Supporting Vulnerable and Marginalized Older Adults to be Cared for and to Die at 'Home'

Population-based studies show most people would prefer to be cared for and die at home. Supporting these preferences has become a proxy measure for quality end-of-life (EOL) care. Government policies are directed towards supporting care and dying at home. However, not all Canadians have a safe and secure home. Older adults impacted by intersecting inequities like racism, classism, and ageism and who experience social disadvantages like homelessness and poverty, face barriers in accessing care. Our research shows that a willingness to seek out/accept care at the EOL is highly dependent upon ‘where’ such care is provided. Vulnerable and marginalized older adults avoid seeking medical care at the EOL out of mistrust of medical professionals and fear of discrimination. Additionally, institutional settings, like hospitals, are avoided due to stigmatization, social exclusion, and power imbalances experienced within these spaces. Thus, providing these older adults with choice in where they are cared for and die is critically important. Yet, our research shows that discourses around risk and safety and current housing policies and regulations prevent these older adults from getting the care they need to be able to be cared for and die-in-place. Moreover, our research shows that some older adults are evicted or lose their transitional or shelter-based housing because housing regulations do not allow people to receive care ‘in place’ as their health declines. While many Canadians can be cared for and die at home through support of community-based and palliative care services, less is known about how to facilitate care and dying-in-place for vulnerable and marginalized older adults who are on a palliative trajectory.

Study description

We will conduct an evidence synthesis (scoping review and document analysis of housing and health policies, regulations, and guidelines in 3 provinces). We will also conduct key informant and ethnographic interviews, focus groups, and participant observations with health and housing workers and leaders in 3 Canadian cities (Victoria, Calgary, and Thunder Bay) and with older adults and their chosen supporters. We will use findings to engage key stakeholders to co-develop recommendations aimed at informing policies and services that will promote equitable approaches to meet the needs of older adults and who also desire to be cared for and die in their place of choice.

Research objective

The goal of this study is to understand how we can facilitate dying-in-place for vulnerable and marginalized older adults. Our objectives are to:

• Identify and analyze published literature, and policy and regulatory guidelines that guide decision making related to place of care and death for structurally vulnerable older adults.
• Describe, from the perspective of older adults, their support persons, and housing and health service providers, the conditions that would enable older adults to be cared for and die-in-place.
• Determine the required policy and regulatory changes and community-based health and social services that would be needed to promote older adults experiencing structural vulnerability to be cared for and die in-place if that was their wish to do so; and
• Integrate findings to inform the co-development of a set of actionable recommendations to guide health and housing sector leaders to promote equity-oriented policies and services to enable older adults to be cared for and die-in-place or in locations consistent with their wishes.

Funding

This research is funded by the Canadian Institutes of Health Research (CIHR PJT 186033).

Principal Investigator

• Kelli Stajduhar (University of Victoria)

Researchers

• Kevin Bezanson, Co-Applicant (Thunder Bay Regional Health Sciences)
• Denise Cloutier, Co-Applicant (University of Victoria)
• Simon Colgan, Co-Applicant (Alberta Health Services, CAMPP)
• Naheed Dosani, Co-Applicant (Inner City Health Associates, PEACH)
• Marilou Gagnon, Co-Applicant (University of Victoria)
• Jill Gerke, Co-Applicant (Island Health)
• Melissa Giesbrecht, Co-Applicant (University of Victoria)
• Gillian Kolla, Co-Applicant (University of Victoria)
• Katherine Kortes-Miller, Co-Applicant (Lakehead University)
• Robyn Kyle, Co-Applicant (Unaffiliated, Victoria)
• Jeff Masuda, Co-Applicant (University of Victoria)
• Ryan McNeil, Co-Applicant (Yale University)
• Zahra Premji, Co-Applicant (University of Victoria)
• Holly Prince, Co-Applicant (Lakehead University)
• Michelle Vanchu-Orosco, Collaborator (Alliance to End Homelessness in the Capital Region) 

Project Staff

• Ami Bitschy, Research Coordinator (University of Victoria, BC)
• Alexandra Grillo, Research Assistant (Lakehead University, ON)
• Lexy Stewart, Research Assistant (University of Victoria, BC)