"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.

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.

Extending Palliative Approaches to Care Beyond the Mainstream Health Care System: An Evaluation of a Small Mobile Palliative Care Team in Calgary, Alberta, Canada.

Background: People experiencing houselessness (PH) endure worse health outcomes than their housed counterparts and often have inadequate care when nearing end of life. Innovative palliative care approaches are necessary when considering socially vulnerable populations. Aim: Evaluate the implementation and early outcomes of the Calgary Allied Mobile Palliative Program (CAMPP) after the first four years of servicing people experiencing extreme social marginality. Setting/Participants: Participants include CAMPP clients and service providers (SPs) who work adjacently to CAMPP in the social services/health sectors. Design: This is a mixed-methods evaluation, including an SP survey (n = 31); client interviews (n = 5); collection of program metrics; and case note reviews. Results: The CAMPP has served 128 clients to date. The CAMPP supported clients by connecting them to 62 services, programs, agencies, and/or resources totaling 485 connections. The most referred-to resource was for social support in the community for PH at 61 referrals. The second was for transportation with 57 referrals, followed by referrals to palliative and Home Care programs (n = 53 referrals). Another common referral was for food assistance with 30 referrals. The survey showed that 97% of SPs agreed that CAMPP is "an essential service in the area of palliative care." Twenty-six of 30 (87%) "Strongly Agreed" or "Agreed" that their knowledge in working with people with life-limiting illnesses has improved since working with CAMPP. The SPs suggested that the team should focus on referral clarity and improved communication with the wider health care team. Finally, clients reported high levels of satisfaction with CAMPP services. Clients also reported challenges navigating the complexity of care in the social/health services sector. Conclusions: The CAMPP bridges the gap in care between health/social services. The CAMPP connects clients to community resources and is effective in adapting to client needs. This evaluation provides four recommendations to improve and build on the existing program.