“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

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

Minding the gap: access to palliative care and the homeless

Abstract Background With an ever increasing number of individuals living with chronic and terminal illnesses, palliative care as an emerging field is poised for unprecedented expansion. Today’s rising recognition of its key role in patients’ illnesses has led to increased interest in access to palliative care. It is known that homelessness as a social determinant of health has been associated with decreased access to health resources in spite of poorer health outcomes and some would argue, higher need. This article aims to discuss the current state of affairs with regards to accessing palliative care for the homeless in Canada. Discussion Recent review of the literature reveals differential access to palliative care services and outcomes with differing socio-economic status (SES). Notably, individuals of lower SES and in particular, those who are homeless have poorer health outcomes in addition to poor access to quality palliative care. Current palliative care services are ill equipped to care for this vulnerable population and most programs are built upon an infrastructure that is prohibitive for the homeless to access its services. A preliminary review of existing Canadian programs in place to address this gap in access identified a paucity of sporadic palliative care programs across the country with a focus on homeless and vulnerably-housed individuals. It is apparent that there is no unified national strategy to address this gap in access. Summary The changing landscape of the Canadian population calls for an expansion of palliative care as a field and as many have put it, as a right. The right to access quality palliative and end of life care should not be confined to particular population groups. This article calls for the development of a unified national strategy to address this glaring gap in our healthcare provision and advocates for attention to and adoption of policy and processes that would support the homeless populations’ right to quality palliative care

Influenza Vaccination Rates Among Homeless Adults With Mental Illness in Toronto

Objective: To determine the incidence of influenza vaccination among homeless individuals with mental illness in Toronto. Methods: A retrospective chart review was carried out using a random sample of homeless individuals with mental illness who were participants of the At Home/Chez Soi Study. Primary care charts were obtained and reviewed for the incidence influenza vaccination within a 1-year period. Results: Of the 75 participants for whom charts were reviewed, 5 (6.7%) had documentation indicating receipt of the influenza vaccination in the year prior to study recruitment. Conclusion: This study raises awareness of the low incidence of homeless adults receiving the influenza vaccination in Toronto. The data are concerning given the high risk of morbidity from communicable respiratory illnesses in this group. Further research into the causes of low influenza vaccination rates among homeless Canadians is needed to develop strategies for increased delivery of the vaccination

Perceptions of palliative care in a South Asian community: findings from an observational study

Abstract Background Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations. Methods This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings. Results Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (≥ 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services. Conclusions Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations

The effect of a Housing First intervention on primary care retention among homeless individuals with mental illness.

BackgroundPrimary care retention, defined as ongoing periodic contact with a consistent primary care provider, is beneficial for people with serious chronic illnesses. This study examined the effect of a Housing First intervention on primary care retention among homeless individuals with mental illness.MethodsTwo hundred individuals enrolled in the Toronto site of the At Home Project and randomized to Housing First or Treatment As Usual were studied. Medical records were reviewed to determine if participants were retained in primary care, defined as having at least one visit with the same primary care provider in each of two consecutive six-month periods during the 12 month period preceding and following randomization.ResultsMedical records were obtained for 47 individuals randomized to Housing First and 40 individuals randomized to Treatment As Usual. During the one year period following randomization, the proportion of Housing First and Treatment As Usual participants retained in primary care was not significantly different (38.3% vs. 47.5%, p = 0.39). The change in primary care retention rates from the year preceding randomization to the year following randomization was +10.6% in the Housing First group and -5.0% in the Treatment As Usual group.ConclusionAmong homeless individuals with mental illness, Housing First did not significantly affect primary care retention over the follow-up period. These findings suggest Housing First interventions may need to place greater emphasis on connecting clients with primary care providers

Additional file 1 of “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

Supplementary Material 1: Observation and Focus Group Guide for Equitable Access to Care (EAC) stud