“None of It Turned Out the Way She Wanted, So It Left a Hole in Me”: Informal Caregiving at the End of Life in Contexts of Inequity

Palliative care is undergoing shifts to identify and respond to social and structural inequities. Caregiving in a palliative context is steeped in assumptions that those who provide care are biologically or legally (biolegal) related, well-resourced, and able to balance the many demands of work and life with caregiving. As families in the Western world change, people are increasingly looking outside their biolegal families for care. This is common among people experiencing homelessness, but little is known about how this translates at the end of life. To address this knowledge gap, we undertook an ethnographic study informed by critical perspectives, integrating social justice and health equity approaches. Over a period of 27 months, approximately 300 h of observation and 44 interviews were conducted with service providers, clients, and caregivers in three Canadian cities. We found that caregiving in contexts of inequity challenges dominant understandings of palliative caregiving. Rather than a biolegal family, people with life-limiting conditions were found to be accessing care from a constellation of formal and informal caregivers (e.g., friends, neighbors, and spouses). For this analysis, we focus on exploring the experiences of unrelated, informal caregivers, with thematic findings illustrating three main aspects: (1) Relationships and roles in informal caregiving, (2) identifying and perceiving informal caregivers, and (3) biolegal privileging and exclusion of unrelated caregivers. For palliative care to improve the quality of life of people who face inequities and their caregivers, there is a need to better identify, engage, and support all of those who participate in care at the end of life regardless of whether they are biologically or legally related.