What socio-cultural, emotional and relational factors shape older people's experiences of death and dying in residential aged care? A scoping review

Abstract

Research internationally has revealed a range of medical and health-related issues that shape care at the end of life for people living in residential aged care facilities (RACFs), their families and the staff who care for them. Yet, less is known about the lived experiences of residents, and the broader socio-cultural, emotional and relational factors that shape experiences of dying within such settings. In this article, we present findings from a scoping review designed to establish what is known about the lived experience of residents nearing the end of life. In doing so, we identify research gaps and move towards an agenda for future research. Five electronic databases were used to identify empirical research articles investigating end-of-life experiences from the perspective of older people living in RACFs, from which we selected 22 papers for thematic analysis. Our analysis highlighted three key themes: connections and closeness; place and the end of life; and temporality, care and the anticipation of dying. A majority of the articles (15) highlighted the importance of social connectedness with staff, co-residents and family in enabling people to die with dignity and a sense of belonging in residential settings. The physical layout and living arrangements in RACFs were found to affect the ways in which residents relate within the space, especially during and after the death of a resident. Anticipatory fears of dying were oriented towards the context of illness and care, and its management within the RACF, rather than death itself. Our analysis highlights considerable evidence that ‘good deaths’ are embedded in experiences of socio-emotional wellbeing, connectedness and relationality. However, much of the extant research analysed is exploratory, pointing to the need for further social scientific study of the social and cultural embeddedness of end-of-life experiences with residential aged care.