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"You can't die here": an exploration of the barriers to dying-in-place for structurally vulnerable populations in an urban centre in British Columbia, Canada.
Stajduhar, Kelli I; Giesbrecht, Melissa; Mollison, Ashley; Whitlock, Kara; Burek, Piotr; Black, Fraser; Gerke, Jill; Dosani, Naheed; Colgan, Simon.
Afiliación
  • Stajduhar KI; Institute on Aging and Lifelong Health, University of Victoria, 3800 Finnerty Road, Victoria, BC, V8P 5C2, Canada.
  • Giesbrecht M; Institute on Aging and Lifelong Health, University of Victoria, 3800 Finnerty Road, Victoria, BC, V8P 5C2, Canada. giesbrec@uvic.ca.
  • Mollison A; Institute on Aging and Lifelong Health, University of Victoria, 3800 Finnerty Road, Victoria, BC, V8P 5C2, Canada.
  • Whitlock K; Institute on Aging and Lifelong Health, University of Victoria, 3800 Finnerty Road, Victoria, BC, V8P 5C2, Canada.
  • Burek P; Canadian Institute for Substance Use Research, University of Victoria, 3800 Finnerty Road, Victoria, BC, V8P 5C2, Canada.
  • Black F; Faculty of Medicine - Island Medical Program, University of British Columbia, 3800 Finnerty Road, Victoria, BC, V8P 5C2, Canada.
  • Gerke J; Palliative and End of Life Care Program, Vancouver Island Health Authority, 1952 Bay Street, Victoria, BC, V8R 1J8, Canada.
  • Dosani N; Palliative Care Physician, Department of Family & Community Medicine, St Michael's Hospital at Unity Health Toronto, 36 Queen St E, Toronto, ON, M5B 1W8, Canada.
  • Colgan S; Cumming School of Medicine, University of Calgary, 2500 University Dr. NW, Calgary, AB, T2N 1N4, Canada.
BMC Palliat Care ; 23(1): 12, 2024 Jan 10.
Article en En | MEDLINE | ID: mdl-38200482
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:

Findings demonstrate how the rhetoric of 'choice' in regard to preferred place of death is ethically problematic because experienced inequities are produced and constrained by socio-structural forces that reach beyond individuals' control. Ultimately, our findings contribute suggestions for policy, programs and practice to enhance inclusiveness in palliative care. 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 and increase the opportunity for all to spend their end of life in the places that they prefer.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidados Paliativos / Poblaciones Vulnerables Tipo de estudio: Guideline / Qualitative_research Aspecto: Equity_inequality / Ethics Límite: Humans País/Región como asunto: America do norte Idioma: En Revista: BMC Palliat Care Año: 2024 Tipo del documento: Article País de afiliación: Canadá

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidados Paliativos / Poblaciones Vulnerables Tipo de estudio: Guideline / Qualitative_research Aspecto: Equity_inequality / Ethics Límite: Humans País/Región como asunto: America do norte Idioma: En Revista: BMC Palliat Care Año: 2024 Tipo del documento: Article País de afiliación: Canadá