Narrative Medicine: Form, Function, and Ethics

Sickness and healing are, in part, narrative acts. Patients write about their illnesses with increasing frequency, which suggests that finding the words to contain the chaos of illness enables the sufferer to endure it better (1-3). We physicians, too, write more and more frequently about ourselves and our practices (4, 5). In many forms of narrative writing, doctors are endorsing the hypothesis that writing about oneself and one's patients confers on medical practice a kind of understanding that is otherwise unobtainable (6). What Is Narrative Medicine? The growth in publication of patients' and physicians' stories is joined by other signs of the increasing importance accorded to narrative dimensions of sickness and medicine. Residing in what is called narrative knowledge, the human capacity to understand the meaning and significance of stories is being recognized as critical for effective medical practice (7, 8). Physicians are reaching to practice what I have come to call narrative medicinethat is, medicine practiced with the narrative competence to recognize, interpret, and be moved to action by the predicaments of others (9, 10). Narrative conceptual frameworks have been advancedand accepted with gratitudefor examining and understanding medical reasoning, clinical relationships, empathy, and medical ethics (11-13). The growing acceptance of and demand for qualitative clinical research to complement quantitative clinical research demonstrate physicians' realization that both the singular and the statistically significant must be comprehended in the study of disease or its treatment (14, 15). The rise of narrative medicine may signify fundamental changes in the experience of disease or of doctoring. It also suggests that medicine, as part of its culture, is responding to the forces propelling similar narrative turns in such fields as literary studies, history, qualitative social sciences, and ethics (16). Examining narrative medicine's practice of writing may help us to understand its significance, its consequences, and the means to participate in it responsibly. This essay undertakes such an examination by combining analytic and reflective methods. Classification of Genres of Narrative Medicine There are at least five distinct genres of narrative writing in medicine: medical fiction, the lay exposition, medical autobiography, stories from practice, and writing exercises of medical training. Each genre has its own traditions, intentions, methods, and consequences, and each calls for specific ethical guidelines. Medical Fiction Stories about physicians and patients can be invented. When William Carlos Williams wrote The Use of Force, he was not writing a chart note after making a house call, even though the real Dr. Williams might have visited a young girl with diphtheria in his Rutherford, New Jersey, general practice (17). When Richard Selzer wrote Brute, he did not photocopy the emergency department chart detailing the suturing of a facial laceration in a man caught in a street fight, even though the surgeon Richard Selzer indeed cared for such a man during his training (18). Instead, these writers created fictional worlds that corresponded roughly, perhaps, to authorial experiences but transcended them to express aesthetic vision and artistic coherence. The Lay Exposition The New Yorker occasionally publishes essays in a section called Annals of Medicine. Jerome Groopman has written about a few patients with prostate cancer, interspersing their personal stories with medical facts about the disease told in lay language (19). Atul Gawande has written about medical errors, detailing experiences of troubled physicians and their patients and suggesting means to safeguard the public against medical mistakes (20). Such lay journals as Harper's and The New York Times Sunday Magazine have published physicians' essays as well. These essays are written to instruct members of the lay public about medical science, to inspire them to keep themselves healthy, or to encourage them to make social changes in how medicine is practiced. Medical Autobiography The decision to publish an autobiography embroils the author in the public examination of the private self, rehearsing past events in order to justify or cohere or accept choices made and deeds done (21-23). When a physician writes an autobiography, it must pertain, in part, to doctorly acts. When becoming physicians, young medical students undergo dramatic personal transformations, often in a relatively short time, that render them unrecognizable to themselves. To become a person who can dissect a cadaver or peer inside a living human body or inflict pain on another person requires one to turn from one's past, during which one did not perform these acts. This inserts an obligatory discontinuity into any medical autobiography. The publication of many memoirs about medical school suggests the urgency to tell of these transformationsand to tell of them in sadness, rage, and contrition (24-28). The width of the alienating discontinuity opened by medical training suits physicians particularly well for writing autobiographies and even suggests that they, more than other professionals, need to write them. Stories from Practice More and more medical journals have inaugurated narrative features, including Annals of Internal Medicine's On Being a Doctor, Journal of the American Medical Association's A Piece of My Mind, and Health Affairs's Narrative Matters. Essays in these columns differ from lay exposition and medical autobiography in audience and intent. Because physicians write these essays for other physicians to read, they adopt the narrative stance of the insider, expecting their readers to pick things up between the lines. Physicians write such essays to present unique experiences to colleagues, to brood aloud to others like themselves, and, sometimes, to seek forgiveness for perceived lapses. Writing Exercises of Medical Training Many medical schools and residency programs ask trainees to write about their clinical experiences in journals, critical incident reports, or what I have called parallel charts (29-33). Often, students are asked to read what they have written to one another and to faculty members, thereby generating and articulating the personal and emotional agendas of training that can otherwise be neglected. Residency programs in internal medicine and family medicine incorporate such reflective and textual activities as Balint groups, literature and medicine seminars, and narrative presentations of patients (34, 35). These narrative practices encourage trainees to reflect on what their patients experience in illness and what they themselves undergo in the care of sick and dying patients (36). Consequences of Narrative Writing in Medicine Having surveyed some specific genres of narrative medicine, let me turn to a more personal reflection on the consequencesfor doctor and patientof such writing. This natural history of one internist's narrative writing about patients may offer a prelude to needed longitudinal studies that assess the outcomes of such practices. With the guidance of literary scholar Joanne Trautmann Banks (37), I began to write stories about patients who troubled or baffled me. The more I wrote about my patients and myself, the more confident I became that the act of narrative writing granted me access to knowledgeabout the patient and about myselfthat would otherwise have remained out of reach. I also realized that writing about patients changed my relationships with them. I became more invested in them, more curious, more engaged, more on their side. I next found myself showing patients what I had written about them. If my writing constituted the hypothesis-generating step of a form of intersubjective research, only the patient could test the hypotheses. After a particularly moving or confusing visit with a patient, I would write as accurate an account as I could summon of what I thought the patient had told me. On the next visit with that patient, I would invite her to read what I had written and would ask whether I had gotten her story right. I would do this several times, so that each visit resulted in a chapter about the patient's life. In two early efforts, the patients read what I had written and then said, in effect, We left something out. These two patients then told me about episodes of abusefor one, childhood sexual abuse and for the other, spousal violence in young adulthoodthat, in their minds, were related to their current clinical situations. Both women then brought me textsa childhood journal, poems about a marriagethat they had written about their experiences. In both cases, the patients' responses to my chapters about them were clinically significant because they brought to my attention aspects of their histories that were salient to their current emotional and physical health. It was as if my writing about and for my patients quickened a process of disclosure that may have come much later, if at all, in the relationship. (It may be that this form of diagnostic narrative writing, if it is replicable, constitutes another genre for my classification.) I then found myself reviewing the charts of long-time patients to remember and reflect on all that we had seen one another through in almost two decades of care. I found the exercise extraordinarily useful and wanted to share the idea with my fellow internists. However, before publishing a paper that included rather extensive clinical descriptions of two identifiable patients, I felt that the breach in confidentiality required me to obtain their informed consent. I showed the manuscript to the patients (in one of the two cases, to the patient's daughter, because the patient himself had become cognitively impaired), and I asked them for permission to publish it (38). In both cases, the patient and family member granted permission. More important, the disclosure was therapeutic. Th