The meaning of home at the end of life: A video-reflexive ethnography study

Abstract

Background: While ‘home’ is cited most frequently as being the preferred place of death, most people will die in institutions. Yet, the meaning and significance of home for people nearing the end of life has not been fully explored. Aim: The aim of this article is to critically examine the meaning of home for dying patients and their families. Design: The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period. Setting/participants: Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital. Participants included patients with a prognosis of 6 months or less (n = 29), their nominated family member(s) (n = 5) and clinicians (n = 36) caring for them. Patients and families were ‘followed’ through care settings including the palliative care unit and into their own homes. Results: Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged concerning this relationship: ‘No place like home’; ‘Safety, home and the hospital’; ‘Hospital “becomes” home’; ‘Home “becomes” hospital’; ‘Hospital and “connections with home”’; and ‘The built environment’. Conclusion: Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address. Clinicians caring for people nearing the end of life can foster linkages with home by facilitating connections with loved ones and meaningful artefacts.