Dying cases in emergency places: Caring for the dying in emergency departments

Abstract

In an ageing society, like the UK, where long-term illness dominates healthcare, there has been a change in the way that the end-of-life is approached and experienced. Advancing technology, inadequate knowledge and inconsistency in palliative care services have complicated the ability to recognise imminent dying and many people access emergency services at the end-of-life. Drawing on ethnographic research exploring end-of-life care in one large Emergency Department (ED), the authors examine the spaces of dying and death, which are created in a place designed to save life, and not necessarily to provide supportive and palliative care. Despite the high need for attention in an emergency crisis, this study shows that the approach taken to care for someone at the end-of-life, and consequently the space in which they are cared for, often falls short of the expectations of the dying patient and their relatives. It is argued that the dying body is seen as dirty and polluted in the sterile, controlled, clinical environment and is therefore ‘matter out of place’. Attempts are made to conceal or remove the dying patient, the bereaved relatives and the deceased body protecting the natural order of the ED. Consequently, the individual supportive and palliative care needs of the dying are often overlooked. This paper highlights the needs of patients as death nears in the ED and argues that the critical decisions made in the ED have a significant impact on the quality of care experienced by patients, who spend the last few hours of their life there.

Introduction

Modern society is characterised by an ageing population and a range of scenarios in which death occurs. Over the last 20 years the number of people aged 85 and over has nearly doubled. In the UK it is estimated that those aged over 60 is projected to increase from 12 million in 2001 to 18.6 million in 2031 (Office National Statistics 2006). However, one only needs to walk onto a hospital ward to realise that these extra years have not necessarily been lived in good health. Despite the inevitability of death, the majority of people living in the developed world have a very limited exposure and experience with dying. In this respect, modern Westerners differ dramatically from both their predecessors and their contemporaries living elsewhere in the world. Except for the health professionals and caregivers that care for the dying on a daily basis, death has become largely absent from day to day experience, and yet also omnipresent in the mass media, television and film (Clark & Seymour, 1999). Clark and Seymour (1999) further suggest that it is this separation of public and private dimensions of death, which is responsible for the way in which society views death and dying today.

With growing concerns over equal access to adequate end-of-life care services (Lawton, 2000; Moller, 2004) along with the complexities of the dying process, the Emergency Department (ED) is increasingly becoming the referral site for many patients at the very end-of-life, who seek support, advice and symptom control. Once associated with sudden, unexpected deaths, the ED nowadays see a considerable proportion of patients who require medical assistance with existing health problems from which they are likely to die (Bailey, Murphy, & Porock, 2011). The media often presents the ED, as a setting where trauma resuscitation and highly technical interventions take place in response to a sudden threat of death. However, the reality in contemporary, resource intensive societies is that more deaths occur from long-term illness with its commensurate slow progressive dying process. Most patients who are admitted from the ED and die in-hospital do not have unexpected deaths but are on known dying trajectories (Zalenski & Compton, 2004). Although these deaths do not always occur in the ED, a substantial number of patients with serious illness are treated therein the last month of life (Earle, Neville, & Landrum, 2004). The ED is the accessible front door to the healthcare system, a ‘safety net’ when symptoms are out of control (Grudzen et al., 2011) hence, it is frequently used by older patients, who are frail or unwell, and who gradually deteriorate over a period of time and eventually enter the ED near the end of their lives. It is very likely that at the time of deciding to go to the ED for help, the patient (or family) will not realise that they are actively dying. However neither the service nor physical layout of the ED is designed around the provision of end-of-life care for these people. Smith et al., 2009 identifies that the chaotic environment, competing demands, and long wait times that exist in the ED are structural barriers to the provision of optimal palliative care. Despite forming a considerable part of ED presentations, the quality of care delivered to patients with supportive and palliative needs is concerning.

Healthcare systems across the world have made considerable attempts to reduce the number of hospital admissions at the end-of-life amongst people diagnosed with terminal illnesses (Californian Healthcare Foundation, 2011, Department of Health, 2006, Robert Wood Johnson Foundation, 2009). However, the ED remains a place where death occurs frequently, yet it remains an under-researched, under supported setting for supportive and palliative care resources. Worryingly, research consistently reports concerns over the care of dying people in acute care settings (Parish et al., 2006, Bailey et al., 2011). In previous work and from the same data set, the authors have defined two distinct trajectories of end-of-life care in the ED highlighting that emergency staff respond differently to deaths that are sudden and spectacular compared to a death culminating from a slow often progressive disease, the subtacular (Bailey et al. 2011).

The spaces used to care for patients and their relatives have been studied within the wider hospital setting. Quested and Rudge (2003) observed that hospitals intentionally separate the sick from the healthy and this segregation is mediated by systems of classification that are enacted by professionals in different roles both in the hospital and within wider society. As death nears, the protective actions of healthcare professionals can be seen more clearly. Costello (2000) describes the phenomenon of death in hospital as ‘cloaked in secrecy’. During his study in USA hospitals, Sudnow (1967) observed that certain living patients were treated as though they were already dead. He defined social death as ‘that point at which socially relevant attributes of the patient begin permanently to cease to be operative as conditions for treating him, and when he is essentially regarded as already dead’ (Sudnow 1967: 74). Kastenbaum (1969:15) describes social death as ‘a situation in which there is absence of those behaviours which we would expect to be directed towards a living person and the presence of behaviours we would expect when dealing with a deceased or non-existent person’. Kalish (1968:254) furthers the concept of social death dividing social death into ‘self’ and ‘other-perceived’. Self-perceived social death occurs when an individual accepts the notion that they are ‘as good as dead’, and other-perceived when people who once knew an individual as alive ‘now think of him as being, for all practical purposes, dead or non-existent’. As Mulkay (1993:33) correctly identifies, it is possible for an individual to be perceived ‘at the same time dead for some parties yet socially alive for others’.

This paper begins with a case study from the observations made in the ED. The interview data will then be used in combination with the observational data to address the wider theoretical concerns that are demonstrated through the chosen case. Drawing upon the work of Lawler (1997) and Douglas (1966), the authors examine how space is used to ‘care’ for patients at the end-of-life and explore further meaning behind attitudes to the dying in the emergency setting.