Equitable Approaches to Palliative Pain Management

***NEW PUBLICATION HIGHLIGHT***

Pain management is a central aspect of palliative care, but there are inequities in care delivery. Equitable Approaches to Palliative Pain Management in a Structural Vulnerability Context: A Secondary Analysis of Community Based Participatory Action Studies looked at how palliative pain management is provided to people who use drugs, people who experience homelessness and people who experience poverty. Samara Mayer – a postdoctoral research fellow with the Palliative Approaches team – developed this project idea, collaborating with members of the Palliative Approaches to Care team to implement it. She enjoys doing collaborative community-based qualitative work that helps to advance equitable care delivery and that helps people feel heard and validated in the process.

The data for this study came from two participatory-action studies that were conducted with inner-city community workers, a mobile clinical palliative outreach team, caregivers, patients and decision makers. The findings highlighted how providers often worked with patients who had experienced chronic pain throughout their life and had developed approaches to managing their pain in the community. Palliative care providers focused on building trust with clients, addressing social determinants, and developing tailored approaches to pharmacological pain management that were responsive to clients’ previous negative experiences with health care and the social inequities they experienced. The findings emphasize how community-based palliative approaches to care can legitimize pain among populations who experience care inequities, and also highlight the importance of cross-sectoral collaboration, relational approaches to care and multi-dimensional approaches to pain management.

We spoke with Samara to learn more about the project.

What were some of the motivations that drove the undertaking of this project?

Before joining the Palliative Approaches team, I worked primarily in substance use research, where I conducted community-based projects with people who use drugs that were experiencing homelessness and poverty. These projects focused on their experiences and engagement with drug treatment programs and overdose prevention sites. Many of my research collaborators and the participants I spoke to have significant unmanaged chronic pain and complex co-morbidities like cancer, and chronic obstructive pulmonary disease, and I wanted to do work that could help inform ways to address these unmet pain needs.

Palliative care providers are experts in managing pain and I wanted to look at what approaches they used. I am committed to working with people who experience care inequities, so I specifically wanted to look how palliative pain management was delivered within a structural vulnerability context. The palliative approaches to care team have been working on improving access to palliative care for people who experience inequities for decades. Through deep relationship building and collaboration with health-system and community care providers, they’ve led a number of impactful projects focused on palliative care, and I knew they would be the best people to learn from and collaborate with on this project.

How did you go about conducting this work?

This is a secondary analysis of two studies that the Palliative Approaches to Care team lead. One study looked at how to integrate palliative approaches to care into the daily work of community service workers, and the other aimed to integrate equitable palliative approaches to care in community settings, including supporting an equity-oriented palliative care clinical service.

I didn’t collect this data directly, but I collaborated with some of the team members from these studies to do this analysis. They generously provided me access to a lot of really detailed and in-depth data including transcripts, meeting notes, and fieldnotes. I think that it’s crucial to recognize that this isn’t just data, these are people’s stories and personal reflections that should be treated with care and respect. So, it was really important that I work with the people who conducted these studies and participated in them to really understand the context and their priorities.

What is one thing that you’d like people to take from this research?

Many of the patients in this study had experienced a lifetime of chronic pain and had developed approaches in community to manage this pain. Palliative approaches to care can offer a way to legitimize and support people to manage their pain. This requires cross-sector collaboration to build trust with patients, working together to address and account for social inequities, and providing individualized approaches to pain medication.

This project emphasized to me that pain is very individual and it is multi-faceted. So often in health care research we prioritise the physical body and symptoms, but pain is not just about physical symptoms, it includes social, emotional and spiritual aspects. Building relationships with people is central in understanding the whole picture of people’s pain and I think it’s so important to recognize and support the work that goes into this.

Samara Mayer is a postdoctoral research fellow with the Palliative Approaches to Care team living in Vancouver on the lands of the Squamish, Musqueam and Tsleil-Waututh Nations. Her background is in public health and she has conducted community-based qualitative research with people who use drugs and people who experience homelessness and poverty since 2017. Her work is funded by the Michael Smith Health Research Trainee Program.