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 is 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, is 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 is to examine Canadians’ attitudes about home death and responsibility for EOL care at home, and identify correlates of variation. Objective 2 is to explore social meanings of dying at home and care responsibility within diverse and/or marginalized subgroups. Objective 3 is to explore implicit and explicit expectations regarding responsibility for supporting home death within policy documents. Objective 4 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 will 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, the findings will stimulate wider public debate about these often-hidden issues, to develop policy approaches that reflect attitudinal complexity and avoid exacerbating inequities.
***PROJECT UPDATE (August 2020). The COVID-19 pandemic has caused us to pivot our data collection. So far was have completed a national survey of Canadian’s attitutdes about home death, and responsibility for end of life care at home – these data are currently being analyzed, and we are in the field for a repeat ‘post-COVID’ version of the survey, since the pandemic has so fundamentally shaped the delivery of formal services and supports as well as the experience of family caregiving. We are also currently in the field recruiting and interviewing ‘key informants’ – organizational representatives and experts – to help us better understand the complex policy landscape around this topic; we are also recruiting and interviewing representatives and advocates from diverse and/or marginalized subgroups (in Winnipeg, Victoria and Montreal), eliciting their perspectives about the meaning of dying at home and how this has shifted due to COVID-19. We hope to start publishing results through late 2020-spring 2021.