Placing death and dying: Making place at the end of life

Annelieke Driessen,Erica Borgstrom,Simon Cohn

doi:10.1016/j.socscimed.2021.113974

Annelieke Driessen, Erica Borgstrom + Show 1 more

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https://doi.org/10.1016/j.socscimed.2021.113974

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Abstract

Over the last decade, policies in both the UK and many other countries have promoted the opportunity for patients at the end of life to be able to choose where to die. Central to this is the expectation that in most instances people would prefer to die at home, where they are more likely to feel most comfortable and less medicalised. In so doing, recording the preferred place of death and reducing the number of hospital deaths have become common measures of the overall quality of end of life care. We argue that as a consequence, what constitutes a desired or appropriate place is routinely defined in a very simple and static ‘geographical’ way, that is linked to conceptualising death as an unambiguous and discrete event that happens at a precise moment in time in a specific location.In contrast, we draw on 18 months of ethnographic fieldwork with two inner-London palliative care teams to describe the continual work staff do to make places suitable and appropriate for the processes of dying, rather than for a singular event. In this way, instead of ‘place of death’ merely defined in geographic terms, the palliative care staff attend to the much more dynamic relation between a patient and their location as they approach the end of their life. Central to this is an emphasis on dying as an open-ended process, and correspondingly place as a social space that reflects, and interacts with, living persons. We propose the term ‘placing work’ to capture these ongoing efforts as a patient's surroundings are continually altered and adjusted over time, and as a way to acknowledge this as a significant feature of the care given.

Highlights

Palliative care refers to symptom management and pain relief for conditions that cannot be cured; it can be provided to anyone with an incurable condition, those who are at the end of life
As part of this, dying at home is often singled out as the most appropriate and desired place for many people, with dying in hospital considered the least suitable (Teggi, 2020; UK National Palliative and End of Life Care Partnership, 2015, p. 27stein). This trend to foster greater numbers to die at home has been the result of a convergence of different perspectives, most notably; mounting criticism that end of life has become overly medicalised (Worpole, 2020), recognition that pa tients dying in a hospital creates a huge burden on secondary care re sources (Caley and Sidhu, 2011), and increasing awareness that health systems in the future will need to provide end of life care to more people, for more extended periods of time (Gomes and Higginson, 2008)
In contrast with the singular notions of both place and death, as articulated by current policies and the more formal accounts used in current healthcare management, we explore how concerns about place contin ually emerge from the interactions between staff, patients, and the material environment, and how this ‘placing work’ reflects the ongoing, and often unpredictable processes of dying

Summary

Introduction

Palliative care refers to symptom management and pain relief for conditions that cannot be cured; it can be provided to anyone with an incurable condition, those who are at the end of life. As part of this, dying at home is often singled out as the most appropriate and desired place for many people, with dying in hospital considered the least suitable This trend to foster greater numbers to die at home has been the result of a convergence of different perspectives, most notably; mounting criticism that end of life has become overly medicalised (Worpole, 2020), recognition that pa tients dying in a hospital creates a huge burden on secondary care re sources (Caley and Sidhu, 2011), and increasing awareness that health systems in the future will need to provide end of life care to more people, for more extended periods of time (Gomes and Higginson, 2008). Dying at home is thereby conceived of as a response to the growing imperative to respect patient dignity and autonomy while at the same time ad dresses the need for healthcare systems to save costs and reduce burden on secondary care provision (Pasveer et al, 2020)

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