The Weariness of Hoping: Synchronizing Affect While Awaiting Organ Transplantation for Cystic Fibrosis in Germany

ABSTRACT We describe the challenges in synchronizing affect during the lengthy lead-up to organ transplantation. Our analysis draws on ethnographic fieldwork in Eastern Germany among medical staff caring for patients with cystic fibrosis, a progressive, genetic illness. Patient and practitioners must together endure an uncertain wait for a donor organ, while simultaneously living and working toward living as well as possible. The organizing affective principle in this setting is hoping, which is a socio-material practice that must be continuously and interactively re-produced. Too little or too much hoping must be managed by adjusting affective intensities. A failure to strike this balance can lead to what we designate as the weariness of hoping.

moment for the intervention and ongoing emotional management of all parties, while medical staff, patients, and families are obliged to wait for a suitable organ (Brügger et al. 2014).
We place our empirical focus on a team caring medically for young people with cystic fibrosis. A rare genetic condition, CF has a prevalence of about 10,000 in today's German population of 83 million. CF affects many organ systems of the body, leading to early morbidity and mortality (Boucher 2008). While there is no cure, the progression of CF can be slowed by therapy, with a median age at death of 35 years and a median life expectancy for those currently living projected to be 52.4 years in Germany (German Cystic Fibrosis Registry 2021). Current treatment including inhalation and vigorous chest physiotherapy require up to two hours every day, and comprises up to seven different medications, which requires ongoing support from a comprehensive care team in highly specialized CF centers (Sawicki et al. 2009). The unpredictable course of the condition produces additional morbidity, manifesting in high levels of anxiety and depression among people with CF and their families, exceeding by several fold that of community samples (Kimball et al. 2021).
Although many organs are affected in CF, the hallmark of morbidity and mortality is the lung's inability to transport the mucus from the airways. This results in frequent respiratory infections, with subsequent scarring of the lung tissue and declining respiratory capacity (Boucher 2008). Resultant pulmonary complications include pneumothorax (collapse of the lung), massive hemoptysis (bleeding in the lungs), and respiratory failure. Double lung-transplantation for end-stage disease has become a good clinical option since the turn of the century (Mingora and Flume 2021). In Germany, between 20 and 40 lung transplantations are performed annually in CF patients (German Cystic Fibrosis Registry 2021).
For conditions as serious as CF, the if, when, and for whom of transplantation is a topic that is highly debated and fraught with dilemmas (Nightingale and Shafiq 2015). Most CF physicians, in line with suggestions of their professional organizations, refer their patients to transplant evaluations if lung function rapidly declines, or falls below 30% of the normal range (Bartley et al. 2020;Ramos et al. 2019). For adults aged over 30 years with end-stage lung disease, the 10-year survival posttransplantation is about 50% (Yeung et al. 2020). Those under 30 can expect a post-transplantsurvival around five years (Sethi et al. 2021), while children derive no distinct survival benefit from transplant as compared with non-transplant treatment as usual (Liou et al. 2007). This is most likely because seriously ill children are faced with a more complex cluster of life-threatening symptoms.
Qualitative studies show that CF patients' expectations of their personal benefits from lung transplantation are neither reducible to absolute figures nor stable, but rather vary depending on how likely the individual is deemed to need a transplantation. In an interview study with people with CF in the UK, Lowton (2003) showed that those who were less likely to require a transplantation thought of the procedure as "the last-ditch attempt" or "reaching the bottom of the slippery slope." On the other hand, respondents already involved in the process described the prospect of a transplant as "a new lease of life." Anthropologist Maynard (2006) argued that following a policy of early transplantation would involve placing the needs of everyday life and remaining acutely "able-bodied" above the objective of long-term survival. In his ethnography of people with CF in the United States, Maynard referred to double-lung transplantation as a practice that is "controlling death, (while) compromising life." Choosing transplantation before the extreme decline of one's bodily health is an active stance that brings the future into the present, while necessarily side-lining the fact that the future outcome remains uncertain. Waiting too long for transplant, however, is an excursion into an indeterminate and especially uncertain journey that brings a risk of sudden decline and death. This uncertainty while awaiting a transplantation can produce multiple affective responses among patients and likewise the care team, chief among them anxiety and depression, hope, and weariness (Brügger et al. 2014).
The anthropologist Cheryl Mattingly argued that, in the setting of terminally ill children, families mobilize hope to fight against despair. "To not give up" when despair would seem realistic (2010:5 and 171), families must "cultivate hope as a stance toward reality" (2010:4), which depends upon the "creation of a borderland community between clinicians, patients, and families" (2010:216). Her contention is that when partnerships between patient, families, and clinicians break down, it is difficult for either party to once again create and sustain hope. Here, we extend this line of inquiry to ask how patients and care team co-produce, adjust and maintain "good hoping," that is to say hope at a "just right level" of intensity, that works for all stakeholders.

Affective arrangements in clinical practice
We adhere to a perspective on affective and emotional management that does not hold these states to be individual achievements, but rather as dynamic and negotiated results (Neckel 2009). The requisite negotiations "take place" within an affective arrangement (Slaby et al. 2019), meaning that affective negotiations are situated in and sustained by an infrastructure of knowledge production, care, and professional organization, all of which must be properly in place if a synthesis is to occur (Larkin 2013). Affects are understood as forces and intensities that have a positive (activating) or negative (inactivating) effect, thereby moving and changing bodies and practices (Masumi 2002:1). We follow a framework proposed by the French philosopher Giles Deleuze where understanding of affects as intensities means that affects should be regarded as qualities or differences that cannot be divided. For example, a body of water at 100°C cannot be converted into two bodies at 50°C. In contrast, differences in extent such as length or volume can be divided into parts. Since intensities like affects cannot be divided, a change in their intensity alters the quality of the difference. Affects as forces are qualities that are situated between a realized aspiration or idea, and the accomplishment of an aspiration or an act (Povinelli 2011:10). As such, affects are significant forces for driving practices, because they effect movement and change. Nonetheless, affects are difficult to grasp, as their ineffable nature makes them evade and slip away from simple understanding (Brown and Tucker 2010). Emotions are sometimes seen as the culturally and socially mediated articulation of affective experience and as an instrument to translate these experiences into the domains of language and cognition (Abu-Lughod and Lutz 1990). Affects and emotions are thus not understood as originating in discrete bodies, but rather as emerging from practices, which are hence distributed or broadcast as actors, infrastructures, and ways of knowing. In the words of anthropologist Monique Scheer, affects are a form of practice "emerging from bodily dispositions conditioned by a social context, which always has cultural and historical specificity. Emotion-as-practice involves the self as body and mind, language, material artifacts, the environment, and other people" (Scheer 2012:193). The view that affects are distributed and circulated has been described as an affective economy, wherein affects become stronger through circulation and distribution (Ahmed 2004).
In the present context of people with CF awaiting transplantation surgery, we focus on two affective states: hoping (Miyazaki 2004) and its counterpart, weariness (Ehrenberg 2009). A brief semantic excursion is here warranted to clarify our choice of this pairing. The usual translation of hope into German language is Hoffnung, which means having trust in the future, i.e., confidence, and optimism toward what the future will bring. One can be "full of hope" (Hoffnungsvoll), which implies that the hopeful stance toward the future is a quality that can be depleted or emptied. Conversely, one can "draw hope" (Hoffnung schöpfen), hinting at its potential to be replenished. In discussing the dark side of hoping, participants in our field used the word Erschöpfung, which translates as exhaustion, disillusionment, tiredness, fatigue, or weariness. More specifically, Erschöpfung refers to a quality that has been emptied, but might yet be regenerated, such as a reduced state of energy after mental or physical exertion, or depletion of a resource like water drawn from a well that takes time to refill. In the title of his book published in 2009, Alain Ehrenberg used the term "weariness of the self," which was translated as "Das erschöpfte Selbst." While we are mindful of the limits of translation, we find this to be the best term to convey our understanding of Erschöpfung among CF patients and their care-team.

"Hope management" in the clinical borderlands at the end of life
As the anthropologist Sharon Kaufman (2010Kaufman ( , 2006 has pointed out, modern clinical practice presents the patient and medical staff with challenges to imagine certain futures, and to choose among medical options in a decision to move toward one among several possible futures. In her hospital ethnography " . . . And a time to die," Kaufman (2006) portrays the near impossibility of making rational decisions about death in contemporary end-of-life situations. She describes the trend toward repeated hospital admissions as a "heroic postponement of death." The cycle functions like a "revolving door," which has seemingly become inseparable from waiting for death. Care for terminally ill CF-patients occupies a territory resembling that described by Kaufman -a borderland between palliative care and transplant surgery, where the optimal balance between palliative care and aggressive treatments is difficult to find, being infused by uncertainty and hopes about the future (Nightingale and Shafiq 2015).
In the clinical borderlands at the end of life, where biomedical innovations can enable life-extension even if certain organs fail, hope is inspired by "medical quests" (DelVecchio Good 2001). Taking dialysis and kidney transplant as examples, Kaufman et al. (2004) argue that these interventions have been routinized in a way that overshadows choice and results in a moral imperative to treat. This is because such medical measures are coupled with a discourse of hope that includes not only patients but also family members, which makes it difficult to choose the possibility of stopping treatment. In her poignantly titled ethnography "The Paradox of Hope," Mattingly (2010) further includes clinical staff in this dynamic of hoping, and argues that a trusting relationship between patient, family, and hospital staff creates and nurtures hope for a life to come that would be of a quality worth living, even under trying social circumstances and when no cure is in sight. Retaining hope, and "hope management" (Franklin 1997:158), are central to these practices. Making use of these manifold anticipatory actions and their potential for optimization is considered the moral responsibility of individuals to secure their best possible futures (Adams et al. 2009;Clarke et al. 2003). Importantly, however, Povinelli (2011:3) urges us to attend to the ethics of this contemporary liberal political philosophical mode of anticipation where "present action is interpreted from the point of view of a reflexive future horizon and its cognate discourses." By this logic, one attends to an uncertain future at the expense of present well-being.
We now inquire into how the act of hoping can organize the multiple and often conflicting affects that characterize the period of waiting for an organ transplantation. Rather than starting from the perspective of actors in the clinical setting, we here opt for placing our focus on social practices (Schatzki et al. 2001). Broadly speaking, practices are understood as a set of sayings, actions, and manners of being that are organized by a pool of understanding and by a set of rules and teleo-affective structures (Schatzki et al. 2001). Practice theory interprets technologies of the body, knowing, and affects as being entangled material-semiotic processes (Haraway 1991).
This article's construct of hoping as a socio-material practice resonates with the social-cultural anthropologist Arjun Appadurai's famous "capacity to aspire" (Appadurai 2004). From his work on the urban poor in India, Appadurai developed an argument that lack of resources and capabilities is one consideration, but the key to "development" or change lies in the collective ability to aspire toward a shared future. It is not simply the combination of several individual traits with a synchronization of cognitive decisions and affects. Rather, being hopeful is a collective capacity and achievement -i.e., a cultural practice in the anthropological sense -that moves bodies and drives forward processes.

The German health care system and organ transplantation in Germany
The German health-care system is characterized by a statutory health insurance based on the principle of social solidarity. Nonprofit sickness funds and regional associations of physicians are the central components of the German system. In international terms, the German health care system has a generous benefit package, one of the highest levels of capacity, as well as relatively low costsharing. Health insurers will cover most of the costs of treatments and examinations (Busse and Blümel 2014).
Germany is part of the transnational Eurotransplant network that matches donors and recipients. The German transplantation context is marked by a critical shortage of organs. At time of writing, 8500 Germans are waiting for a donor organ, 291 of whom are waiting for a lung transplantation. In Germany, a person must actively opt into organ donation after death, unlike, for example in Austria or Spain, where one must actively opt out. The lung transplantation rate in Germany is 3.4 per one million inhabitants, with neighboring Austria leading the statistics with 13.7, and Spain (7.8) and the USA (7.7) in fourth and fifth place worldwide (IRODaT 2022).

Researching cystic fibrosis care
The present work draws on material collected over a one-and-a half-year period during Stefan's (the first author) pediatrics residency between 2016 and 2018. This was part of a long-term ethnographic study starting in 2006 at a university medical center in Eastern Germany specialized in CF care. Of the 25 young people with CF who were followed for this study, 14 (four of whom female) had been confronted over the years with the question of transplantation. Nine (three female) had undergone a successful double lung transplant. Three men had failed to survive the transplant procedure: two never made it out of the intensive care unit due to fatal complications, and one died due to organ rejection. One woman died while on the waiting list for a lung-transplant due to a procedure related complication. Only one young man declined to undergo the transplant procedure.
Ethnographers working in a hospital setting face multiple difficulties, some arising from their partial exclusion from the tacit and affective dimension of clinical work (Long et al. 2008). Usually, an ethnographer can observe, but unless trained and granted specific permission, cannot truly "participate" in the clinical context (Wind 2008). Thus, the ethnographer may observe, but not know how it feels to practice even a mundane procedure. The manifold affective components of such clinical procedures are difficult to research through observation and discourses, but can be accessed through self-exploration (van der Geest et al. 2012). The present work stands out in this regard, as we took advantage of the first author's transition to becoming a member of the clinical team. To capture the experiential changes of the clinician/author as a result of clinical work and doing fieldwork, the study includes elements of autoethnography (Ellis 2004). Participant and autoethnographic observations were recorded as field notes and later digitalized (Emmerson et al. 1995;Jorgensen 1989). Hoping and weariness stood out as useful emic terms that served as analytical constructs through the course of the ethnographic research process.
The study was approved by the internal review board of the university hospital. After receiving oral and written information about the research project, patients were invited to provide informed consent to participate. To protect the identities of participants, we use pseudonyms throughout the research study.
In the excerpts from fieldnotes, the ethnographic "I" refers to the first author. A "we" in the meta text refers to all three authors.

Struggling to adjust and maintain hoping
As Maynard (2006) put it, early transplantation was recommended in hope of enabling a more active life, even if compromising present chances of life. Patients and staff were aware of this scenario, and everyone knew one or several patients dear to them who had struggled to survive and died postsurgery. They also were aware that, even after transplantation, patients would be living a compromised life due to their constant threat of transplant rejection despite life-long immunosuppression. Given the unpredictable course of CF, a need for transplantation could arise very suddenly. In the first case we present, a sudden clinical deterioration of a patient had left hardly any time for the care team to adjust and maintain affective intensities. According to Mattingly, such situations where a happy ending is moving quickly out of sight, are termed a "paradoxical border practice" (2010:5), where "border" indicates that the practice is spanning communities of care across clinical and familial worlds. Her question of how hope should be cultivated in such border zones resonates in our analysis. The first case we present is an example of how the care team struggled to adjust and maintain their own hope, while faced with a patient whose hope may have been excessive. Our second case illustrates an attempt by the team to up-regulate hoping of a patient.
The latest on the waiting list for transplantation is Jack, a young man in his mid-twenties, who was transferred to the Intensive Care Unit (ICU) from our ward last night while I was on duty. Jack, despite having only 30 percent residual respiratory capacity and requiring additional oxygen through a high flow mask, was a cheerful, energetic person, always positive and joking. He used to chase us down the hall driving in his electric wheelchair, until his condition started to worsen, and he became attached to oxygen lines, his wheelchair now parked in the sterilization room. Last evening, his health deteriorated precipitously, and he couldn't function without highflow oxygen. After subsequently trying to rule out pulmonary embolism, pneumothorax, and infection the clinical team called the ICU to admit him around midnight, where he was intubated. (Fieldnotes 2016) Intubation is an intervention that one does not make or accept lightly. In this case, the decision followed only after all local therapies and assessments on the CF ward had been exhausted. Once a person with CF is intubated, he or she cannot cough, and lung infection thus becomes nearly impossible to control. The ethics of transplanting intubated patients is controversial because of their impaired survival (Gottlieb et al. 2012).
The next day, the attending physician of the ICU said to Stefan, "We still do not know what caused his deterioration, but Jack is so strong, and such a fighter -the power and energy that have gotten him so far in life are working against him now that he is on the respirator." Jack was fighting so much that his lungs had started bleeding -often a fatal complication, as bacteria thrive on blood and worsen the infection. Stefan visited him at the end of the day, together with the other physicians. Jack sat up in his bed, greeting the group, telling the ICU staff, "there they are, this is my team from the CF ward!." Over the course of the day, the ICU staff had put him on extracorporeal membrane oxygenation, meaning that his blood was continually fed through a machine performing the gas exchange outside of his body. He could thereby talk and walk, which made him admissible to the organ transplant evaluations. Despite these interventions, Jack was only able to walk two meters, and together with his other assessments, this placed him in the highest urgency category. On the way back to the ward, Stefan wrote in his fieldnotes "Jack's designation of us as his care team is difficult for us to resist. It creates in me an obligation to remain hopeful and fighting. Jack is producing so much hoping and positive emotions; he could draw me into exhaustion." At this moment, while Jack's demand and need of care intensified, Stefan felt that hope was moving out of reach. The night Jack was admitted to the ICU, intubated, and later put on extracorporeal membrane oxygenation, his prospects were becoming ever more dismal with each passing hour (Gottlieb et al. 2012). On that night Stefan went home with the feeling that he could not abandon Jack, but was obliged to leave as the next day was already approaching, and he would have to sleep, rise, and be there for the other patients on the ward. What is the relationship between hoping and medical care in this situation? One could argue that they are two separate things: Hoping is an affect, but medical care is a set of treatments. One might also argue that they are almost the same thing, because all the medical treatment, since it cannot be curative, has the main purpose of engendering hope in the patient and team. Here, however, it seems that the patient imparts an "intensity" to care practices by hoping almost recklessly -with little regard for its effects on himself and others.
While many including Stefan did find encouragement from Jack's positive energy over several weeks, the matter had proceeded to the point where the care work turned into weariness; some of the care team simply could not keep up with Jack's emotional power, his unwavering optimism, and forward-looking energy. His ability to engender hoping as a collective practice on the ward began to exceed this ward's capacity to deliver good care. The entire team visited him in the ICU. This occasioned many thoughts and conversations on the CF ward gravitating around Jack's situation. When Jack was successfully transplanted after one week on the ICU, this was hailed by the care team and celebrated as a collective victory. The team also reflected that the intensity of this week was not unproblematic, for all in-patients required attention in varying degrees. While an individual can never have too much hope -at least from a clinical perspective -a community of carers has limited emotional resources.
In understanding hoping as a practice, Jack's intensity of hoping correspondingly intensified the medical care practices and changed their quality. This intensity of medical care cannot simply be allocated to provide necessary and adequate care to the other patients. It was not possible for the team to derive energy from Jack and transfer it to another patient. Rather, such intensity draws in and binds our limited material and affective resources. When treatment becomes hoping, the intensity of the practices can quickly impede the wards' ability to deliver good care to everyone else. The intensity of the practices could be overwhelming, and one cannot simply withdraw from the obligation; there is no such thing as 70% versus 50% hoping, nor is there hoping in the afternoon versus simply medical care in the morning. Should collective caring turn into hoping, it is all or nothing. If we agree with Mol (2008:75) that what constitutes "good", "worse", or "better" care does not precede practice but forms part of it, is negotiated in the situation, or tinkered with as contingencies arise, then Jack's input into this tinkering must be matched in equal measure. His hoping creates in the staff an obligation to participate with an equal intensity. Certainly, Jack must not be left to deal with the situation alone, but neither can the team withdraw, which would collapse the intensity of the practice.
During normal clinical care, a patient may be transferred to a different department for specific treatment, an aspect that in German is called Versorgung, or service. Continuing to check on a transferred patient adds an element of care that in German is called Sorge, or concern. While it might be perceived as untrusting toward colleagues, the opposite holds in Jack's case. To relinquish an abiding concern for Jack, in effect abandoning him to the ICU experts, would have seemed like letting him slip away, a kind of betrayal. Forcefully resisting the intensity of engagement in order to protect oneself or other patients brings the collapse of hoping. Care then becomes "service treatment," in the sense that correct treatment is unimpeded, but this decision doesn't allow the practice to unfold in a like manner, as if everyone were drawn into the same degree of intensity that Jack's manner of being (that is to say, ill) affords or demands. Hoping is a quality of care that goes beyond health service delivery, being an intensity of practices that can only be sustained for some finite time in the realworld settings of clinical care. Hoping also has enormous power, but at the risk of exceeding capacities. Crucially, intensities are not scalable, and one cannot sustain hoping (care as Sorge or concern) at an extreme level of intensity. The care team then "falls back" into medical care (care as Versorgung or service) at the normal level of intensity appropriate for a hopeful man named Jack; he has managed to persevere this far by virtue of the forcefulness of his hoping, but he cannot sustain this hoping alone, without engaging the concern of his team. Left alone, he might resign himself, even to the extent of not surviving until the transplantation.

Hoping at the right level
Hoping in our first case presentation had a paradoxical effect. For the patient, hoping was all or nothing for him to continue fighting and persevere, yet the intensity of his fighting proved to be too much for his physical state. For the team, the patients' hoping intensified the care of this one patient. Staff found themselves unable to withdraw from this intensity, lest the quality of care would collapse. Over time, the increasing intensity reached a level exceeding some of the staff's limited resources, given the needs of other patients on the ward. The difficulty for the care team to give this patient "just the right hope" is further illustrated in the following converse situation, where the patient was unable to withdraw from the expectations of the team.
Sebastian is a pale young man in his twenties who had been staying at the ward for nearly two months while awaiting a transplant. Because he too, was listed at high urgency, he needed to undergo transplant re-assessment procedures every two weeks. Each assessment inclusive of preparations took two full days, encompassing blood tests, a maximum walking distance test, and the minimum oxygen saturation while breathing ambient air.
During this week's transplant assessment, the attending physician was sitting next to Sebastian and asking him to try to breathe for another two minutes without supplemental oxygen, which to Sebastian must have felt like suffocation. Nonetheless, Sebastian's score was not rising enough to bring him to the top of the lung allocation list, meaning that his condition never became sufficiently urgent according to criteria of the transplant assessment procedure. During the weekly team meeting, nurse Nina told us, "I found all those pills in Sebastian's bedside drawer. He hasn't taken them for several days." Members of the care team were worried to learn this. A patient who doesn't take their meds before a transplant is considered unfit for the marathon of testing and rehabilitation after transplantation. Not taking pills, including immunosuppressants would lead to rejection, and the precious organ should therefore go to someone else. Johanna, one of the ward's two psychologists, was asked to talk to him, and find out "whether he was still willing to do all that is required". She came back, saying, "Sebastian still wants the transplantation, but he is so tired (erschöpft) from all we expect him to do, including taking all those pills. However, Sebastian didn't want to disappoint us, so he hid the medications". (Fieldnotes, 2017) People with CF are usually very good at self-administering their medication. They do so at home most of the year, for most of their life. In hospital, nurses prepare the medication, but they trust most patients to take oral medication without supervision. In Sebastian's case, this trust was disappointed by Sebastian's very attempt to not disappoint the care team, by attempting to show that he was still able to meet their expectations. Advanced CF does not entail difficulty in swallowing. Yet people with CF sometimes had to take a handful of pills with each meal. Indeed, Sebastian told us that the sheer number of pills had made swallowing difficult.
Hoping by the patient is seen as predicting successful therapy post transplantation. In this view, Sebastian's hoping in the present is considered as adherence to the contract that one should receive an organ and care well for it in the future. This preemption -an anticipation where the future post transplantation is brought into the present and treated as is it were actualized -is a matter of establishing a bond of hoping between the team, the patients, and adherence to the transplant protocol. Sebastian did receive a transplant, however his example also illustrates the difficulty with the governance of waiting lists and associated assessments. While they assess behavior, i.e., adherence in the present and hoping as a marker for future adherence, the very laborious and exhausting testing and assessment procedures in the manner of "collateral" tend to wear down the waiting patient, thus depleting their reserve of what gives meaning to the entire process: hoping.
There are relatively objective clinical tests of whether one is eligible for a transplant. However, behaviorally based tests that lead to rational judgments for eligibility are more problematic. As economists say, the best predictor of future behavior is past behavior. Yet a clinical team needs to know about more than simply adherence. Certainly, there are psychological assessments to be conducted beforehand, but a sense of whether someone is really "fully in it" throughout the process is also required. In the first case presentation, some team members were overwhelmed by the intensity, causing a collapse of Sorge, while Jack was ready to proceed. In the second case, it is Sebastian who remains able to "do what he needs to," while being unable to carry the intensity further. Here, hoping is the intensity of pre-transplant practices that signify that post-transplant life would be worthwhile and worth the present effort. If the candidate cannot bear the present intensity, but still desires the transplant, they are arguably unfit for the procedure. This is a different circumstance from our initial description of hoping to an excessive extent. Here, more hoping is exactly what is required. If the candidate cannot coproduce hoping with the team, they are not eligible, whereas in the first case, hoping was simply impossible to sustain by the team. We suggest that hoping as an intensity of practices of care is perceived by the team as a measure of commitment and fitness for the procedure only when it is at "just the right level." Too little, and one is deemed unfit; too much, and one exceeds the clinical team's capacities. In the next section, we will elaborate how the aggregate of team and patients are constantly negotiating this intensity of practices that we designate as hoping.

Synchronizing affective intensities
At the end of the corridor on my way across the CF ward, I get hold of Johanna. I have known her since I started participant observation on the ward 10 years previously. At that time, she had already been counseling patients on the CF ward for more than a decade, making her one of the longest-serving members of the care team. The hospital ethics committee had requested that I undergo supervision by Johanna or her colleagues, so the expected emotional burden of the research wouldn't have a negative impact on me or the study. Until now it had always been the psychologists who had approached me first, sensing that I needed to talk. This arose mainly in informal situations, such as finding me sitting on a bench in the corridor, sitting down beside me, asking, "What is troubling you?" This time, however, it was I who was asking. Could Johanna have a talk with me and the other junior residents with whom I had been working on the ward for the last two months? A supervision? I tell her how, just the day before, we two junior residents had stayed alongside Jack, feeling unable to go home until he was received at the ICU, although the night shift had long since begun, and an attending physician was present as well. Johanna agreed: "That would be good, especially for you junior doctors, as working with some patients has a high pull that can draw people completely in. But couldn't we schedule this for next week? I am feeling so exhausted (erschöpft) myself." (Fieldnotes, 2016) As members of the team increasingly recognized a certain weariness, some turned to the psychologist, whose main duty it is to counsel patients. That Johanna recognized a need to talk, but was herself feeling exhausted, is one of the most vivid scenes that remain engraved in Stefan's memory from this research period. Johanna and her colleague had described their work with the patients as mostly "support work." The patients' anxieties were real, one could not "analyze them away," so the job was supportive, "to help them go on." This included again and again contributing to their hoping. For the team -as a whole, not only individual members -it had by now become difficult to sustain continuously the intensity of hoping.
In the following months, a series of supervision exercises was proposed by one of the senior attending physicians and subsequently organized by an external supervisor. As part of this exercise, the team was split into small groups and asked to reenact a scenario that they had found especially emotionally draining. Stefan's group included nurse Nina and psychologist Johanna. The group chose to deal with a situation they all considered as a failure. Luca, a 20-year-old patient on the transplant list was "not doing more than was absolutely necessary" and was "driving everybody crazy." At each admission, he would be treated for two or three weeks, and then return home for a few weeks. These cycles never managed to stabilize Luca's health for long. Stefan once asked him if this shuttling between ward and home was "enough" for him, to which he replied that he was "satisfied." Some team members suggested that Luca was not fulfilling his part of the therapeutic contract with respect to adhering to his therapy at home and questioned whether he would make it through a transplantation.
During the enactment, our group play-acted the daily medical visit. I played the role of Luca, while Johanna played the nurse: "Did you do your inhalation, Luca?," Johanna asked me, as the team stood around me and looked down at me in my bed. "I will do it later," I responded, looking up from my bed. "But you have to do it, or else you will not get better," Johanna exclaimed. (Fieldnotes, 2018) Afterwards, the group reflected on the grotesque element of our role-play. The team knew that Luca's indifference to his home therapy, and likewise our suggestion that he would get better by doing it, were both wrong-minded. The team were cognizant that Luca also knew this, and likewise knew that they knew. Luca would never be free of the need to do therapeutic inhalations, so he was doing what most people with CF do: titrate the minimum necessary therapeutic investment with the maximum social support. It has long been recognized in the medical literature that people with chronic illnesses like CF will only conduct 50% of their therapy, and nonetheless "they do astonishingly well," as one attending physician told Stefan. During the exercise, managing the failure to establish hoping took the form of changing roles in order to re-integrate a frustration that the care team's hoping was being met with indifference by a certain patient. As Stefan understood the matter, the team's goal was not to make Luca more assiduous in his therapy, but to learn to manage our own disappointment and frustrations. Luca's nonparticipation in hoping was breaching the logic of successful care in practice, leaving the staff in crisis. The solution here seemed to be to managing this by adjusting our own affective intensity.
Understanding hoping as an intensity of collective care, i.e., an indivisible quality of practices, this third case of Luca is another instance of adjusting intensity in the team: With Jack, our intensity overshot and could not be sustained. With Sebastian, the hoping wilted to the brink of collapse. With Luca, the staff wanted to engineer hoping, i.e., set a certain intensity that they felt was right and appropriate. But Luca couldn't be bothered to play along. This time, though, the staff responded. They found a way to engage with lesser intensity by accepting that Luca would not commit himself completely to maximize hoping from a clinical perspective. The strategy worked for the team in Luca's case. In the first two examples, staff failed to strike a balance, first by being overwhelmed, and second by trying to change the patient's attitude. Here, the focus is on the staff demonstrating that hoping in and of itself is not sufficient for the patient, but calls for adjustment of the right level of intensity in socio-medical care.
Jack, Sebastian, and Luca were all transplanted over the weeks and months following the events recounted herein. In each case, learning that they had finally made it to the top of the organ waiting list, the call to transfer them to the operating theater, the successful conclusion of the operation and eventual release from the ICU, and finally witnessing one of them walk unaided through the ward, were all shared and celebrated by the team members and patients who knew them, which served to stabilize the affective relation among team and patients.

The weariness of hoping
We present a final case of the only patient during our research project who declined to enter the transplantation procedure. Jonas, a man in his early 20s, said "I have thought about a lung transplantation. But I decided that I do not want it. For me, it (the transplant assessment and the wait for an organ) would be too exhausting (erschöpfend)." As we spoke in spring 2017, we were sitting at the table in his room, gazing out the window onto the central aisle of the university hospital. We had been discussing his health, which had not improved over his two-week hospital stay and had been deteriorating over the preceding few years to the point that he now had difficulties performing his daily chores. The topic of Jonas' medical need for lung transplantation had come up toward the end of his previous admission, and this prospect evoked in him a mixture of conflicting emotions due to his anticipation of a possible future infused with hope for a "second" life, complicated by his fear of imminent death if the procedure should fail. This conflict evoked in him hesitation and ambivalence about the wisdom of entering a transplantation program, bringing with it the prospect of an exhausting ordeal of repeated preparatory assessments and waiting for a donation that might be delayed for months or years. Later that week, the question of Jonas' refusal to sign onto the transplant list was discussed at the weekly departmental team-meeting. The initial suggestion by team members, who were struggling to accept their patient's resignation, was to introduce Jonas to a patient who had been successfully transplanted, and thus able to convey a more positive outlook; this might change his mind. However, the chief of the department ended that discussion: "No one should be talked into a transplantation." The team learned of Jonas' death a few months later. Jonas' insistent focus on the weariness that the preparation for a potential post-transplant-future would bring into his present life, and his refusal to sacrifice the energy of his current life for a possible but unknown future, is a rare event on the CF ward. Novice team members as well as other patients, some of whom had not yet encountered such a decision, were left puzzled and unsettled by Jonas' decision. Over the following months and in the light of events and discussions recounted in this article, the team began to understand Jonas' decision, and to accept the chief's insistence that Jonas should not be placed under pressure to amend his decision. Our new understanding was in terms of hoping -not hope as something to be dispensed, but rather hoping as a practice involving patients, the team, therapeutic equipment, and the ward as a place for living and as well as dying; this calls for hard work and sacrifice by the patient, to which Jonas declined to make a commitment.
Managing our affective intensity did not work for everyone in the care team, either. Nurse Nina, unsatisfied with toning down expectations, elected to transfer to a different ward, while psychologist Johanna took early retirement the following year. Amidst a setting marked by uncertainty, we realized that hoping was the ward's default practice, the affective arrangement underpinning its operation. The continuous production and renewal of hoping was crucial to the ward's functioning but instances of the potential for excessive hoping as evidenced in Jack's case, and refusal to be hopeful as in Jonas' case, were also encountered, such that our hoping had to be adjusted. These ambivalences of synchronizing hoping as a critical practice in a hospital ward stand at the center of this article.

Concluding remarks
The ambivalences of hoping described in this article call for further research. Cystic Fibrosis Transmembrane Conductance Regulator modulators are now available for some of the more frequent CF mutations. This new treatment option might add to the tensions and dilemmas of hoping and waiting longer to get on the transplant list, because a patient might one day become eligible for a modulator therapy that is available or under development. Povinelli (2011) has designated as future perfect the temporal inversion whereby people are made to act as if the desired condition is already actualized. She criticizes the evaluation of the appropriateness of today's decision not against the present day, but against some future horizon -a future that might or might not ever materialize. In this process, "suffering disappears when seen from the perspective of what it will have been -or been for" (2011:3).
Our highlighting of the intensity of practices on the CF ward demonstrates how patient and team need to participate in adjusting hoping to a level that works for the whole group. So, to use Jeannette Pols's (2006) phrase on "good care," "good hoping" is not the maximum amount of hope possible simply because more hope is better; neither is "good hoping" necessarily the right amount of hope from a clinical perspective. This is because hoping is not the same as adherence. "good hoping" is not defined by positive emotions alone, because good is not necessarily positive; "good hoping" is an intensity of care practices that need to be constantly negotiated between patients and care team within the specifics of the transplant regimen, medical technology, and its demands on everyone involved. Good hoping entails a degree of sacrifice in order to show oneself worthy of the gift of life prolongation as presented by an organ transplant. Yet that appropriate degree of sacrifice is not fixed or clinically defined, but is also a matter of negotiation. A fixed "ethics of the future perfect" calls for patients to deliver a given amount of sacrifice through a certain intensity, i.e., a certain form of hoping. This scenario misses the necessary tinkering that necessarily arises in dealing with existential suffering, particularly for young people with CF. We do not keep demanding this negotiation only because it can optimize the fair distribution mechanism of a scarce resource. We are simply at a loss to come up with a better alternative. Since a fair mechanism may not suffice for good care in the present, our challenge is to regulate intensity and negotiate hoping so that it works in the present without sacrificing the patient's chances of a future.

Notes on contributors
Stefan Reinsch, Dr. med., M.A. in Social Anthropology, is a physician-anthropologist working as a researcher at the Centre for Health Service Research, Brandenburg Medical School -Theodor Fontane while at the same time completing his residency in pediatrics. He conducts several ethnographic research projects along the life-course of people with cystic fibrosis, the experiences of overweight people in rural areas, and the professional identity formation of tomorrow's doctors.
Jörg Niewöhner, Prof. Dr., is Professor for Social Anthropology of Human-Environment Relations at the Institute of European Ethnology, Humboldt-University, and Director of the Integrative Research Institute THESys-Transformation of Human-Environment-Systems (IRI THESys), Berlin. He conducts ethnographic research at the intersection of science and technology studies, social anthropology, and environmental sciences.
Carsten Schwarz, Prof. Dr. med., is an internalist and specialist for respiratory medicine. He is director of the Cystic Fibrosis Centre Westbrandenburg, Division Cystic Fibrosis, Clinic Westbrandenburg, Potsdam, Germany. He conducts clinical research on advanced cystic fibrosis lung disease.