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. (shrink)

Dignity is a fundamental concept, but its meaning is not clear. This paper attempts to clarify the term by analysing and reconnecting two meanings of dignity: humanitas and dignitas. Humanitas refers to citizen values that protect individuals as equal to one another. Dignitas refers to aesthetic values embedded in genres of sociality that relate to differences between people. The paper explores these values by way of an empirical ethical analysis of practices of washing psychiatric patients in nursing care. Nurses legitimate (...) the washing of reluctant patients with reference to dignity. The analysis shows the intertwinement of humanitas and dignitas that gives dignity its fundamental meaning. (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different from (...) or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

This paper articulates dignity as relational engagement in concrete care situations. Dignity is often understood as an abstract principle that represents inherent worth of all human beings. In actual care practices, this principle has to be substantiated in order to gain meaning and inform care activities. We describe three exemplary substantiations of the principle of dignity in care: as a state or characteristic of a situation; as a way to differentiate between socio-cultural positions; or as personal meaning. We continue our (...) analysis by presenting cases on dignity in care related to us in focus groups with medical professionals. Our empirical ethical lens is in this paper is to analyse, not the meaning of dignity, but the way in which it emerges in practices where it is pursued, within relationships between people, technologies, places, regulations, and the values cherished by or embedded in them. We show that professional caregivers recognize in the dignity of the person they care for their own dignity; giving up on the one implies no less than giving up on the other. This ‘mirrored experience’ of dignity expresses itself in professional’s engagement with the situation. The value of this engagement, we argue, lies not primarily in realizing the particular content of the values at stake. We point to the importance of engagement itself, even if the values engaged with cannot be realized to the full, and even if competing versions of dignity are at stake simultaneously. In this way the caregivers provide us with interesting examples of moral actorship in situations of conflicting values. (shrink)

The “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express themselves verbally. Another problem is (...) that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”. (shrink)

Nurses and ethicists worry that the implementation of care at a distance or telecare will impoverish patient care by taking out ‘the heart’ of the clinical work. This means that telecare is feared to induce the neglect of patients, and to possibly hinder the development of a personal relation between nurse and patient. This study aims to analyse whether these worries are warranted by analysing Dutch care practices using telemonitoring in care for chronic patients in the Netherlands. How do clinical (...) practices of nursing change when telecare devices are introduced and what this means for notions and norms of good nursing? The paper concludes that at this point the practices studied do not warrant the fear of negligence and compromised relations. Quite the contrary; in the practices studied, telecare lead to more frequent and more specialised contacts between nurses and patients. The paper concludes by reflecting on the ethical implications of these changes. (shrink)

Discussing the workings of technology in care as aesthetic rather than as ethical or epistemological interventions focusses on how technologies engage in and change relations between those involved. Such an aesthetic study opens up a repertoire to address values that are abundant in care, but are as yet hardly theorized. Kamphof studies the problem that sensor technology reveals things about the elderly patients without the patients being aware of this. I suggest improvement of these relations may be considered in aesthetic (...) terms, for instance by developing the affective quality of people’s technological relationships. (shrink)

This article analyzes how the recent call for accounting in health care interferes with daily care practice and raises the question of how accounting practices relate to the aim of good care. The most influential accounting methods in the Netherlands suggest ways for professionals to legitimize their activities. The analysis of washing patients in long-term mental health care shows that different styles of accounting evaluate and legitimize care while structuring notions of what good care is. A specific style of accounting (...) enforces certain values but does not tell about the tragic or unexpected effects that come with it, nor does it provide a repertoire to deal with these. Thus, care practices incorporating specific styles of accounting remain dependent on forms of care that are not accountable or ask for new forms of reflexivity. (shrink)

BackgroundThe emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD).AimExplore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD).MethodsSemi-structured, future scenario-based (...) interviews were conducted among patients who had either an ICD and/or a heart condition with increased risk of SCD in Germany (n = 9) and the Netherlands (n = 15). We used the principles of the European Commission’s Ethics Guidelines for Trustworthy AI to structure the interviews.ResultsSix themes arose from the interviews: the ability of AI to rectify human doctors’ limitations; the objectivity of data; whether AI can serve as second opinion; AI explainability and patient trust; the importance of the ‘human touch’; and the personalization of care. Overall, our results reveal a strong desire among patients for more personalized and patient-centered care in the context of ICD implantation. Participants in our study express significant concerns about the further loss of the ‘human touch’ in healthcare when AI is introduced in clinical settings. They believe that this aspect of care is currently inadequately recognized in clinical practice. Participants attribute to doctors the responsibility of evaluating AI recommendations for clinical relevance and aligning them with patients’ individual contexts and values, in consultation with the patient.ConclusionThe ‘human touch’ patients exclusively ascribe to human medical practitioners extends beyond sympathy and kindness, and has clinical relevance in medical decision-making. Because this cannot be replaced by AI, we suggest that normative research into the ‘right to a human doctor’ is needed. Furthermore, policies on patient-centered AI integration in clinical practice should encompass the ethics of everyday practice rather than only principle-based ethics. We suggest that an empirical ethics approach grounded in ethnographic research is exceptionally well-suited to pave the way forward. (shrink)

How do technologies such as webcams influence health care and what concepts may describe this? This article explores the literature and analyses what people looking through webcams do within a particular health care practice in the Netherlands, that is, within the rehabilitation of people suffering from severe chronic obstructive pulmonary disease or asthma. Several ways to describe the activities webcams support and perform are identified. The webcam is concentrating the activities of its users, by making them focus on the task (...) at hand and magnifies the characteristics of the already existing relationships between webcam users by imposing a relational distance that fits best with intimate contacts. Although webcams shift notions of space and distance, their working appears to be related, to a great extent, to their location. (shrink)

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 semi-structured interviews. We analysed three (...) characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process. (shrink)

There are roughly two meanings attached to the concept of dignity: humanitas and dignitas. Humanitas refers to ethical and juridical notions of equality, autonomy and freedom. Much less understood is the meaning of dignitas, which this paper develops as peoples’ engagement with aesthetic values and genres, and hence with differences between people. Departing from a critical reading of Georgio Agamben’s notion of ‘bare life’, I will analyze a case where aesthetics are quite literally at stake: women who lost their hair (...) due to cancer treatment. The analysis shows a complicated interplay between varying evaluations of female baldness by the self and others, mediated by (often strongly negative) cultural imaginaries, and aesthetic genres depicting conventional ways of ‘looking good’. The paper concludes by arguing for a reconnection of the two notions of dignity, and for a rehabilitation of aesthetics in daily life and care as fundamental values for organizing our societies. (shrink)