'Preparing for the journey': Indigenous palliative care strategy helps people die at home

Helping people in First Nations in Ontario develop a palliative care strategy for their community is an issue Holly Prince, who is a project manager at Lakehead University's Centre for Research and Education on Aging and Health (CERAH) in Thunder Bay, has been working on for years.

Her efforts lead her to be named the Innovator of the Year, in 2018, by the International Congress on Palliative Care

"The services are very limited in First Nations communities," said the Anishinabek woman from the Red Rock Indian Band in northwestern Ontario, explaining the federal government funds a home and community care program, which offers some services such as nursing and respite care on weekdays from 9 a.m. to 5 p.m.

Residential school survivors forced to leave home to die

But, she said, it hasn't really evolved to meet the needs of the current population, which is older and suffering from higher rates of chronic and terminal diseases.

Like most Canadians, Indigenous people nearing the end of their lives would prefer to die surrounded by family and friends, but that option often isn't available, said Prince.

"Our elders are the same people that have had to leave community when they were younger to attend the residential school system, so now when they're at the most vulnerable part of their lives, when they're older, they're now being forced to leave community to receive care in hospitals or urban centres away from their community, away from their culture and away from their language once again and I think on behalf of First Nations communities there's a lot of guilt because they want to provide that care, especially to their elders."

Takes a village to raise children, support those near death 

She noted that "if it takes a village to raise a child, it takes that same village to support people at end-of-life. That's what First Nations do very well, that's the concept of kinship that is really strong in First Nations."

What is lacking in First Nations communities is often the education around the more medical side of palliative care, such as pain and symptom management, the changes to expect in someone's final days and hours, and information around dealing with grief and bereavement, both from expected and unexpected deaths.

"We do recognize that there is a lot of unexpected death, like suicide and trauma, in First Nations communities, that impact people's ability to care for people at end-of-life through expected death situations."

'Preparing for the journey', completing circle of life

The desire to help communities learn how to provide all aspects of that care prompted Prince and the rest of the team at CERAH to create Developing Palliative Care for First Nations Communities: A Workbook, which is an 85-page PDF document accompanied by 83 educational, administrative and program development tools and resources available in a variety of formats.

The workbook is considered a living document, and people are encouraged to make adaptations as they use the content, and to customize it with their own logos, photos and information.

One of those resource manuals is entitled Preparing for the Journey, an acknowledgement of the general Indigenous cultural view of birth, life and death.

"It is about that process of completing the circle of life. Death is not necessarily viewed as the end, so it's all about that journey, what that journey looks like for that individual and their family as well."

Prestigious international award

By the end of 2018, Prince had delivered over 25 workshops about creating a palliative care strategy to more than 500 people representing more than 70 communities in Ontario.

Prince received the international award after peer reviewers from the United Kingdom, Australia, the United States and Canada selected six finalists from 51 nominees from 16 countries, who then provided a one-hour presentation on their project.

You can hear the full interview with Holly Prince on CBC's Up North here.