Towards an empirical ethics in care: relations with technologies in health care
This paper describes the approach of empirical ethics, a form of ethics that integrates non-positivist ethnographic empirical research and philosophy. Empirical ethics as it is discussed here builds on the ‘empirical turn’ in epistemology. It radicalizes the relational approach that care ethics introduced to think about care between people by drawing in relations between people and technologies as things people relate to. Empirical ethics studies care practices by analysing their intra-normativity, or the ways of living together the actors within these practices strive for or bring about as good practices. Different from care ethics, what care is and if it is good is not defined beforehand. A care practice may be contested by comparing it to alternative practices with different notions of good care. By contrasting practices as different ways of living together that are normatively oriented, suggestions for the best possible care may be argued for. Whether these suggestions will actually be put to practice is, however, again a relational question; new actors need to re-localize suggestions, to make them work in new practices and fit them in with local intra-normativities with their particular routines, material infrastructures, know-how and strivings.
KeywordsEmpirical ethics Care ethics Intra-normativity Ethnography Telecare
Care ethics brought about some major shift in academic (medical) ethics. Most notably, this shift concerns care ethics’ central notion of the relational interdependence of people as subjects that are caring and cared for. According to care ethics approaches, people can only exist in and through (caring) relations with others (Sevenhuijsen 1998). The ethics of care grounded a disciplinary challenge of the then dominant ideal of the autonomous subject in medical (principle-based) ethics. Principle based medical ethics commonly works with four principles: autonomy, beneficence, non-maleficience, and justice.1 Of these four, patient autonomy became the most influential, and care ethicists argued that its institutionalization through laws and ethics committees marginalized the more day to day moral conflicts in care (Kohlen 2009). Care ethics, with its sensitivity to caring relation, has put these matters back on the ethical agenda and challenged the idea of autonomy. When people are relational entities, the idea of an autonomous subject that exists and acts all by itself becomes dubious. Although autonomy did far from disappear from medical ethics or medical practices as a principle of importance, its meaning is fundamentally contested by care ethics (Verkerk 2007; Leget et al. 2011), for example by proposing notions of relational autonomy (Walker 2007), analyzing care as different forms of living together or citizenship (Sevenhuijsen 1998; 2000; Tonkens and Newman 2010; Pols 2006) or by analyzing autonomy as a relational achievement (Moser and Law 1999).
Roughly 10 years after the establishment of care ethics, its problems also come to the fore. One problem is that care ethicists see it as their task to define or normatively describe the essence of good care (see e.g. Tronto 1993; Walker 2007; Verkerk 2007). Joan Tronto, for instance, wrote that we can only speak of care if there is someone noticing a need for care, someone who takes responsibility to meet that need, someone did something about it and, finally, someone checked with the care receiver to see if the care was acceptable. Hence, Tronto formulated a prescriptive ethics of care to focus professional caring relationships.2 The concept of care is interpreted normatively by indicating the criteria that need to be met in order to call an activity, relation or practice care and hence good. This normative position makes the relation to empirical research of actual care practices dubious. Care practices, it seems, can only be put to the test by establishing if they live up to the normatively defined ideas formulated by the care ethicist. This positions care practices in the world of facts, to which ethics and morality are added from the outside.
In this paper I want to take the next step by outlining a successor of care ethics that treats care- and care ethics research practices more symmetrically: empirical ethics of care. Such an empirical ethics of care makes it possible to analyse the different and sometimes conflicting notions of what is good care within care practices. By using comparative multi-site ethnographies, the different values can be weighed and argued about. In my description of an empirical ethics of care I refer in particular3 to the type of empirical ethics that has been dubbed re-scriptive -rather than descriptive ethics (a sociology or anthropology of values that describes values in practices, but does not interfere with or dispute these) or prescriptive ethics (an ethics that balances abstract values with the intention of deciding on the best possible action) (Harbers 2005; Pols 2008). Empirical ethics developed from a material semiotic or praxiographic approach that studies things and people in their relations. It departs from the description of care practices as situations in which the participants undertake practical care work that is aimed at stabilizing or improving the situation of those cared for. This work is part of the empirical turn in philosophy that started with an empirical turn in epistemology.4 The empirical turn in epistemology changed the way knowledge was studied. Rather than formulating normative criteria to decide what could count as valid and reliable knowledge, as philosophers saw as their task, these scholars studied scientific knowledge by following scientists in their laboratories to observe how they produce knowledge by using technologies, literary and social techniques (Latour and Woolgar 1986; Shapin and Shaffer 1985). In the process, much attention is paid to the material objects, methods and techniques scientists use to produce their knowledge. Empirical ethics makes a comparable move, this time in ethics. It studies ethnographically how people shape goodness in daily life and care. The ethics hence does not only come from outside care practices, but also from within.
Elsewhere I have dubbed this empirical ethics an ethics of the social, in contrast to ethics that considers moral questions for individuals (Pols 2013). An ethics of the social analyzes ways in which people and things live together in particular practices as micro societies. These micro societies can be observed in their day to day accomplishments of good ways of living together. ‘Good’ here is to be described by analyzing the local strivings, values and material enactments of it. It is to be analyzed empirically, and, I will show, it may be disagreed with.
The paper will demonstrate the workings of an empirical ethics of care by working through a case study and answering the following questions: How to think about relationality when it includes things and technologies as well as people? How can normativity that is empirically described be analysed? How can this normativity be weighed and argued about? How to think about—and what to do with—the results of such an analysis? In the last part of the paper I will discuss the implications for the relation between empirical and ethics research, and how to conduct good empirical ethical research.
Background and elaboration of the questions
The empirical ethics of care practices may be understood as a radicalization of relationality by including things, activities and words as formative for the relations between people. This means that the researcher uses the concept of relationality as a tool for analyzing care practices as the product of mutual relations. Care practices are then analysed as the interrelational achievement of people, as well as the technologies and concepts they use. The precise identity of all these elements is not given, but is the outcome of the way they build their relations. For example, I will show later in this paper that the question how to be a patient or how to live with a chronic disease is not a singular, natural or biomedical given, but is shaped differently in practices in which technologies and other people play a decisive role. A particular disease lived in a different practice emerges as a different disease, because it is treated differently—with real consequences.
How can empirically described normativity be analysed? Empirical ethics understands normativity not merely as a judgment made by ethicists after a careful weighing of principles, but as intra-normativity, a normativity that exists in different forms within practices where participants act to deliver good care with the help of devices, routines and concepts. Normativity refers to the different forms in which the (attempt to do) good appears. There may be norms to follow, values to put into practice, ideals to strive for, tastes to appreciate, or prescriptions commanded. These 'goods' cannot be separated from ways of knowing situations. Rather than reasoning about what is good, such a study starts by articulating participants’ attempts to put something good into practice. Studying intra-normativitity hence means a shift in the separation of an ‘is’ and an ‘ought’, between the world out there and the ethics added to it. Hume’s famous proposition was that prescriptions (‘oughts’) cannot be deduced from empirical facts, and this is of course still true in a logical sense. Empirical ethics, however, studies ‘oughts’ as normativity that exists in plural in practices, in the shape of the activities that are aimed to bring about something the participants perceive as good. An empirical ethics’ description of a care practice reports on the ‘goods’ that carers and patients strive for, the values and norms they in- or explicitly shape, and the ‘bads’ they want to avoid. This places ethics in the world, and makes normative considerations part of everyday practices. For example: carers in a particular practice may routinely take over tasks from their patients, or rather teach them to be independent. Each practice embeds a different notion of what is good to do.
These ‘empirical oughts’ do not only take the shape of rules and prescriptions, but may take the shape of empirically discovered values, ideals, tastes or strivings. They may be rules or routines people live by, ideals they in- or explicitly try to achieve, machines that push them in certain directions, and values that motivate them or are implicitly shaped. Intra-normativity may be implicitly inscribed in medication dispensers that make patients take medication three times a day, or may be explicit as ideals by which people try to shape their practices. With the study of intra-normativities, not only tragic dilemmas are the object of empirical ethics, but also day to day care routines can demonstrate aspects of what is good to do in particular situations. In an empirical ethics of care normativity is analyzed as intra-normativity, as ways of doing good that are strived for in specific practices.
Is intra-normativity good?
How can empirically described normativities be weighed and argued about? An analysis of intra-normativity or values-in-practice does not mean that empirical ethics takes these goods for granted, or even as necessarily good. This would re-create the is-ought trap by falling right into it. Intra-normativities cannot be prescribed, but they may be questioned, for example by comparing them. How may the ‘goods’ that carers work to achieve be different in other practices, for instance when people use different, or no technologies or practice different philosophies of care? Is it, for instance, better to have nurses take control over their patients, or to encourage people with chronic disease to support one another? When, and for what reasons would this be so? How do the intra-ideals relate to ideals elsewhere, such as in policy or ethical treatises? Asking these questions shows that the intra-goodness of practices needs not be taken at face value, but can—and should, if empirical ethics is to be an interesting alternative in ethics—be argued and reasoned about. This may be done by comparing practices and values.
How to think about the results of such comparative questioning? Here empirical ethics becomes self-reflexive. Arguing about intra-normativity can only be done by taking the normative role of caregivers and patients in concrete historical situations into account. The results of an comparative empirical ethics analysis should involve those who give care in actual practices and want it to be good, within relations with things and circumstances that they may or may not influence. Judgments from the outside, from an assumed clear ‘moral sphere of oughts’, are meaningless, ineffective, and maybe even wrong if they do not recognize the involvement, work and motivation that is involved in any care practice, and that is needed to put new normative suggestions to work. Normative suggestions can only gain effect when they may be fit into practices for improvement.
What are the implications for good empirical ethics research? The study of intra-normativity leads to a self-reflexivity for researchers that takes seriously that every activity of knowing (describing) is at the same time an activity of being (intra)normative (re-scribing). This is another way of saying that perceptions are always theoretically informed (Wittgenstein 1953) or situated (Haraway 1991). All researchers articulate their object of research in a particular way, using concepts and techniques that frame what they see as relevant characteristics of a situation. They inevitably re-scribe what they describe. One may study good care, say, as an experiential category (‘We did well, the questionnaire says the patient is happy!’), a prescriptive ideal (‘From a care ethics perspective it follows that empathy should be a central value in care’), as an effective intervention (‘Drug X heightens the life expectancy of 80 % of people suffering from condition Y, says this clinical trial’) or as a set of practices (‘Our ethnography shows that those nurses take over personal care from their older patients so that they have enough energy left to play cards, rather than making them wash themselves to stimulate their independence, as the other nurses do’). Researchers may focus on, say, managers strivings for the good, the workings of power relations or the ways in which the buildings shape caring activities. Each framing leads to different descriptions that are all true, but all different in the way they identify problems and stage possible solutions. The choice of the tools and concepts to frame the object of research is always normative, and hence re-scribes it.
The case study
To answer the questions I will work through a case study from my book about telecare practices (Pols 2012). Telecare, or care at a distance, is care where the one who cares is not in the same space as the one who is cared for. The link between the two is made by modern information and communication technologies. Technologies that—usually partially—take the place of face to face contacts, evoke convictions in politicians that care will be more efficient, may better prevent crises for patients, and will stimulate their self management. Yet these technologies also lead to nurses’, patients’ and some ethicists’ concerns whether care through technology would become a cold and de-humanizing affair. My study was set up to ethnographically study what people (nurses, patients, telecare providers, technicians) did with the devices in actual care practices, and what the devices did with them, what problems they encountered and what values they achieved.5 Exactly what good care is and how it should be shaped was at stake in these innovative practices. I will present some results of these studies into pioneer telecare practices in the Netherlands to demonstrate empirical ethics of care ‘in action’.
Radical relationality as a methodological tool
I will analyze two cases, the situation of Mrs. Jansen and Mrs. Jaspersen, two women with a chronic disease I constructed by combining several interviews.6 They suffer from heart failure and COPD respectively. They both use a particular telecare device, and I will show how these different devices, together with the women’s own and their nurses’ appreciations and routines organize the women’s lives in different ways. The technologies help shaping different ways of living with disease, by co-defining the particular problems that need solving, as well as solutions to these. What type of problems people with particular diseases have, is not ‘given’, but is shaped in the way the devices help people understand what is wrong with them and how they should act. How do the women shape their daily lives through their relations with devices, nurses and others? How does this normatively define ‘what is the matter’ with them?
Mrs. Jansen’s heart failure
Mrs. Jansen suffers from heart failure. This means that her heart is failing to pump blood properly around her body, with the danger that she will retain fluid, which may be lethal if it would fill her lungs. Obviously, she and her doctors must find ways to prevent this from happening. Mrs. Jansen has to stick to a strict diet that regulates her salt and fluid intake. She cannot drink more than 1.5 l a day and she has to avoid eating salt. To keep an eye on her condition, Mrs. Jansen is ‘on the monitor’, as she puts it. Every day she weighs herself on the special scales that she has in her house and after that, she measures her blood pressure. The device transmits the daily measurements to the hospital, where the heart failure nurse checks them. Should anything be out of order, the nurse will call Mrs. Jansen to discuss what she needs to do. A sudden weight gain might signify fluid retention; low blood pressure might point to trouble with medication.
Mrs. Jansen is encouraged to call the nurse herself, if she feels something is wrong, or if she notices that her weight or blood pressure measures go beyond set thresholds. But this, she says, she does not do, because she does not want to bother the nurse. She says she can spot fluid retention: it makes her ankles swell. If she sees she is retaining fluid, she lies down for an hour or so, and it goes away. And if it does not, she might take an extra half or a whole diuretic pill. I ask her why she needs the monitor if she seems to have things under control anyway. Mrs. Jansen says it is nice to have it. She feels safe having the nurse keeping an eye on things. ‘Of course you know a lot, because you have lots of experience with your heart and with your body. But this feels safer. The idea that there are people out there checking on you puts your mind at rest. They know a lot more about heart failure than I do.’
Mrs. Jaspersen’s COPD
Mrs. Jaspersen suffers from chronic obstructive pulmonary disease (COPD), a progressive lung disease. It used to be called emphysema, signifying that the lungs lose their elasticity and become prone to inflammations that may lead to immediate hospitalisation. The disease makes breathing difficult and Mrs. Jaspersen gets short of breath quickly. After walking a hundred metres, she has to sit down to recover. Shopping became a truly athletic endeavour, until she was unable to do it anymore. Then Mrs. Jaspersen became desperate. After consulting her GP, she was admitted to a rehabilitation clinic where she would learn to live with severe COPD. Her ‘life, body and soul’, as she put it, were turned inside out to find potential improvements, from breathing and walking techniques to pacing her energy and panic control, and from medication to daily routines and exercise. At her discharge, the clinic delivered a computer with webcam at Mrs. Jaspersen’s home. She can use the computer to surf the internet, for email, and uses the webcam to talk to others on a closed network of fellow patients from the clinic. In the 3 months following her discharge, she also has weekly webcam meetings with her carer from the rehabilitation clinic.
When does Mrs. Jaspersen use the webcam to talk to other patients? ‘When I’m not feeling well or when I am looking for distraction.’ She says she worries a lot: ‘Would my illness be coming back, is the hospital waiting for me again? Then I talk to my friend to find out how she feels and what may be wrong.’ Mrs. Jaspersen and her friends also tip each other for good remedies that ease breathing or economize on oxygen use. For instance, showering costs a lot of energy. Her friend has tipped her that she could skip drying her body, and dry up in a bathrobe. Hence, there would be energy left to do other things in the day. Mrs. Jaspersen also points to a bag filled with boxes of medication. If she feels a crisis coming up, she has to take her own antibiotics and prednisone, to avoid hospitalization. The clinic encourages her to take advantage of this possibility to self-medicate.
Two diseases, two devices, two lives with chronic disease
This first re-scription of telecare practices focuses on care and the users of the telecare devices (rather than, say, on the interests of the industry, the role of the managers, or the effectiveness of the devices). It describes the interactions of the women, and the devices they use in relation to their nurses and others. These different sets of relations do not respond to a problem that was defined external to these practices and the relations within them, but is the result of the relations within them, and the ways these relations foreground some things rather than others. Hence, a particular reality of chronic disease and ways to live with that is relationally brought into being. How can this be analysed as the shaping of intra-normativity?
To start with Mrs. Jansen: by weighing and measuring herself, Mrs. Jansen produces figures. If blood pressure or weight values deviate from their individually defined standards, that is defined as a problem. This applies if either value crosses the threshold set by the cardiologist. The computer protocol will detect it and send an alert to the nurse, who will then call Mrs. Jansen. But the setup does other things as well. Organizing problem identification like this separates subjective complaints from objective measurements. When you measure objective parameters in a patient’s body, the nurse does not have to wait for Mrs. Jansen to report complaints. The purpose of measurement is to warn of trouble and this points to the difference between what devices do and what people experience of their own bodies. Value deviations may be ignored or go unnoticed, or complaints may be reported without the figures running wild. In the case of monitoring heart failure patients, this difference is even more important, because, as the telecare project leader told me, these patients tend to underreport complaints. They actually feel, or pretend to feel better than is warranted by the objective measurements. Close monitoring, he said, makes it possible to intervene when it is necessary, meaning: when the numbers signal real trouble. The monitoring device intends that nurses see patients faster, before things get out of hand. This means hospitalization, which is an expensive treatment and is traumatizing to patients, may be prevented.
The problem that is made to matter here is the condition of a body that may be objectified, but is hard to know subjectively. Mrs. Jansen’s comment that the nurse ‘knows best’ is understandable. The nurse has the knowledge to recognize relevant symptoms, and knows how to interpret the parameters that no longer belong to the patient’s subjective realm of experience. However, what is this subjective experience? Mrs. Jansen tells me that she knows when her body is retaining fluid. She may not feel it but she can certainly see her swollen ankles. And she is perfectly capable of interpreting the measurements herself, even if she does not do this. Then it becomes clear that the use of the measuring device does not merely objectify disease, it also transports responsibility for spotting trouble from the patient to the nurse. As such, it competes with Mrs. Jansen’s other practices in self care and troubleshooting. For instance, Mrs. Jansen has the discretion to adapt her dosage of diuretics and handles the ways to shape her diet and deal with reduced fluid intake. Crises remain, however, the responsibility of the nurse.
From unreliable experiences to embarrassment
The kind of problems that Mrs. Japsersen came to address in the webcam practice that followed up care in the clinic were very different. Typically, the webcam does not script the content of problems in any structured manner, as was the case with Mrs. Jansen’s monitoring device. Patients can communicate anything discussable by webcam, from vital signs to leisure time, and from breathlessness to domestic affairs. They may discuss different things with different friends. And there is the professional caregiver, with whom to discuss problems and solutions.
A clear directive from the webcam is, however, that patients address problems by making webcam contact, to explore and pinpoint what the problems are interactively. Particular problems were mentioned during the interviews and the observations in the clinic. On the webcam with her caregiver, Mrs. Jaspersen discusses her treatment plan and any troubles she is having in adapting her daily life to what she has learned in the clinic. The carer is happy with virtual meetings on the webcam, because patients like Mrs. Jaspersen may feel embarrassed to ‘confess’ explicitly when they are not doing so well. They are not unreliable reporters without access to their true condition, but rather feel ashamed and insecure asking for more help when they have already had so much.
Mrs. Jansen also uses the webcam to talk to fellow patients, when she is not feeling well, she said, but also ‘just for a chat.’ A couple of fellow patients from the rehabilitation clinic have become her close friends. It is not hard to take the initiative to contact them, also when there is trouble. The others can identify with her problems and they are happy to support each other, all having been in the same position themselves. But fellow patients share more than friendship. They share knowledge. They know what it means to live with COPD and having to fight for breath. Mrs. Jaspersen could call on her friend, the expert, to help her find out what might be wrong with her. They share the experience of living under the various conditions related to COPD. Air pollution, panic attacks and weather conditions all influence breathlessness, and all need other solutions than medication. Everyone mentions feeling depressed at times about their condition and webcam support often successfully cheers people up. The patients recognize these problems and think about strategies to solve them together.
Contrary to Mrs. Jansen, whose experience was seen as problematic and unreliable, Mrs. Jaspersen’s experience forms the starting point for taking action and gaining knowledge. Here, experience is not suspect or in need of correction. Patients can shape it productively, share and sharpen it with fellow patients. It forms the basis for knowledge about ‘living with a condition on a day-to-day basis’. It is different from professional knowledge because it stems from embodied experience and shared skills.
The ways of living with and acting on disease and the nature of the problems that hence emerge as the important ones to address are very different in both practices. They differ not only because the nature of the diseases differs. Mrs. Jansen could also have been invited to chat with fellow patients over the webcam, making her experience important again, probably foregrounding ideas for handling diet (‘you could use spices instead of salt’) and fluid reduction (‘try sucking on a piece of frozen pineapple on a hot day!’). Mrs. Jaspersen could measure her symptoms instead of chatting with her fellows, and this is sometimes done in COPD telecare by using peak flow meters or symptom checklists. What their lives came to look like was a result of the relations between them, the devices, the concerns of nurses, the relations to fellow patients, the doctor’s prescriptions, and so on. Both the relations as well as the devices could have been otherwise. Mrs. Jansen could have watched her statistics on the television, and the nurse could have been more reticent. But their motivations to care and be cared for shaped this practice in another way. The normatively oriented practice of being ill and to care for that illness is created through different relations. Yet they could have been made differently, with a different normative orientation.
The goods within
The relations between persons and things that shape each other define what are important problems to look after. At the same time, this relational analysis shows that these practices are normative. They are normative because the activity of establishing relations create a description of problems that matter together with norms for solving these in a proper way. Measuring objective symptoms shows that patients cannot perceive these ‘as well’ as the devices do, while the production of figures and charts invite for professional checks rather than chats with fellow patients. The idea that fellow patients may provide one another with knowledge about living with their disease, emerged in a practice where webcams are put to use. Hence, an empirical ethical analysis shows that the care practices that are shaped and known relationally are inherently normative. They are practices where people and devices shape some problems and proper ways of dealing with these, while making others less obvious.
I will now analyze the situations in terms of values that are brought into being in care practices. In the practice of Mrs. Jansen, a first value of importance is prevention of crisis. The investment of nursing control is meant to prevent Mrs. Jansen’s condition to become worse, and hence prevents exacerbation and hospitalization. These are scary experiences for patients, and costly events for health care financers. The way to do this shows a second value: the responsibility for crisis prevention should be that of the professional. By making the nurse look into the figures, she is responsible for early intervention, not the patient. The patient does the leg-work by producing the numbers, but is not responsible for a proper diagnosis or plan of action. For Mrs. Jansen, this practice leads to a feeling of safety. She is happy that somebody with the proper knowledge looks after her. She is made active in producing the figures, but passive in interpreting these.
In Mrs. Jaspersen’s webcam practice there is the value of being connected, and not being lonely. Instead of arranging things with the nurse, the webcam encourages patients to organizefellow patients to help them and exchange and develop knowledge together. Then there is the value of taking seriously ones’ own experiences about what and when something is wrong. There is also an idea of a life outsideof illness matters or medical definitions, of doing meaningful things with one’s day. And, in the support of patients for each other, there is the value of being a carer and advisor as well as a patient.
What good is better? Comparing practices
Indeed, a clear normativity is shaped in each of these practices. The intra-normativity of care practices does, however, not make the strivings to attain something good necessarily good in their outcomes. Whether they can be judged as good practices, depends on the ideals and alternatives with which the outcomes are related—it is, again, a relational question. Is monitoring better than web camming, or the other way around? How to argue for one position or the other? A first way is to compare practices and their intra-normativities.
The value of enhancing professional control, for instance, seems to be directly contradictory to values of responsible patients. There are, however, situations where more intense professional care might be legitimate. I observed a practice of palliative care for oncology patients whose problem was that they suffered from side-effects from chemo therapy, but did not turn to their nurses and doctors for help. This notwithstanding the good possibilities for treating side-effects such as nausea and pain. Intensifying contacts and professional surveillance through telecare fitted with the aims of this practice and its idea of good patient care. Patients did not have to learn to be self-supporting at the end of their lives, but were rather seen as in need of proper treatment by professionals, and as entitled to live the last part of their lives as comfortably as possible.
For the COPD and heart failure patients this was different. It seems that intensified professional control could keep patients out of the hospital, at least for a while. Yet there are worries, too, for instance about the desirability of professional surveillance, or the sense, feasibility and burden of daily measurements. The relation between telecare and other forms of self care is also a concern, as is the reduced responsibility of the patients. Increased control by professionals did not give patients new opportunities to develop their practical knowledge, whereas their condition demands that they do this anyway. Telecare devices cannot take disease away. They do not cook or carry people from one place to another. For people with COPD or heart failure it is never an option to ‘leave it all to the professionals’ or to their devices. They will always have to take part in their own care. The question is how they may do this best.
However, to put ‘care for symptoms’ in the foreground, as happened in the monitoring practices, runs the risk of framing this version of problems as the most relevant. Patients may appreciate this, but it may frustrate the capacity for the self care that patients have to engage in anyway. The daily battles with salt-free diet and reduced fluid intake melted into the (professional) background in the version of the trouble defined by the monitoring devices, even when it was still a central concern for patients. For the COPD patients, crises were also relevant, and they found it particularly hard to decide when to go to the doctor or take medication. They consulted each other for this. Yet their day-to-day worries were about how to keep moving and do meaningful things when they are quickly out of breath. These problems have a huge impact on the quality of daily life, even though they may fall outside narrow medical definitions of treatment. So it seems the support of exchanges with fellow patients and their sharing and developing of practical knowledge is an interesting option for patients with a chronic disease who will have to take an active part in their own care.
The question what is a good or best care practice hence needs specification (what values? for whom?) that can be made by comparing values and contexts. Another way of thinking about what would be good to do is to bring in values from other practices. There was, for instance, the value of efficiency, as part of the politician’s dream that telecare had to fulfill. Did their dream come true? In Mrs. Jansen’s monitoring practices, the relations between her and her nurse were intensified by making them more frequent by assigning more extensive responsibilities to the nurse than before, such as signaling trouble. Rather than shifting care burdens from professionals to patients, efficiency is sought in a financial—and an assumed health- gain of preventing hospitalization. One could argue that this is an increase in the patients’ quality of life, but not in the efficient use of health care personnel, because of the increased contact frequency (extra nurses are hired to check daily measurements, where patients used to come in for routine checks every 3 or 4 months). In the webcam practice of Mrs. Jaspersen this is different. A ‘caring community’ of patients looking after each other emerged. They were not made dependent on professional care. They experienced this type of care as of high quality and it is relatively cheap in terms of the burden on professional caregivers. Befriended patients are great ‘low threshold’ carers for their peers, and their friendship and shared needs provide reciprocal relations and continuity in care. Their lived through experiences are the source for finding homey solutions to deal with breathlessness professionals may not always provide or know about. In terms of reducing the burden on health care professionals, this practice seems to be the most efficient one.
Recommendations as relational suggestions
A comparison between practices and policy values suggests what may be good or better ways to care. However, relationality is key again when it comes to the question of what is best to do somewhere. The results of the empirical ethical analysis are not prescriptive (‘we should all use webcams’) but suggestive to those engaged in concrete care practices (‘these are arguments in favour of one or the other way of caring’). These suggestions need to be translated to see if they may fit with the complex intra-normativity of practices where they might be put to new use. It is the field parties and the concerned others who will have to bring their arguments and ways of weighing values into the debate, or, more importantly, put them into practice, to re-localize the devices (Pols 2013). The practical knowledge (intra-knowledge) and intra-normativity of the participants have been articulated in the analyses, but any recommendations will have to be re-localized in other, different intra-normativities and practical restrictions. Carers and patients will have to adopt new ideas and devices, by seeing sense in them, feeling motivated to use them without being blocked by environmental or other barriers. Learning about experiences elsewhere will help them do this, so they do not have to re-invent the wheel, but are supported in translating findings to their own practices. Innovative practices are practices of tinkering, of making devices fit in caring routines, and with the needs of their users (Winance 2010). An empirical ethics of care aims to facilitate this tinkering by making suggestions and by transporting lessons learnt from other practices.
The end-users are not the only ones who need to fit things in. An ironical example in the telecare study were the recommendations we made to Dutch policy makers looking for efficient care (Pols, Schermer & Willems, 2010). The decision makers recognized the recommendations, and found the arguments clear and valid. But they could not fit them in the Dutch system of financing health care through the health insurance, and care for wellbeing through the municipality. The support of caring communities where patients are carers did not fit with the financial separation of ‘medical’ and ‘social’ care, not with standing how convincing the argument about efficient roles for health care staff and great quality care. Patients cannot be carers in health care. Our ‘great solutions’ did not fit.
The intra-normativity of research practices
The empirical ethics analyses showed the intertwinement of facts and normative appreciations, of ‘oughts that are’, and of knowing and normatively shaping an object of research. They cannot be separated, but go together whenever a care practice is shaped or studied. This means there are parallels between the practices of conducting ethnography and practicing care. Both the ethnographer and the carer try to find ways to understand, articulate and relate to the object of their concern, be it by applying band-aids or by being concerned with the workings and improvements of care practices.
Relationality in the research process
Relationality in empirical research hence reflects back on the research process itself. In quantitative health research this influencing of one’s object is often thought of as subjective, a bad that positivists want to escape from. When the framing of one’s object is analyzed as an unavoidable normative act rather than an act of subjective transgression, however, researchers may be asked to hold themselves accountable for the way they shape their research questions as well as the tools they use to answer them. These intra-normative decisions may be critically analyzed. We may start questioning whether, say, statistics provide the right methods for studying particular objects, such as innovative telecare practices. These methods do not fit well, because statistics need variables that are defined at the start of the study, while the users are still busy shaping these in their practices (Pols 2012). Moser (2010) quotes a quantitative researcher who, in his desperation about how to study care for people with dementia rather than the effectivity of medication, wondered if he should start ‘counting tears’. This will not be as useful as using ethnographic methods to learn about what it means to live with Alzheimer’s disease or to care for people suffering from it. It is the same as with the telecare devices: different methods articulate different objects, suggesting different ways of dealing with these objects.
Care ethics for research
The acts of knowing and being normative are inseparable after the empirical turn in philosophy. A relational approach to the study of care practices challenges us to formulate intra-normative suggestions for good research. A practice of good research carefully and unobtrusively, yet persistently and analytically attempts to articulate (re-scribe) the object of research in a normatively meaningful way. In my telecare study I tried to articulate the experimental, pioneering practices as small political arenas in which micro societies are shaped, by deliberation, but also by doing, by switching off noisy devices or using helpful ones. People and devices direct each other and each tries to ‘act back’ at the other in order to establish a workable, livable, or even a good situation. There is room for resistance and creativity in each of these practices. Patients did not check their figures on the television, but trusted their nurses to call them if something is wrong. Webcams seduced people to contact each other about disease in daily life, but people used them to discuss many other things as well. Making these activities explicit as attempts to establish good ways of dealing with diseases and devices is a way of ‘creating a voice’ for the end-users.7 Hard working nurses and frail elderly are notoriously difficult to organize ‘around the table’. Attending to what they do, and how this expresses their practical knowledge and normative solutions is a way of making them heard. Not as autonomous spokespersons, but as the relational beings an empirical ethics wants to articulate.
The classic reference is to Beauchamp and Childress (2002).
Some care ethics take the mother-child relation as exemplary (Noddings 1984). Other kinds of caring relations have dynamics that differ from the professional caring relation. See for instance studies in care for animals (Folker et al. 2009), for the dynamics of care at home rather than in the hospital (Milligan 2009); for older people Ceci et al. (2011); care for patients in combination with training doctors (Wallenburg et al. 2013); and care by managers (Grit 2004) or for science (Puig de la Bellacasa 2011).
This is the fruit of two 3 year projects. The research started in 2005 with a grant from NWO, The Netherlands Organisation for Scientific Research, from the program Ethics, Research and Policy: Care at a distance. A normative investigation into telecare. The second project was called EFORTT, a research program funded by the European Community, seventh Framework program: Ethical Frameworks for Telecare Technologies for older people at home.
This is a good example of the re-scribing of one’s object of research right away. By turning the stories and practices of many into two narratives, I hope to bring the cases to life for the reader, at the cost of particular nuances and perspectives, and at the favour of others.
Different from Schicktanz et al. (2012) I do not see this as a correction of a lack of epistemological grounds for ‘making ethicists speak’, but as a way of showing the complexity of making weak voices heard.
A word of thanks to the ‘Philosophy of Care’ group for their comments and suggestions, and to the two anonymous reviewers for the journal for their constructive feedback. The work on empirical ethics in care is a collective project, for which I thank Dick Willems, Ingunn Moser, Hilde Thygesen, Annemarie Mol, Daniël Lopez, Juan Carlos Aceros, Miquel Domenech, Christine Ceci and Mary Ellen Purkis.
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