Within bioethics, Kant’s conception of autonomy is often portrayed as excessively rationalistic, abstract, and individualistic, and, therefore, far removed from the reality of patients’ needs. Drawing on recent contributions in Kantian philosophy, we argue that specific features of Kantian autonomy remain relevant for medical ethics and for patient experience. We use contemporary end-of-life illness narratives—a resource that has not been analyzed with respect to autonomy—and show how they illustrate important Kantian themes, namely, the duty to know oneself, the interest in (...) elaborating universalizable principles, and the emphasis on ideals as points of orientation that guide behavior without ever being fully realized. As Kant does, the patient-authors discussed here perceive the end of life as a moment to reflect on the constitutive principles which have governed that life, thereby offering a privileged moment to pursue self-knowledge. We argue that bioethical conceptions of autonomy stand to gain if they revise their conception of Kantian moral philosophy as too formal, abstract, and detached from emotions and personal relationships to be helpfully applied. (shrink)

Patients and family members (N = 671) were surveyed in five Mid-Atlantic U.S. hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0–14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the family was (...) able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically, rather than exclusively on a case-by-case basis. (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)

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)

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)

Conversations with patients and families about the allow-natural-death (AND) order, along with the standard do-not-resuscitate (DNR) order during end-of-life (EOL) decision-making, may create engagement and understanding while promoting care that can be defended using enduring notions of autonomy, beneficence, and professional duty. Ethical, legal, and pragmatic issues surrounding EOL care decision-making seem to suggest discussion of AND orders as one strategy clinicians could consider at the individual practice level and at institutional levels. A discussion of AND orders, along with traditional (...) DNR orders is presented. This is followed by argument and counter-argument focused on ethical, legal, and practical issues germane to EOL care decision-making associated with use of AND orders. (shrink)

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

The idea of narrative has been widely discussed in the recent health care literature, including nursing, and has been portrayed as a resource for both clinical work and research studies. However, the use of the term 'narrative' is inconsistent, and various assumptions are made about the nature (and functions) of narrative: narrative as a naive account of events; narrative as the source of 'subjective truth'; narrative as intrinsically fictional; and narrative as a mode of explanation. All these assumptions have left (...) their mark on the nursing literature, and all of them (in our view) are misconceived. Here, we argue that a failure to distinguish between 'narrative' and 'story' is partly responsible for these misconceptions, and we offer an analysis that shows why the distinction between them is essential. In doing so, we borrow the concept of 'narrativity' from literary criticism. Narrativity is something that a text has degrees of, and our proposal is that the elements of narrativity can be 'sorted' roughly into a continuum, at the 'high narrativity' end of which we find 'story'. On our account, 'story' is an interweaving of plot and character, whose organization is designed to elicit a certain emotional response from the reader, while 'narrative' refers to the sequence of events and the (claimed) causal connections between them. We suggest that it is important not to confuse the emotional persuasiveness of the 'story' with the objective accuracy of the 'narrative', and to this end we recommend what might be called 'narrative vigilance'. There is nothing intrinsically authentic, or sacrosanct, or emancipatory, or paradigmatic about narrative itself, even though the recent health care literature has had a marked tendency to romanticize it. (shrink)