Inspired by Personal Experience

PhD student examines the organization of palliative care for people who are socially marginalized

In 2016, I moved to Calgary, Alberta to pursue my PhD studies. Before Calgary, I lived in Edmonton for most of my life, devoting much of my time to caring for my mother who struggled with mental illness and deteriorating physical health. I had opportunities over the years to relocate for various reasons, both personal and educational, but always chose to stay in Edmonton to support my mother. In 2016, I decided it was time to pursue my career aspirations while my younger sister took on the primary caregiver role. This role entailed the day-to-day tasks such as taking my mom to appointments, ensuring she had her medications, and connecting with Home Care. With reluctance, I packed up to move three hours south to Calgary. Within a few months of leaving, my sister phoned informing me that they had taken my mother to the emergency room. My partner and I got in the car and arrived as quickly as possible. Within two weeks of that emergency department visit, my mother was diagnosed with pancreatic cancer, and died in hospital.

While this may not be an atypical story, what struck my family and I during the experience was how my mother was treated by health care professionals based on her history with alcohol use and mental illness. Before her death, my mother communicated to me that she felt judged and misunderstood based on unwelcome and inaccurate comments made by her care providers. Additionally, she died in an acute care unit without access to health care providers who had experience with palliative approaches to care. This made her end-of-life process much more uncomfortable, adding unnecessary elements of emotional and physical distress for my mother and a difficult and complex grieving process for all of us there supporting her.

With housing and loving familial support, my mother was in a better position than many who are in this stage of life while experiencing social vulnerabilities. Witnessing her care experience opened my eyes to the inequities and gaps in the context of end-of-life care. Resultantly, I switched doctoral programs and my research focus to palliative care and social marginalization.

Today, I am a doctoral candidate in the Department of Sociology at the University of Calgary. My dissertation focuses on the social organization of the work of a small palliative outreach team in Calgary called the Community Allied Mobile Palliative Partnership (CAMPP).

The CAMPP team is a group of individuals who offer outreach palliative care to people experiencing houselessness or housing vulnerability. The program is mainly funded through grants and donations. Recognizing that the care provided by mainstream health systems was not meeting the needs of people in socially vulnerable positions, Dr. Simon Colgan, a palliative physician in Calgary, created the program in 2016; driven to make palliative care’s delivery more equitable.

I first heard about the CAMPP team through a professor. She introduced me to Dr. Colgan, who invited me to ride-along with the team to better understand their work. From there, I knew it was a perfect program to base my PhD research on.

My doctoral project aims to describe and examine the work the CAMPP team does and how it is organized and situated within the larger health and social system. Starting my data collection in 2019, I took an institutional ethnographic approach, a method of inquiry developed by the late Dorothy Smith. This approach allows the researcher to position themselves in ways to discover the social relations that shape people’s everyday lives. I observed the CAMPP team by riding along with them, attending their meetings, and reviewing their internal documents and program literature, finishing in 2020 and totaling approximately 100 hours. I also conducted formal and informal interviews with the team, their clients, and their colleagues. I am currently in the analysis and writing stage of my research.

My findings provide a look into the experiences of CAMPP clients and their interactions with the health care system, a description of the CAMPP team’s typical work day and how they organize their tasks and activities, the models (“harm-reduction and “trauma informed”) they use to position themselves uniquely amidst the larger palliative care delivery system, and the challenges they face being a small non-profit program mainly funded by grants and donations. My hope is that by sharing this work, I can offer a deeper understanding of the lives of people experiencing social marginality who also have life-limiting illnesses. This research also provides an opportunity to delve into the complex social organization of the work that goes into serving these populations by structuring the program differently from typical palliative care programs.

Moving forward, it is my hope that this project can honour my mother while adding to a future of palliative care delivery that is improved and more equitable.