The moral expertise of clinical ethicists is not a question of mastering codelike theories and lawlike principles. Rather, ethicists are architects of moral space within the health care setting, as well as mediators in the conversations taking place within that space.

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker’s expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts (...) or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self. (shrink)

The narrative ethicist imagines life as multiple points of view, each reflecting a distinct imagination and each more or less capable of comprehending other points of view and how they imagine. Each point of view is constantly being acted out and then modified in response to how others respond. People generally have good intentions, but they get stuck realizing those intentions. Stories stall when dialogue breaks down. People stop hearing others' stories, maybe because those others have quit telling their stories. (...) The narrative ethicist's job is to help people generate new imaginations that can restart dialogues. (shrink)

Parents’ perception of having no choice and strong emotions like fear about the prospect of living liver donation can lead professionals to question the voluntariness of their decision. We discuss the relation of these experiences (no choice and emotions), as they are communicated by parents in our study, to the requirement of voluntariness. The perceived lack of choice, and emotions are two themes we found in the interviews conducted within the “Living Related Donation; a Qualitative-Ethical Study” research program. As a (...) framework for the interpretation of these themes we discuss views of moral agency. We adopt a view in which relations are seen as constitutive of moral agency. Judging from this view, the perceived lack of choice can best be understood as a sign of commitment. We argue in this article that neither seeing no choice, nor emotions in themselves should be seen as compromises of a voluntary consent. However both experiences draw attention to aspects that are important to come to an evaluation of consent to donation. We discuss the story of one mother as an exemplary case to show how both themes can intertwine. (shrink)

For the past several years patients have been expected to play a key role in their recovery. Self management and disease management have reached a hype status. Considering these recent trends what does this mean for the division of responsibilities between doctors and patients? What kind of role should healthcare providers play? With findings based on a qualitative research project of an innovative practice for people with Chronic Obstructive Pulmonary Disease (COPD) we reflect on these questions. In-depth interviews conducted with (...) people with COPD, physiotherapists and a pulmonologist show that shifting responsibilities require a supportive attitude from healthcare providers and a dialogical communication between patients and professionals. Our findings show more is needed in order to motivate people with COPD to take responsibility and become co-owners in a process of recovery. The case example illustrates that people with COPD need support from fellow patients to learn to accept their disabilities. Awareness that COPD is more than just a lack of air, that mind and body interact, is a first step to investigate other potential problems and to enhance one’s quality of life. (shrink)

ABSTRACT This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well‐being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical (...) perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family‐member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are. (shrink)

Once upon a time, medicine dismissed narrative as unimportant and uninteresting. Then, in the late 1980s, physicians and scholars became interested in how the study of narrative could enhance our understanding of illness and health care, and the field that came to be known as “narrative medicine” developed. Some of this scholarly activity focused on the idea of narrative ethics.After a flurry of activity around the turn of the twenty‐first century, narrative ethics seemed to stall. The general interest in narrative (...) in medicine continued but with few new ideas on how one might use narrative toward ethical ends. In the last few years, however, forward momentum has returned. The timing seems appropriate, therefore, for a “state of the field” report of sorts. (shrink)