Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting.

BACKGROUND: The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial. AIM: To explore how patients and families navigate palliative care and the problems they experience. DESIGN: An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis. SETTING/PARTICIPANTS: Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia. THE ANALYSIS: Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices. CONCLUSIONS: Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.

"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.

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.

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.

Telecare that works: lessons on integrating digital technologies in elder care from Indian transnational families.

In recent decades, policy makers around the world have been working on implementing various technologies into healthcare, and the Covid19 pandemic fueled this process. The specialized technological solutions for telecare - the use of technologies for care at a distance - are often adopted by users in different ways than intended, or are abandoned if the users cannot find applications that are meaningful to them. However, beyond specialized healthcare technologies, people are incorporating mundane digital technologies into their (health)care practices. In this paper, we draw on ethnographic research on the use of everyday digital technologies in Indian families where migrating children who are professional nurses care for their aging parents at a distance. Our findings show that 1) remote elder care is enacted through frequent calling which further fosters trust, necessary to provide healthcare remotely; 2) the motivation for older adults to engage with digital technologies is grounded in the value of family and affect which is consequential also for health; 3) technologies, too, require care-work in the form of everyday maintenance; and 4) in-person visits from children remain important, indicating that hybrid interaction is optimal for good care at a distance. We conclude that taking these findings into account may contribute to a more successful implementation of formal telecare systems.

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.

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.

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.

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.

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.

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.

Ethical implications of home telecare for older people: a framework derived from a multisited participative study.

CONTEXT: Telecare and telehealth developments have recently attracted much attention in research and service development contexts, where their evaluation has predominantly concerned effectiveness and efficiency. Their social and ethical implications, in contrast, have received little scrutiny. OBJECTIVE: To develop an ethical framework for telecare systems based on analysis of observations of telecare-in-use and citizens' panel deliberations. DESIGN: Ethnographic study (observation, work shadowing), interviews, older citizens' panels and a participative conference. SETTING: Participants' homes, workplaces and familiar community venues in England, Spain, the Netherlands and Norway 2008-2011. RESULTS: Older respondents expressed concerns that telecare might be used to replace face-to-face/hands-on care to cut costs. Citizens' panels strongly advocated ethical and social questions being considered in tandem with technical and policy developments. Older people are too often excluded from telecare system design, and installation is often wrongly seen as a one-off event. Some systems enhance self-care by increasing self-awareness, while others shift agency away from the older person, introducing new forms of dependency. CONCLUSIONS: Telecare has care limitations; it is not a solution, but a shift in networks of relations and responsibilities. Telecare cannot be meaningfully evaluated as an entity, but rather in the situated relations people and technologies create together. Characteristics of ethical telecare include on-going user/carer engagement in decision making about systems: in-home system evolution with feedback opportunities built into implementation. System design should be horizontal, 'two-way'/interactive rather than vertical or 'one-way'. An ethical framework for telecare has been developed from these conclusions (Table 1).

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.

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.

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.

Replication studies in the Netherlands: Lessons learned and recommendations for funders, publishers and editors, and universities.

Drawing on our experiences conducting replications we describe the lessons we learned about replication studies and formulate recommendations for researchers, policy makers, and funders about the role of replication in science and how it should be supported and funded. We first identify a variety of benefits of doing replication studies. Next, we argue that it is often necessary to improve aspects of the original study, even if that means deviating from the original protocol. Thirdly, we argue that replication studies highlight the importance of and need for more transparency of the research process, but also make clear how difficult that is. Fourthly, we underline that it is worth trying out replication in the humanities. We finish by formulating recommendations regarding reproduction and replication research, aimed specifically at funders, editors and publishers, and universities and other research institutes.

Through the looking glass: good looks and dignity in care.

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.