Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

A Social Capital Perspective on Social-Medical Collaboration in Community End-of-Life Care in Hong Kong.

Recent developments in Hong Kong end-of-life (EOL) care have shifted some caring work for dying people and their families to cross-disciplinary collaboration in community settings. Social-medical collaboration becomes especially important. This study aims to use social capital as an analytical lens to examine the processes and mechanisms of social-medical collaboration in EOL care and elucidate practice implications for engaging in the care of dying people and their families. Qualitative data were collected using in-depth interviews. Three major conceptual categories were generated through grounded theory methodology. They are (a) establishing trust through keeping clear and simple boundaries, (b) cultivating mutuality in the multi-disciplinary meeting, and (c) fostering social-medical collaboration in EOL care. Each new stage is based on the social capital accumulated in the previous one through the social interactions between professionals. Such theorization also provides insights into how to achieve effective social-medical collaboration in this context.

Cultivating mutuality: A qualitative study of community end-of-life care in Hong Kong.

In Hong Kong, death and dying are identified as a crucial public health issue, and as the healthcare system has developed, there has been a shift of some care for dying people and their families to cross-disciplinary collaboration in community settings. This shift enhances the salience of social relationships in non-medical forms of community-based end-of-life (EOL) care. The purpose of this paper is to contribute to knowledge about relational development in this regard. Abductive grounded theory methodology was used to examine the complex dynamics and mechanisms involved in cultivating mutuality between dying people (and their families) and volunteers and professionals in two community-based EOL social service agencies in Hong Kong. Qualitative data were collected between June and December 2019 using in-depth interviews with 14 agency practitioners and two theoretically sampled service users. Theoretical coding followed open coding to reach theoretical saturation. Cultivating mutuality was found to entail processes of finding social commonalities (and hiding differences), immersing in routines, supporting actualisation (granting the wishes of dying persons and their families) and engaging with clients' emotions (encouraging emotional release, demonstrating emotional involvement and actively listening). Findings offered a novel symbolic interactive and relational understanding of community EOL care practice. Contributions include theorising social processes in an intermediate stage of social capital and compassionate community development.