Rethinking Palliative Care Through Three Institutional Ethnographic Stories of People Living With Homelessness and Life-Limiting Illness. Journal Abstract - Guideline Central

Rethinking Palliative Care Through Three Institutional Ethnographic Stories of People Living With Homelessness and Life-Limiting Illness.

Published: 2025

Authors

,

Abstract

Fifteen to thirty percent of Canadians have access to palliative care, with even fewer access opportunities for people with experiences of homelessness. Existing research identifies barriers to access but rarely shows how health and social institutions actively organize exclusion. Part of a larger study, this paper examines how health and social systems shape the need for community-based palliative and end-of-life care, using 3 stories from clients of the Community Allied Mobile Palliative Partnership (CAMPP). Using institutional ethnography, data were collected between Fall 2019 and Summer 2020. Sources included approximately 100 h of observation of the CAMPP team's work, 3 in-depth client interviews, and supplementary provider interviews. Data were analyzed to trace institutional processes that shape everyday experiences of illness and care. Findings reveal systemic demands like renewing insurance for medical equipment, restrictive housing rules, and standardized hospital protocols that overwhelm capacities of many people with experiences of homelessness. Rowan's story illustrates how bureaucratic requirements jeopardized his oxygen supply. Harriet's story shows the harm of being separated from her caregiver in housing and hospital contexts compounding distress and reluctance to receive care. Chapa's story demonstrates how fear and stigma delayed critical cardiology care. Overall, the clients valued CAMPP's persistent, relational, non-judgmental, and flexible approach. The team's independence from the mainstream health system mandates enabled responsive care but relies on precarious funding, constraining sustainability. Community-based palliative teams like CAMPP fill critical gaps in mainstream services by tailoring care to complex social realities. Their model shows the value of equity-informed, relational approaches, yet structural exclusion and precarious funding threaten long-term viability. Policy integration must sustain such programs without eroding the autonomy that enables them to deliver meaningful palliative and end-of-life care for people with experiences of homelessness.

Keywords: end-of-life care, homelessness, institutional ethnography, palliative care, qualitative research

Source

Inquiry : a journal of medical care organization, provision and financing

Publication Type

Journal Article

Language

English

PubMed ID

41174989

MeSH terms

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