A new project from the deVeber Institute for Bioethics and Social Research is shining a much-needed light on uplifting palliative care stories across the country.

Echoes: Palliative Care Stories of Canada launched its official website on Sept. 4, a domain that now serves as the home for palliative care achievements from coast to coast. The project brings together holistic, people-first stories along with local resources and regional statistics from provinces throughout Canada in the hopes of enriching the country’s palliative care network.

It's a far cry from the so-called "dignity in dying" that surrounds medical assistance in dying (MAiD), which is on the rise in Canada.

Advertisement

The website is the latest offering of the deVeber Institute, a small Canadian charity founded in 1982 that focuses on academic research to fill the gaps in medical and social issues surrounding pregnancy and end-of-life topics. It was through the research of some of the institute’s other projects that a glaring oversight was observed which would eventually bloom into what is now the Echoes project.

“Four years ago, we had two summer researchers who were looking into the accessibility of palliative care in Canada. We were able to determine that Canadians are now living longer than ever before,” said Zoe Stewart-Bedard, deVeber’s executive director. “As the population ages and medical advancements increasingly facilitate the long-term management of chronic health conditions, the need for high-quality palliative care will only increase from here.”

After speaking with individuals in the field, Stewart-Bedard and her team learned that, far too often, people feel alone, isolated and ill-prepared when faced with chronic illness at the end of life. The institute set out to create materials that could be used by affected individuals, their families, communities, parishes and other palliative care organizations to help them better understand and advocate for necessary support. 

Steward-Bedard said deVeber toyed around with different formatting ideas, such as brochures and informative booklets, before landing on the idea of an updatable website. As for the name, it too holds significant meaning to the team.

“A lot of the time, stories that you hear surrounding palliative care deal with people who needed it and have passed, you don't often hear from people who are still experiencing palliative care,” she said. “To us, the name Echoes has a sense of reverberating people’s stories and telling the country that their experience is not gone, that the echo of it continues to get bigger as it spreads — we thought the positivity going across the country could be really beautiful.”

By 2022, the idea for the website and branding had been established. Breanna Tauschek was hired as a researcher to collect stories from notable people in Canada’s health-care space while other team members examined academic and scientific statistics to accompany each story.

Launched earlier this month, Echoes features six chapters that champion Canada’s genuine palliative-care triumphs in Quebec, British Columbia, Alberta, Newfoundland and Labrador, Prince Edward Island and Nova Scotia respectively. The nation-spanning project was ultimately time-consuming, with two years devoted to the current iteration, but a project described by staff as a labour of love.

Advertisement

“I was on maternity leave for one of the years but I was not comfortable stepping away from the project,” Steward-Bedard admitted with laughter. “It was like our little baby, so I continued to work through maternity leave and it has been a joy to now see it publicly."

Each chapter consists of a directory of local resources such as hospices or other nearby organizations that can be contacted for additional support as well as a section on the statistics of palliative care, MAiD and health care in each particular region. These elements support the main narrative which showcases a doctor, paramedic, community or individual who is involved in palliative care and who has made a positive impact.

Some of the stories are quite personal, such as the case of Dr. Margaret Cottle in British Columbia, who shared her terminally ill friend’s mission to leave a legacy by educating his grandsons about their family's history before his death.

“It is a story about the power of family, the power of a natural death and about a man who took that to heart and spent his final weeks with his grandsons teaching them about the family and about what it meant to be a part of their family which changed the grandson's lives forever,” said Steward-Bedard.

In Nova Scotia, the team spoke with a paramedic who provides at-home palliative care to ensure patients stay comfortable in their own space.

Regardless of the province, the collection is meant to amplify messages of positivity, rather than the despairing news that has become so common in Canada.

“As a research organization focused largely on end-of-life, we hear constantly about the health-care systems being in crisis. There is a rising number of deaths that involve medical assistance and so we wanted the positives to shine for once. The goal was always to celebrate the good and the successes of compassionate care and ultimately to continue enriching the Canadian palliative care network,” said Stewart-Bedard.

As Echoes connects palliative care achievements under one roof, the next step is finding more stories to share. The executive director revealed that apart from plans to progress the website, an Ontario chapter is currently being completed as the team cements plans to dig deeper for narratives across smaller towns.

Advertisement

“We hope to keep the stories light, inspiring and ones that will stick with (the readers.) The more positive and impactful stories that we can collect and share, the brighter the whole project is going to be.”

The first six chapters of Echoes: Palliative Care Stories of Canada can be found at https://echoescanada.com/.