Reinventing the Good Life: An empirical contribution to the philosophy of care

Ever since Adam Smith’s musings on ‘the invisible hand’ became more famous than his work on moral sentiments, social theorists have paid less attention to everyday ethics and aesthetics. Smith’s metaphor of the invisible hand posits that social outcomes emerge by dint of the behaviours of individuals rather than their intentions or virtues. Modernist and scientific approaches to determining the common good or good forms of governance have increasingly relied on techniques of generalisation and rationalisation. This shift has meant that we no longer comprehend why and how people display a deep concern for everyday life values in their social practices. People continue to enact these values and live by them while academics lack the vocabulary and methods to grasp them. By reconstructing the history of ideas about everyday-life values, and by analysing the role of such values in contemporary care practices for patients with chronic disease in the Netherlands, Reinventing the Good Life explores new ways to study the values of everyday life, particularly in situations where the achievement of a clear cut or uniform good is unlikely. The book presents a practice-based epistemology and methodology for studying everyday care practices and supporting their goodness. This analytical approach ultimately aims to generate ideas that will allow us to relate in more imaginative ways to the many pressing concerns that we are forced to live with today

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.</p

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

The Heart of the Matter. About Good Nursing and Telecare

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

Understanding Palliative Cancer Chemotherapy: About Shared Decisions and Shared Trajectories

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

Respiratory Self-Care:Identifying Current Challenges and Future Potentials for Digital Technology to Support People with Chronic Respiratory Conditions

Chronic respiratory conditions (CRCs) are life-long diseases affecting millions of people worldwide. They have a huge impact on individuals’ everyday lives, resulting in a number of physical and emotional challenges. Self-management interventions for CRCs are thought to provide empowerment and improve quality of life. However, despite the number of people living with CRCs, most self-management tools in previous HCI work have been designed without the insight of those affected by the conditions. In this paper, we contribute to the literature by investigating the experiences and everyday challenges faced by those with CRCs, through the involvement of 156 participants via interviews and an anonymous survey. Our findings reveal the self-care challenges of CRCs and the reactive management approaches taken by participants. We conclude by providing a set of design implications that support the design of future self-management tools for CRCs

Enforcing patient rights or improving care? The interference of two modes of doing good in mental health care

New state laws are intended to bring about formal changes. These juridical activities inevitably interfere with the content of care of substantially changing health care practice. The case is argued by means of an analysis of ethnographic material gathered in the long-stay wards of two psychiatric hospitals in the Netherlands. The question raised by the ethnography is which 'mode of doing good', juridical or caring, is relevant to daily practice. A 'mode of doing good' is defined as a pattern of ideals, procedures, routines and knowledge that is oriented towards a specific form of 'good care'. The interference of these different modes of doing good explains the impact of recent juridical changes in Dutch mental health care. The potential tensions between juridical and caring traditions are accommodated in different ways. Either juridical and caring modes resonate and gradually merge into new patterns of day-to-day practice, or there is dissonance and they remain oppositional. Rather than securing patient rights, juridical measures change daily life and work on the wards in far more complex way