In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine they are wounded storytellers. People tell stories to make sense of their suffering when they turn their diseases into (...) stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. (shrink)

Contemporary health care often lacks generosity of spirit, even when treatment is most efficient. Too many patients are left unhappy with how they are treated, and too many medical professionals feel estranged from the calling that drew them to medicine. Arthur W. Frank tells the stories of ill people, doctors, and nurses who are restoring generosity to medicine--generosity toward others and to themselves. The Renewal of Generosity evokes medicine as the face-to-face encounter that comes before and after diagnostics, pharmaceuticals, and (...) surgeries. Frank calls upon the Roman emperor Marcus Aurelius, philosopher Emmanuel Levinas, and literary critic Mikhail Bakhtin to reflect on stories of ill people, doctors, and nurses who transform demoralized medicine into caring relationships. He presents their stories as a source of consolation for both ill and professional alike and as an impetus to changing medical systems. Frank shows how generosity is being renewed through dialogue that is more than the exchange of information. Dialogue is an ethic and an ideal for people on both sides of the medical encounter who want to offer more to those they meet and who want their own lives enriched in the process. The Renewal of Generosity views illness and medical work with grace and compassion, making an invaluable contribution to expanding our vision of suffering and healing. (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)

Increasingly, medicine is used to remodel, revise, and revamp as much as to heal and mend. It is tempting to say that people make merely personal choices about these new uses. But such choices have implications for everybody, and they ought to be made cautiously, slowly, and in a way that opens them to discussion.

Narrative ethics holds that if you ask someone what goodness is, as a basis of action, most people will first appeal to various abstractions, each of which can be defined only by other abstractions that in turn require further definition. If you persist in asking what each of these abstractions actually means, eventually that person will have to tell you a story and expect you to recognize goodness in the story. Goodness and badness need stories to make them thinkable and (...) to translate them into individual and collective actions. Yet after more than two decades of considering the issue, I do not believe that a collection of stories can by itself guide actions in ways that are sufficient to respond to ethical troubles in institutional settings. The question will always remain open for me, but my present belief is that narrative bioethics is always hyphenated, in the sense that guidance from stories needs to be allied with other ethical guidance. Each side of the hyphen qualifies the other side. The hyphenation I will argue for in this essay is “narrative-deontology.”. (shrink)

The ethics of telling stories about other people become questionable as soon as humans learn to talk. But the stakes get higher when health care professionals tell stories about those whom they serve. But for all the problems that come with such stories, I do not believe it is either practical or desirable for bioethicists to attempt to legislate an end to this storytelling. What we need instead is narrative nuance. We need to understand how to tell respectful stories in (...) which the patients are fully acknowledged fellow participants, not one‐dimensional objects of a knowing gaze. The problem is not narration itself but a particular version of narrational privilege, and getting rid of that would have benefits far beyond practices of writing case studies. In this essay, I first offer four considerations that I have found either omitted or underemphasized in discussions of the ethics of telling stories about patients. I then sketch a model of medical storytelling that might be the basis for shifting the ethical question from whether to how. (shrink)

A collection of stories by bioethicists writing about their own illnesses displays the importance of microethics. From this perspective, ethics happens not in the application of principles to specific decisions, but rather in the moment-to-moment flow of clinical interaction, as healthcare workers and patients make decisions, especially in their use of language. Microethical issues that are common to multiple stories are described as dense junctures of ethical concern. Three junctures are discussed in detail: conflicts between medical and patient rationalities, issues (...) of how clinicians represent patients, and practices of truth telling. These junctures are illustrated with examples from the bioethicists’ personal stories of treatment. (shrink)

Who's afflicted? Early in Nicole Piemonte's book Afflicted: How Vulnerability Can Heal Medical Education and Practice, she quotes an email from a physician whose voice sets the problem and tone. He describes himself as someone “who has intended well” but then “nearly burned out because of the insidious process of physician formation that left me a mess at the threshold of the suffering of other human beings.” His confessional manifesto regrets “the sad things I have seen and done.” His narrative (...) then turns to redemption: “I was—pardon the sentiment—loved back into a good medical practice as a form of growing wisdom and care” (pp. x–xi). Afflicted is written for those who hear this voice speaking for many others. (shrink)

When clinician‐patient relationships go wrong, the problem may not be merely that one person is knowingly mistreating the other. More likely, they are caught up in different stories, and animated by different moral visions. The task is for each to see the point of the other's story.

If bioethics seeks to affect what people do and don't do as they respond to the practical issues that confront them, then it is useful to take seriously people's sense of rightness. Rightness emerges from the fabric of a life—including the economy of its geography, the events of its times, its popular culture—to be what the sociologist Pierre Bourdieu calls a predisposition. It is the product of a way of life and presupposes continuing to live that way. Rightness is local (...) and communal, holding in relationship those who share the same predisposing sense of how to experience. Rightness is an embodied way of evaluating what is known to matter and choosing among possible responses. Bioethics spends considerable time on what people should do and on the arguments that support recommended actions. It might spend more time on what shapes people's sense of the rightness of what they feel called to do. (shrink)

In one of Richard Zaner’s tales of ethics consultation practice, a moment occurs that might be comic, except for the gravity of the situation. Zaner goes to visit the parents of an infant with multiple problems who has been admitted to neonatal intensive care. He introduces himself awkwardly, and the child’s father responds: “‘Why,’ he bluntly asked, ‘are you here now?’ And with, again, exemplary frankness, he pointedly demanded, eyes narrowing in that knowing way, full of suspicion: ‘Has someone been (...) acting unethically?’”. Webb Keane’s Ethical Life: Its Natural and Social Histories never discusses bioethics and gives minimal attention to medical anthropologists who have contributed significantly... (shrink)

A correction to this paper has been published: https://doi.org/10.1007/s10912-021-09698-y.

This review of Jay Baruch's Tornado of Life: A Doctor's Journey through Constraints and Creativity in the ER considers the book's contributions, including its explorations of the clinical dilemma of working with patients’ stories that are fragmented, how easily clinicians can miss crucial parts of patients’ stories and how that affects care, and the “agonizing compromises” between what patients need and what institutions can provide. Baruch acknowledges, without any self‐indulgence, the shame that his work causes him, given the limitations of (...) what he can do. (shrink)

In my ideal academy of healing arts, students of all health-care professions would spend their first semester together, thinking only about suffering. No coursework on bodies, diseases, or basic science. No socialization into distinct professional identities. Just suffering from multiple perspectives: literary, philosophical, spiritual, historical, crosscultural. They would be led to ask what forms of suffering have been responded to in which ways, when, by whom. Whose suffering has been systematically ignored, and what finally led to the recognition of that (...) suffering? They would write about the unresolvable question of what aspects of suffering can be called universal, and what suffering might be local and... (shrink)

The issue of boundaries in clinician–patientencounters is considered through narrativeanalysis of four clinical stories in whichboundaries crossings are a self-conscioustopic. One story is by a physician as patient,two are by physicians, and one is by apalliative care nurse. The stories arediscussed using Walter Benjamin''s distinctionbetween the painter, who maintains distance andsees the whole, and the cameraman, who usestechnology to penetrate realities and thenreassembles fragments. The essay argues thatdistance and closeness are ethical issues thatconstitute the possibility of clinicalencounters but the encounter (...) also changes theclinician''s sense of boundaries. The relevantethics of boundary decisions in most clinicalencounters are not procedural ethics but anethics of self-creation: in orienting toboundaries as doctors do, they createthemselves in their relations to others. (shrink)

ABSTRACT:This symposium contribution argues that politicized responses to the COVID-19 pandemic mark the fracturing of the consensus that bioethics has been built upon. This consensus involved the mutual dependence of principles and stories: principles need stories to become applicable in clinical action, and stories need to reflect principles if they are to make generalized claims. Two mid-20th-century theorists, Erving Goffman and Walter Benjamin, each predicted the thinness of appeals to principles and to stories, respectively; their skepticism describes our moment. Anti–public (...) health responses to COVID restrictions show that principles now have radically different meanings within different factional groups, so appealing to them perpetuates divisions. Complementary to that, stories are told more as displays of group membership than as testimony of individual experience. The predictable future is that bioethics controversies will become more fraught. (shrink)