'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada

Laura Funk; Marian Krawczyk; Maria Cherba; S Robin Cohen; Carren Dujela; Camille Nichols; Kelli Stajduhar

doi:10.1177/26323524231156944

'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada

Palliat Care Soc Pract. 2023 Mar 14:17:26323524231156944. doi: 10.1177/26323524231156944. eCollection 2023.

Authors

Laura Funk¹, Marian Krawczyk², Maria Cherba³, S Robin Cohen⁴, Carren Dujela⁵, Camille Nichols⁶, Kelli Stajduhar⁷

Affiliations

¹ Department of Sociology and Criminology, University of Manitoba, 307-183 Dafoe Road, Isbister Building, Winnipeg, MB R3T 2N2, Canada.
² School of Interdisciplinary Studies, University of Glasgow, Dumfries, UK.
³ Department of Communication, University of Ottawa, Ottawa, ON, Canada.
⁴ Lady Davis Research Institute, Montréal, QC, Canada.
⁵ Institute on Aging & Lifelong Health, University of Victoria, Victoria, BC, Canada.
⁶ Department of Sociology and Criminology, University of Manitoba, Winnipeg, MB, Canada.
⁷ School of Nursing, University of Victoria, Victoria, BC, Canada.

Abstract

Background: Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined.

Objective: The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home.

Design: Semi-structured virtual interviews were conducted with 24 community and practitioner representatives and advocates across Canada during the Covid-19 pandemic. This included compassionate community advocates, palliative care professionals and volunteers, bereaved carers, and members of queer, rural, and immigrant communities. Participants were asked about their own preferences for location of dying and elaborated on these aspects with regard to their client population or community group.

Results: Our analysis illuminates how meanings of dying at home are connected to previous experiences and perceptions of institutional care. As such, participants' perspectives are often framed as a rejection of institutional care. Dying at home also often signals potential for preserving ontological security and relational connection in the face of life-threatening illness. However, participants' expertise simultaneously informs a sense that dying at home is often unattainable. At times, this awareness underpins interpretations of both preferences and choices as contingent on considerations of the nature and type of illness, concerns about impacts on families, and available resources.

Conclusion: The ideal of dying at home is nuanced by identity, relational, and structural contexts. Knowledge from this study can inform realistic and practical person-centered planning across care settings. It can also help create more representative public policy and health system quality indicators regarding a 'good death' that do not rely on or perpetuate undeveloped and unrealistic assumptions about dying, home, and family care.

Keywords: dying at home; hospice care; interpretive research; palliative care; place of death; public preferences.