By the ePAC Action Team
“It’s as much about death as it is about life,” is a statement heard frequently around the Action Team table. Consisting of inner city workers, researchers, and palliative care practitioners, our group has been working together for over five years to improve access to quality care for people facing serious illness and life-limiting conditions of homelessness, poverty, racism, criminalization, and stigma in Victoria, BC (Lekwungen and W̱SÁNEĆ territories).
And now, our group is launching a Resource Guide called, Palliative Care Is… A collective response to death, dying, and grief in the inner city, rooted in workers’ knowledge and experiences, and containing insights developed from research, actions, and our ongoing collaborations.
The 7 chapter, 90-page Guide adapts a palliative approach to care for the settings where people are living and dying in contexts of inequity. Its target audience are workers – in housing, shelters, drop-ins, and on the streets – who are providing care, and filling gaps in health and palliative care services. Rather than being prescriptive of what workers should do, the Guide recognizes the work that is already happening in these settings to meet the care needs of people who are ignored, dismissed, and unable to reach mainstream health services.
Research shows that despite the fact that death and dying are all around in inner city settings, sickness and death are rarely planned for. This makes sense given the more pressing demands of inner city life and work like shelter, food, displacement, and acute medical issues. The reality is that many deaths are unexpected, unjust, and tragic. Death can be distressing, regardless, but the lack of conversation and preparation around it can add stress and complications. Friends and workers are often left out of decision making and communication compounding distress and grief. A palliative approach to care responds to this reality.
A palliative approach to care is about prioritizing the person, their needs, and their definition of quality of life. It is about relational autonomy and self-determination in care. This becomes even more important in contexts of inequity where people’s ability to access good care, make their own decisions, and be listened to are constantly threatened. Poverty, colonization, racism, criminalization, and other inequities drive early deaths, but they also mean greater suffering in life as people are unable to get the care they need, in the way they need it.
A palliative approach to care can’t bring people back, but can alleviate the pain surrounding death and dying that’s caused by not knowing what a person wants, not being able to meet their wishes, and witnessing pain and suffering. We have seen, first hand, how a palliative approach to care can be used as a tool for advocacy to get people what they need, and beyond that, respect and value people’s humanity.
Our Guide is not about asking workers to do more. Rather, it offers insights for how a palliative approach to care might benefit people and their circle of support. It recognizes the valuable knowledge and relationships that workers hold, essential for facilitating access to care, pain and symptom management, and other needs as people get sicker and need more support in community. It acknowledges grief as a normal response to loss rather than a symptom of poor self-care, burnout, or compassion fatigue.
As the Guide sees the value of workers in their roles and relationships, it pushes back against barriers to care in healthcare and housing that compounds distress for friends, family, and workers. It suggests that enabling people to stay in and surrounded by their community as they get sicker (if this is their wish) takes organizations that see and value the care work that many are doing “under the radar.” It advocates for strengths-based, creative workarounds and supportive policy to truly meet people where they’re at. It asks critical questions about how people’s own support networks (friends, family) can be enabled and allowed to care in the way they know how.
But beyond publishing a Resource Guide, Action Team members will tell you that the value is in the process. In the last 5-years, we made meaning together and found support and connection in the process of creating material and social change. We cried a lot, laughed a lot, and showed up for one another. Our hope is that the ideas in this Guide can be used to prompt action, break barriers, and change systems that cause unjust and preventable deaths.
We titled the afterward, “The End is the Beginning” and going forward, as we work to create ways to make this Guide as useful and impactful as possible, we want to hear from you! Please visit our website, twitter, and Instagram. Let us know what resonated, what didn’t, and your stories for how to further mobilize this work in benefit to your people and communities.
We are deeply thankful to everyone who participated in this process and allowed it to unfold (see pg. 3, 6 & 7 for acknowledgements). This Guide is dedicated to Paige Phillips, a fierce leader, advocate, and mother whose contributions to our collective work cannot be understated. Paige joined our inner city action team in 2017 mobilizing experiential knowledge to relieve suffering and improve care for her friends, family, and community. She will forever be remembered for her fighting spirit and deep love inspiring hope in all of us. So many more people will get the care they need and deserve because Paige lived.
The Palliative Care Is…. Resource Guide would not be possible without research funding led by Dr. Kelli Stajduhar from the Vancouver Foundation, Canadian Institutes of Health Research (CIHR), Canadian Cancer Society Research Institute (CCSRI), and Michael Smith Health Research BC, and organizational support from the University of Victoria, Island Health, Victoria Cool Aid Society, Victoria Hospice, AVI Health & Community Services, and several other organizations who enabled their staff to attend meetings and be part of this process. Dr. Stajduhar is supported by the CRC Canada Research Chairs Program.
To cite this guide: Equity in Palliative Approaches to Care. (2023). Palliative Care Is... A Collective Response To Death, Dying, and Grief In The Inner City. University of Victoria. doi:10.6084/m9.figshare.22043420