Anne Hudson Jones

Narrative in medical ethics

This is the fourth in a series of five articles on narrative based medicine The contributions of narrative to medical ethics come primarily in two ways: firstly, from the use of stories (narratives) for their mimetic content—that is, for what they say; and secondly, from the methods of literary criticism and narrative theory for their analysis of diegetic form—that is, for their understanding of how stories are told and why it matters. Although narrative and narrative theory, like the form and content of a literary work, are inextricably bound up with each other, I will discuss them separately to help chart the evolving appreciation for the importance of narrative in the work of medical ethics. #### Summary points During the past two decades, stories have been important to medical ethics in at least three major ways: firstly, as case examples for the teaching of principle based professional ethics, which has been the dominant form of medical ethics in the Western world; secondly, as moral guides to living a good life, not just in the practice of medicine but in all aspects of ones life; and thirdly, as narratives of witness that, with their experiential truth and …

Literature and medicine: narrative ethics

The primary focus of literature’s first decade as part of the formal curriculum of some American medical schools (1972–81) was on teaching literary works to help develop students’ capacity for empathy, to enhance their skills in interpretation, and to complement the teaching of traditional medical ethics. These early concerns of literature and medicine have been discussed in the eight previous essays in this series. In the next decade (1982–91), scholars in literature and medicine, like their counterparts in many other disciplines, were increasingly drawn to the study of narrative. Defined most simply, a narrative is a story. Examples of narratives include not only well-crafted works of literature, such as short stories and novels, but also histories, professional stories such as medical case histories, and unpublished personal or family stories. The second decade of literature-and-medicine scholarship was thus marked by an interest in the centrality of narrative to the work of medicine. Scholars used tools and insights from literary theory to explore the acquisition and transmission of medical knowledge, to study the narrative nature of the physicianpatient encounter, to analyse the conventions of various medical genres, and to consider the relationship between a physician’s narrative skill and a patient’s willingness to accept the diagnosis and comply with recommended treatment. During this second decade, scholars also began to explore more intensely the relation between narrative and medical ethics. These two directions of literature-and-medicine scholarship are now coming together: because of the inherently narrative structure of medical knowledge and practice, doctors’ intellectual skills and habits better prepare them for a kind of narrative ethics than for the analytic, principle-based ethics that has dominated medical ethics for the past 25 years. This principle-based ethics is perhaps best represented by Tom L Beauchamp and James F Childress in their textbook Principles of Biomedical Ethics, now in its fourth edition. In this form of analytic ethics, one begins by establishing certain principles—autonomy, beneficence/

Why Teach Literature and Medicine? Answers from Three Decades

In this essay, I look back at some of the earliest attempts by the first generation of literature-and-medicine scholars to answer the question: Why teach literature and medicine? Reviewing the development of the field in its early years, I examine statements by practitioners to see whether their answers have held up over time and to consider how the rationales they articulated have expanded or changed in the following years and why. Greater emphasis on literary criticism, narrative ethics, narrative theory, and reflective writing has influenced current work in the field in ways that could not have been foreseen in the 1970s. The extraordinary growth of interest and work in the field nationally and, especially since 1996, internationally has included practitioners in many additional areas such as disability studies, film studies, therapeutic writing, and trauma studies. Along with the emergence of narrative medicine, this diverse community of scholars and practitioners—affiliated more through their use of narrative methodologies than the teaching of literature—makes the perennial challenge of evaluation and assessment even more complicated.

Medicine and the Movies: Lorenzo's Oil at Century's End

Augusto and Michaela Odone (Nick Nolte and Susan Sarandon) resolve to learn all they can about their sons illness. Lorenzos Oil provides a case worth examining not only for its own story but also...

Literature and medicine: Narratives of mental illness

illness as demon possession continued to appear in the 18th and early 19th centuries, even as cultural beliefs about the causes of madness were moving away from a religious model to a secular one that considered mental illness as a defect or disorder of the faculty of reason. This secular way of understanding madness led to the development of both private and public asylums for the confinement of the mentally ill. The goal of the earliest asylums was simply to provide custodial care and to separate the mentally ill from the rest of society. As new philosophies of humane care emerged in Europe at the end of the 18th century, conditions improved in some institutions, and by the late 19th century there was cautious optimism about potentially effective treatments. Even so, the harsh conditions, cruelty, and abuses that persisted in many institutions evoked narratives of protest from patients who recovered well enough to be released and to write about their asylum experiences. These accounts began to appear in the 18th century, and their incidence and urgency increased as the numbers of asylums and their inmates grew during the 19th and early 20th centuries. Wellknown examples include Alexander Cruden’s The London-Citizen Exceedingly Injured (1739), John Perceval’s A Narrative of the Treatment Experienced by a Gentleman, During a State of Mental Derangement (1838, 1840), Clifford Beers’ A Mind That Found Itself (1908), Mary Jane Ward’s autobiographical novel The Snake Pit (1946), and Kate Millett’s relatively recent The Loony-Bin Trip (1990) about her involuntary commitment to an asylum in Ireland. Occasional narratives by those who were not mad but who were nonetheless confined to mental asylums are valuable for the corroborating accounts they provide: for example, William Seabrook’s Asylum (1935) and Janet Frame’s An Angel at My Table (1984), as well as her autobiographical novel Faces in the Water (1961), report much the same conditions and abuses as chronicled in the other works. Many therapies once believed to be efficacious have been abandoned, sometimes in response to narratives of protest by former patients. Charlotte Perkins Gilman, for example, who was subjected in 1887 to S Weir Mitchell’s “rest cure”, during which she was forbidden to write or engage in any intellectual activity, wrote the fictional story “The Yellow Wallpaper” (1892) based on her experience. Although she originally had difficulty finding a publisher for the work, it has since become a feminist classic. In her commentary (1913) about why she wrote the story, Gilman reports that “many years later [she] was told that the great specialist [S Weir Mitchell] had admitted to friends of his that he had Autobiographical accounts of mental illness have for centuries provided a fascinating window on the world of madness for those fortunate enough never to have sojourned there themselves. Even with all the advanced brain-imaging and other technologies of medicine, the subjective experience of mental illness can be conveyed only by those who have lived it. Yet the nature of the experience poses immense challenges for any author, for the very faculties required to construct a narrative— perception, memory, and reason— can be profoundly altered by illnesses such as depression, bipolar disorder, and schizophrenia, as well as by treatments such as electroconvulsive therapy (ECT) and psychotropic drugs. Perhaps as a result—or perhaps just to avoid the stigma of being identified as a mental patient—contemporary authors have sometimes chosen to present their accounts as fiction. Whatever their choice in this regard, the desire to make sense of what has happened to them, the wish to reform abuses in the treatment of the mentally ill, and the hope of helping other patients and their families have been powerful motivations for the hundreds of patients who have written about their experiences of mental illness. How these authors make sense of what happened during their episodes of mental illness has changed substantially from one age to another. In earlier centuries, mental illness was often understood and portrayed as demon possession, to be treated by exorcism or other religious interventions. If these remedies failed, trials and executions for heresy and witchcraft sometimes followed. Indeed, early autobiographical accounts of mental illness have been compared to spiritual autobiographies in their concern with the religious dimensions of the inner life. In The Book of Margery Kempe (c 1436), which many regard as the first such autobiographical account in the English language, Kempe describes her first experience of mental illness, which today might be called postpartum psychosis, as visions of devils tempting her to commit wicked deeds and to forsake her faith. More than two centuries later, the Bavarian artist Christoph Haizmann recorded in his diaries and in a series of paintings his story of the devils that he believed were responsible for his eight episodes of madness (figure). Autobiographical accounts representing mental

Mental illness made public: ending the stigma?

1that she complains about her illness having been trivialised because depression is so common. Such a complaint would have been unthinkable a generation ago, and it may still be unthinkable to many who suffer from mental illness today. Wurtzel claims, however, that her experience is typical of members of her generation, 1 Generation X (the post-babyboom generation), 2 now in their twenties, who suffer depression at a rate three times higher than that of people born before 1955. 3 Whether the incidence of depression or merely the incidence of reporting has risen, new drugs such as fluoxetine (Prozac) offer treatments that are far less stigmatising than those that were available to previous generations of patients. Wurtzel’s experience may not be unique, but it was certainly different from that of William Styron, who was already a Pulitzer prize-winning novelist when he experienced an episode of depression in 1985 at the age of 60. Although Styron’s depression did not yield to psychotherapy or drugs, his psychiatrist advised him “to avoid the hospital at all costs, owing to the stigma [he] might suffer”.

Medical Humanities at the University of Texas Medical Branch at Galveston.

The Institute for the Medical Humanities of the University of Texas Medical Branch at Galveston (UTMB) was established in June 1973 to ensure that humanities teaching and research became an integral part of the education of future scientists and health-care professionals at UTMB. The multidisciplinary faculty of the Institute--who currently represent the disciplines of art, drama, history, law, literature, philosophy, and religious studies--teach in all four years of the undergraduate medical curriculum as well as in various residency programs. In addition to its focus on students and residents in the School of Medicine, the Institute has a vibrant graduate program in medical humanities with several joint degree options, including an MD/MA and an MD/PhD program, and the Institute has always included the School of Nursing, the School of Allied Health Sciences, and the Graduate School of Biomedical Sciences in its activities. After 30 years, the Institute’s commitment to health-professional education remains strong and enduring. Challenged by major curriculum reform in the School of Medicine and increasingly tight state budgets, Institute faculty members look forward to continued collaboration with their basic science and clinical colleagues to improve our evolving curriculum and to seek research funding from external sources.

Essay Writing and healing

The famous opening sentence of Leo Tolstoy’s novel Anna Karenina, “All happy families are alike; every unhappy family is unhappy in its own way”, implies that unhappiness is more artistically interesting than happiness. Tolstoy’s assertion, although arguable, conveys a profound human truth. Unhappiness and suff ering do seem to stimulate creativity and have evoked some of the greatest literature, art, and music in western culture—works such as Dylan Thomas’s “Do Not Go Gentle Into That Good Night”, Picasso’s Guernica, Shostakovich’s symphony 13 (Babi Yar), and, more recently, John Adams’s On the Transmigration of Souls. Similarly, it is more often illness than health that compels people to fi nd creative ways to express their experiences. Indeed, the German writer Thomas Mann believed there was a special affi nity between susceptibility to an illness like tuberculosis and heightened artistic sensitivity; he explored this affi nity in his stories and novels—“Tristan”, “Tonio Kroger”, Buddenbrooks, and The Magic Mountain, for example. Ironically, Mann himself was healthy enough to live to the age of 80. Not only great artists, however, have been inspired by illness. In recent decades, especially in the USA, illnessinspired writing has resulted in hundreds of autobiographical accounts of patients’ experiences with illnesses from AIDS, Alzheimer’s disease, autism, bipolar disorder, bulimia, cancer, through heart disease and lupus, to schizophrenia and stroke. A subgenre of autobiography, these accounts have spawned a critical and theoretical discourse of their own. In her book Reconstructing Illness: Studies in Pathography, Anne Hunsaker Hawkins off ers a taxonomy of such works, classifying them according to the prevailing myths, whether archetypal or ideological, that authors use to confront or accept their illnesses. Not surprisingly, she fi nds that most people choose the archetypal myths of battle, journey, and death and rebirth in writing their pathographies. In narrative reconstructions of their illnesses, these patients seek to answer the questions of why they became ill, what their illnesses mean in the context of their lives, and how they can reshape their lives to accommodate the signifi cant changes that illness brings. From her reading of hundreds of pathographies, Hawkins believes that writing their illness stories is the fi nal stage in healing for many of the authors. That writing about physical disease or psychic trauma off ers a powerful means of healing may seem selfevident not only to people who regularly read pathographies but also to those who use writing as a therapeutic intervention with patients and trauma victims. Yet fi nding a way to demonstrate the healing eff ects of such writing to a sceptical biomedical audience has presented quite a challenge. Things changed substantially in 1999, however, with the publication of a JAMA article by Joseph M Smyth and colleagues, who had completed a randomised controlled trial of diff erent writing interventions for patients with chronic illnesses— asthma or rheumatoid arthritis. The researchers concluded that writing about stressful life experiences, as opposed to writing about “emotionally neutral topics”, did indeed improve patients’ health, as measured with standard clinical tests and assessments. Although the research design and results were immediately called into question by sceptics, the article’s greatest contribution was the impetus it gave other researchers to investigate and report on similar writing interventions. Finding measurable outcomes that can demonstrate the benefi cial eff ects of patients’ writing about their illnesses is essential if this low-cost, low-risk therapy is going to be made readily available to more patients and their families. We will need many more practitioners trained to follow the paths of trailblazers such as James Pennebaker, Marian MacCurdy, Charles Anderson, and Gillie Bolton. In The Wounded Storyteller: Body, Illness, and Ethics, published in 1995, just a few years after his account of his own illness experiences, the sociologist Arthur W Frank ups the ante. In his theory of postmodern illness and medicine, patients’ fi rst-person narratives of illness are essential for those who cannot quickly be restored to the degree of health they enjoyed before illness struck. Of the three narrative types Frank thinks are available to patients—restitution, chaos, and quest—only in the quest narrative can the distinctive voices of the ill be expressed and heard. The quest narrative requires patients to accept illness as a journey that can lead to new insight, meaning, and purpose for their lives. Epiphany and transformation are the paradoxical gifts of illness, the boon conferred by the quest. Frank believes that it is incumbent on those who have returned from their illness quest to tell their stories, not only for themselves but also to others. He calls for these wounded storytellers to share their wisdom with people who are still well and may not want to hear. Correspondingly, he argues that there is an ethical obligation for the healthy to listen to the stories of the ill and thereby witness the human suff ering they have endured. Telling and listening to such stories are moral acts that we owe each other as fellow human beings. Presumably Frank intends for the ill to off er their insights and wisdom so that others can learn from them and heal their lives without Lancet 2006; 368: S3–S4

Is the system really broken

The qualifications for authorship established by the International Committee of Medical Journal Editors (ICMJE) honour, at least at the minimum, traditional values of authorship: to be designated as an author, one must make substantial intellectual contributions to a project; participate in the writing or revision of the text; and approve the final manuscript. Ironically, whereas scholars in other disciplines have no trouble satisfying these minimum requirements, some scientists argue that the requirements are too rigorous, even unfair. Why should this be? Two explanations deserve scrutiny. First is the conceptual claim that because scientific authorship innately differs from authorship in other fields, scientists cannot be expected to fulfil the requirements expected of other authors. Second is the pragmatic claim that because awarding authorship credit in science has been so corrupted, the concept of scientific authorship should be abandoned and a new way found of awarding credit. Biagioli puts forward an interesting argument that scientific authorship is intrinsically different from authorship in other fields because scientific authors are reporting truth, which is in the public domain, rather than offering an original expression or a personal interpretation. To accept the basis for this argument, we would have to disregard the many examples of different interpretations of the same scientific data. Whether or not one believes that scientific truth is culturally constructed, research data are subject to analysis and interpretation that may be proven to be faulty by later researchers. Indeed, it is exactly this intellectual process of analysis and interpretation of data that is one of the ICMJE qualifications for authorship. A more compelling argument about the difference between scientific authorship and that in other fields relies on the difference in scale and in numbers of researchers involved in large projects. Nonetheless, there is some evidence in scientific fields such as high-particle physics that many researchers can still satisfy the ICMJE qualifications for authorship of a single article (E J Huth, personal communication). A common complaint is that scientists are forced to claim unearned authorship to receive academic rewards such as promotion and tenure. Yet scholars from other disciplines receive promotion and tenure without the huge number of publications that biomedical scientists, especially, have come to expect of their colleagues. Because the demand for large numbers of publications is an artefact of the scientific community, change must come from within that community. Honouring the ICMJE guidelines would be a good place to begin. Several US medical schools have now established authorship policies based on the ICMJE guidelines for authorship, and others are considering doing so. Such policies, as well as courses in research ethics, offer opportunities for discussion and education about the authorship. The articles began with the title of the study, followed by a subtitle to show that the paper was the report of a special Medical Research Council investigation, a report to the Medical Research Council from a committee, or a report by, of, or to such a committee (or subcommittee, working party, or other body designated to be responsible for the research). During the past two decades, authorship has been ascribed to every report, and the trend has been towards individual authorship. The way in which bibliographic databases have indexed these collaborative studies has also varied. Sometimes the phrase “No authors listed” is entered in the author field of MEDLINE records, with the name of the collective authorship (eg, the trial steering committee) incorporated with the title. Sometimes the names of individuals mentioned in the byline of the report (for example, the

Literature and medicine: Garcia Marquez' Love in the Time of Cholera

Arguably the greatest novel ever written about aging, Gabriel Garcia-Marquez’ Love in the Time of Cholera (2) may be a challenging text for those who need to read it most: the young, the would-be rational, and the impatient. To say that many health care professionals fall into these categories is not to fault them but merely to describe them. Who being young can know what it is like to be old? Who trained in western scientific medicine dares not try to be rational? And who caught up in the task-oriented imperative of contemporary medicine can truly claim the virtue of patience? Even before managed-care initiatives so greatly increased the pressure, physicians were famously time-driven, trained to seek efficiency in all things, care of patients prominently among them. To such persons, the thought of reading a novel may seem a profligate waste of time. Why spend hours reading about what never happened? This question has been eloquently answered over the years by those who use literature in medical education. (3-9) For Love in the Time of Cholera the best answer is that what this novel offers cannot easily be found in traditional medical texts about aging.