“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

Burdens of Family Caregiving at the End of Life

A patient’s ability to be cared for and to die at home is heavily dependent upon the efforts of family caregivers. Considerable stresses are associated with such caregiving, including physical, psychosocial and financial burdens. Research has shown that unmet needs and dissatisfaction with care can lead to negative outcomes for caregivers. While many family caregivers also report caregiving as life-enriching, some report that they would prefer alternatives to care at home, primarily because of these associated burdens. Little is known about which interventions are most effective to support family caregivers ministering palliative care at home. Well-designed studies to test promising interventions are needed, followed by studies of the best ways to implement the most effective interventions. Clinically effective practice support tools in palliative home care are warranted to identify family caregiver needs and to ensure that patients and their family caregivers have a choice about where care is provided

Communicating shared decision-making: cancer patient perspectives

Objective: To contribute to the evolving dialogue on optimizing cancer care communication through systematic analyzes of patients' perspectives.Methods: Using constant comparative analysis, inductively derived thematic patterns of communication preferences for shared decision-making were drawn from individual interviews with 60 cancer patients.Results: Thematic patterns in how patients understand barriers and facilitators to communication within shared decision-making illuminate the basis for distinctive patient preferences and needs. Prevailing cancer communication considerations included focusing attention on the tone and setting of the consultation environment, the attitudinal climate within the consult, the specific approach to handling numerical/statistical information, and the critical messaging around hope. The patient accounts surfaced complex dynamics whereby the experiences of living with cancer permeated interpretations and enactment of the shared decision-making that is emerging as a dominant ideal of cancer care.Conclusion: In our efforts to move beyond traditional paternalism, shared decision-making has been widely advocated as best practice in cancer communication. However, patient experiential evidence suggests the necessity of a careful balance between standardized approaches and respect for diversities.Practice implications: Shared decision-making as a practice standard must be balanced against individual patient preferences. Crown Copyright (C) 2012 Published by Elsevier Ireland Ltd. All rights reserved

Equity-Oriented Healthcare: What It Is and Why We Need It in Oncology

Alarming differences exist in cancer outcomes for people most impacted by persistent and widening health and social inequities. People who are socially disadvantaged often have higher cancer-related mortality and are diagnosed with advanced cancers more often than other people. Such outcomes are linked to the compounding effects of stigma, discrimination, and other barriers, which create persistent inequities in access to care at all points in the cancer trajectory, preventing timely diagnosis and treatment, and further widening the health equity gap. In this commentary, we discuss how growing evidence suggests that people who are considered marginalized are not well-served by the cancer care sector and how the design and structure of services can often impose profound barriers to populations considered socially disadvantaged. We highlight equity-oriented healthcare as one strategy that can begin to address inequities in health outcomes and access to care by taking action to transform organizational cultures and approaches to the design and delivery of cancer services.Applied Science, Faculty ofNon UBCNursing, School ofReviewedFacult

When Cancer Hits the Streets

Toby died 5 October 2015. [...

Situated/being situated: Client and co-worker roles of family caregivers in hospice palliative care

Since the inception of the modern hospice movement, the patient and family caregiver (FCG) have been considered the unit of care; family members are identified as 'clients' within palliative care philosophy. Little research has focused on how FCGs define their roles within the hospice palliative care (HPC) system. The aim of this study was to describe how FCGs of dying cancer patients view their roles in relation to the HPC system. Secondary analysis of interviews with 36 bereaved FCGs in Western Canada, guided by interpretive descriptive methods, found that FCGs perceived themselves as having two roles: client and co-worker. FCGs situated themselves as clients, where they actively sought help from the health care system. FCGs at times also perceived they had been situated as clients by health care providers, and were more resistant to accepting help. In other comments FCGs situated themselves as co-workers, seeking out an active role within the HPC team, whereas in other instances, felt they were situated as co-workers by a health care system with limited financial and human resources. Findings suggest that greater emphasis be placed on helping family members identify suitable interventions depending on how they view their roles within the HPC system. How we define family members in relation to the HPC system may also require reconsideration to reflect a more current conceptualization of realities in end-of-life care.Palliative care End of life Family caregiver Health care system Clients Co-workers Canada