Improving quality of life in daily nephrology practice

Care-concepts have proliferated over the past couple of years, and have been used to study all kinds of practices, situations and sites. This begs the question: What is gained by studying practices in terms of care? The paper addresses this question by using a specific care-approach, which is the study of daily life dealings (Mol et al., 2010). It mobilises this approach to investigate a particular object, namely a good provision of haemodialysis treatment in nephrology practice. It does so in a given place, a dialysis unit in Austria. Based on ethnographic fieldwork with a focus on how patients' quality of life was improved, the paper reports how, in this dialysis unit, a quality of life questionnaire was introduced but soon abandoned. It first analyses how the prominent ideal that quality of life is to be measured with a questionnaire arrived in the goings-on in the unit. It then teases out how connecting and disconnecting patients to dialysis machines, and seeing them during the daily round enacted knowing, improving and quality of life in other ways than the prominent practice. It argues that questionnaires, forms, protocols, and the prominent practice they are part of may not only be made to fit into daily clinical practices or that daily life dealings are other to prominent practices. Daily clinical practices may also be the basis upon which questionnaires, forms, protocols, and the prominent practice they are part of are evaluated, abandoned, and forgotten. Recommending further investigation into the conditions of possibilities for alternative enactments of a good provision of health care to thrive, the paper concludes that what has been gained by using this specific care-approach to study this particular object are insights into daily life practices that have so far been othered in nephrology practice and STS.

the only ones who have turned to care. Marie Puig de la Bellacasa (2011) has done so as well. In the light of a looming ecological crisis, she has called for studying matters of facts and sociotechnical assemblages not only as matters of concern (Latour, 2004), but to turn them into "matters of care". She has detailed (2011), this implies that, as one investigates technoscientific agencies, one exposes invisible labours, intervenes in the articulation of issues by thinking about how things could be "otherwise", and allows oneself to become affected by the issues one investigates instead of divorcing affects from the research experience. Reacting to these turns towards care in terms of daily life practices and ethico-political concern, Aryn Martin, Natasha Myers and Ana Viseu (2015) have warned against forgetting care's darker side: its lack of innocence and the violence that is committed in its name.
They have proposed conceptualising care as a "mode of attention" (Martin et al., 2015, p. 627) that is highly selective: although it "cherishes some things, lives, or phenomena as its object [...], it excludes others" (ibid.). Other STS scholars have, in parallel, mobilised these various concepts of "care" to investigate practices that are rarely described in terms of "care", such as policy practices (Gill et al., 2017), animal husbandry (Law, 2010;Singleton, 2010) and natural science laboratory practices (Pinel et al., 2020; Giraud they joined in as ethnographers as diabetes nurses discussed with diabetes type 1 patients nitty-gritty details of how to best measure their blood sugar levels, when care givers brushed the teeth of elderly suffering from dementia, and as psychiatry health care professionals supported patients with mental disorders to learn to wash themselves. The ethnographers noticed that what was going on in these moments was a silently embedded "practical tinkering" and an "attentive experimentation" (Mol et al., 2010, p. 13). In their analysis, they teased out what, through this practical tinkering and attentive experimentation became performed as good, what as bad, and ambivalences and complexities unfolded in this process. They have pointed out that putting into words these silently embedded processes provides much more than a mere description of practices going on in the provision of health care in 'the world out there.' An ethnography, they have argued, is able to articulate alternatives within the ideals, discourses and practices that currently govern the provision of health care in Europe and North America.
The object that I wanted to investigate was a good provision of haemodialysis treatment to patients in the end stage of renal disease in nephrology practice, focusing in particular on how -as it is often put -a patient's quality of life is improved. A good provision of haemodialysis treatment in nephrology practice has not remained uninvestigated in STS. Andrew MacDougall and his team (2016) have investigated the disputes that nephrologists had with cardiologists about the aim of haemodialysis and the authority of clinical decision making when providing health care to patients in the end stage of renal disease who also had advanced heart failure.
In the debates, the researchers learnt, fluid constantly changed 5 These studies fill an important gap created by STS research focusing primarily on the promises and practices of transplant, e.g. Felt, Fochler and Winkler (2010) and Amelang (2014) medical sociological studies zooming in on social interactions, in particular shared decision-making processes around dialysis, most recently e.g. Selman et al. (2019) and Ladin et al. (2018), and medical anthropological work on patients' experiences of living on haemodialysis treatment, e.g. Kierans (2005) and Russ et al. (2005).. 6 {$NOTE_LABEL}. https://www.nephro.at/oedr2016/oedr2016.html 15. August 2018. between a "matter of fact" and a "matter of concern" (Latour, 2004), leading them to argue that the object of nephrologist's intraprofessional collaboration is more granular and less stable than the idea of 'the patient' suggests. Wen-yuan Lin (2012) has zoomed in on patients receiving haemodialysis treatment and the tactics that they deploy when, for instance, problems with their vascular access emerge. Some patients, Lin observed, went to see alternative healers and brought alternative treatments to the dialysis unit without telling staff about it. Lin suggested that these tactics enact both a biomechanical body and one in which chi is circulating. Yet again differently, Pascale Lehoux and her team (2008) have concentrated on policies designed "to improve" the provision of haemodialysis treatment. They found that the call to provide "closer-to-patient services" was implemented in projects in diverging ways. While in one project haemodialysis facilities were built into a bus, in another a dialysis unit was constructed in a local hospital. As in both projects, the length of dialysis treatment remained four hours and the daily rounds of nephrologists were replaced with videoconferencing, Lehoux and her team have argued that the practice of nephrology remained the same and at the same time became different. STS studies have thus highlighted how a good provision of haemodialysis treatment is debated by nephrologists and other health care professionals, is enacted in specific ways by patients, and is reconfigured through the implementation of policies that aim at improving it. 5 In order to investigate with this care-approach how a good provision of haemodialysis is crafted, contested and negotiated in nephrology practices, I set out to carry out fieldwork in Austria.
What follows is the outcome of this process.

Haemodialysis treatment and nephrology in Austria
Around 4,000 patients (out of a total population of 8.7 million) were receiving haemodialysis treatment to replace lost renal function in 2016 according to the Austrian Dialysis and Transplantation Registry's annual report (ARGE ÖDTR, 2017 the early recognition of disease, the diagnostic differentiation of diseases, the evaluation of functional disorders and the provision of non-surgical therapies." 6 Haemodialysis treatment is, in other words, the core task and expertise of an organ focused subspecialty, nephrology, which is part of the larger speciality, internal medicine. The treatment and the specialists providing it are part of a state-run system. Physicians specialised in nephrology have organised themselves into the Austrian Society of Nephrology (ÖGN), which holds semi-annual meetings that provide updates and continued medical education. The society also collects information about each individual patient with renal replacement therapy for the Austrian Dialysis and Transplant Registry (ÖDTR), and forwards that data to the European registry run by the European Renal Association (ERA-EDTA) based in Amsterdam.
The provision of haemodialysis treatment in Austria is fairly typical of the situation in Western and Northern Europe, with two exceptions. 7 Ethnographies from places other than Europe and the U.S. provide a vivid reminder that dialysis is far from being a standard treatment that is available universally. For an analysis of the political etiology that patients in Egypt develop where not only kidneys, but also the state, fail, see Hamdy (2008); for the ways in which dialysis turns into a "gift" that poor patients in Thailand are waiting for, see Seo (2016); and for the liminality of lives of dialysis patient who are undocumented migrants in the United States, see Kline (2018).
8 The main distinctions made by the staff were between patients who were "running on their own" (and did not need much attention), who represented "a complicated case" (for example a patient who, in addition to being in renal failure, was also unemployed, divorced, and had three children out of whom one had disabilities), or patients who were "doing badly" (and expected to pass away within the next few days or the week). For a critical analysis of the categories of "bad patients" and "good patients" used by medical students in the United States, see Sointu (2017). 9 There are many good reasons why patients on dialysis might refuse offers of living donor kidneys for instance, as Gordon (2001) shows.
First, in some countries, such as the Netherlands, health insurances also cover haemodialysis treatment at home. Second, over the past couple of years, dialysis units in Austria have experienced a hollowing out of material and personnel infrastructures. This kind of tightening of economic resources is different to other countries where financial restrictions have taken place through an explicit "rationing" of treatment that becomes reimbursed, like in Switzerland, or through policy changes that induce a shift towards more "patient involvement" in the form of home treatment, for instance in Denmark. 7 Collecting data on the provision of haemodialysis treatment in Austrian, analysing "practical tinkering" embedded in "daily life" I began data analysis by identifying processes, which through an emphasis on reason, autonomy and choice in nephrology practice were the focus of attention and those that became taken for granted, devalued and othered. Preparing patients for a kidney transplant received a lot of attention in the two dialysis units, while the provision of haemodialysis treatment was often taken for granted. I therefore started to focus on the latter. Within the provision of haemodialysis treatment and the tasks it consisted of -the monthly blood analysis and the daily rounds -not all practices were equally valued either. The division of labour in the second unit I had collected data in, which was organised in a particularly hierarchical way, mirrored this. In that unit, the chief physician was present at the monthly blood analysis and communicated results to patients. The daily rounds were carried out in alternating ways by three senior physicians. Thus, I focused on the rounds and what happened during them. The rounds themselves depended on nurses connecting patients to the dialysis machine in order to start treatment and disconnecting them at the end. I took the daily round, the connecting and disconnecting as constituting the "daily life" dealings in the provision of the haemodialysis treatment. Next, I analysed the kind of doings undertaken during the daily round, the connecting and disconnecting, which I determined as constituting the "practical tinkering" and "attentive experimentation".
In what follows, I present my findings by providing fieldnotes of what happened on the very first morning on the first day of fieldwork and of what happened to one patient, whom you have already met in the introduction, during the daily round. He was presented to me by the staff in the dialysis unit as a, for the unit, "typical" haemodialysis patient. 8 I call him Herr Fialka. He is also representative of haemodialysis patients in Austria in terms of age, co-morbidities, and disease trajectory. In 2016, when I first met him, he was 74 years old. In 1997, he had been diagnosed with chronic kidney disease, and in 2011, he had begun haemodialysis treatment. Herr Fialka never wanted a kidney transplant. 9 Prior to this, in 1975, he had been diagnosed with chronic inflammable bowel syndrome and many operations had followed. In 2018, he was diagnosed with testicular cancer and developed an inoperable 10 For an investigations into what quality of life measures do in global health practices, see Wahlberg and Rose (2015) and in daily life practices of patients, see Pols and Limburg (2016 To situate this observation, the insights on quality of life provided by medical sociologists and STS scholars are helpful. Quality of life emerged as a concept in the 1960s, when three separate debates unfolded in medicine and society (Armstrong & Caldwell, 2004).
The first revolved around the question of social progress and social crisis; the second concerned haemodialysis and other newly developed medical technologies that prolonged life, but, as some physicians asked, at what cost? The third debate arose around the question of how to assess the quality of treatment and care for patients with chronic diseases that could not be cured, and elderly people, for whom survival was not a good measure. Armstrong and Caldwell have argued that quality of life served as a "device" (2006, p. 361), as they put it, in these three debates that allowed the debates to settle at a rhetorical level. The concept was formalised in the 1980s, when four instruments, developed between 1950 and 1980, were merged into one (Armstrong et al., 2007). These were a mental health assessment, a symptom list, a measure of so-called "activities of daily living" (i.e. the effects a disease yields on activities like climbing up stairs), and an assessment of "social These medical sociologists and STS scholars have brought out how a concern for a patient's daily life with a disease and/or a treatment has come to be articulated in terms of "quality of life" that needs to be "improved" and a particular way of going about it, measuring quality of life with a questionnaire, has gained prominence and often social functioning (work and sexual relations). For example, it asked patients to choose, with regard to their previous week between the following statements: "1 -I do not get tired more easily as usual." "2 -I get tired quicker than I did before." "3 -Nearly everything makes me tired." "4 -I am too tired to do anything." The questionnaire was printed out and distributed by one of the unit's nurses. Ten patients answered the questions and returned the filled-out forms.
Let me draw your attention to what, then, did not happen. Doktor Doblinger and her colleagues did not follow up on the missing questionnaires. They did not sit down and rephrase the questions in such a way that they might solicit more "truthful" answers. They  Fieldnotes, 24 March 2017, City Hospital, dialysis unit, 9: In addition, Angelika and the other nurses watched over the state of Herrn Fialka's and other patients fistulas and measured the potassium level in patients' blood. At the end of every month, "the monthly bloods" were taken. For each patient a set of parameters were assessed: vital parameters -haemoglobin and C-reactive protein -, amount of waste products -calcium and phosphateand other parameters, such as Kt/V, a dialysis quality parameter that had been introduced in the 1970s and 1980s, but that had never established itself as sole indicator (Cameron, 2002, p. 247).
Depending on the values, Doktor Doblinger and her colleagues increased or decreased medication dosage (for example of phosphate binding drugs), replaced one drug with another (three pills of a blood pressure drug a day with another drug that required intake of one pill a day only), and increased or decreased the length of dialysis run or speed. 12 Still, on the morning described above, Doktor Doblinger did more than attending to the amount of fluid in Herr Fialka's body. She reacted to another bodily ailment that Herr Fialka was afflicted with. This bodily ailment was neither cramps, nor itching skin, nor nausea caused by chronic kidney disease or haemodialysis treatment. It was a bodily ailment which, in common pathophysiology, was completely unrelated to Herr Fialka's kidney failure or dialysis. It was one morning among many during which I observed nurses and physicians attending to issues that Herr Fialka and other patients brought up that were related neither to renal failure nor to its treatment. I will provide just two more examples.
On another day during the daily round, a patient mentioned how tired he was. To differentiate between a tiredness that was normal, one that was a sign of depression and one that indicated a slowly progressing dementia, Doktor Doblinger called the psychologist.
When the patient came in for his next dialysis run two days later, the psychologist carried out a dementia test, which was positive.
Doktor Doblinger then called a colleague from the neurology department, who advised her on the best possible medication to prescribe, wrote a letter of request for reimbursement of the drug which was covered only "under special circumstances", filled out the prescription form and handed it to the patient at the end of the dialysis run. On another day during the daily round, yet another patient had wanted to receive an influenza vaccination.
Her general practitioner would have charged €30 for it. The patient had ventured that the solution might simply be "poured into" the dialysis machine. Doktor Doblinger explained that "pouring the vaccine into" the dialysis solution was definitely not feasible. She, 12 Each of these values deserves to be further unpacked. For an example of an indicator in practice, see Amelang and Bauer (2019).
13 These activities were described by Doktor Doblinger, nurse Angelika and their colleagues not in terms of "Verbesserung von Lebensqualität", the German equivalent of "improvement of quality of life". As the fieldnotes illustrate, they focused on issues to be avoided. Instead of articulating how a good was strived towards, what became put into words were the bads to be circumvented (Mol, 2002). Asked by the ethnographer about what they did to "improve patients' quality of life", they pointed out how quality of life differed for each patient and was experienced by some patients as very poor while, as they put it "objectively", being quite good. This reflects how quality of life, besides being a treatment goal, is also a concept about which informants reflect. A detailed analysis of the gaps between doings and the German word for "quality of life", "Lebensqualität", goes beyond this paper. For such an analysis focusing on the case of sensual engagements with foods and the word "tasting", see Mann and Mol (2019). then, called a colleague specialised in general medicine to ask whether the serum was to be injected subcutaneously (under the skin) or intramuscularly (into muscle mass). When the patient came in two days later, she administered the vaccination according to her colleague's advice. In all these cases, Doktor Doblinger, nurse Angelika and their colleagues during the time that a patient spent in the dialysis unit established new diagnosis', provided prescriptions and administered drugs unrelated and in addition to kidney failure and haemodialysis treatment. 13 Many other STS scholars have argued that the practical tinkering embedded in daily life dealings in the provision of medical and nursing care enacts knowing, improving, and that which is to be improved in other ways than prominent practices do. They have illuminated this divergence through case studies ranging from mundane goings-on in rehabilitation clinics versus rehabilitation outcome measures (Struhkamp, 2004), daily practices of washing in mental health care facilities in contrast to formal care-plans (Pols, 2004), day-to-day provision of nursing care provided for elderly with dementia (Moser, 2010) and health care for patients with arteriosclerosis versus randomised controlled trials. (Mol, 2006) Such a divergence can also be observed in the provision of haemodialysis treatment in the dialysis unit of the City Hospital. Let me tease out the differences between the ways measuring quality of life with a questionnaire, which Doktor Doblinger originally set out to do, and the establishment of new diagnosis, provision of prescriptions and administration of drugs reported above enact knowing, improving and quality of life.
Measuring quality of life enacted knowing as a way of making explicit, a formalisation that transformed answers that patients had provided by ticking boxes into numbers, and a quantification. Improvement, in this practice, would have happened if a change of values had been observed before and after an intervention, at two clearly delineated and distinct points in time. Quality of life, in this process, would have become located in a fixed set of parameters.
They would have been the effects that one and only one disease, chronic kidney disease, and the treatment provided for this one disease, haemodialysis, had on physical and emotional health, activities of daily living and social functioning. A questionnaire that had comprised kidney disease specific items would also have located quality of life in itching skin, cramps and nausea.
In contrast, through connecting and disconnecting patients, and doing the daily round physicians, nurses and other health care staff knew how patients were doing in a way that was an implicit, distributed and collective sensing. 14 Nurses gathered information through casual chatting with patients while connecting and disconnecting them while physicians learnt about how a patient was doing when encountering him or her during the daily round every other day over months, sometimes years, and, in rare cases, decades. The psychologist had appointments with them. The information and impressions were partially shared during the daily meeting of the nursing and medical staff, over coffee and in the corridors. Improving, in these practices, was an ongoing process. 15 It sometimes began with an evaluation and re-evaluation of what could and should be attended to. Doktor Doblinger, for example, did not examine a sprained ankle that a patient brought up during the daily round. The dialysis unit did not have an x-ray machine, necessary to either diagnose or rule out a fracture. If an issue was attended to, such as the eczema of Herr Fialka, it was followed up on. Most striking was the quality of life that the establishment of a new diagnosis, handing out of a prescription or administration of a drug improved. Against the backdrop of patients already spending three times every week with being driven to the hospital, often waiting to be connected, having a four hour long run, becoming disconnected, driven home and recovering from the procedure, quality of life was located in the time and money that these patients spent seeking and receiving health care for acute or chronic diseases they happened to become sick from in addition and unrelated to chronic kidney disease. Improving quality of life meant freeing patients' time and money so that they could spend these resources in ways other than seeking and receiving health care in the hospital and other health care facilities, which were part of a health care system that was differentiated according to medical specialties and distributed geographically. 16 14 That sensing is anything but erratic has been argued in a variety of ways in studies on tasting (Mann, 2018;Teil, 2001).
15 The ongoingness of the tinkering involved in crafting a "good life" while living with a chronic disease has been emphasized in many studies on a variety of chronic diseases (e.g. Mol, 2008;Pols, 2013;Struhkamp, 2004). What has been left unexplored, however, is the question how a tinkering for a "good life" is able to include and eventually turn into a striving for a "good death". For an explorative study on the complex processes leading towards a withdrawal of dialysis and end of life, see Axelsson et al. (2020).
16 For a more detailed analysis of how patients from the City Hospital enjoy life outside the dialysis unit, see Mann forthcoming b.
The connecting and disconnecting of patients and meeting them during the daily round that took place in the dialysis unit in the City Hospital suggest that daily life dealings do more than enact in other ways knowing, improving and that which is striven towards. When quality of life questionnaires were introduced, a patient's answer on the questionnaire (that she was sleeping 'very well') was brought together with the information that the physician and the psychologist had gathered during the daily round and a consultation. In the end, it was the questionnaire's information that became judged as "not truthful." In similar ways, in the second unit, the daily life of administering haemodialysis treatment went on without entering the questionnaire's results into Excel. In the third dialysis unit, the practice of measuring quality of life with questionnaires was brought together with all the other tasks that providing haemodialysis treatment included and the number of staff available to perform them.
It was, again, the practice of distributing questionnaires that became ruled out as "being too much work." I, therefore, suggest that in empirically observable encounters that happen between a prominent practice and daily life dealings in the provision of medical and nursing care, daily life dealings can be the backdrop against which the prominent practice becomes evaluated and can constitute the resource through which it becomes questioned, abandoned, and forgotten. From the vantage point of daily life nephrology practices, the quality of life questionnaires that had been distributed had been neither been useful nor necessary.
They had not detected the issues that patients brought up and might even have yielded harm, as they might have created a causal link between a patient's tiredness, chronic kidney disease and haemodialysis treatment, and left the patient's onsetting dementia undiagnosed. They became a story of something that "had not worked out" and was "too much effort".
The vital importance of daily life practices STS scholars have studied how a good provision of haemodialysis treatment is crafted, negotiated and contested in disputes that nephrologists engage in, in tactics that patients pursue, and in policies designed to "improve" the health care service. Mobilising an approach to care as the study of daily life dealings and the practical tinkering embedded in them, this paper has brought out what is at stake in processes that have been othered, taken for granted and devalued in nephrology practice and also STS studies so far: the daily round and connecting and disconnecting patients. Based on ethnographic fieldwork carried out in one dialysis unit and other relevant sites in Austria, it has reported how a quality of life questionnaire was distributed to patients in the unit, but soon abandoned. I have analysed first the highly specific and diverging dynamics through which the prominent practice and ideals to improve patients' quality of life, it is to be measured with questionnaires arrive in locally ongoing nephrology practices. Second, I have brought out the ways in which the connecting and disconnecting of patients and the daily round enact knowing, improving and quality of life in other ways than questionnaires do. My main argument has been that questionnaires, forms and protocols neither always become adjusted and adapted to fit into locally ongoing clinical practices, nor are daily life dealings simply other to questionnaires, forms, protocols and prominent practices. Rather, daily life dealings in the provision of health care may also be the basis upon which prominent practices become assessed, evaluated, and end up becoming judged as being "too much effort" and "not having worked".
If, as I have argued, questionnaires, forms and protocols and the prominent practices they are part of may become abandoned and other ways of knowing, improving and a good provision of health care continue to thrive, this raises the question of under which conditions such an abandoning can occur. In the dialysis unit of the City Hospital, it seems two types of processes contributed to patients' resources becoming freed instead of kidney disease and dialysis treatment side-effects being measured. First, the dialysis unit was managed in a particular way by the head of the internal medicine department that the dialysis unit was attached to. She did not get involved in the provision of haemodialysis, but relied on the senior physician, who was leading the dialysis unit, and everybody else there "doing their thing." This implied that, amongst other things, if a staff member developed a project, rather than expecting that they strictly followed the gold standard of Evidence Based Medicine in its implementation, she appreciated that someone had taken initiative at all. Second, accounting practices were crucial. The values that the quality of life questionnaire would have produced never became part of the annual budget negotiations of the internal medicine department that the head of department had with the hospital's finance department. Also, the accounting system in the City Hospital did not list all the services that the dialysis unit had provided Instead it lumped them together with those of all other outpatient clinics of the hospital. Prescription of medication for diseases other than chronic kidney disease, treatments other than haemodialysis and the establishing of novel diagnosis, thus, remained invisible. I, therefore, recommend further investigation into processes, especially management and accounting practices, that enable alternative enactments of a good provision of health care to strive and prominent practices to become abandoned.
What is it, then, that has been gained by studying practices in terms of care? This paper has addressed this question not in general or abstract terms, so not forgetting that there are vital issues at stake in the worlds that we, STS scholars, and our research are embedded in, such as Herr Fialka's and other chronic kidney disease patients' quality of life. Instead, it has made three moves. First, it has mobilised one specific care-approach, which was the study of daily life dealings and the practical tinkering embedded in them. It has used this approach to, secondly, investigate one specific object, which was a good provision of haemodialysis treatment to patients in the end stage of renal disease in nephrology practices. It has done so, thirdly, in a given place, which was a dialysis unit in Austria. What has been gained has arisen out of a relational effect between the object and its specificities, the way the object had been studied so far in STS, and the strengths of the care-approach taken. This is insights into daily life practices: doing the daily round, connecting patients with and disconnecting them from dialysis machines, and an anything but benign phone call that has happened in between.

Author biography
Anna Mann works as a PostDoc researcher at the University of Copenhagen, Denmark. Anna's research is situated at the intersection of science and technology studies, sociology and anthropology. It investigates goods in practice through ethnographic case studies set in Western Europe. After having studied moments in which something "tastes good" in eating, she is currently tracing the making of "quality of life" in medical practice. With her research, she contributes to ongoing debates about values in practice, and the body and its materialities.