Rethinking Palliative Care Through Three Institutional Ethnographic Stories of People Living With Homelessness and Life-Limiting Illness
Bibliographic record
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.012 | 0.019 |
| Meta-epidemiology (narrow) | 0.002 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.002 |
| Science and technology studies | 0.022 | 0.025 |
| Scholarly communication | 0.009 | 0.010 |
| Open science | 0.004 | 0.015 |
| Research integrity | 0.003 | 0.008 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".