Understanding the complexity of preferences for place of death and family involvement in end of life (EOL) care is especially urgent following decades of changes in Canadian health and social policies, funding and service delivery, which have increased structural pressures towards aging and dying in place. Although Canadian public policy is haphazard and patchwork, two key premises appear pervasive: the first is the idealization of home death and assumption that people prefer to die at home (Stajduhar 2003; Hankivsky et al., 2014); the second is the idealization and expectation of family responsibility (Duncan & Reutter 2006; Funk 2013; Hollander et al., 2007). These assumptions are rarely questioned in policy or practice, yet are not clear-cut in research. Indeed, preferences for home death are by no means absolute, rigid, or unconditional; they vary among subgroups (Brazil et al. 2005; Cox et al. 2013; Wilson et al. 2013) and even for the same individual over time (Evans et al. 2006). Moreover, although family care expectations can become institutionalized within policies, public beliefs about family responsibility are demonstrably more complex (Daatland & Herlofson 2005; Guberman et al. 2006; Kemp & Denton 2003).
The purpose of this mixed methods study was to examine and compare public attitudes and policy on dying at home and responsibility for supporting home death. Our overall inquiry, as well as our methodological approach, was grounded in a critical theoretical orientation that attends to potential inequities and to the historical, social, political, and economic context of home care, palliative care and family care work in Canada. Objective 1 was to examine Canadians’ attitudes about home death and responsibility for EOL care at home, and identify correlates of variation [we extended this to look at changes in these attitudes after the onset of Covid-19]. Objective 2 was to explore social meanings of dying at home and care responsibility within diverse and/or marginalized subgroups. Objective 3 was to explore implicit and explicit expectations regarding responsibility for supporting home death within policy documents. Objective 4, which will manifest more fully within our ongoing knowledge dissemination activities through 2022, is to integrate these forms of knowledge to assess differences and similarities in public attitudes, subgroup meanings, and expectations embedded within policy texts, and explore how policies can generate inequities.
Our findings contribute to academic scholarship on social attitudes of home death and family care responsibility, and about how and whether public policies in this area reflect or diverge from public opinion. More broadly, we hope the findings will stimulate wider public debate about these often-hidden issues, to develop policy approaches that reflect attitudinal complexity and avoid exacerbating inequities.
The project has been extended to 2022 due to the COVID-19 pandemic. Data collection has wrapped up and is being analyzed.
PUBLICATIONS, PRESENTATIONS AND OTHER OUTPUTS
First Panel Survey. We are pleased to be able to share a brief summary of our analysis of the our first national panel survey, which was completed prior to the pandemic; it is be available at the embedded links: in English and in French. A peer reviewed paper has also recently been published from this survey: Funk, L., Mackenzie, C., Cherba, M., Del Rosario, N., Krawczyk, M., Rounce, A., Stajduhar, K. & Cohen, S.R. (2022). Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national sample. BMC Palliative Care, 21, 139. https://rdcu.be/cSMas [Open Access]
We wrote a related Opinion Editorial published in the Toronto Star, August 29, 2022, entitled “Everyone wants to die at home – don’t they?” (L. Funk and M. Cherba)
Publications from the second iteration of our panel survey are in progress. Stay tuned here for a brief summary which will be posted soon.
Policy Interviews. A brief summary of our analysis of data from policy-focused interviews with 17 organizational and governmental professionals, provides insight into the policy landscape related to dying at home in Canada. It can be found at the embedded links here in English and in French language. A publication is in progress.
Stakeholder Interviews. A brief summary of our analysis of data from 24 grassroots stakeholders, including advocates, volunteers and workers with knowledge of experiences of diverse communities, can be found at the embedded links here in English language and French language. Two peer reviewed papers have also recently been published from those data: Funk, L.M., Krawczyk, M., Cherba, M., Cohen, S.R., Dujela, C., Nichols, C., & Stajduhar, K. (2023). “The beauty and the less beautiful”: Exploring the meanings of dying at ‘home’ among community and practitioner representatives and advocates across Canada. Journal of Palliative Care and Social Practice, 17. doi:10.1177/26323524231156944 [Open Access].
Chan, W.S., Funk, L.M., Krawczyk, M., Cohen, S. Robin, Cherba, M., Dujela, C., & Stajduhar, K. (2023). Community perspectives on structural barriers to dying well at home in Canada. Palliative and Supportive Care, 1-7. Advance access online: doi:10.1017/S1478951523001074 (contact Laura.Funk@umanitoba.ca for a copy)
Other outputs. A presentation integrating the survey findings with a preliminary overview of some of our qualitative data can be found at this link (part of the Gilbrea Seminar Series), and developed further for another presentation at this link (part of the Centre for Social Science Research and Policy’s speaker series). Various presentations and publications to date include:
Funk, L.M., Cherba, M., Cohen, S.R., Krawczyk, M., Mackenzie, C., Rounce, A., Scott, E., Chan, W.S., & Stajduhar, K. (May 4, 2023). Dying at home: integrating findings from a large-scale Canadian mixed methods study. Centre for Death and Society Virtual Conference.
Funk, L. (May 2, 2023). What do Canadians say about their preferred location of dying? Results from a national mixed-methods policy research study. Department of Medicine Rounds, Trillium Health Partners (Mississauga ON). Virtual.
Funk, L. (September 15, 2022). What do Canadians say about their preferred location of dying? Results from a national mixed-methods policy research study. Presentation for 30th Annual Provincial Palliative Care Conference (Palliative Manitoba), Winnipeg, MB.
Funk, L. (April 28, 2022). Where would Canadians prefer to die? Findings from a mixed methods policy research study. CSSRP Social Science Speakers Series. Winnipeg, MB. (Virtual)
Funk, L. (Nov 16, 2021). Unpacking the complexity of public preferences for and beliefs about dying at home in Canada. Gilbrea Centre for Studies in Aging and Department of Health, Aging and Society (McMaster), Virtual Seminar Series
William Pribula, an undergraduate student who was involved in the project in 2021, was inspired to write this blog post for the University of Glasgow’s End of Life Studies blog, October 15, 2021: Can we create compassionate communities that don’t rely disproportionately on women?