Making things specific: towards an anthropology of everyday ethics in healthcare.

This paper is the English translation and adaptation of my inaugural lecture in Amsterdam for the Chair Anthropology of Everyday Ethics in Health Care. I argue that the challenges in health care may look daunting and unsolvable in their scale and complexity, but that it helps to consider these problems in their specificity, while accepting that some problems may not be solved but have become chronic. The paper provides reflections on how to develop a scientific approach that does not aim to eradicate bad things but explores ways in which to live with them. Crucial in this quest is the attention to how we conceptualize problems, and whether this is specific enough for addressing present day concerns. I propose an anthropology of everyday ethics as a way to study people's everyday ways of handling a variety of goods in practice. I draw specific attention to exploring aesthetic values in everyday life amongst these, values that are used abundantly to qualify events in everyday life but rarely theorized in philosophy or social science.

Ethical use of artificial intelligence to prevent sudden cardiac death: an interview study of patient perspectives.

BACKGROUND: The 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). AIM: Explore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD). METHODS: Semi-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. RESULTS: Six 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. CONCLUSION: The '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.

"Tie your camel first, then rely on God": reconceptualizing Javanese Islamic values to support palliative care at home.

BACKGROUND: In the last decade, there has been a growing concern to make palliative care more culturally sensitive and contextually appropriate. This concern is also relevant in Indonesia, where the progress of palliative care, particularly in home-based care, has been slow. Like elsewhere in the world, there has been a growing awareness of the importance of shifting from a curative orientation towards a palliative one, especially in cases where further medical treatment is futile. In this paper we argue that the development of palliative care practices would benefit greatly from learning about the values that are important for patients, families, and health professionals. It is important to understand these values to support forms of care that aim to enhance quality of life. To demonstrate this, we analyse the care values people in rural Java evoke in their home palliative care practices. METHODS: We conducted an eight-month ethnographic study involving forty-nine patients, families, and health professionals. RESULTS: We identified three specific Javanese Islamic values: making an effort (ikhtiar), being sincere (ikhlas), and being in a state of surrender (pasrah). These values influenced the participants' activities in a palliative care setting. Based on our findings, we suggest three strategies to incorporate these values into palliative care practices and to better facilitate palliative care's integration into Javanese Muslim communities. The first strategy is to include efforts to reduce suffering and improve the quality of life using the concept of ikhtiar. The second strategy is to foster sincerity (ikhlas) to help patients and families accept the realities of their condition and provide care for patients at home. The last strategy is to clarify that palliative care is not synonymous with 'giving up' but can be seen as an act of pious surrender. CONCLUSIONS: Our study identified three Islamic-Javanese values that can be incorporated to strategies aiming at enhancing palliative care practices, resulting in care focused on improving quality of life rather than futile attempts at a cure.

Uncertainty Work: Dealing with a Psychiatric Crisis in Two European Community Mental Health Teams.

The quest for how to deal with a crisis in a community setting, with the aim of deinstitutionalizing mental health care, and reducing hospitalization and coercion, is important. In this article, we argue that to understand how this can be done, we need to shift the attention from acute moments to daily uncertainty work conducted in community mental health teams. By drawing on an empirical ethics approach, we contrast the modes of caring of two teams in Utrecht and Trieste. Our analysis shows how temporality structures, such as watchful waiting, are important in dealing with the uncertainty of a crisis.

mHealth technologies for pregnancy prevention: A challenge for patient-centred contraceptive counselling in Dutch general practice.

BACKGROUND: A general practitioner (GP) standardly provides contraceptive counselling and care in the Netherlands. Recent years have seen the rise of mobile health technologies that aim to prevent pregnancy based on fertility awareness-based methods (FABMs). We lack high-quality evidence of these methods' effectiveness and clarity on how healthcare professionals include them in contraceptive counselling. OBJECTIVES: To analyse how Dutch healthcare professionals include pregnancy-prevention mobile health technologies (mHealth contraception) in contraceptive counselling and to propose practice recommendations based on our findings. METHODS: We used ethnographic methods, including semi-structured interviews with nine professionals who were recruited using purposive sampling, 10 observations of contraceptive counselling by four professionals, six observations of teaching sessions in medical training on contraception and reproductive health, one national clinical guideline, and seven Dutch patient decision aids. Data were collected between 2018 and 2021 and analysed inductively using praxiographic and thematic analysis. RESULTS: In contraceptive counselling and care, professionals tended to blend two approaches: 1) individual patient-tailored treatment and 2) risk minimisation. When interviewed about mHealth contraception, most professionals prioritised risk minimisation and forewent tailored treatment. Some did not consider mHealth contraception or FABMs as contraceptives or deemed them inferior methods. CONCLUSION: To minimise risk of unintended pregnancy, professionals hesitated to include mHealth contraception or other FABMs in contraceptive consultations. This may hamper adequate patient-centred counselling for patients with preference for mHealth contraception.Based on these results, we proposed recommendations that foster a patient-tailored approach to mHealth contraceptives.

KEY MESSAGESPrioritisation of risk minimisation precluded professionals from including FABMs and mHealth contraception in their counselling.For patient-centred counselling, professionals need differentiated information about FABM use and effectiveness through adequate guidelines and training.

Frying eggs or making a treatment plan? Frictions between different modes of caring in a community mental health team.

In this article, we conduct an empirical ethics approach to unravel the different perspectives on good care that are present in a community mental health team (CMHT) in Utrecht. With the deinstitutionalisation of mental health care, the importance of a close collaboration between the social and medical domains of care on the level of the local community is put in the foreground. Next to organisational thresholds or incentives, this collaboration is shaped by different notions of what good mental health care should entail. Using the concept of modes of ordering care (Moser 2005), we describe five modes of ordering mental health care that are present in the practice of the CMHT: the medical specialist, the juridical, the community, the relational and the bureaucratic perspective. These different modes of ordering care lead to frictions and misunderstandings, but are mutually enhancing at other times. Unravelling these different modes of ordering care can facilitate collaboration between professionals of different care domains and support a mutual understanding of what needs to be done. More so, the analysis foregrounds that ordering care from a relational approach is important in daily practice, but is in need of stronger legitimation.

"Caring for a Crisis": Care and Control in Community Mental Health.

In the debate on coercion in psychiatry, care and control are often juxtaposed. In this article we argue that this dichotomy is not useful to describe the more complex ways service users, care professionals and the specific care setting interrelate in a community mental health team (CMHT). Using the ethnographic approach of empirical ethics, we contrast the ways in which control and care go together in situations of a psychiatric crisis in two CMHT's: one in Trieste (Italy) and one in Utrecht (the Netherlands). The Dutch and Italian CMHT's are interesting to compare, because they differ with regard to the way community care is organized, the amount of coercive measures, the number of psychiatric beds, and the fact that Trieste applies an open door policy in all care settings. Contrasting the two teams can teach us how in situations of psychiatric crisis control and care interrelate in different choreographies. We use the term choreography as a metaphor to encapsulate the idea of a crisis situation as a set of coordinated actions from different actors in time and space. This provides two choreographies of handling a crisis in different ways. We argue that applying a strict boundary between care and control hinders the use of the relationship between caregiver and patient in care.

Patient and proxies' attitudes towards deferred consent in randomised trials of acute treatment for stroke: A qualitative survey.

Introduction: Deferral of consent for participation in a clinical study is a relatively novel procedure, in which informed consent is obtained after randomisation and study treatment. Deferred consent can be used in emergency situations, where small therapeutic time windows limit possibilities for patients to provide informed consent. We aimed to investigate patients' or their proxies' experiences and opinions regarding deferred consent in acute stroke randomised trials. Patients and methods: For this qualitative study, Dutch Collaboration for New Treatments of Acute Stroke (CONTRAST) trial participants were selected. Study participants were either patients or their proxies who provided consent and were selected with theoretical sampling based on patient characteristics. Semi-structured interviews were conducted face-to-face or by telephone. Themes and subthemes were iteratively defined. Results: Twenty of the 23 interviewed participants (16 patients and 7 proxies) considered deferred consent acceptable. The received study treatment and consent conversation were remembered by 18 participations, although the concept of randomisation and treatment comparison were generally not well understood. Sixteen participants felt capable of overseeing the decision to give deferred consent. Distress in the first days after stroke, lack of understanding and neurological deficits were reasons for feeling incapable of providing consent. Four participants would have preferred a different timing of the consent conversation, of whom two prior to treatment. Conclusion: Our study found that deferred consent was considered acceptable by most study participants who provided consent for acute stroke randomised trials. Though they felt capable, the recall and comprehension of consent were overall limited.

Working on and with Relationships: Relational Work and Spatial Understandings of Good Care in Community Mental Healthcare in Trieste.

Deinstitutionalization is often described as an organizational shift of moving care from the psychiatric hospital towards the community. This paper analyses deinstitutionalization as a daily care practice by adopting an empirical ethics approach instead. Deinstitutionalization of mental healthcare is seen as an important way of improving the quality of lives of people suffering from severe mental illness. But how is this done in practice and which different goods are strived for by those involved? We examine these questions by giving an ethnographic description of community mental health care in Trieste, a city that underwent a radical process of deinstitutionalization in the 1970s. We show that paying attention to the spatial metaphors used in daily care direct us to different notions of good care in which relationships are central. Addressing the question of how daily care practices of mental healthcare outside the hospital may be constituted and the importance of spatial metaphors used may inform other practices that want to shape community mental health care.

Making sense with numbers. Unravelling ethico-psychological subjects in practices of self-quantification.

Prevention enthusiasts show great optimism about the potential of health apps to modify peoples' lifestyles through the tracking and quantification of behaviours and bodily signs. Critical sociologists warn for the disciplining effects of self-tracking. In this paper we use an empirical ethics approach to study the characteristics and strivings of the various types of 'ethico-psychological subjects' that emerge in practices of self-quantification by analysing how people and numbers relate in three cases of self-quantification: in prevention discourse, in testimonies from the quantified self (QS) movement and in empirical work we did with people with Diabetes type I and with 'every day self-trackers'. We show that a free subject that needs support to enact its will is crucial to understand the optimism about prevention. In the QS-movement the concern is with a lack of objective and personalised knowledge about imperceptible processes in the body. These subjects are decentered and multiplied when we trace how numbers in their turn act to make sense of people in our empirical study. We conclude that there are many different types of ethico-psychological subjects in practices of self-tracking that need to be explored in order to establish what good these practices of self-quantification might do.

Hypertension management: experiences, wishes and concerns among older people-a qualitative study.

OBJECTIVES: Sixty-five per cent of older people have hypertension, but little is known about their preferences and concerns regarding hypertension management. Guidelines on hypertension lack consensus on how to treat older people without previous cardiovascular disease (CVD). This asks for explicit consideration of patient preferences in decision making. Therefore, the aim of this study was to explore older peoples' experiences, preferences, concerns and perceived involvement regarding hypertension management. DESIGN: Qualitative interview study. SETTING: Participants were selected from 11 general practitioner (GP) practices in the Netherlands and purposively sampled until data saturation was achieved. Semistructured interviews were conducted, audio recorded and analysed by two researchers using thematic analysis. PARTICIPANTS: Fifteen community dwelling older people aged 74-93 years with hypertension and without previous CVD participated. RESULTS: Interviewees rarely started the conversation about hypertension management with their GP, although they did have concerns. Reasons for not discussing the subject included low priority of hypertension concerns, reliance on GPs or trust in GPs to make the right decision on their behalf. Also, interviewees anticipated regret of reducing medication, fearing vascular incidents. Interviewees would like to discuss tailoring treatment to their needs, deprescription of medication and ways to reduce side effects. They expected GPs to be more transparent on treatment effects. CONCLUSION: Older people describe having little involvement in hypertension management, although they have several concerns. Since GPs are also known to be hesitant to bring up this subject, we signal a conspiracy of silence about antihypertensive medication. Through breaking this silence, GPs can facilitate shared decision-making on hypertension management and better tailored care.

The particularity of dignity: relational engagement in care at the end of life.

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.

The Limits of Autonomy: Ideals in Care for People with Learning Disabilities.

In the Netherlands, autonomy is a key ideal in visions of care for people with learning disability. This ideal can lead to tension when clients, in the opinion of their caregivers, overuse alcohol or drugs. In this article, we analyze how professional caregivers understand the ideal of autonomy in care for people with learning disability, and articulate the tacit attempts of caregivers to provide "good care," which can be understood as care for relationships. This relational view includes caregivers, care recipients, and their networks and infrastructures in the vision of care.

How to Make Your Relationship Work? Aesthetic Relations with Technology.

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.

Good relations with technology: Empirical ethics and aesthetics in care.

This article is a written version of the lecture for the IPONS conference in Stockholm. The article starts from the claim that there is no such thing as technology, only different variations of technologies. These technologies, plural, all have their specific workings that we can only learn about by studying these empirically, by analysing the relations between people and their technologies. These relations are always unpredictable, as it is not given beforehand what values the participants pursue. Studying and understanding the workings of healthcare technology is a crucial task for nursing studies, as nurses are often key actors in making these devices work. The article hands the reader some tools to engage in the study of technologies in practice, using an empirical ethics approach.

Diagnosing dementia in Dutch general practice: a qualitative study of GPs' practices and views.

BACKGROUND: GPs play an important role in recognising the symptoms of dementia; however, little is known about how they perceive their actual and future role in diagnosing dementia. AIM: To explore Dutch GPs' perceptions of their current position in diagnosing dementia, their reasons for referral to secondary care, and views on the future diagnostic role of GPs. DESIGN AND SETTING: A qualitative study among Dutch GPs. METHOD: Eighteen GPs participated in a semi-structured interview that ranged from 20 to 60 minutes. Interviews were transcribed verbatim and thematic analysis was performed. RESULTS: GPs reported that their role in the diagnostic phase of identifying people with suspected dementia is limited to recognising cognitive problems and deciding whether a patient needs to be referred for further investigation, or whether care could be organised without specialist diagnosis. GPs indicated that they were likely to refer patients if patients/caregivers or dementia case managers requested it, or if they thought it could have consequences for treatment. Typically, GPs do not see the need for referral when their patients are very old and declining slowly. GPs would welcome a more prominent role in diagnosing dementia in their own practice. CONCLUSION: Diagnosing dementia involves a complex balance between patient and carer preferences, the consequences for treatment and care, and the burden of referral. Dutch GPs favour a stronger involvement in diagnosing dementia provided that both resources and diagnostic algorithms are improved.

A Matter of Taste? Quality of Life in Day-to-Day Living with ALS and a Feeding Tube.

Although people often refer to quality of life and there is a respectable research tradition to establish it, the meaning of the term is unclear. In this article we qualitatively study an intervention of which the quantitative effects are documented as indecisive. We do this in order to learn more about what the meaning of the term quality of life means when it is studied in daily life. With the help of these findings we reflect on the intricacies of objectifying and measuring quality of life using quantitative research designs. Our case is the feeding tube for patients suffering from ALS, a severe motor neuron disease that rapidly and progressively incapacitates patients. We studied how these patients, who lived in the Netherlands, anticipated and lived with a feeding tube in the course of their physical deterioration. Our analysis shows that the quality of life related to the feeding tube has to be understood as a process rather than as an outcome. The feeding tube becomes a different thing as patients move through the various phases of their illness, due to changes in their condition, living circumstances, and concerns and values. There are very different appreciations of the way the feeding tube changes the body's appearance and feel. Some patients refuse it because they feel it disfigures their body, whereas others are indifferent to its appearance. Our conclusion is that these differences are difficult to grasp with a quantitative study designs because 'matters of taste' and values are not distributed in a population in the same ways as physiological responses to medication. Effect studies assume physiological responses to be more or less the same for everyone, with only gradual differences. Our analysis of quality in daily life, however, shows that what a treatment comes to be and how it is valued shows shows generalities for subgroups rather than populations.

Analyzing Social Spaces: Relational Citizenship for Patients Leaving Mental Health Care Institutions.

"Citizenship" is a term from political theory. The term has moved from the relationship between the individual and the state toward addressing the position of 'others' in society. Here, I am concerned with people with long-term mental health problems. I explore the possibilities of ethnographically studying this rather more cultural understanding of citizenship with the use of the concept of relational citizenship, attending to people who leave Dutch institutions for mental health care. Relational citizenship assumes that people become citizens through interactions, whereby they create particular relations and social spaces. Rather than studying the citizen as a particular individual, citizenship becomes a matter of sociality. In this article, I consider what social spaces these relationships create and what values and mechanisms keep people together. I argue that the notion of neighborhood as a form of community, although built implicitly or explicitly into mental health care policy, is no longer the most plausible model to understand social spaces.

Shining trinkets and unkempt gardens: on the materiality of care.

The increasing use of telecare will profoundly change nursing care. How to understand these changes is, however, far from clear. This is because (i) studies on telecare seldom consider the situation it replaces, and (ii) current concepts and methods used to study the impact of telecare may not allow us to fully grasp these changes. We suggest that an analysis of the changing materiality of care practices is a suitable way to articulate and reflect on possible concerns. It allows us to compare care practices in the same terms before and after telecare has been introduced. To demonstrate this, we study the materiality of the classical care setting, the nursing house call, to map the situation before telecare is introduced. Building on science and technology studies, we apply four categories as heuristics to analyse materiality in care: signs, dis/enablers (or scripted things), tools and practical arrangements. We leave open the question of how material arrangements could or should be matters of concern in nursing care, and instead argue for studies that give insights into the everyday tinkering with the materiality of care that both nurses and patients need to engage in.