Nurse Ophelia Brown, palliative patient Barbara Rule and Dr. Richard Brodie at Toronto’s Providence Healthcare. Photo by Michael Swan.

Canadians want better palliative care

By 
  • June 20, 2014

Pressure is building on the federal government to get busy on a national palliative care strategy.

The Canadian Medical Association issued a call for federal leadership on care for the dying June 10. NDP MP Charlie Angus’s Motion- 456 calling for a “Pan-Canadian Palliative and End-of-life Care Strategy” passed with the overwhelming support of all parties in the House of Commons June 5. Since 2012 the Quality End-of-Life Care Coalition, which includes the Catholic Health Alliance of Canada, has been mapping out “The Way Forward,” a set of practical policy initiatives that would lead to national standards in palliative care.

The idea that health care is a provincial responsibility and the federal government should not interfere just won’t cut it any more, said Canadian Medical Association president Dr. Louis Francescutti.

“Right now palliative care is based on your postal code,” Francescutti told The Catholic Register. “What she (Federal Health Minister Rona Ambrose) has to do is listen to Canadians. They want to have better access to palliative care across the country, which quite frankly doesn’t exist right now.”

The CMA travelled across Canada holding town-hall style meetings in May to discuss the end-of-life options Canadians have and what they want. At the end of the process the CMA produced “End-of-Life Care: A National Dialogue.”

Catholic health care institutions across the country are just as adamant that it’s time for action on a national level.

“What we support is the creation of expectations and standards for all Canadians to achieve,” said Michael Shea, Catholic Health Alliance of Canada president and CEO. “It raises the bar across the country in terms of programs in real specific areas, in particular palliative care which is a bit of a patchwork across the country.”

Organizations are looking to the federal government to establish national standards to ensure palliative care services that are consistent in terms of their quality, financing and accessibility. Rather than a patchwork of regional programs for palliative care, there would be a national framework. The key components of this framework could include: ensuring all patients are able to receive palliative care at either a home or hospice setting, establishment of best-practice standards for palliative-care providers, integration of palliative care learning more fully into medical school curriculum, raising public awareness regarding end-of-life health care, and guaranteeing consistent funding for research and policy development.

The pressure to do something nationally also is coming from Quebec, which has just passed a law redefining physician-assisted suicide as a form of palliative care. The option of assisted suicide is the beginning of a slippery slope, said Dr. Richard Brodie, Providence Healthcare palliative specialist.

“There’s always better options,” he said.

When patients believe they’ve become a burden on their families and caregivers, the pressure to exit quickly could short circuit the idea of palliative care at the individual level and the imperative to fund palliative care on the national level.

“This is me being a staunch Canadian, but that’s not how we behave,” said Ann Syme, director of the Covenant Health Palliative Institute. “I don’t think we’re positioned to say, ‘Here’s an easy way out; let’s incentivise this so we don’t have to invest in that.’ ”

Edmonton-based Covenant Health has evolved out of hospitals founded by the Grey Nuns (Sisters of Charity). Looking at the 21st century health-care landscape the sisters have decided today’s needs lie in palliative care, care of the elderly, mental health and addictions and extending health care to rural and remote areas.

“We have received from the sisters this legacy of going out, being bold, taking on these populations that people have ignored or not had the capacity and compassion to care for,” said Syme. “We’re doing it in our day, in a more modern way, to make sure we’re seeing those people with the eyes that Jesus would have — to say, ‘This is someone who is worthy in my soul to look after.’ ”

While Syme has a mandate to spread the gospel of palliative care across Alberta, she’s hamstrung by the plain fact that palliative care funding is optional for provincial ministries of health and local funding agencies.

“We do need a national strategy,” she said.

Canadian palliative care physicians and nurses issued their own standards of care as a professional code of conduct in 2002, but those standards don’t bind the funders.

“This is definitely a clarion call to all of us in the palliative care field in Canada to sort of stand up and say, ‘When is the time we will see the basket of funding for health care to actually earmark funding for palliative care in different jurisdictions,’ ” said Syme. “We want to see definitively earmarked funding.”

The idea that a national palliative care strategy should include euthanasia or physician-assisted suicide as just one more option for those who want it is not going to fly with palliative care doctors, said Francescutti.

“I can speak on behalf of the palliative care community, and they in no way want to be associated with euthanasia or physicianassisted suicide,” he said. “Those are two separate conversations. You cannot use palliative care in the same breath as euthanasia, because that’s not what palliative care is.”

The idea that medical aid in dying can be contained within clear boundaries to a very limited number of cases is not borne out by the experience in jurisdictions where it’s been tried from Holland to Oregon.

“Other countries that have done this have seen the slippery slope develop and people with depression who don’t want to live any more are asking to be euthanized,” Francescutti said. “Is that what as a society we’re moving towards?”

But saying no to euthanasia doesn’t mean saying yes to the status quo.

“Baby boomers are not going to accept the death that they’re seeing their parents go through. I think baby boomers, being baby boomers, will vote governments out if they’re not interested in talking about this,” said Francescutti.

Veterinary students, on average, receive 80 hours of training in pain management. Medical students at 10 of Canada’s 17 medical schools get by with less than 10 hours. If Fluffy is getting better palliative care than grandma it’s time for a change, according to Francescutti.

Shea at the Catholic Health Alliance worries that many people are confused when the twin subjects of palliative care and euthanasia come up.

“A lot of people really don’t understand the terminology involved, the difference between terminating futile treatment versus assisted suicide or euthanasia,” he said. “There’s lots of evidence out there that effective palliative care can provide a good death and a good dying process… We need to understand the terminology and we need to have clarity around what we’re talking about.”

The Catholic Health Alliance hopes to aid the dialogue by developing educational materials that will make it clear Catholic teaching doesn’t advocate meaningless and prolonged suffering.

Everybody dies and almost everybody eventually has to stand at the bedside of parents, siblings and friends as they die. It’s not a marginal, special interest sort of issue, said Syme.

“Palliative care just makes sense. It’s cheaper for the health care system to focus on palliative care than it is to sort of mistreat these patients and let them struggle through a system not prepared to meet their needs,” said Francescutti. “What we could do is attach some transfer dollars to palliative care. We could do more research in palliative care. We can establish scholarships in palliative care. We could match dollars — for example, every dollar that an individual donates to a palliative care residence the federal government matches it so you can double your money.”

If the federal government doesn’t know what to do, Francescutti has plenty more ideas.

As long as the federal government is funding the Canadian Partnership Against Cancer — effectively a national strategy — Syme is not buying the line that palliative health care is a solely provincial responsibility. Between 2013 and 2017 Health Canada will pour $241 million into the cancer partnership. Cancer has a powerful, vocal constituency of survivors to advocate for more research and better access to treatment, a political advantage palliative care will never be able to match, said Syme. But there ought to be a way of rearranging our priorities to acknowledge an issue that every single Canadian will meet one day.

“We are a nation,” she said. “We can be quite reflective about this and say, ‘Is this what I want for the people I love?’ If we can look at providing choice and respect and dignity and impeccable symptom management and what I call kind and attentive care, who wouldn’t want that?”

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