While assisted suicide grabs all the headlines, in reality, 99 per cent of Canadians will opt for good palliative care. The medical education organization Pallium Canada is trying to reclaim care for the dying from the medical and legal establishments. Pixabay photo

‘Compassionate Communities’ look to create wider dialogue about death

  • June 23, 2018

Death has lived in the shadows and been discussed in whispers for a very long time.

After all, death is not a pleasant topic, as inevitable as it is. But there’s a growing movement to bring it into the light and outside the narrow confines of a health care discussion.

The reality of assisted suicide in Canada is driving that discussion even further.

“One per cent of Canadians will ultimately want MAiD (Medical Aid in Dying), no different from Oregon or Washington or Belgium or Holland — one per cent of the dying population,” notes McMaster University professor of palliative medicine Dr. Denise Marshall. “Ninety-nine per cent of the population will want good palliative care.”

By Dec. 13, federal Minister of Health Ginette Petitpas has to deliver to Parliament a “Framework for Palliative Care in Canada” as mandated by Sarnia-Lambton MP Marilyn Gladu’s private member’s bill, which became law last December. Petitpas has launched a national consultation on what should or should not be part of Canada’s palliative care plans (letstalkhealth.ca/palliativecare) and Canadians have until the end of July to add their two cents.

Pallium Canada, a medical education organization, argues dying is existential, cultural and communal. As the sole national organization for palliative care education accredited by the College of Family Physicians and the Royal College of Physicians and Surgeons, Pallium is looking for help from churches to reclaim care for the dying from the medical and legal establishments. 

By creating what they call “Compassionate Communities,” Pallium seeks to ensure access to palliative care by giving the job back to the community. Everyone must be engaged in caring for those who are dying, frail, suffering, grieving and bereaved.

“Pallium’s goal is to mobilize it across the country — by creating tool kits, increasing awareness . . . to help the community to start to do this work,” said Pallium’s national lead for Compassionate Communities, Bonnie Tompkins.

The concept is based on the Compassionate Cities Charter, a 2005 declaration developed by U.K. palliative care professor Allan Kellehear. Kellehear’s charter is based on the 1986 Ottawa Charter for Health Promotion — the World Health Organization’s basic document to guide public health. Pallium has been promoting its version for Canada since 2015.

Rather than an exclusive focus on palliative care beds in hospitals and hospices, the Pallium program wants death de-mystified and talked about in classrooms, churches, workplaces and cultural life. Rather than concentrating solely on the dying person and their medical challenges, the Compassionate Communities program seeks to include immediate care givers and all those who will grieve. 

“For every one person who dies in Canada, five are affected,” said Tompkins. “If it’s horrific for them, that’s going to perpetuate itself into the future.”

From workplace personnel policies to death education in schools, the Pallium program is trying to death-proof a society that fears death, won’t talk about it and can’t handle it. The public health approach has had some success with 20 projects up and running in various Canadian communities. Compassionate Care Community initiatives include a west coast effort led by the B.C. Centre for Palliative Care, 16 projects in Ontario and efforts in each of the maritime provinces. City councils in Burlington and Niagara West in Ontario have declared themselves Compassionate Communities. But the movement has had no success signing up city and regional departments of public health.

“This is a health topic outside of our mandate,” Toronto Public Health told The Catholic Register in an e-mail.

“When I do engage with public health professionals, quite often their first comment to me is, ‘This isn’t our job. We’re about preventing and you can’t prevent death,’ ” said Tompkins.

That attitude from public health officials drives Marshall crazy.

“Talking about not preventing death, that’s silly,” she said. “It’s preventing a bad death — preventing terrible bereavement. You look at death, dying, loss and bereavement and what we want for one another is that this goes well.”

Marshall also advocates for a public health approach to death and dying. 

The danger, Marshall says, is that we may once again turn to the health care system — hospitals, doctors, nurses — to fix our problem with dying.

“We made it a healthcare deliverable. That’s sheer folly. Dying is mostly social. It always has been. Every race, every religion, every time on the planet, dying has always been a social event,” she said. “Somehow we shifted to a good death has become a managed death. We expect health care people to do it.”

If we want a good death, we’re going to have to do it. And by “we” Marshall means everybody.

“Every hairdresser, rotarian, taxi driver — every church, every synagogue, every school, every workplace has to have people prepared for this to go well for our species,” said Marshall. 

There’s also an institutional moat of trepidation surrounding the school system.

“It’s like sex ed,” said Tompkins. “Parents don’t want us to be talking about death in school.” 

In the 244 pages of the Ontario Health and Physical Education Curriculum for Grades 1 to 8, the word death comes up a dozen times. In 224 pages covering Grades 9 to 12 it comes up 15 times, but only in passing. The closest the schools come to talking about death and bereavement is classroom discussion about mental health and suicide risks. 

While the official curriculum skirts around the subject, the Canadian Virtual Hospice program has developed some material aimed at helping children deal with death at kidsgrief.ca. Under the umbrella of children’s mental health the Public Health Agency of Canada has promoted a set of British classroom activities called Zippy’s Friends (partnershipforchildren.org.uk/zippy-s-friends.html). But since provinces control curriculum, it’s a rare classroom that is going to use any of these materials.

“This is new. Social change takes time,” said Tompkins. “But there is definitely a lot of momentum. I can confidently say, I think we’re at our tipping point.”

Tompkins’ hope rests largely with faith communities, and the Catholics are leading the way. The Canadian Conference of Catholic Bishops has been working with Tompkins to develop a parish-based program that should be available before the end of this year.

“Every parish we’ve been into is waiting to get this start-up tool kit from us, because they see the role that they can play,” Tompkins said. “For me, the Catholic religion, right from the early stages, it teaches you about helping your neighbour, helping your fellow man. So this stuff makes sense.”

This is mostly a matter of the Church reclaiming its traditional and historic role in relation to death. The first hospices were not religiously neutral. The rituals and traditions of the sacrament of the sick, funerals and memorial Masses are not trivial addendums to Catholic life.

“The ancient hospice movement, the modern hospice movement, really all stems from faith communities,” said Marshall. “What we want, human beings from the beginning of recorded time, ultimately, is non-abandonment. We want to be accompanied on the sacred and ultimate one-time journey.”

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