Victims of disaster suffer, not only at the very moment of the disaster, but also years after the disaster has taken place, they are still in an emotional journey. While many moral perspectives focus on the moment of the disaster itself, a lot of work is to be done years after the disaster. How do people go through their suffering and how can we take care of them? Research on human suffering after a major catastrophe, using an ethics of care (...) perspective, is scarce. People suffering from disasters are often called to be in distress and their emotional difficulties ‘medicalised’. This brings them often into a situation of long term use of medication, and one can wonder if medication is of help to them in the long run. In our paper, we will explore another moral perspective, focusing on the importance of the victims’ narrative and their lived experiences. We will use Paul Ricoeur’s phenomenological reflections from ‘Suffering is not the same as pain’ for conceptualizing human suffering and how to apply it to victims of disaster. Ricoeur suggests that suffering is not a quantity that can be measured, but a characteristic that should be studied qualitatively in interpersonal and narrative contexts. Above all, the perspective of care and listening could offer an opportunity to reconcile people from their loss and suffering. (shrink)

The purpose of this article is to illustrate moral learning in persons with a psychiatric disability who participated in a nursing intervention, called the photo-instrument. This intervention is a form of hermeneutic photography. The findings are based on a multiple case study of 42 patients and additional interviews with eight of them. Photo groups were organized within three settings of psychiatric services: ambulatory as well as clinical, all situated in the Netherlands. Data were analysed according to hermeneutic and semiotic principles. (...) Two cases are presented. Findings show that voice and face are concepts that help to identify elements of moral learning in the rehabilitation process of persons with a psychiatric disability. During the process patients become more aware of their responsibilities towards themselves and others. (shrink)

We argue for the addition of trauma informed awareness, training, and skill in clinical ethics consultation by proposing a novel framework for Trauma Informed Ethics Consultation (TIEC). This approach expands on the American Society for Bioethics and Humanities (ASBH) framework for, and key insights from feminist approaches to, ethics consultation, and the literature on trauma informed care (TIC). TIEC keeps ethics consultation in line with the provision of TIC in other clinical settings. Most crucially, TIEC (like TIC) is systematically sensitive (...) to culture, history, difference, power, social exclusion, oppression, and marginalization. By engaging a neonatal intensive care ethics consult example, we define our TIEC approach and illustrate its application. Through TIEC we argue it is the role of ethics consultants to not only hold open moral spaces, but to furnish them in morally habitable ways for all stakeholders involved in the ethics consultation process, including patients, surrogates, and practitioners. (shrink)

Empirical research in bioethics has developed rapidly over the past decade, but has largely eschewed the use of technology-driven methodologies. We propose “design bioethics” as an area of conjoined theoretical and methodological innovation in the field, working across bioethics, health sciences and human-centred technological design. We demonstrate the potential of digital tools, particularly purpose-built digital games, to align with theoretical frameworks in bioethics for empirical research, integrating context, narrative and embodiment in moral decision-making. Purpose-built digital tools can engender situated engagement (...) with bioethical questions; can achieve such engagement at scale; and can access groups traditionally under-represented in bioethics research and theory. If developed and used with appropriate rigor, tools motivated by “design bioethics” could offer unique insights into new and familiar normative and empirical issues in the field. (shrink)

In an age of professionalization and specialization, the practice of clinical ethics is facing an identity crisis. Are clinical ethicists moral experts, ethics experts, or merely quasi-lawyers giving legal advice? Are they extensions of the hospital, always working to advance the hospital’s interests? Or is there another option? Since 1998, when the American Society for Bioethics and Humanities first issued its Core Competencies for Healthcare Ethics Consultation, there has been debate about the role of standardization and proceduralism in clinical ethics (...) consultation. Now, as ASBH continues to move forward with its credentialing program, proceduralism in clinical ethics must be critically examined. In this paper, I argue that the proceduralist approach to clinical ethics consultation, as espoused by the ASBH’s call for credentialing, creates a demeaning experience for all parties involved and precludes goods internal to the practice of clinical ethics consultation from being actualized. As a practice embedded in medicine and in institutions such as the hospital, clinical ethics consultation must define and examine its own goods in order to bring about more than a sterile, law-like solution to difficult moral quandaries, as these sterile solutions leave patients, families, and providers unsatisfied, abandoned, and disappointed. Thus, in an effort to push back against this proceduralism in clinical ethics consultation, I will offer a preliminary exploration of what these goods might be. (shrink)

The ethics of hope has often been understood as a conflict between duties: do not lie versus do not destroy hope. However, such a way of framing the ethics of hope may easily place healthcare professionals at the side of realism and patients at the side of hope. That leaves unexamined relational dimensions of hope. The objective of this study was to describe a relational ethics of hope based on the perspectives of palliative care patients, their family members and their (...) healthcare professionals. A qualitative longitudinal method based on narrative theories was used. Semi-structured interviews on hope were conducted with twenty-nine palliative care patients, nineteen friends or family members, and fifty-two healthcare professionals, which were recorded and transcribed. Data on hope were thematically analyzed. The researchers wrote memos and did member checking with participants. When participants spoke about hope, they referred to power and empowerment, like the powerful bonding of hope between patients and physicians. They also associated hope with the loss of hope and suffering. Several participating healthcare professionals tried to balance both sides, which involved acknowledgment of hope and suffering. Hope and power were reflected in the ethical concept of empowerment, whereas suffering and the loss of hope were reflected in the ethical concept of compassion. Empowerment and compassion can be balanced in solicitude. In conclusion, a relational ethics of hope requires solicitude, in which healthcare professionals are able to weigh empowerment and compassion within particular relationships. (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)

Much has been written about the importance of narrative in teaching ethics and humanities to medical students and residents, as well as the value of narratives in clinical care. Relatively little has been said about the essential role of narrative in bioethics consultations. For most consults, the interpretation of narratives is the central moral feature, and the ethics consultant is inevitably one of the narrators. In a recent consult in which I participated, at least three narratives were in play. The (...) medical record itself was a narrative, or really, a variety of narratives. A second distinct narrative was the story of why this case had come to be categorized as an ethical concern for the medical team. A third narrative was the tentative sketch running through my mind as a consultant‐partly factual, partly anticipatory and conjectural, inevitably personal‐about what was going on here. (shrink)

Literature and medicine is a discipline within medical humanities, which challenges medicine to reconfigure its scientific model to become interdisciplinary, and be disciplined by arts and humanities as well as science. The psychological, emotional, spiritual and physical are inextricably linked in people, inevitably entailing provisionality, disturbance and lack of certainty, and lack of closure and therefore of control. Arts and humanities approaches can foster significant interpretive enquiry into illness, disability, suffering, and care. Reflective expressive writing, undertaken and engaged with critically, (...) and particularly when explorative of narrative and metaphor, can enable professionally developmental enquiry into values, ethics, identity and responsibilities. This article offers examples of reflexivity, reflection, and disciplined questioning of the narrative and perspectival nature of medical and healthcare clinicians' experience. Creative writing is a focus, as art can observe and connect from unconventional angles. (shrink)

Cases—be they real or fictional—are commonplace both in the medical ethics literature and in the public media. Cases take on a variety of forms: from streamlined to book length narratives. They also serve a variety of different purposes, from illustration, to decision making, and from debunking to heuristics. Drawing on the rhetorical analysis of « exemplum », I shall describe what cases are, and what their role is in the practice of clinical ethics. I identify two basic ways in which (...) cases can be brought to bear on ethical thinking and practice: a « tamed » and a « wild » way, and show how « wild cases » can serve a useful heuristic function despite their appeal to emotions and their unusual and striking character. In conclusion, I will argue that cases, both in their wild and their tamed form, are not only useful pedagogical tools, but can serve as a legitimate empirical basis for medical ethics. (shrink)