Data collection.

The fieldwork was based on 130 hours of observations where informal, handwritten interviews with nurses, development nurse, therapists and doctors were part of the observational fieldwork. In addition, three formal (i.e. recorded) semi-structured interviews were conducted with physiotherapist, a course participant (intensive care nurse) and a spouse of a patient, and a focus group interview with two doctors, two nurses, two occupational therapists, and one physiotherapist using open-ended questions raised during the observations from the field work. The focus group interview was chosen as method in order to create a common venue from where the different professional groups would be able to elaborate and discuss subjects in regard of the uncertainties of decision-making at NISU. The focus group interview lasted about 1.5 hours and included three main topics of discussion: 1) express how you understand your particular role or function as a professional as part of the NISU team, 2) tell about a patient treatment course that you found particular challenging in respect to uncertainty in decision-making and the reason why, 3) discuss what type of ‘tools’ or systems you as professionals use in order to asses and decide the next step in a patient’s course of treatment and future “rehabilitation potential”.

The fieldwork was carried out in the entire hospital ward of NISU, where a total of ten patients was admitted in the research period. However, in interviews with the professionals and observations, focus was in particular given to the treatment programme of three senior patients (Lars, Bjarne and Helen), for which reason the analysis primarily are based on the activity around these patients. The patients were chosen because they arrived at the outset of the research period, so the progress of treatment could be observed from the beginning.

After three months of fieldwork themes regarding clinical actions, the impact of time, uncertainty and decision-making were observed in the data. To enhance trustworthiness and credibility, the processes of data collection and generation were discussed and clarified during regular research team meetings, where PI analyses were validated by co-investigators. Furthermore, the study endeavored data triangulation (involved time, space, and persons) and investigator triangulation (involved multiple researchers: a specialised nurse, three qualitative researchers with two experienced in the field of neurorehabilitation and one familiar with anthropological theories). Moreover, theory triangulation that involved several theoretical schemes are used in the interpretation of the phenomenon [19].

Theoretical framework.

The analysis of the study presented in the discussion section draws on theoretical concepts of time and theories of uncertainties found in contemporary anthropology [26–28] and social geography [29]. As will become apparent throughout the paper, the logics and social processes that take place during neurorehabilitation treatment at NISU cannot be understood solely from a “here and now perspective,” as more temporalities play out simultaneously in the clinical field. The agency of the present often takes the future, e.g. dreams, hopes, or anxiety for a certain future, as its starting point [26, 30–32].

With his concept anticipatory action [29], social geographer Ben Anderson argues that liberal democracies are repeatedly acting in advance of the future in order to prevent or prepare for societal threats or catastrophes. Recent examples of such anticipatory action can be seen in relation to the war on terrorism, trans-species epidemics, and climate change, where “bombs are dropped, birds are tracked, and carbon is traded on the basis of what has not and may never happen: the future” [29: 777]. Although one could say that ‘the catastrophe’ (the brain injury) has already happened in our case, the concept of anticipatory action is still interesting for the present analysis. Firstly, if you look through the eyes of the individual NISU-patient, another potential catastrophe might lurk ahead if the health care professionals decide that nothing more can be done to help you to recover and they therefore cease rehabilitation efforts with consequences as a future life with little or no brain function, a constant need for care and supervision along with the risk of early death. Secondly, the NISU programme can be viewed as a special hands-on form of anticipatory action as the professionals’ actions are fundamentally based on certain anticipations about how the future will turn out if they choose not to intervene immediately (e.g. before “the window of time” closes for the patient).

Hence, the function of the theoretical framework is to recognise the categorizations of findings, as well as to open a discussion about the impact (hidden or unnoticed) concepts of time and uncertainties have in clinical practice of early neurorehabilitation, in what we have termed logic of clinical re-enactment, logic of future negotiation and logic of paradox.

Analysis.

To analyse the empirical data, the transcribed interviews and observation field notes were stored, organized, and analysed by use of NVivo 11 Qualitative data analysis software (QRS International Pty Ltd, Doncaster, Australia). The empirical data was read and re-read a number of times to conduct open coding to identify ‘social patterns’ that went across the reflections and statements in the interviews, the focus group interview, and the observations from the hospital ward [18, 19]. The data were coded into preliminary analytical categories and subcategories to create an understanding of the place, human and nonhuman actors and activities that shaped the social setting of NISU. Through this process, the research group found that the themes of time, uncertainties and underlying logics impact clinical practice and organisation of NISU and were relevant to explore further.

Hereafter we will delve into the empirical data in order to present the environmental social setting of NISU, then the practical work of interventions carried out in the ICU, and finally the clinical assessment practice. The empirical data will be analysed and discussed using theoretical perspectives of time and uncertainties. In the discussion section, we discuss the findings and unfold the underlying logics which became visible in the empirical data.

A walk through the hospital corridor.

In patient room 5, a 58-year-old man is lying in a hospital bed with his eyes closed. The bed is placed in the centre of the room encircled by various technical equipment attached to a ceiling mounted pendent of two flexible, metallic arms. On a screen to the left of the patient, changing graphs of the man's vital parameters light up. Several photographs of the man and his family, taken before the accident in the garden three weeks ago, hang on a white board with magnets placed in between two large windows to the outside. At a computer desk outside, a nurse looks through the window on a regular basis to check patient. She avoids disturbing him while he rests after his rehabilitation session earlier this morning. Walking through the hospital corridor, seven similar single patient rooms appear, each with white walls, circadian lighting, family photos, and a window to the corridor. A computer desk is placed beneath each window. In the heart of the unit is the nurses’ station, which at certain times of the day acts as an assembly point for staff briefings where the patients’ recovery statuses are discussed. Here a timetable with the planned activities for each patient’s day is written on a white board, and a large monitor screen linked to all the patients echoes with a constant piping-noise. At this time, people in blue, green, or white uniforms are occupied with different tasks around the unit. A specialist in anaesthesia and an intensive care nurse deliberate the possible reasons for one patient's increasing infection score as part of the daily ward round. In the patient room opposite, a nurse injects liquid medicine though a plastic tube into an elderly male patient. Meanwhile, a physiotherapist and another nurse walk past with a female patient, who lies on a portable bath bed covered in white towels. They disappear inside a bathroom facility with a special technical system that makes it possible to connect a mechanical ventilator directly to the bathroom wall.

The ethnographic description above portrays a typical morning in the hospital ward of NISU and reveals a place where quietude and business actions both prevail. People in different roles and life circumstances interact in a particular social environment that has specially been constructed to help people with sABI and intensive care needs to recover. With the hospital unit’s single patient rooms, special lightning, physical space to move and position the patients during training sessions, and space for rest afterwards, in addition to tailored bathroom and outdoor facilities, NISU provides what is termed an “enriched environment” [33, 34]. As a physiotherapist explains in the focus group interview, the scene of NISU offers professionals opportunities “to act and do something”:

In these particular surroundings, we can try countless different things while we secure the patients’ blood pressure. We can try to get the patients to stand up, in which case we have the staff [medical] a bit closer by, and if it does not work, we just bring the patient back down again. The possibilities are offered here [at NISU] so that we can easily trythings out and there is goodwill for us to do so as well.

Being a designed space of opportunities is, in the mind of the health professionals, exactly what makes NISU special in the context of a Danish hospital, as the intensive programme attempts to create an environment with matching rehabilitation structures normally available only at non-intensive, highly specialised neuro hospitals, such as HNC. With its equivalent therapeutic setup, NISU, from the perspectives of the professionals creates the best possible conditions for intensive patients with severe brain injury to “wake up” and “find their way back,” so that they in time will have a pleasant future life without constant dependence on the hospital and nursing system.

A step into a patient’s first week of admission.

Day 1. At 1 pm, a team of porters enter NISU pushing a stretcher with a 58-year-old male patient on it. A nurse shows them to patient room 5. The male patient is named Lars. The professionals move the patient from the stretcher to the prepared hospital bed, where he is disconnected from the portable respirator and connected to the respirator in the room. The doctor arrives. She shines a light into both of the patient’s eyes, checks the dressing around his injured head, and asks him to squeeze her hand. She scores the patient 3 on the Glasgow Coma Scale, which is the lowest score possible, indicating a severe brain injury.

Day 2. At the morning staff briefing a nurse says, “Lars was only scored 3 yesterday but he is making grimaces now”. An hour later, the nurse has given the patient his medicine, washed him with a wet tissue, brushed his teeth, cleaned his tracheal tube, and changed his ostomy, then the physiotherapist arrives in patient room 5. The therapist looks at the patient and says in a loud, clear voice, “Good day, Lars. Good day, Mr. My name is Kirsten. I am a physiotherapist”. The patient's eyes are closed. The therapist opens his eyelids with her fingers and shines a light into his eyes. She then takes his hand in hers and says, “Give my hand a squeeze, Lars. Yes, thank you. Do it again so I am sure. Good, Lars!” An occupational therapist enters the room. The physiotherapist tells her that Lars is able to squeeze her hand. “Great!” the colleague replies. The therapists together move the patient's arms and legs sideways in turns. Meanwhile they are repeatedly watching his face. The physiotherapist says, “We would like to see your eyes. Try to open your eyes, Lars”. His eyes remain closed. She places her hands underneath the patient’s lumbar area and gives him a few gentle pushes back and forth while she looks at his face. “Trousers on! You are going to sit up”. As the two therapists start to put a pair of trousers on the patient, he opens his eyes, “How nice, Lars! Can you look at me? Can you find my eyes?” asks the physiotherapist. The patient's eyes flicker around in the room. The therapists raise the patient with a lift, weigh him in the air, and move him to a wheelchair. She tries to place the toothbrush in his right hand, but it falls to the floor. Instead, the therapist places the patient's arm on top of her own arm, so he brushes his teeth through her movements. “I do not think he has pain, but I think he can feel it. It looks like it is a little annoying to him what you are doing,” says the physiotherapist observing him. The other answers, “Yes, like it is a little unusual”. She walks over to a drawer and finds the patient's pair of glasses, places them on his face, and says, “Maybe this will make a difference”. The phone rings in the corridor. The nurse tells the patient’s spouse that she is welcome to come for a visit after lunch. “Also, it would be great if you could bring some of Lars’ clothes and maybe a cologne that he usually uses and recognises. We use these things as part of the training, you see. And if you have some photographs of him and the family, please bring them too,” adds the nurse.

Day 5. The chief physician enters patient room 5 where a physiotherapist passes on her observations, “Lars opens his eyes at large stimuli, for example at sounds but there is still no eye contact. However, there is more eye opening today than over the weekend but they close again soon after stimuli”. The doctor takes the patient's hand in his and says in a loud voice, “Can you squeeze my hand, Lars?” There is a small, yet clear movement of the patient's hand. The doctor repeats his request, after which he nods to the therapist and leaves the room. The therapist rolls some duvets together and lays them close around the patient's body and finally places a support pad under his knee, so the patient sits halfway raised on a firm treatment table. The therapist fetches a dish of water and says, “We need to get you washed, Lars”. She moves the patient's right hand into the water. She then gives him a facecloth in his right hand and guides his movements so that he washes his own face. The patient moves his head towards the facecloth. “Well done, Lars,” the therapist responds enthusiastically. In the same manner the patient’s upper body is washed, after which the therapist places a roll-on deodorant in the right hand of the patient. “Try to feel what's happening now”, she says and applies deodorant under both his arm bits. She places the deodorant on top of the patient's chest and from there she puts the lid back on. “Now it is time for this one. It is something else you know. What is it? It's your own face cream,” she says while taking the lid off a jar of face cream. It gives a click. “You knit your brows, Lars. Yes, can you hear that?” She smears the face cream on his face. After an hour, they leave the patient.

Day 7. In the meeting room a neurologist, physiotherapist, occupational therapist, and two nurses greet the wife and son of the patient Lars. The neurologist goes through the record of the brain injury. “It is still a relatively short time ago the damage happened. There are already small signs that it is slowly improving”, she explains. She emphasises that she cannot comment on how far Lars will be able to come or what he eventually will be able to achieve. “You have to prepare yourself for a very long process,” she concludes. The wife is aware of this reality, but she hopes deeply that they will be able to collect all the missing parts of her husband into a whole bouquet in the end. “For now, we will have to wait and see what happens,” answers the neurologist.

Four main points became visible from the description above which help to identify and better comprehend the underlying logics and dynamic processes that take place during the rehabilitation treatment programme at NISU.

The clinical interdisciplinary collaboration.

The description portrays the clinical interdisciplinary collaboration, distribution of roles, and everyday interactions that take place at NISU among the professionals. An example of these social dynamics is seen in the work of respiratory management (days 1, 2). As described, from the moment a new patient arrives at NISU, the nurses ensure that the respirator is connected correctly (day 1) and afterwards ensure that the patient can breathe seamlessly from the respirator by keeping the tracheal tube clean (day 2) and monitoring the patient’s breathing. When the therapist arrives to train the patient’s ability to swallow briefly and independently by stimulating the mouth during an oral hygiene session (day 2), the nurse has prepared the patient for the rehabilitation with a cleaned tracheal tube and the prescribed medication. Likewise, interdisciplinary work is apparent when the professionals share subjective observations and reflections (days 2, 5). As each professional group sees the patients in different situations, states, and time intervals, the sharing of experiences or intuitions helps the clinical team to make a collective rehabilitation strategy. While the nurses observe and treat the patient day and night, the therapists are with the patient during one-hour training sessions and the specialist may only see the patient once a day during ward rounds (see Fig 2).

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Fig 2. Fixed interventions at NISU.

https://doi.org/10.1371/journal.pone.0238506.g002

The interdisciplinary setup, however, was also observed to cause challenges among the professional groups in relation to decision-making and uncertainties regarding distribution of tasks and responsibilities between the group of therapists and nurses. Especially the group of intensive-care nurses who expressed difficulties in finding their professional position in the structural design, and in the focus group interview, describe themselves as having an “octopus-function” and “to be juggling between their specialty in intensive care and rehabilitation”. A course participant, who normally works as an intensive-care nurse at a regular ICU, has a similar experience during her training program at NISU. In an interview, she tells how she feels, that part of her autonomy and decision-making are reduced as part of the interdisciplinary setup at NISU:

Something special about NISU is the fact that the therapist is very much involved. We also have therapists with us [in the ICU] but not to the same degree; They come in briefly, get the patient to stand up, and then they leave again. You can feel that they are a strong presence in the day shift here. This is both good and bad. Actually, I think it might be really, really good patient-wise. Nursing-wise, however, it is something I have to get used to–that I have to put aside a great deal of responsibility. I am used to taking care of the patient. I decide. I control things. I can feel that as a nurse, one's role is much smaller [at NISU] compared to what I am used to—much smaller. The occupational therapists are planning the decannulation here. I'm used to doing that—me and the doctor. And I think it's very strange to come here and then suddenly, it's not me doing it. Then they [the therapists] do it for me. So, nursing-wise, it's actually something I've had a really hard time getting used to. I fully understand that some of the senior nurses, who have been here before the unit became NISU, feel the same way as me.

Tests and measurement of progress.

Secondly, the description reveals how tests and progress measurements are central elements in the clinical work at NISU. As shown, the testing of stimulus-response (e.g. “squeeze my hand”) begins immediately after the arrival of the patient (day 1) and other tests are performed during the therapeutic work when attempts to get a reaction from the patient or recognition of eye contact are made by the use of loud voices, light, and bodily movements (days 2, 5). The tests are used to assess whether or not the patient’s functional abilities are improving over time during the rehabilitation programme.

The notions of activity and strategic use of embodied memory.

Thirdly, the description provides important insights into a certain rationality shared among the NISU-professionals about what actions and strategies are needed in order to give people with sABI the best chances of recovery (day 5). The professionals believe that only by means of activity will they potentially be able “to reach” the patient’s former sense of self. This line of thinking distinguishes NISU from many other Danish ICUs where common practice is to put patients to sleep medically with the intention to help “restless patients” stay calm. In a conversation during the fieldwork, a development nurse explains the different rationalities in this way:

Those hospitals act according to the notion; “as long as the patients lie still and asleep we are able to take good care of them”. The method of NISU is to identify and test different stimuli, which can help awake the patient, for example through familiar smells, sounds, bodily movements or experiences.

In contrast to passive approaches, it is the activation of the patients’ senses that are believed to stimulate and trigger lost bodily and cognitive memory in patients at NISU. It is the activation of familiar bodily movements, the feeling of water on one’s skin during a therapeutic bath session or fresh air on one’s skin at visit to the outdoor terrace, the well-known sound of a personal face cream lid opening, or the scent of one’s individual cologne that are seen as the key to possible recovery.

Anchored in uncertainty.

The fourth perspective that is brought to light through the description concerns the presence of uncertainty that is always entrenched in the work of early neurorehabilitation. The unsynchronised treatment approaches bear witness to this issue; hence, clinical interventions of early neurorehabilitation are today based on professional try-outs, ongoing tests, deliberation, and assessments. As shown above, when an intensive patient is admitted to NISU, no clear answers about the future prospects of the individual can be provided to the patient’s relatives, hence, the outcome can go in either direction at this moment in time. According to the professional team, each brain injury is unique in its characteristics and the timeframe for a brain to recover varies from case to case. Therefore, they must wait and see how the patient reacts to the rehabilitation over time (day 7). However, in a reality anchored in such profound uncertainty and with ‘the early window of brain plasticity’ coming to a close, some important questions arise. How do the professionals assess whether a patient is recovering, might potentially “wake up” if given more time, or will stay forever in the current stage as a stranger to the person he or she used to be before the injury happened?

A future becomes visible.

During an afternoon shift, a young female nurse estimates that the 58-year patient Lars has had no immediate recovery since he arrived at NISU a week earlier. Nevertheless, 47 days later, Lars is ready to move to the Early Clinic, HNC. Similarly to Lars, around 80 percent of NISU patients are transferred to the Early Clinic [8], meaning that they are circulatory and respiratory stable. This reduced group of patients will continue to train their cognitive and functional abilities in a programme of highly specialised rehabilitation. The patients who are professionally assessed to have no further rehabilitation potential are in contrast reassigned to local municipal rehabilitation programmes, care homes, or hospices, where limited or no rehabilitation is provided, meaning that the chances of long-term recovery are drastically reduced.

Given these fateful choices for the patients in question, a crucial part of the professionals’ job at NISU is to search thoroughly for further rehabilitation potential in each patient and to assess whether or not the individual has progressed due to the early interventions provided or shows spontaneous remission over time (see Fig 3).

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Fig 3. The scoring procedure at NISU.

https://doi.org/10.1371/journal.pone.0238506.g003

In order to perform this difficult task, the professionals were found to use a range of tests and scoring systems [35–40]. The observation below of a so-called “patient in-score” is an example of this practice:

An occupational therapist, physiotherapist and intensive care nurse are gathered around a computer with a programme open on the screen. In front of them are two large binders with papers with titles such as understanding, oral stimulation, mimics, head control, tonus adjustment, deliberate motor function, and 'to stand up'. The professional team starts to give the patient a score between one and five for the various categories, where one is the lowest and five is the highest for functional ability. “We need to take point of departure in what we see right now,” says the occupational therapist. Each step comes with a written explanation to guide the assessment. The physiotherapist explains that some categories do not always fit the patient, therefore, they sometimes have to deliberate where on the score rank, they think the patient fits best. Occasionally they open the patient's online journal to check if a comment previously written in the journal can help them to give the patient the correct score. Most times, however, they simply look directly at the patient through the window to assess, “Head control? Yes, he has that.” The number 3 is written in the score box. The physiotherapist explains that they always score the patients every 4 weeks during their hospitalisation, or more frequently if large changes suddenly seem to happen. As a result of this, the computer programme will be able to make a graph displaying the patient's development over time.

In the description of The assessment of potential three important sub-themes became visible.

Scoring tools—A type of navigation system.

The patient in-score was conducted 35 hours after the arrival of a male patient. Similar score and testing sessions are carried out throughout the entire period of admission. The interdisciplinary team uses the results from the scores and observations to formulate shared strategies and goals to work towards whenever interacting with the individual patient. From conversations with the head nurse and a therapist, it becomes clear how the score tools provide a type of navigation system that helps the professionals to reason and act, as the scores create more objective parameters or measurements of the patients’ progress in recovery:

We score our patients when they arrive, during their admission, and before they are passed on [in the system]. We do this in order to find out whether they are advancing. The scores are also vital in terms of having a more objective parameter that can be used to say to the municipality: ‘It actually works what we do here’, but also to see if the patients do not accept the rehabilitation. That is what a score can show, development for the better or the worse (nurse, focus group interview).

We are quick to set a short-term goal for the patient and preferably one at an activity level. In this way, we can rapidly measure if any progress happens. We set our goals based on certain criteria, which have to be measurable, and based on an activity so we can repeat it over, and over, and over, and over, and over again. So even if the patient has a bad day, we are able to try the activity once again the next day (occupational therapist, focus group interview).

The essential tools for decision making.

Although the professionals are aware that the score systems are not completely objective, since subjective estimations occasionally are difficult to avoid as illustrated in the patient in-score above, the score systems are still viewed as essential and necessary factors in the search for rehabilitation potential and decision-making by the professional team. Hence, as a nurse expresses the matter, “It is the only way we can see if there are any changes [in the patient], as we are so many people involved”. With the tests and scores, the professionals are able to follow the patient’s development over time and use the information to help them make the final (at times ethically problematic) decision about where in the hospital or nursing system the patient ought to be referred to after NISU.

The right call.

In the focus group interview, the experience of making the final call was reflected upon and discussed among the professionals:

It is not a decision we make from one day to the next. We go through a lot of processes and many other actions to determine if there is the slightest chance that the patient can develop on one small thing: to follow a small request, become more stable, get less pain, or something else. I really do think we are good at giving them the chance, and letting it take the time it takes. I do not think I have experienced that we have sent a patient away where we have thought afterwards: "Well, was that in fact the right decision?” (physiotherapist).

A specialist replies as follows to the statement of the physiotherapist:

In contrast to what you have said about it being rather easy [to make the final decision] when we have not seen any progress, I personally think it is very difficult to write the patients out of the unit and sometimes make some of the really tough decisions. […] I can at times feel a bit: “Was that the right choice?” I sometimes get the feeling that we are talking each other towards a certain decision. […] As if it first has been mentioned "now we cannot do anymore," then it may spread a bit to “now we will not do anymore”. […] The decision is almost taken in advance and we just need to confirm that what we do is right.

In response and in accordance with her therapist colleague, an occupational therapist recalls her experience of making the final call like this in the focus group interview:

I have never experienced that the decision has been rushed or felt like … I have always had my documentation to look back on. We have evaluated many times on these matters, made a relatively simple goal from the start, and if there has been some kind of progress, then we would have discovered it.

The dialogue above illustrates how the work of making the final assessment calls is a practice that is given great priority and focus. The professionals are completely aware of the profound responsibility they carry for making the right call, as they know the very different realities and chances of life the patient will face as a result of their conclusion at NISU. On the one hand, they are intent on giving each patient the optimal opportunity to show recovery. However, on the other hand, a patient with no sign of any recovery over time takes up one of the few specialised hospital beds for another patient with severe brain injury in need of a chance of regaining life. The therapist group seems to share an understanding that they can only judge and act based on what they see and based on the many ongoing examinations and tests they and their colleagues perform in the reality of uncertainty at NISU. It is, however, always the anaesthesiologists who hold the overall responsibly and the final say for procedures, which might explain why the specialist finds the final decision-making especially difficult and morally challenging.