I hovered in the doorway as the palliative care nurse who I was shadowing that day indicated I should. She entered the darkened side room to check on a male patient. I could barely make out his shape on the bed; it looked like he was slightly propped up and in a pale green hospital gown. Besides him in the bed, there was only one chair in shadows. She took his hand in hers and leaned in, almost whispering in his ear. I faintly heard something like “You look like you’re doing well today, I’ll leave the pain medication as it is” and then saw her stand up again before she took another moment to look at him. He didn’t respond, or at least I don’t think his raspy breaths could be taken as a response. He was dying and was actually sedated and asleep. The nurse placed his hand gently back on the bed and joined me at the door, a light smile on her face reassuring me that all is okay, perhaps realising that I had not seen many dying people before. We turned out of the doorway, softly closed the door behind us and went off the ward to visit the next patient on our round list. That was the first side room I got to visit during my doctoral research on end-of-life care about 10 years ago (Borgstrom 2014). It’s one that has played on my mind and in my dreams since – the grey haze and muted green in the room, the pale, sunken skin on the patient’s angular face. The quiet tones and lack of usual ward noises that somehow demarcated this space as something else. A space I could, for that the time being, only rest in the doorway of.
I had heard about side rooms a lot from the staff in my interviews and our informal chats; about how staff-members preferred to move dying patients to side rooms. This preference was unquestioned by them. Their unquestioned preference is in contrast to findings from research literature that indicates that single-occupancy rooms in hospitals may receive fewer nurse visits (Donetto et al. 2017), implying less interaction, care and personalised attention. And literature from within anthropology that illustrates how some people may actually prefer communal spaces when they are dying (Lawton 2000). This essay reflects on the use of the side room in English hospitals in the 2010s – where a typical ward may have one to four single-occupancy side rooms and several multi-bed bays –and how they are strategically used for positioning dying and death within the hospital wards.
In the example above, the man had been moved to the side room recently after the palliative care team determined he was likely to die within the next few days. He had been on a general ward prior to this, not recovering from what appeared to be a chest infection. The palliative care nurse wasn’t sure how long he had been in hospital; he had recently been referred to the team for pain management and breathlessness. I asked her if his raspy breathing was related to his infection – yes and no she said. “It’s beginning to sound a bit like a death rattle”. She then went on to tell me that other patients on the ward can be very ‘put off’ by hearing this, and so it was ‘important’ that he could be moved to the side room. And it was ‘lucky’ she said that it had recently become free (meaning someone had died and therefore vacated the room) and he could be moved in there before it got worse.
Besides the death rattle, dying people may shout out, grimace or groan (not necessarily from pain), wither about restlessly as they sleep or rest, and their skin may change colour in the last 24 hours (Dying Matters n.d.). Some of these natural bodily processes can be altered with medication, including providing enough pain medication as to effectively sedate a patient or make them less restless (Arolker 2017). Nevertheless, how a dying person ‘behaves’ can be in stark contrast to someone sitting in their bed reading a magazine or dozing all day.
The side room on this ward provided a way for staff to ‘hide’ the dying from other patients, many of whom are of a similar age and ‘may find it distressing’ to confront mortality in the bed next to them. Because dying is not just something you can see – but also hear – the blue curtains around beds in the ward do not do enough to separate the living and the dying in the bays.
This sequestering of dying and death forms the basis for a long-standing critique within the sociology of medicine and death studies, with commentators citing it as a potential reason for ‘contemporary society’ no longer knowing what death looks like or how to manage the dying (Aries 1981; Kellehear 1984; Lawton 1998; Froggatt 2001). This is even a critique adopted within palliative care – but rather than argue that patients should be left on the ward, to make dying ‘more visible’ and public, there is a general consensus that ideally people should be dying at home ‘in the community’ (Robinson et al. 2016). Typically, hospitals – and more specifically the ‘noisy’ wards – are generally perceived not to be good places to die (Hewison et al. 2015).
Yet, almost half of all deaths in England each year occur in hospitals, although this rate has been decreasing recently (Public Health England 2018). Besides hiding dying people away, side rooms are suggested by staff to make the inevitable dying in hospital more dignified. The constant beeps from machines, buzzers from beds, and slamming of metal rubbish bins in the bays are muffled by the walls of the side room. Lights can be dimmed or shut off, curtains closed to enable rest. A side room can be made to feel more peaceful, I’ve been told, in contrast to the rest of the eventful ward – and if it is at the end of a corridor, rarely disturbed by the usual going-on of staff, patients, and visitors alike.
Moreover, the ability to close a door rather than pull a curtain around a bed signifies some sort of privacy and respect for those in the hospitals I visited. The palliative care and ward staff I spoke to preferred this, especially for when they need to have ‘difficult conversations’ with patients or their families. “When you’re at the bedside on the ward, you’re aware that others are implicitly eavesdropping; here they can’t” one nurse told me. This was also appreciated by families or friends visiting, feeling freer to talk to them and cry without a presumed audience. I, too, have found it easier – more comfortable even, and not just because side rooms may have nicer chairs – to spend hours at someone’s beside when in the hospital. There is something about the enclosed space that enables a more relaxed and almost ‘everyday like’ exchange between people.
And to encourage an ‘everyday like’ feel to these side rooms, patients and families are prompted to decorate the space with personal belongs and inhabit the room, more so than they are when on the ward. For example, I’ve seen photographs, kids’ drawings and religious iconography hung on the wall and window ledges overflowing with cards. The ward’s rules may be otherwise also relaxed in terms of visiting hours and the number of visitors one can have at any one time – instead of two people at a time there could be a whole trope rallied around the bed, coming and going throughout the day. I’ve known grown adult children and grandchildren to even temporarily ‘work from home’ in these side rooms, sitting in a chair with their feet resting on the bed and laptop balancing on their legs. The side room enables both staff and others to suspend what ‘being in hospital’ is usually like and to make it more homelike. Some hospitals have formalised this adaption through initiatives like the ‘Swan’ model of care that promote reworkings of hospital space and culture like these and are thought to ‘act as enablers and gold-standards of quality end-of-life care’ (Nottingham University Hospitals NHS Trust n.d.).
Of course, this isn’t the experience everyone has. The man I first mentioned didn’t have a personally decorated side room nor was he surrounded by relatives. He was alone. And not everyone who dies in hospital can die in the darkened or personalised side rooms -there are just not enough of these side rooms in the current buildings. The staff I spoke to often described being upset at this ‘reality’, their faces visibly upset, and spoke about ways of optimising the use of side rooms. They suggested reserving them only for the imminently dying, although this can be difficult to recognise and privileges dying patients over others who may have otherwise been given a side room for different reasons – such as infection control, to reduce sensory input or to manage a patient’s mental health or confusion. And some wards have more patients who are likely to die in a several-day period than the number of side rooms available, leading to questions about how to prioritise who is given this space. This needing to justify and prioritise the side room as a resource was apparent in several cases that I followed throughout my various projects.
One such case involved Mable, a woman I visited a lot during my PhD, spending most of my visits at her bedside in the hospital during her stay that spanned three months. Each time I visited, I needed to check in with the nurses station to see where she’d be: they had a habit of moving her around the ward as they did their ‘bed management’ because, as her son acknowledged, she was a compliant person and wouldn’t complain. Some days she’s be in a bay closer to the nurses’ station (this was when she was likely to fall each time upon standing, so they could observe her better), and other days she would be further down in a bay full of woman who were mainly post-operative and chatty. Mable was in the hospital for unexplained blood loss and the doctors were going back-and-forth about what it could be and how to treat it. Mable indicated that she didn’t really care what the tests said, but that she went along with it to keep the doctors happy. They’d give her blood transfusions and she’d perk up a bit, and then a few days later seem to crash again. Eventually the doctors decided to stop the transfusions and not offer surgery, knowing that she’d likely die in the coming days. Shortly after this decision was made, I found her in the ward’s only side room. About a week later I went to visit Mable again, having heard from her son that she was still very much alive – much to their relief and disbelief. She was back on the ward, although she didn’t understand why (the nurse at the station told me it was because the room was needed for someone ‘more poorly’ than Mable, tilting her head to the side as she did so). Mable had been told she was ‘medically fit’ for discharge and the hospital and her family were looking into how to get her home. A few days later and Mable was back in the side room, following another huge bleed. She was much more lethargic and less smiley. She stayed there until she was discharged 2 days later to a care home, where she died later that week.
In this case, the ‘getting the timing right’ of death is proven to be tricky and the strategic use of the side room to contain death is challenged. Whilst Mable was moved in-and-out of the room, I witnessed other patients reside inside rooms for weeks, in some cases their families challenging ward staff about transferring them ‘back’ to the ward or home. If death isn’t timely, it poses questions about how the room is being used and if this is appropriate, optimal, or even just given the wider patient population within the hospital. In other cases, if no side room could be found on the patient’s usual ward – oncology, for example – they may be even be transferred to unrelated wards for the sole purpose of occupying a side room. Such strategic moves frequently involved the palliative care team who advocated end-of-life care for patients referred to them. Who gets to use a side room, where and when is therefore not a simple question or one with a straightforward answer or a single decision-maker.
As the recent series on hospitals on this website has shown, hospitals are places that transcend the medical realm, being more than medical infrastructure for acute care (Charbrol and Kehr 2020). If hospitals are an institution where core values and beliefs of a culture come to view (van der Geest and Finkler 2004), then the side rooms are revealing about English approaches to death and dying. Dying in side rooms is a way that staff try to ‘make the best of a [bad] situation’ in some respects – both in terms of what it provides to the dying patient, but also how it removes dying from the bays where and when possible. Nevertheless, they don’t comprehensively ‘solve’ the supposed problem that ‘hospitals are not preferred place to die’. It’s apparent that the use of these rooms for dying is not problem-free. It raises questions about how the rooms can and should be used and by whom, and it may allow for ‘better’ end-of-life care to be provided to a few over the many. By attending to the use of side rooms for dying, we can reflect on the micro-level practices that sustain and reproduce inequalities in healthcare (Subramani 2018). Moreover, we can consider how side rooms are made, used, and treated, and we can begin to indicate how other spaces in the hospital could also be reimagined as spaces where death is not only possible but permissible.
Erica Borgstrom is a lecturer in medical anthropology and end-of-life care at the Open University in the United Kingdom. Her specialist area in research and teaching is death and dying, with an emphasis on end-of-life care. She uses anthropological skills to disrupt the normative concepts in end-of-life care by foregrounding people’s everyday experiences and the structural and discursive elements that shape how care is provided. She is co-editor of Mortality. University profile: http://www.open.ac.uk/people/esb79. Twitter handle: @ericaborgstrom
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