Death Is a Social Justice Issue
Our first featured article from the latest ANS issue is titled “Death Is a Social Justice Issue: Perspectives on Equity-Informed Palliative Care” by Sheryl Reimer-Kirkham, PhD, RN; Kelli Stajduhar, PhD, RN; Bernie Pauly, PhD, RN; Melissa Giesbrecht, PhD; Ashley Mollison, MA; Ryan McNeil, PhD; and Bruce Wallace, PhD. While this article is featured it is available for download at no cost! Please read it, then return here to join a discussion around these important ideas! Here is a message from Dr. Reimer-Kirham about their work:
In this paper, we lay the theoretical groundwork and make the case for equity-informed palliative care. We draw on the Equitable Access to Care (EAC) study to explore the end-of-life experiences of people who are ‘doubly
vulnerable’ – those who are dying and experiencing hardships due to social determinants of health such as poverty, homelessness, racialization and criminalization. Our research emerged out of the distress of health and social service workers who witnessed their clients dying prematurely because they were diagnosed with life-limiting conditions too late, when treatment options were either not available or less effective.
The EAC study seeks to understand barriers to quality end-of-life care and to create recommendations for policies and practices to improve equitable access and enhanced quality of care. To conduct our research, we observe and interview people experiencing structural vulnerability at the end-of-life, their ‘chosen’ family and service providers, and key decision makers from various service backgrounds. Our study also looks at promising models and practices of end-of-life (EOL) care for homeless people that can be applied in the local context.
Our team is a community-academic partnership which includes the University of Victoria (Institute on Aging &
Lifelong Health, School of Nursing, and Centre for Addictions Research of BC), Trinity Western University (School of Nursing), BC Centre for Excellence in HIV/AIDS, Palliative Education and Care for the Homeless (PEACH), and the Palliative Outreach Resource Team (PORT). PEACH is a palliative consult/support service for homeless people in Toronto, ON. PORT is a group of service providers who work to improve quality and access to palliative and bereavement services for dying homeless people in Victoria, BC. Our study began in 2014 and we plan to release results by fall 2017.
As a community-academic partnership, it is important to us that we collaborate with our networks to foster
dialogue, raise awareness, and create practical recommendations to bring about social change. Highlighted in this paper, last year we brought together specialized palliative care services with community health and social service workers to host A PORT in the Storm: A day of education and discussion about equitable access in palliative care. Outcomes from this event included networking, awareness, and greater understanding of services available, and the organizational barriers to providing quality care at EOL.
In this paper, we explore how a social justice lens in palliative care can illuminate how social and structural inequities profoundly shape health, illness, and dying experiences for people who are made particularly vulnerable by a constellation of socio-political, economic, cultural and historical forces. By offering three exemplars – Leslie, George, and Cliff – we illustrate why an equity-informed approach to palliative care is desperately needed for a nuanced understanding regarding who current palliative care programs are failing.
Recently, our study team wrote an op-ed called Homeless Deserve End-of-Life Care but aren’t getting it to direct attention to the story of a homeless, Indigenous man in our community who was discharged from hospital after surgery with no place to go. Our study and the experience of homeless people at EOL garnered international attention when the Canadian Broadcasting Corporation (CBC) picked up this story. Dr. Kelli Stajduhar recently spoke to The Walrus Talks Quality of Life audience about the value of palliative care and its lack of availability in Canada. (see also Acknowledgements noted on manuscript).
Our hope is that our article and this blog increases awareness about the need for equity-informed approaches to palliative care, including prompting discussion around the following questions: What are the experiences of health and social service workers in providing EOL care (both ‘informal’ and specialized) to people experiencing structural vulnerability? What policies and practices have supported quality end-of-life care for this population?