Deadlines: doing times in (Dutch) hospice

Abstract

For a person to enter a Dutch hospice as resident, a clearly articulated deadline is needed: a life expectancy of three months or less. This paper argues that this institutional timeframe of a singular, clock-timed period of more or less linearly approaching death (the end of time), affords life to unfold in hospice as a relatively clockless multitude of temporal orderings enacted by staff and residents (the time of the end). Based on a period of ethnographic fieldwork in hospices and focusgroup interviews with hospice staff, I analyse how temporal orderings manifest and intersect in different ways. The quality of these intersections presence end-of-life normativities in ways that may be instructive when designing and reflecting on end-of-life care.

Keywords:

• Hospice
• end-of-life
• time multiple
• affordances
• normativities

Introduction

[A] death in hospice is allowed to occur ‘naturally,’ with nothing hastening the process or intervening to prevent death occurring when the ‘time comes.’ (Getter, 2013, p. 1304)

The hospice movement originated in the late 1960s under the auspices of Cicily Saunders in the UK and Elizabeth Kübler-Ross in the USA (Saunders, 2001; Seymour, 2012; Kübler-Ross, 1969; Hart, Sainsbury, & Short, 1998). It originated as a critique of heroic medicine’s absencing of death and dying. Instead, Saunders and Kübler-Ross both proposed the end of life required distinct and specialised care. The hospice movement that emerged from this stood at the cradle of a substantial practical as well as ideological turn in how to know, imagine, deal with and care for the end of life. Although it positioned itself as an alternative to biomedicine’s practices of absencing death and dying, the movement always sought to position itself within the world of biomedicine. This is evident from its role in the emergence of the paradigm of palliative care in biomedicine, as well as in hospice care’s scientific, technological and normative subsumptions under that paradigm.

In the course of the development of hospice care, ‘dying well’ has come to be associated with preventing or minimising (physical, social, psychological and spiritual) suffering, and of neither hastening nor postponing death – of time taking its course. Other values followed suite, such as openness, acceptance and awareness, truthtelling, peacefulness, completion, and autonomy (Candib, 2002; Clark, 2007; Hart et al., 1998; Proulx & Jacelon, 2004), as well as an aesthetics and ethics of beauty and goodness (Lawton, 1998; Pols, Pasveer, & Willems, 2017). Related to the development of specialised palliative medicine, different forms of institutionalisation, professionalisation and protocolisation have emerged over the past decades, the USA having perhaps developed most radically towards standardising, planning and regulating end-of-life care. In all their variety however, palliative and hospice care desire to contribute to providing for a ‘good death’. Critics have argued that the discourse about these ideals tends to assume they are universal (Candib, 2002; Masson, 2002; Zhou, 2013); that it renders rethorically invisible and practically undesirable how dying itself is also about dirt, pain, decay and loss of decorum (Lawton, 1998); how it is unavailable for ‘alternative deaths’: sudden deaths, suicides, deaths under bridges (Timmermans, 2005) or deaths in prison (Burles, Peternelj-Taylor, & Holtslander, 2016); and how it disciplines the dying person to contribute to a ‘good death’ (Hart et al., 1998), or a ‘timely death’ (Page & Komaromy, 2005).

An important part of hospice care concerns the admission of people: at what point towards a life’s end does a person become eligible for hospice care? At the onset of the hospice movement, cancer was the disease on which its infrastructures were (albeit largely implicitly) calibrated, and to a considerable extent this seems still to be the case (Chattoo & Atkin, 2009; Murray, Sheikh, & Lynn, 2008). Cancer’s relative prognosticability (compared to for example COPD, heart failure or ‘simply’ old age) has modelled the institutionalisation of hospice care, and this includes determining an end of time for people eligible for hospice care – but in ways that differ between countries. Whereas, for example, the UK provides hospice care at home, in hospices and other medical institutions, from the moment a person is classified as ‘palliative’ (National Health Service (NHS), n.d.), in the USA one is eligible for similarly organised hospice care with a prognosis of six months (National Hospice & Palliative Care Organization (NHPCO), n.d.). In the Netherlands, a person needs a declaration of terminality from a medical professional which states that the person is expected to die within three months (Ministerie van Volksgezondheid, Welzijn en Sport (MVWS), n.d.), and hospice is almost exclusively inpatient care. This declaration of terminality provides people quite literally with an institutional deadline: a point in time after which they are not expected to live or stay in hospice. The imaginary this deadline brings forth tends to be of hospice as a sad place where people passively wait until they move out of time.¹ Practice is different. In this article, I analyse the temporal orderings the deadline affords and requires.

There is a considerable body of work on time and dying in hospital (Glaser & Strauss, 1968; Kaufman, 2005; Zerubavel, 1979) and on how nurses and patients in various care institutions experience time at the end of life (see for example Ellingsen, Roxberg, Kristoffersen, Rosland, & Alvsvåg, 2013) . We know less about time at the end of life in other settings (homes, hospices, nursing homes), and with a few exceptions (DeNora, 2012; Frogatt, 1997; Kaufman, 2005), time itself tends to often be implicitly turned into the ‘deep structure of taken-for-granted, unquestioned assumptions’ (Adam, 1998, p. 60) against which life proceeds and is organised. In this article, I will unbracket time (Mol, 2002).

I employ Kehr’s (2016) notion of the time of the end as the temporal frame that opens up when biomedicine announces the end of time (such as in the end of a specific disease). Kehr reuses Agamben’s articulation: ‘[The time of the end] is the time that contracts itself and begins to finish … is the time that it takes for time to come to an end, to accomplish itself … the time which is left to us’ (Agamben, 2002, p. 5). Agamben argues that given the announcement of the end of time, the time of the end is enacted as operational and productive: things are happening and achieved and accomplished because they are framed by the promise² of time ending. Kehr more particularly analyses the tensions that come with having a disease like tuberculosis ‘that should no longer exist’ (Kehr, 2016). Notwithstanding the obvious differences between the promise of a disease being eradicated and a life ending, I proceed here from the contention that doing times in hospice is framed by a similar logic of a set end of time that opens up and conditions the time thus left to people as a time of the end.

In the next section, I will provide background information on the organisation of Dutch hospice care, and on my own ethnography in two Dutch hospices. I will subsequently analyse three modes of doing time in hospice, each of which performs the end of time as set by the deadline differently. The paper concludes by articulating the importance of reflexively dealing with the time of the end when designing (institutionalised) end-of-life care.

Dutch hospices

My analysis of doing times in hospice is situated in the practices of a small number of Dutch hospices, and it makes sense to explain here the organisation of Dutch hospice care, and the hospices of my fieldwork. According to the 2014 Report Palliative Care in View (Rapport Palliatieve Zorg in Beeld) (Middelburg-Hebly et al., 2014), in the Netherlands palliative care can be provided in hospitals, nursing homes, at home, and in ‘specialised palliative care institutions’. Within the latter category, the report distinguishes between high-care hospices (certified autonomous facilities which employ their own professional nursing staff), almost-at-home hospices (autonomous facilities without their own nursing staff), and hospice facilities in or near nursing homes. In the almost-at-home-hospices, the necessary availability as well as the mandate of professional nurses may vary from employing their own nurses in addition to volunteers, to working entirely with volunteers and hiring a professional nurse from a home care organisation on a part-time basis.

In 2012, there were 76 almost-at-home-hospices and 36 high-care hospices in the Netherlands (Middelburg-Hebly et al., 2014, p. 32). The institutional affiliations of the almost-at-home hospices vary between being part of larger care organisations to being totally independent; religiously affiliated to explicitly neutral; catering for everyone to catering for specific groups (related to religion, ethnicity or age); and working largely with volunteers to medical professionals setting tone and pace. Financially, a stay in hospice is usually reimbursed through a combination of a person’s health insurance and a personal contribution (if possible). Hospices may house between two and ten residents. In all hospices residents have a private room – no wards exist in Dutch hospices.

My fieldwork consisted of a period of participant observation in a specific Dutch hospice, called hospice A, that started in November 2016 and is a one-week period of participant observation in another hospice called hospice B; eight recorded focusgroup interviews with hospice staff (professionals and volunteers) of five Dutch hospices (including the fieldwork hospices); and countless informal conversations with residents, staff, family, doctors and others in these five hospices as well as several other hospices. I did not formally interview residents and families, and informal conversations were never tape-recorded, but transcribed into my fieldnotes when relevant and at the earliest availably opportunity (see Whitaker, 2010, p. 98). All hospices were more or less randomly chosen from the category of the almost-at-home hospices as I could not think of criteria that would make sense to prioritise within the category. Having been around in many such hospices now, I would conjecture that, in the context of this article’s topic, almost-at-home-hospices do time in situated and specific yet somehow also similarly structured ways. Given the argument developed in this paper, I would expect more structural differences with doing times in high-care hospices where institutional modes of the deadline (such as versions of advanced care plans) might more explicitly order hospice life.

Both hospices A and B are located in medium-sized cities in the Netherlands, and house six residents. Neither hospice is religiously affiliated. Hospice A, in the south of the country, is part of a large care organisation, whereas hospice B, located in the north of the country, operates independently. Both hospices would take in anyone as a resident provided they have their declaration of terminality, but in hospice A residents appear to be generally ageing while hospice B’s residents seems to be slightly more diverse in terms of age and ethnic background. Hospice A’s residents are cared for 24 h a day by two staff – one professional caretaker and one volunteer in 8 and 5-h shifts, respectively. During office hours, the hospice teamleader – a professional nurse – is also present. The hospice is housed in a stand-alone building with a large ground floor and a small upstairs. On the ground floor the residents’ rooms are placed along a corridor; each room comes with a high–low bed to which is attached a home automation device, some basic furniture including a comfortable chair, a refrigerator and a large TV, and a bathroom and a small sink. All rooms open to a shared garden. Residents may bring some of their own belongings, including small pets provided they are taken care of by the resident and/or their family. Inside the rooms, residents may do as they like (drink, smoke, play music) as long as they are safe and don’t bother other residents. On the ground floor too there is office space, a large living room annex kitchen and two patios for general use. Staff take care of anything residents require (care, food, company, etc.) as well as of the hospice-owned laundry and other small household chores.

Hospice B is a three-storey house. Its staff consists of volunteers only, 120 in total. They work in three 5-h shifts with four to six volunteers per six residents during daytime. At night and early mornings, a professional nurse hired from a home care organisation stays in the hospice; she also returns in the afternoons for a round of things that are the preserve of professional nurses. Kitchen/living room, garden and small office spaces are located on the ground floor. The ‘upstairs’ are two floors which each house three resident rooms. One of them is smaller and has its own bathroom, the other two are larger but share a bathroom. Each room comes with a high–low bed, a TV and some basic furniture, and here too residents may bring their own belongings, pets included, and do in their rooms as they like. The rooms are located around a small lounging area where there’s always at least one volunteer available to residents. Staff take care of everything residents need, including outings into town and small errands as wells as of the laundry of hospice and residents, and minor household chores.

In hospice A, fieldwork was and still is done through working as a volunteer, generally once every two weeks. In hospice B, I worked eight subsequent shifts over a period of a week. In both places, my work consists/consisted of participating to whatever came along during shifts: just sitting around, chatting with people, helping residents in and out of bed, making them meals or drinks, playing boardgames, going into town with someone, doing the dishes or the laundry, and whatever else came on my path. In both hospices, being there in case someone needed something was at least as important as doing things. I also was allowed to attend the handover sessions of staff in both hospices. In both hospices, residents are/were informed of the presence of a researcher through an information bulletin.

In five almost-at-home hospices, hospices A and B included, focusgroup participants (5–8 per focusgroup) were recruited through a call made by the hospice teamleaders; everyone who applied was invited to participate to the conversation. Participants were informed about the study’s objectives and signed a consent form. Interviews were loosely guided by the author’s topic list, but in no specific order, thus allowing the conversations to move in the direction of what participants felt relevant. Interviews lasted from one to over two hours and were all transcribed and coded. Quotes from interviews are referred with ‘FG’ plus the letter of the hospice; for example FG-A is a quote from a focusgroup held in hospice A. Informal conversations are marked with ‘IC’ plus the hospice letter. For the focusgroups, participants signed consent forms. Although all names of residents and staff are pseudonyms, readers familiar with one of the hospices might nevertheless be able to recognise some of the stories, events or persons.

Time of the end: multiple temporalities

When I arrive in hospice A in the early morning, staff sits around the table with a coffee. The night shift has just gone home, two volunteers and a nurse have replaced them, and the teamleader has also arrived. Clock time regulates their comings and goings according to their shifts. Staff time is clock time and it is repetitive: their comings and goings are scheduled in advance, their appearance in hospice is regular, and the same people move in and out of days and nights. Depending in part on how meticulously staff notes down and updates residents’ habits and preferences and daily whereabouts and on the duration of someone’s stay in hospice, residents encounter this repetitiveness in different ways. They may have to often repeat how they would like their coffee and staff may not always be on the know of what has happened to them a day or a week ago. For residents who stay longer than a few days, I notice that staff’s repetitive presence also produces familiariarity and a kind of mundaneness. Otherwise their timing does not seem to rule that of residents.

Instead, life proceeds almost completely along the rythms the residents are (to) develop and with which staff moves. In hospice A and B alike, some residents wake up early, some late; some call to be assisted with getting out of bed and washed, others take care of themselves and emerge from their rooms at some point or other; some ask us to prepare a breakfast while others care for themselves and still others do not desire to eat at all; some take the whole day to eat a small cup of apple compote, others move in and out of the kitchen all the time for bits and bites, while still others cook their own meals. Sometimes residents go into town to shop with a family member (hospice A) or a volunteer (hospice B); others are too tired or too ill or otherwise not getting out of bed at all. Staff is around to cater to anything that comes along, including household chores such as doing the dishes and the laundry

All Dutch hospices make a point of centring their residents, of organising life according to whatever suites them; any website or other promotional material, and any live encounter with hospice staff prioritises this norm. How they do this may differ: while in some hospices daily or weekly lunches or diners are scheduled, in many hospices the adagium of going with the residents’ wishes translates into days going by without anything being prescheduled, programmed or offered to residents. Given residents’ health and the relative speed with which hospice populations change, no day is the same, and anything may take up as long as needed. A two hour massage? A game of chess? Just being around in case some words must be uttered, tears be shed and wiped away (Moser, 2010)? It can all be done, at any time. And yet, specific temporalities emerge.

Mrs Diana calls us to be brought to the living room. She can’t move very well and her body hurts easily, so we get her out of bed slowly and carefully, and into a wheelchair with lots of soft small pillows. She directs us to place her at the large kitchen table, takes a sip of the apple juice she asked for, and dozes of immediately. She sleeps through most of the afternoon despite the lively conversations at the kitchen table, the comings and goings of visitors, the pharmacy, the doctor, the dog of a visitor barking at her chair. Mrs Diana’s rythm is discussed by staff of hospice A: is it deviating from a norm (awake during the day, asleep at night) to be kept by staff, or is this too what ‘doing as you like’ is about? Staff worry that residents sleeping into or during the day will make them sleepless at night. Upon my question why that would be problematic, they tell me those nights are often times when all kinds of anxieties and worries and fears emerge and that it would perhaps be good to protect people against it. Yet they don’t interfere with Mrs Diana’s habits, but when Mr Bert asks for sleep medication later in the afternoon, staff asks him whether he really thinks that is a good idea as they know it will make for a sleepless and worrisome night for him.

Like Mrs Diana and Mr Bert, most residents develop rythms and habits and ways of ordering their days and nights that somehow fit with hospice and hospice fit with them. This falling in place is a process of mutual moves and more or less unarticulated adaptations of staff, residents and spaces. A kind of timeless normality and normativity emerges. It is a normality in which residents’ sufferings and their nearing death become entangled in a larger web of ordinary things, in which the prospect emerges of the end of life temporarily receding into a background, and to make place for a seemingly timeless present in which whatever is done and undone is valuable and important. Eating, taking a sip, staying in bed all day, nodding off, playing a game, sitting around, being in pain, shedding tears or having fun – are matters that are somehow all at once remarkable, normalised and calibrated: this is what can and must still be done given the end of time. ‘We’re having fun here at the kitchen table’, says Mr Johannes. ‘It sometimes makes you forget why you’re here’ (IC-A).

The combination of the deadline with hospice’s queeste to ease the end of life brings forth a plight for residents to ‘design’ the time left to them. Not scheduling residents’ time comes with the assumption and the obligation that residents will develop a sense of what is (not) expected of them in the context of an institution that is new to them and that resembles neither home nor hospital. How often can they call a caretaker or make an appearance or ask for a coffee? When can their relatives come to visit them? And what to feel like when the answer to all those questions is: ‘just as you feel like’? For residents, the empty days come not only with the obligation to ‘feel like’ wanting something, but also with the need to reinvent and register, on a daily basis for most of them given their deteriorating bodies, what they are still capable of doing without calling in staff for assistance. ‘I was used to being catered for’, says Mrs Kate when she newly arrives from hospital to hospice A, ‘like that meals were just brought in before I could even think of wanting to eat, things were just done like it worked best in the hospital. Here I don’t know really what I’m supposed to ask for’ (IC-A).

The development of appropriate rythms as described is also part of this normativity: they emerge, albeit ambiguously, as part of hospice’s moral prerogative of taking care of residents’ comfort and peace while not interfering with their autonomy, and the moral expectation that residents make something of their lives in hospice. Whether or not to time residents’ days and nights, to yes or no pro-actively offer water to a resident who consistently fails to ask for it, is a matter of choosing between the bad of messing with their autonomy versus the bad of not having protected them from worrisome nights or unsolicited hydratation. No standard appears. Rather the fact that Mrs Diana is allowed to sleep during the day and Mr Bert is encouraged to stay awake, seems to be an effect of the calibration of staff’s individual preferences plus their anticipation of a resident’s more or less disturbing habits plus their knowledge of how a resident is doing healthwise – nearing the end often invites more coulance than being expected to live for much longer.

Yet for almost all residents alike, increasingly their needs tend to be channelled towards and instigated by their bodies. Interestingly however, this is not always about decay progressing with time. During my fieldwork, it occurred often that residents reversed the progressive path towards death that had brought them into hospice: they would gain weight, become increasingly mobile or otherwise lively. In hospice A, for example, Mr Johannes had spent the first week of his stay in bed with little but his music around him, but at a certain point he started to get out of bed and join us in the kitchen, he began to prepare or ask for large portions of food for himself, and within weeks had gained much weight and became a cheerful and energetic man. He began to make plans for little outings and often tried to lure a volunteer into accompanying him. Johannes so reversed time, temporarily, and he was not alone. Nurse Sally says:

This happens quite often. They come in all stressed out and anxious and sometimes not too well cared for, and the only thing they know is that they will die here. And then they discover that it is nice here, and cosy. And that they’re not just ‘dying’ here, but living the end of their life. And that we’re caring for them, we’ll do anything at any time for them. We make sure that they get their medication in time. And then they start to eat, and they cheer up, and they can let go, and often they actually get better than they were. (IC-A)

But one way or another, most residents die in hospice way before the deadline that brought them in. Lawton (1998) has shown that in the UK hospices tend to sequester decaying bodies from public life, and that in hospices, suffering and all too visible, audible, smelleable decay would be sequestered once more by putting residents in separate rooms, far from the others with whom they would normally share a ward. As Dutch hospices don’t come with wards, only with individual rooms and common spaces like kitchens and gardens, no further sequestering takes place when the end nears. As long a residents want, they may still use the hospice’s public spaces, and some people do so, despite their body’s visible and sometime smelleable decay. But commonly they stay in their rooms when death is nearing. Time then becomes controlled by their bodies and increasingly also by what (medical) staff find they may do to make life as easy as possible. This ongoing calibration of engagements with staff to one’s health, may be hard on residents. Hans, in hospice B, says: ‘I’m going down fast. I could do everything on my own when I came here, I could hang out with staff because I liked their company not because I needed them. But each day there is something more I need them for. I hate it’ (IC-B). Nevertheless, Hans – as many others during my fieldwork – learns to produce and use this autonomy to make hospice life cater to him, and learns to appreciate it. ‘It is like a 5 star hotel’, many residents say, no matter how close to death. ‘There’s no other place where you’re cared for so completely according to what you need’ (Hans, IC-B).

When the evening falls, in hospice A and B alike, most residents return to their rooms, although the continuous proximity of volunteers in hospice B does invite for more occasional interactions: during both my evening shifts, Mr Hans comes to sit with us and we have a coffee and talk about politics, the cat he keeps in his room, his brains that he will donate to the brainbank. In hospice A, Mr Bert calls repeatedly, and every time volunteer Marius goes to see him, and then returns only much later. ‘Gave him a massage’, he says, ‘he was so restless. When I left he was sound asleep’.

And so on a daily basis the deadline is hardly visible in hospice. Instead what is presenced is a practical and normative queeste to render residents’ days as accomplishing ‘whatever they like’, because of, and afforded by the end of time. And yet the temporalities produced actively absence the deadline and make unfold a multiplicity of temporalities: repetitive and rythmic times, time reversed, time moving forward and backward or coming to a halt, days going by unscheduled by clock time, and residents’ and staff to tinker with and decide about what can still be done and accomplished, and how to go about what cannot anymore. After and through having set an end to time in hospice, the deadline affords and encourages this time of the end to unfold in ways that seem to produce a seamless normality and a self-evident normativity.

Pasts, futures, presents: fresh herring in summer

While the enactments of time described so far are afforded by the time frame set by the deadline without bringing it into view, residents may engage in doing their pasts, presents and futures in ways that sometimes explicitly seem to intersect with the deadline.

In hospice A resides Mrs Maria. When she first came, she was still mobile and loved to sit at the kitchen table to talk to anybody about her long and apparently fulfilled life and her wonderful and happily married daughter, thus continuously presencing her past to herself and to us, and the things she has been able to achieve and do. By taking our time to do this, she makes emerge her life as accomplished, or so she says: ‘I’ve had a good life you see. I can look back and it was good’ (IC-A). In hospice B Mrs Rita resides, a cheerful woman, slightly confused and hard to understand when she speaks due to tumours in the brain. She has ended all contacts with her family, wishes to remain in touch with one woman friends only. ‘I live now. That’s it’, she says to me while digging pictures from her handbag. Contrary to Mrs Maria, Mrs Rita is actively absencing most of her past while at the same time presencing only the now in which, without shedding a tear, she articulates her approaching death. As she sits brushing her hair, of which she’s got very little left and what is still there is horribly twisted, she calls me: can I please cut away the knots? I hesitate because I can see that her own brushing has pulled out much of her hair – there’s a bucket full next to her chair, and it makes me feel sad to see it. But she’s unswerving. ‘I am dying, that’s it. Makes no sense to be sentimental about that. It is what it is. This [shows me a picture of her from before she fell ill, a head full of dark curls] is what it was. And this is what it is now. That’s it. My body will go to science and they don’t need the hair there’, she says and we have a good laugh (IC-B).

Quite often residents also engage into planning events in the near future. When I enter hospice A a few minutes before 3 PM to go with Mr Johannes to a store that sells drones and other kinds of stuff he likes to tinker with, he’s sitting at the kitchen table, coat and hat on, a series of plastic bags to bring along. ‘Been waiting here since 1. Just in case you’d be early’, he tells me. When I arrive on another day, Mrs Jenny, 92 years old, calls me to her room, all businesslike: she would have three friends over at 2.30 that afternoon, so could I now lower her bed and turn off the TV so she could rest and be fit when they would arrive? And would I wake her up at about 1 PM? This, of course, I do. She wishes to be dressed in a nice blouse (she was proud of her chique wardrobe), and be sat in the big chair in her room. There she is, all ready – at 1.30. She then calls her friends on the phone: would they indeed be right on time? And instructs me: I am to prepare three portions of icecream with a bit of eggnog which I am then to bring into the room as soon as her friends would arrive. I am also to offer them coffee or tea. ‘It may be the last time you know’, she says to me, ‘so things must be tiptop in order’ (IC-A).

Presencing and the absencing of a past as well as the exaggerations of timing the near future, tend to be read as performances of a present in which something exceptional is taking place, exceptional because it articulates and accomplishes those important things can still be done given and despite time ending. An intersection with the end of time is being articulated without questioning it: because my time is ending, this has to be done.

But residents also engage in futuring way beyond their prognostised end of life. Ellingsen et al. (2013) have pointed at how people’s awareness of life’s end articulates the taken for grantedness of present times and futures and alters people’s experiences of and dealings with futures. When they know they approach their announced death, they ‘enter a world with no future’ (p. 168). Studies indicate that dying people find it hard when visitors make longer term future plans for them (Lawton, 2000), or talk about their own futures (Ellingsen et al., 2013): ‘My friends sat talking about, losing weight, buying clothes, holidays and what clothes to wear, typical female chat that I used to take part in. I went outside, under the excuse of something, because I could not plan a shit, I know nothing about the future. I have no future. I have only the Now’ (Ellingsen et al., 2013, p. 169). But this ‘now’ seems not always to be without future.

Take Mr Bert, residing in hospice A, very ill with cancer of the pancreas, but still up and about a lot. He tends to be grumpy and not always liked, but we get along well. Because or despite his issues with eating (he wants to vomit, can’t chew, is not hungry, loves noodles but then they’re too spicy, his fake teeth bother him) we chat over the joys of a good freshly prepared herring. He says ‘my mouth waters from the idea’, and although it is December, I propose to buy him a herring on the market and he eagerly accepts the proposal. So off I go into the cold. Alas, he does not like the herring at all, and after one tiny bite he says: ‘Sorry dear, but it’s off. But you know what? Next summer when the fresh herrings arrive, we’ll go to the market together and get ourselves a nice salty smooth herring!’ Around him, I hear staff but also his wife shuffle uneasily. When I ask staff about this later on, they say: ‘We just don’t get it. What’s he doing? Is he denying things? Does he not know that he’s quite likely not going to be around anymore by summer?’ (FG-A). But Mr Bert knows very well that he’s dying and that he won’t live until summer. ‘I’m a dead man, I know’ (IC-A).

Mr Bert’s futuring seems to fit uneasily with the end-of-time version of his deadline. And yet he does it, fully aware. And he is not alone. In hospice B, Mrs. Kate is looking forward to buying summer shoes later in the year, and in some of the other hospices I visited, marriages of residents had been celebrated. Whether unruly because of their challenge of the deadline or the weight of what is being futured given the futurer is dying, such futurings are always marked by staff and family alike: disturbing, confusing, unsettling, impressive, special. Whether they are taken to cohere with the time of the end as afforded by the deadline, differs. In hospice A, Mr Bert’s summer-herring plans or his efforts to have a new set of teeth made, or Mr Johannes’ plans made in winter for sunglasses in summer, were questioned by some staff because they seemed to challenge what would and what would not belong: ‘I find these things problematic in hospice. It makes me think: do they not realise where they are, that they’re dying?’ (IC-A).

So what are such futurings about and what do they reveal? I suggest that what residents are doing when futuring is not about misunderstanding or ignoring the end of their time. Rather, it is about accomplishing something right here and right now. It exaggerates the present, it takes Mr Bert away from the disappointment of a tasteless herring, it celebrates a love forever after, it realises something pleasant now that there is still time. The futuring itself is the activity. Such futurings are forms of situated action rather than plans that need linear extrapolations into future clock time (Suchman, 1987) or that perform some kind of linear trajectorism (Felt, 2016). But by ‘disturbing’ the linear and progressive end of time so explicitly, residents also articulate intersections of these temporal modes. Staff’s response moves in (and out) the institutional end of time as a possible mode of ordering and it indicates that it would sit uneasily with the time of the end as it is afforded by the otherwise backgrounded deadline. Allowing this end of time to also order life in hospice, would require new calibrations of what can still be done.

End of time: overstaying one’s welcome

Such foregroundings of the end of time may occur when hospices decide to work with planning residents’ lives such as when working with advanced care plans (Soest-Poortvliet et al., n.d.), but also when the deadline approaches without a resident unambiguously nearing the end of their life. It seems that two simultaneous developments affect the end of time in hospice. On the one hand the average stay in hospice appears to decrease, on the other hand, all hospices I worked with also report an increase of ‘long-stays’ – people who seriously outlive the indicated deadline. Partly this may be because, as noted before, people’s condition improves as a result of the care they are provided with. But health care policy also plays a role. ‘These days we find that people should stay at home as long as possible, and most residential care facilities have been closed down. And so care-space has simply been deleted for people who are not terminally ill but who also can’t live at home regardless of the amount of formal and informal home-care. And so these people sometimes get a declaration of terminality with which they enter hospice – without really being terminal’ (IC-A). And in addition, over 50% of people eligible for palliative care have afflictions that are harder to prognosticise than cancer (Middelburg-Hebly et al., 2014), while many forms of cancer too tend to become chronic rather than acute (Pols, 2013; Stewart & Wild, 2014); thus the end of time becomes harder to prognosticise.

At the start of my fieldwork, hospice A was in the middle of deliberating its policies regarding the length of their residents’ stay. The direct reason was Mr Piet who had been in hospice A for almost a full year, his deadline apparently having been extended several times. According to staff he had been ‘quite a character’ i.e. not the easy-going person who fitted seamlessly with and thus also contributed to the maintainance of the specific moral world of hospice A (Cohen, 1998). Piet made himself visible and audible in ways that many found hard to cope with. He would be nasty to people, annex public spaces to himself alone, play loud music, and become increasingly demanding. The process in which Mr Piet’s behaviour became troublesome was so marked because it made emerge in hospice A the realisation that the affordances of the deadline also required the deadline to be more or less met. Since, hospice A has formulated more explicit rules on how public space may be used, it has also, hesitatingly, set in motion a more articulated policy to delimit the duration of residents’ stay in hospice: ‘We discuss the issue with them, and their family. It is hard. We tell them that we are happy to see that they’re doing reasonably well, but also that if they continue to be so well, we may have to start looking for a transfer. Back home. Or to a nursing home’ (FG-A). Hospice B too had always worked with the explicit policy to never send people away. But ‘last year we’ve had four longstay’s at the same time. Which completely blocked the system. You know, we’re there to cater for the terminally ill, but like this people who would perhaps need hospice more urgently could never enter’ (IC-B). And so hospice B too has settled for a similar procedure to hospice A.

Enacting the deadline as the end of time comes with different effects. In all focusgroup interviews, stories were told of residents having died very shortly after they had been transferred away from hospice, thus showing the ambiguities of prognostisation and the arbitrariness of the clock time deadline. Being on the way out may impact upon what caregivers find appropriate to still do: ‘I don’t do massages with longstays anymore, they’re getting used to something they won’t have afterwards, and also, somehow, I feel they’re less eligible to my time’ (IC-A). Moving people out may result in what Kaufman (2005) and Worpole (2010) have called a ‘revolving door trajectory’: people having to be admitted again after some time away from hospice, with a brand new deadline but in much worse condition. ‘How bad do you want to have it? She was discharged, went back home, her parents had moved in with her again, intensive homecare was arranged, and within a week she died’ (IC-A). And for Mr Kees in hospice A, the announcement that his time in hospice was about to end, brought forth a sad conversation in which he would tell us time and again that because of his children living on the other side of the globe, and the high care he received in hospice, it had become his home and he had no place else to go to. We would often quietly wish he would die before the deadline would strike. Which he did. For Mr Johannes, who had adorned the door of his room with a large sign that said ‘HOME’, things were less fortunate: after more than six months in hospice A, his decline was considered to be so slow that he had to move over to a nursing home where he was utterly unhappy and died soon after this transfer. ‘Should we have let him stay?’, staff would ask. And the answer would remain ambiguous and reveal how conductive staff feels hospice had been in how long Johannes had lived and how much slower his decline than prognosticised upon his entrance: ‘If he had stayed, he would not have died so soon’ (IC-A).

Yet for residents who de facto overstay their welcome life would also become more ambiguous. Mr Johannes would get bored with hospice. ‘There’s just nothing going on here’, he said. ‘You can’t plan anything with the others because people can say they want to come over for a game or a lunch or whatever, but then they feel too bad or just not like it anymore or they’ve got visitors’ (IC-A). ‘I have nowhere else to go’, says Mr Hans, ‘but I see everything that happens here, I know it when people die, and they’re dying all the time’ (IC-B).

And so as it approaches, the deadline’s end of time becomes more articulately present alongside (rather than at the background of) the time of the end, and new calibrations must be made. It is apparently hard to fit this institutionally planned end of time with what hospice care wants to provide for. In first instance, it tends to forward things hospices tended to absence: stress, sadness, new farewells, transfers, death in a place less appropriate, the need for family to step in as caregivers all over again. As the specifics of doing time in hospice are specific, situated and malleable, such new calibrations may develop, but they might be in need of reflexive engagements with what different timelines afford and forbid, and what happens at their intersections.

Concluding remarks

As Kehr (2016) argued, we tend to conceptualise biomedicine’s declarations of the end of a disease or an epidemic exclusively as the end of time, and all that happens ‘in between’ as being conductive to achieving that end. We thus delete from view the possibility of this in between time as being something different – a time of the end that is operational and productive, in which things are being accomplished and achieved because they are framed by the end of time. It opens up a time that matters in other terms than the end of time that conditions it. Hospice life with a deadline affords the time of the end as a multipliclity of temporal orderings that centres hospice residents’ whereabouts, desires and needs, and it affords life to take on qualities that tend to exceed or decentre the end of time for them. It makes a here and now. The specific affordances are further calibrated by the concrete ideals and practices and habits developed in individual hospices. And yet the deadline is also part of institutionalised end-of-life care, and even its apparent (albeit ambiguous) foregrounding in a resident’s futuring shows that its presence may fit uneasily with the specifics of time of the end.

I would contend that being reflexive and alert about how times done in hospice reveal as well as enact hospice’s ‘choices’ and normativities of calibrating a good end of life, may be instructive to hospice staff when reflecting on what to do, provide for, abstain from in hospice, on a daily basis. For what the end of time affords and controls, is not set in stone: the end of time, the time of the end and how they come to define each other, are things made, not given. And as incentives to plan, schedule, and protocolise the end of life intersect with the time of the end as done in hospice, such engagements would become urgent and necessary as they would, and do, engender new calibrations and normativities when doing the time of the end within the framework of the end of time.

Notes on contributor

Bernike Pasveer is an assistant professor at Maastricht University, The Netherlands. Her research focuses on unbracketing imaginaries of the natural and the unmediated related to the human body and healthcare. She is currently engaged in a study on ‘dying well’ and, with Ingunn Moser and Oddgeir Synnes, in a book project on ‘home’ at the end of life. Her earlier work focused on medical imaging, childbirth, reproductive technologies and talented bodies in sport.

Disclosure statement

No potential conflict of interest was reported by the author.

Acknowledgments

I wish to thank the residents and staff of hospices A and B for so generously welcoming me to participate to hospice life, and the interviewees of all focusgroups for sharing their thoughts with me. I’m very grateful to the anonymous referees, Ingunn Moser, Peter Peters, Jeannette Pols, Sally Wyatt, Linnea Semmerling and Claudia Egher for their constructive feedback to an earlier draft of this article.