Better end-of-life care for people in poverty

Death may be the great equalizer, but access to good end-of-life care is rarely equitable. A new mobile palliative care program is addressing that imbalance by providing care and dignity to people in Victoria with life-limiting illnesses who are homeless and living in poverty.

The Palliative Outreach Resource Team (PORT)—launched Sept. 19—is built upon lessons learned from a three-year study led by UVic palliative care researcher Kelli Stajduhar, lead investigator of the Equity in Palliative Approaches to Care program with the Institute on Aging and Lifelong Health and the School of Nursing.

The study by Stajduhar and Ashley Mollison, project coordinator and PhD student, followed 25 people living homeless or barely housed while struggling with life-threatening medical conditions. Their 2018 report, Too little, too late: How we fail vulnerable Canadians as they die and what to do about it, found that homeless and barely housed people have to navigate many systems—health care, housing, social care—and that as their health declines, their ability to access these systems also declines. 

The big takeaway

Despite a terminal diagnosis of cancer, heart failure or lung disease, those who were able to access palliative care—an approach that focuses on whole-person care including emotional, social and spiritual needs—actually experienced an improvement in quality of life.

We used the research as a way to shed light on what we were seeing, and then used the report as a catalyst to figure out the best solutions for our community and how to make it happen. We knew that the population of people we're dealing with are not going to come to a palliative care clinic or be comfortable going to a hospital. 
- UVic palliative care researcher Kelli Stajduhar

They determined that the best model for this community was to get services to them where they're at, literally. And so, PORT was formed.

This mobile palliative care program is a collaboration of UVic, Island Health, Victoria Cool Aid and Victoria Hospice. And it is, according to Stajduhar, the best possible outcome: “As a researcher and as a nurse, the most we can hope for is that the work we do actually makes a difference in the lives of people. So, I’m over-the-top happy.”

Making the need visible

Mirroring similar models in Toronto and Calgary, people can self-refer or be referred by their caregivers to a palliative care nurse and a physician who manage the pain and symptoms related to life-limiting illness, support chosen family and caregivers, and provide grief and bereavement support. Chosen family and caregivers in this population include “street family” and shelter, housing, harm reduction, and peer and support workers from inner-city community organizations who are doing the bulk of end-of-life care for people living in poverty.

Dr. Fraser Black, assistant dean at UVic’s Island Medical Program, is a palliative care physician and PORT team member who works alongside nurse Katie Leahy. He emphasizes that one of the goals of PORT is to make visible the city’s need for palliative care. “There are people who are dying in places that we just don't see—in their cars, their tents, in shelters—and they're dying in pain and they're dying alone. And the need is great.” 

The new Palliative Outreach Resource Team (PORT) brings compassionate medical care and support to people living in poverty at end-of-life. Dr. Fraser Black,Island Medical Program’s associate dean of student affairs, is a team physician. Credit: Mike Morash/UVic

For its first year, the program will be funded by Saint Elizabeth Health and Island Health. The Vancouver Foundation is funding the UVic-led evaluation of the program, as well as the development of initiatives to increase access to and quality of palliative care in the inner city.

Stajduhar and Mollison are continuing research to help inner-city workers integrate palliative approaches into their work.

“When we begin our work with people, often they’re very angry at the system. They feel a sense of frustration, they feel hopeless,” Stajduhar told CBC in a recent interview. “The wonderful thing is, through our work together, people start to feel hope and meaning in the everyday work that they do. And when people feel good about the work that they're doing, they do a better job with the people that they care about and love.”