Unsettling Place(s) at the end of life
Introduction
An interesting paradox of palliative care policy and practice is the lack of critical analysis of space and place. This is despite place – particularly place of death – being central to the cultural imaginary of a ‘good death’. Death at home has, for some time, been considered ‘successful’ and the idea that the majority of people prefer to die at home is commonplace in policy and practice in Australia and beyond (ACSQHC, 2013; Department of Health, 2008; Robinson et al., 2016). Hospital deaths, are in contrast, often presented as technical, impersonal, and even inhumane (Illich, 1976; McNamara and Rosenwax, 2007; Seymour, 1999), and ‘place’ has thus become a proxy measure of quality of palliative care services (Maimoona et al., 2019).
Given this injunction toward place, medical and palliative care literature on death and dying has in turn tended to focus on such matters as: preferences for place of death (Arnold et al., 2015; Gomes et al., 2013; Higginson et al., 2013); the conditions that underpin whether or not preferences for place of death are met (Bell et al., 2010); and whether or not specialist palliative care services promote death and dying at home and/or reduce hospital admissions (DiMartino et al., 2014; Luckett et al., 2013; Seow et al., 2014). This body of work has been largely driven by the rhetoric of choice within dying. In other words, extant scholarship has tended to reinforce the idea that individualised, autonomous choice will make possible the kind of deaths people want (Borgstrom and Walter, 2015).
The aforementioned (and decontextualised) imaginaries of death and dying evade the growing complexities of such influences as stretched healthcare systems and the political interests involved in (re)locating care beyond the state (Gott, 2014). These influences, to a large extent, drive an agenda of ‘ageing in place’ and home-based care (Wiles, 2004). This shift is accompanied in many OECD countries, with an agenda to reduce length of hospital stays and minimise use of hospital beds by transferring care to the home (Williams, 2002).
Further complicating the spatial dimensions of dying, studies of death and dying ‘at home’ have tended to privilege home as the physical dwelling place (Visser, 2019). Home has often been imbued with meanings associated with attachment, nurturing, comfort, peace and the associated assumption that this attachment is one that is inherently supportive and adaptive (Milligan, 2018). Home, it is assumed, is where ‘natural’ dying can occur surrounded by one's family and supported by community (Horsfall et al., 2011). Within such framings, places for/of dying and death are seen as bounded fixed entities in which social events and processes occur (Collier, 2013).
Although the study of space and place has much to offer research in the study of death and dying, this has not been fully realised (Williams, 2002). The aim of this paper is to explore differentially positioned people's (i.e. patient, family, health care worker) experiences of end-of-life care in relation to space and place. Our central argument is that by foregrounding space, the multi-dimensional character of lived experience (at the end of life) might be captured in a way not otherwise possible. This, in turn, might mean greater attention to matters of most importance to people who are dying and their families.
Section snippets
Intersections of space, place and affect at the end of life
In thinking about the importance of space, place and affect at the end of life, we will first foreground some of the logics underpinning these concepts. The meanings ascribed to place and space have long been debated. Place is often seen as a particular lived space, and local, bounded and ‘fixed’. According to Tuan, place is a “concretion of value, it is an object in which one can dwell” (Tuan, 1977 p. 12). In other words, place is space that has been ascribed meaning (Tuan, 1977). This is in
Methods
We examined data from two previously separate studies (see Table 1 below). The connectivities between these studies were established when they were independently presented at a special session titled Space, Place and Wellbeing during the 18th International Medical Geography Symposium (IMGS) in 2019. We recognised synergies in our findings that our independent analysis of separate studies had not brought to light. This led us to jointly analyse our data from these studies through the conceptual
Death and dying: a political space
Often, it was not a question of ‘home’ itself, but how Government (in this case the Australian Government) was perceived to ‘prefer’ home as a place of care. This was, as reflected in the interviews, read as not about the superiority of home as a place for dying, but the desire to reduce costs for health services. In this sense, ‘home’ was viewed as becoming (increasingly) a politicised space inasmuch as it was a personal/private environment as this participant expressed:
Participant: I think so
Discussion
The findings of this paper extend previous work on space and place at the end of life. First, they are aligned with our own and others' studies showing that home as a concept, at the end of life, can only be understood in terms of its dynamic, emergent and relational properties (Williams, 2002). Further, our findings challenge simplistic ideas about home versus hospice, or hospital versus home, in care, dying and death. We have further emphasised the problematic of injunctions toward home as
Credit author statement
Aileen Collier: Conceptualisation, Methodology, Data analysis, Writing-Original draft preparation; Writing- Reviewing and Editing. Alex Broom: Conceptualisation, Methodology, Data collection, Data analysis, Writing- Original draft preparation.
Declaration of competing interest
None.
Acknowledgements
We thank the Australian Research Council who funded both studies. We also wish to thank all participants of our respective studies. Our thanks also to reviewers who, through their constructive comments, contributed to the quality of this manuscript.
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