“You can’t die here”: An exploration of the barriers to dying-in-place for structurally vulnerable populations
Bibliographic record
Abstract
Abstract Background: One measure of quality in palliative care involves ensuring people approaching the end of life are able to receive care, and ultimately die, in the places they choose. Canadian palliative care policy directives stem from this tenet of autonomy, acknowledging that most people prefer to die at home, where they feel safe and comfortable. Limited research, however, considers the lack of ‘choice’ people positioned as structurally vulnerable (e.g., experiencing extreme poverty, homelessness, substance-use/criminalization, etc.) have in regard to places of care and death, with the option of dying-in-place most often denied. Methods: Drawing from ethnographic and participatory action research data collected during two studies that took place from 2014 to 2019 in an urban centre in British Columbia, Canada, this analysis explores barriers preventing people who experience social and structural inequity the option to die-in-place. Participants include: (1) people positioned as structurally vulnerable on a palliative trajectory; (2) their informal support persons/family caregivers (e.g., street family); (3) community service providers (e.g., housing workers, medical professionals); and (4) key informants (e.g., managers, medical directors, executive directors). Data includes observational fieldnotes, focus group and interviews transcripts. Interpretive thematic analytic techniques were employed. Results: Participants on a palliative trajectory lacked access to stable, affordable, or permanent housing, yet expressed their desire to stay ‘in-place’ at the end-of-life. Analysis reveals three main barriers impeding their ‘choice’ to remain in-place at the end-of-life: (1) Misaligned perceptions of risk and safety; (2) Challenges managing pain in the context of substance use, stigma, and discrimination; and (3) Gaps between protocols, policies, and procedures for health teams. Conclusions: Common rhetoric regarding ‘choice’ in regard to preferred place of death fails to acknowledge how social and structural forces eliminates options for structurally vulnerable populations. Re-defining ‘home’ within palliative care, enhancing supports, education, and training for community care workers, integrating palliative approaches to care into the everyday work of non-health care providers, and acknowledging, valuing, and building upon existing relations of care, can help to overcome existing barriers to delivering palliative care in various settings, while increasing the opportunity for all to spend their end of life in the places that they prefer.
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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 | 0.013 | 0.016 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.023 | 0.015 |
| Scholarly communication | 0.007 | 0.007 |
| Open science | 0.004 | 0.013 |
| Research integrity | 0.002 | 0.005 |
| Insufficient payload (model declined to judge) | 0.004 | 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".