The influence of place of death and rural residency on the 'good death'

Abstract

Background Achieving one’s preferred place of death is often considered, within palliative care, as a proxy for a ‘good death’. To date, most place of death studies are quantitative and reflect an urban view. The objectives of this study were to explore the concept of the good death from the experiences and perspectives of rural patients with a life limiting illness, and their family caregivers, within the Snowy Monaro region of New South Wales, Australia; to determine the influence of place of death and rural residency on the ‘good death’. Methods This thesis was a mixed methods study, comprising 1. Two systematic and one scoping literature reviews, exploring rural place of death, the rural ‘good death’, and end-of-life care from the experiences and perspectives of rural patients and family caregivers. 2. An ethnographic study utilising open ended interviews with 11 rural patients with life limiting illness, 18 family caregivers, and six clinicians (medical and nursing). 3. A cross-sectional study of cause and place of death for all people who died in the Snowy Monaro region between 1st February 2015 and 31st May 2016 (N= 224). Results Of the 224 deaths recorded, 138 (62%) were due to an illness amenable to palliative care. Seventeen (12%) of these deaths occurred at home, in a private residence; 52 (38%) occurred in the usual place of residence. Residential aged care was considered home for some residents. Home was the initial preferred place of death for those interviewed. Over time, dying in a safe place became more important than dying at home. A ‘safe death’ emerged as the central theme of a ‘good death’. Home is more than the material structure. It represents connection to the land, family, and memories, all elements that underpin its value as a safe place. Rural residency helped maintain home as a safe place (e.g. privacy on the farm); however, these same features quickly rendered home an unsafe place of death (e.g. isolation). The roles of the rural hospital and rural residential aged care in end-of-life care are unique, and their familiarity within one’s community often makes them a safer alternative to home, and a substitute for in-patient hospice. Conclusion Most Snowy Monaro residents do not die at home, yet a ‘good death’ is achievable. Many elements of the ‘good death’ are not unique to rural residency; however, rural perspectives on place of death are often contrary to the urban view. A death at home does not ensure a good death. The task for all those providing and supporting end-of-life care is to ensure all places for dying can deliver the ‘safe death’ no matter where the illness trajectory dictates that the person dies.