessible choice of palliative care would lead to a completely different conversation, said Brenneis.
“People need to have good care before they make these kinds of decisions,” said Brenneis. “I really appreciate the work that Catholics are doing related to ensuring that palliative care is there for people to make their choices.”