Health Humanities Reader

By Therese Jones, Delese Wear, Lester D. Friedman and 55 more

Over the past forty years, the health humanities, previously called the medical humanities, has emerged as one of the most exciting fields for interdisciplinary scholarship, advancing humanistic inquiry into bioethics, human rights, health care, and the uses of technology. It has also helped inspire medical practitioners to engage in deeper reflection about the human elements of their practice.

In Health Humanities Reader, editors Therese Jones, Delese Wear, and Lester D. Friedman have assembled fifty-four leading scholars, educators, artists, and clinicians to survey the rich body of work that has already emerged from the field—and to imagine fresh approaches to the health humanities in these original essays. The collection’s contributors reflect the extraordinary diversity of the field, including scholars from the disciplines of disability studies, history, literature, nursing, religion, narrative medicine, philosophy, bioethics, medicine, and the social sciences. 

With warmth and humor, critical acumen and ethical insight, Health Humanities Reader truly humanizes the field of medicine. Its accessible language and broad scope offers something for everyone from the experienced medical professional to a reader interested in health and illness.

• Language: English
• Publisher: Rutgers University Press
• Release date: Aug 28, 2014
• ISBN: 9780813573670

Mark Vonnegut

Mark Vonnegut went to medical school after writing The Eden Express. He lives with his wife and two children in Milton, Massachusetts, where he is a full-time practicing pediatrician.

Book preview

Health Humanities Reader

Health Humanities Reader

Edited by

Therese Jones, Delese Wear, and Lester D. Friedman

Assistant Editor

Kathleen Pachucki

Rutgers University Press

New Brunswick, New Jersey, and London

Library of Congress Cataloging-in-Publication Data

Health humanities reader / edited [by] Therese Jones, Delese Wear, and Lester D. Friedman; assistant editor Kathleen Pachucki.

p.; cm.

Includes bibliographical references and index.

ISBN 978-0-8135-6247-6 (hardcover: alk. paper)

ISBN 978-0-8135-6246-9 (pbk.: alk. paper)

ISBN 978-0-8135-6248-3 (e-book)

I. Jones, Therese, editor of compilation. II. Wear, Delese, editor of compilation. III. Friedman, Lester D., editor of compilation.

IV. Pachucki, Kathleen, editor of compilation.

[DNLM: 1. Philosophy, Medical. 2. Education, Medical. 3. Health Personnel—education. 4. Humanities.

W 61]

RA418

362.101—dc23

2013021942

A British Cataloging-in-Publication record for this book is available from the British Library.

This collection copyright © 2014 by Rutgers, The State University

Individual chapters copyright © 2014 in the names of their authors

All rights reserved

No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is fair use as defined by U.S. copyright law.

Visit our website: http://rutgerspress.rutgers.edu

Contents

Foreword: Too Long Too Short

Mark Vonnegut, MD

Acknowledgments

Introduction: The Why, the What, and the How of the Medical/Health Humanities

Therese Jones, Delese Wear, and Lester D. Friedman

Part I. Disease and Illness

Chapter 1. Being a Good Story: The Humanities as Therapeutic Practice

Arthur W. Frank

Chapter 2. Illuminating the It, Thee, and We of Disease and Illness: The Metamorphosis and Related Works

David H. Flood and Rhonda L. Soricelli

Chapter 3. This Weird, Incurable Disease: Competing Diagnoses in the Rhetoric of Morgellons

Lisa Keränen

Chapter 4. My Quest for Health

Michael Sappol and Shelley Wall

Part II. Disability

Chapter 5. Disability in Two Doctor Stories

Martha Stoddard Holmes

Chapter 6. Music and Disability

Joseph N. Straus

Chapter 7. American Narrative Films and Disability: An Uneasy History

Martin F. Norden

Chapter 8. Standout

Lisa I. Iezzoni

Part III. Death and Dying

Chapter 9. When the Doctor Is Not God: The Impact of Religion on Medical Decision Making at the End of Life

Felicia Cohn

Chapter 10. Postmodern Death and Dying: A Literary Analysis

Martha Montello and John Lantos

Chapter 11. Second Degree Block: Poem and Commentary

Amy Haddad

Part IV. Patient-Professional Relationships

Chapter 12. Social Studies: The Humanities, Narrative, and the Social Context of the Patient-Professional Relationship

Rebecca Garden

Chapter 13. Humanities and the Medical Home

Mark Clark, Howard Brody, and Rebecca Hester

Chapter 14. Occupational Medicine

Jack Coulehan

Part V. The Body

Chapter 15. The Virtues of the Imperfect Body

Rosemarie Tong

Chapter 16. Seeing Bodies in Pain

Sander L. Gilman

Chapter 17. Public Fetuses

Bernice L. Hausman

Chapter 18. More Body: A Performance for Five (or More) Bodies

Gretchen A. Case

Part VI. Gender and Sexuality

Chapter 19. Adult Intake Form

Allan Peterkin

Chapter 20. What Is Sex For? or, The Many Uses of the Vag

Alice Dreger

Chapter 21. I Always Prefer the Scissors: Isaac Baker Brown and Feminist Histories of Medicine

Marjorie Levine-Clark

Chapter 22. in the Health Humanities: A New Approach to Sex and Gender Education

Susan M. Squier

Chapter 23. I Am Gula, Hear Me Roar: On Gender and Medicine

Rafael Campo

Part VII. Race and Class

Chapter 24. Listening as Freedom: Narrative, Health, and Social Justice

Sayantani DasGupta

Chapter 25. Race and Mental Health

Jonathan M. Metzl

Chapter 26. Law’s Hand in Race, Class, and Health Inequities: On the Humanities and the Social Determinants of Health

Daniel Goldberg

Chapter 27. The Rooms of Our Souls

Maren Grainger-Monsen

Part VIII. Aging

Chapter 28. Old Age Isn’t a Battle, It’s a Massacre: Reading Philip Roth’s Everyman

Thomas R. Cole and Benjamin Saxton

Chapter 29. Do You Remember Me? Constructions of Alzheimer’s Disease in Literature and Film

E. Ann Kaplan

Chapter 30. Love in the Time of Dementia

Jerald Winakur

Part IX. Mental Illness

Chapter 31. Narrating Our Sadness, with a Little Help from the Humanities

Brad Lewis

Chapter 32. Teaching Narratives of Mental Illness

Anne Hudson Jones

Chapter 33. Community Psychiatry and the Medical Humanities

Michael Rowe

Chapter 34. Culpability

Ian Williams

Part X. Spirituality and Religion

Chapter 35. Rites of Bioethics

Tod Chambers

Chapter 36. Health and Humanities: Spirituality and Religion

Raymond C. Barfield and Lucy Selman

Chapter 37. Scientia Mortis and the Ars Moriendi: To the Memory of Norman

Jeffrey P. Bishop

Chapter 38. Meditations of an Anesthesiologist: Poem and Commentary

Audrey Shafer

Part XI. Science and Technology

Chapter 39. Andromeda’s Futures: A Story of Humanities, Technology, Science, and Art

Catherine Belling

Chapter 40. Knowing and Seeing: Reconstructing Frankenstein

Paul Root Wolpe

Chapter 41. A Brief History of Love: A Rationale for the History of Epidemics

Allison B. Kavey

Chapter 42. Calcedonies

Jeff Nisker

Part XII. Health Professions Education

Chapter 43. Teaching Autism through Naturalized Narrative Ethics: Closing the Divide between Bioethics and Medical Humanities

Julie M. Aultman

Chapter 44. Courting Discomfort in an Undergraduate Health Humanities Classroom

Michael Blackie and Erin Gentry Lamb

Chapter 45. The Medical Humanities in Medical Education: Toward a Medical Aesthetics of Resistance

Alan Bleakley

Chapter 46. In Defense of Cheaper Stethoscopes

Jay Baruch

References

Notes on Contributors

Index

Foreword

Too Long Too Short

Mark Vonnegut, MD

As a second-year medical student, I was still trying to do everything perfectly because if I didn’t maybe they wouldn’t let me be a doctor. I was cutting sutures for a surgeon who was closing after an abdominal procedure.

Cut.

I tried my best.

Too long.

Cut.

I tried again.

Too short.

And so forth, for the next twenty minutes or so.

Cut.

Would you like the next one too short or too long?

I spent two years as part of the admissions committee at Harvard Medical School. I was surprised by how many applicants had professional-caliber artistic talents. It seemed unfair that these young, gifted applicants could do other things so well. The committee referred to artistic accomplishments as extras.

The arts are about as extra as breathing. The arts keep you awake and let you make use of your remarkably advantaged point of view.

Well over 90 percent of the time, the diagnosis is in the story—what the patient tells us. The physical exam and imaging and lab tests are mostly done to confirm what we learn from what our patients tell us.

The differential diagnosis is a list of competing narratives.

You need the arts to help you figure out who your patients are. Huck Finn, Lady Chatterley, Willy Loman, and Ophelia, to name just a few, will all come to see you disguised as patients.

There have been many great writers who were also doctors. My favorites are Anton Chekhov and William Carlos Williams.

A writer is not a confectioner, a cosmetic dealer, or an entertainer. He is a man who has signed a contract with his conscience and his sense of duty.

A

NTON

C

HEKHOV

, 1897

The same is true of being a health professional. There’s a seriousness about what we do. We’re not confectioners, cosmetic dealers, or entertainers, or we’re not supposed to be. We’re serious observers and students of the human condition, or we’re doomed to boredom and falling asleep on the job. We’re dedicated to expanding the limits of what medicine can do. We’re driven by a conviction that things don’t have to be the way they are. We are hopefully useful malcontents who have the power to help, change small things, and be a part of changing bigger things.

A society that gets rid of all its troublemakers goes downhill.

R

OBERT

A

.

H

EINLEIN

, 1973

There’s a perception that the arts and sciences are in competition. Sigmund Freud was famous, among other things, for not being able to figure out what women wanted. He was obsessively jealous and worried that his fiancé, Martha, would be—must be—attracted to musicians and artistic types, of which he accused her on a regular basis. How could he, a dogged, 5′7″ neurologist compete? Maybe by winning the Nobel Prize for his work on cocaine, a prize that ultimately went to some silly ophthalmologist who noted its anesthetic properties, thus making a long engagement even longer. (The money from the Nobel Prize would have let Freud buy a house and get married.) In spite of the considerable lengths that Martha went to reassure him, he could never believe that the answer to what she wanted was him.

Although he tried always to be a scientist and to bring order to the messy business of what it means to be human, Freud was incapable of leaving the borders of what we know and what we need to know alone. He was eventually awarded a Nobel Prize, but it was for literature because he wrote so beautifully because he had to write to figure out what he thought.

To be a good clinician you have to shut up and let the patient be the most important person in the room. To create the space and opportunity for the patient to tell you what’s wrong, you frequently have to refrain from reflexively doing something.

Don’t just do something, stand there.

E

LVIN

S

EMRAD,

MD, 1954

Nothing in science will teach you how to be quiet, curious, hopeful, or tenacious. Art gives you a way to move forward without knowing exactly where you are going. You have to be open to luck and to what the situation gives you. Without art, you’re stuck with yourself the way you are and life as you think it is. If you want to change the world or need to change the world, use art.

I strongly recommend that everyone, but especially health professionals and students, take a shot at making something out of nothing. Whether it’s music or painting or writing and regardless of how well it turns out, making art changes the world from one where you can’t make art to a world where you can. And maybe it will be beautiful or maybe you can see how to make it better or maybe you can have a conversation with a loved one about it.

And it will make you a better professional and a happier person. Do not believe all that stuff about tortured artists. You should have seen them before they wrote those poems, painted those pictures, wrote those symphonies.

I paint and know other doctors who do as well. Painting has the advantage that you can’t possibly make a living at it. I think a lot more about the lines and colors I get wrong than the ones I get right. The principal clinical usefulness of my paintings is that they give nervous patients something to look at and talk about.

Did you really paint that?

Yup.

When I paint I think more clearly. I notice my notes and observations. Things are less repetitive, routine. I connect dots. I write more than ST TC+ AMOX250TIDX10.

Don’t let anyone tell you that it’s not about you. It’s about you. How honestly you go about the job. How open you are to being taught. How willing you are to be uncomfortable and need more.

The arts grow your soul.

Actively reading good writing is a creative act that can open your world. Writing makes you more genuinely curious and less placated by platitudes. Unless you try to write it out, you don’t really know what you think. Freud was amazed to learn what he thought; books’ and books’ worth that he would never have known about without writing.

If you write, paint, or play music, you change yourself, and you change the world from one where you can’t do such a thing to one where you can. It might make you a better health professional, or it might save your life.

How we construct a diagnosis, how we fall short, try again, succeed, and question our successes is exactly how we read or write a story.

History of present illness plucks out salient details from the maelstrom and constructs a story that makes sense—or not. The problem is that you’re often expected to write these stories in less time than it takes to wash your face and brush your teeth. Being a health professional means you never have to make stuff up anymore if you don’t want to.

A student once asked the French writer, André Gide, if he should try to be writer. Only if you have to, said Gide.

Study the humanities and the arts as part of your professional training only if you have to. You probably have to.

Acknowledgments

We deeply appreciate the financial support of the Arnold P. Gold Foundation for this project. We would also like to acknowledge and thank our colleagues/contributors for their outstanding scholarship, brilliant creativity, and unwavering commitment to health humanities education. And finally, we are forever grateful to our cheerful and conscientious assistant editor, Kathy Pachucki.

Introduction

The Why, the What, and the How of the Medical/Health Humanities

Therese Jones, Delese Wear, and Lester D. Friedman

The delicate balance between biology and culture, as it alters in a continuous flow, is what constitutes the elusive truth of illness.

D

AVID

M

ORRIS

(1998, 9)

The Why

Why introduce and integrate the humanities into science—and clinically based curricula such as medicine, nursing, pharmacy, and allied health programs? Why aren’t the scientific basis of knowledge and the apprentice model of training adequate for healthcare practitioners to enter their chosen professions? K. Danner Clouser, the first philosopher to teach ethics at a medical school in the United States, eloquently attempted to answer such questions in a 1980 keynote address at a conference on the role of humanities in health education:

What’s missing in a vocational training? . . . It leaves out everything that makes us uniquely human. Where (in a vocational program) do we train for understanding, suffering and joy? Where do we gain ideals and models—for motivations, for patterning our lives, for fashioning our goals, emotions, attitudes, and character? Where do we think about and entertain purposes, goals, and styles of life? Where do we gain perspective on our own life, on others’, and the relationships between them? These things don’t just happen, however much we like to believe they do.

At the time, Clouser was espousing one of the most commonly advanced political and pedagogical justifications for the still-nascent medical humanities movement—the belief that something vital and fundamental was missing in health professions education and that the humanities could fill in those gaps and omissions.

Such ideas and opinions had been simmering since the educational reforms of the 1960s when relatively modest medical schools were dramatically expanding to become vast academic medical centers. In his comprehensive history of American medical education, Kenneth Ludmerer argues that a major consequence of the boom in biomedical research and clinical service across campuses was a diminished focus on student education, what he calls the forgotten medical student (1999, 196). With a broad mandate to reform the curriculum, medical educators hurried to incorporate new knowledge and accommodate larger changes affecting clinical practice, such as shifting disease patterns and emerging methods and technologies for diagnosis and treatment (197). However, although biomedical content continued to evolve dramatically, the struggle to encourage student compassion and empathy, to include family and community health needs in addition to those of the individual patient, and to emphasize reasoning and analysis over rote memorization remained remarkably similar in approach to those methods identified throughout the previous century.

With the 1970s came the emergence of seemingly miraculous but morally troubling medical and technological advances such as organ transplantation, standards of death, in vitro fertilization, and complex pharmaceuticals. Educators inserted humanities materials and methodologies into the medical curriculum and clinical practice with the intention of remedying the growing imbalance between the technological aspects of health care and the human aspects of caregiving (Hawkins and McEntyre 2000, 3–4) while, at the same time, radical shifts in the traditional fields of academic study were occurring across the educational landscape. For example, literary criticism, occupied with the intricacies of the reader-writer dyad, excluded social issues, leaving those scholars and educators interested in the cultural or historical context of literature, or in a text’s political force, out of step and out of fashion. Described by the literature and medicine scholar Kathryn Montgomery Hunter as the intellectually underemployed, these disenchanted faculty members, along with a growing cadre of newer scholars interested in interdisciplinary education, were drawn to medical education as fertile ground for their ideas and passions (1991a, 5).

During the inaugural session of the Institute on Human Values in Medicine, physician and ethicist Edmund Pellegrino declared the hope of bringing some of us in medicine who are concerned with issues involving human values into close discourse with those . . . in the disciplines outside of medicine who have interest in, and perhaps a desire to help us with, the human problems that arise in medicine for the patient and the physicians (1972, 4). He noted that on almost every medical campus a subterranean current of interest in exploring potential contributions from the humanities already existed, a current that has not only remained strong at health sciences centers but has also continued to grow, as the number and quality of programs across the country now demonstrate.

Nothing in the early proceedings and publications of this burgeoning discipline—the medical humanities—suggested a rigid prescription for which areas of academic study should be invited into the curriculum, although the usual ones—history, literature, philosophy—were consistently mentioned. In fact, presenters at this first institute session were mindful about casting a wide net to include all humanities disciplines as well as the social sciences, confident and excited about what such a collective and interdisciplinary presence might bring to medical education. Clouser suggested that each [humanities] discipline should be working to interrelate conceptually with some discipline of the medical world. They should be seeking areas of overlap, where each from its own perspective, methods, and resources can raise questions or shed light to the mutual benefit of both. It is an interdisciplinary enterprise aiming for new insights and understanding (1972, 50). Yet, then and now, one fundamental question remains: What particular knowledge and skills do the humanities disciplines bring to this enterprise of educating healthcare practitioners?

Literature offers a compelling example of how that question can evoke both inventiveness and defensiveness among its practitioners. Over twenty years ago, literature and medicine scholar Anne Hudson Jones (1990) described two major approaches to teaching literature and medicine, each with the same goal of improving patient care. What she calls the aesthetic approach focuses on the literary skills of reading, writing, and interpretation for use in medical practice. Joanne Trautmann Banks, the first literature scholar to join the faculty of a medical school in 1972, writes from this orientation in The Wonders of Literature in Medical Education, the single most important essay in the emerging field. Banks argues that "to teach a student to read in the fullest sense is to train him or her medically (Trautmann [Banks] 1982, 26). She refers to the interpretive skills necessary for the exploration of literary texts that require students to study subtle, ambiguous, and rich detail, to fill in gaps, to understand relationships, to look at what is being said, and to approach words in their personal and social contexts and when several things are being said at once" (26). Because medicine is a practice profession that focuses not only on how to do things but also on how to do things better, the imparting and practicing of literary analysis and critical reading has instrumental value by virtue of supplying specific intellectual tools to the multiple dimensions of medicine.

The other approach, also in the service of patient care, has more to do with moral reflection rather than with merely introducing medical students to basic literary elements such as point of view, plot, imagery, setting, and narrative stance. This approach engages students with cultural perspectives on health and illness, social justice, and the moral dimensions of patient encounters through literary works that illuminate a particular set of human experiences and . . . encourage moral reflection in treating patients confronting these experiences (Hunter et al. 1995, 789). Those favoring this approach often cite the work of philosopher Martha Nussbaum, known for her exploration of literature in developing the moral emotions. In the preface to Poetic Justice (1995), she argues that the ability to imagine the concrete ways in which people different from us grapple with their disadvantage can have practical and public value, given the deep prejudice and rampant oppression in the world enacted through sexism, racism, classism, able-ism, homophobia, and ethnic discrimination.

Arising from and enmeshed with Nussbaum’s view that attending carefully to the nuances and complexities of literature can sharpen and deepen moral sensibilities is a third approach—the focus on empathy. This approach suggests that studying literature has the potential to enhance a student’s ability to understand others’ feelings, plights, and values, requiring the reader to suspend his or her own point of view and enter the reality of another character or another world (Hunter et al. 1995, 789). However, this approach has become increasingly challenged, particularly when humanities inquiry is tied directly and specifically to the development of humanism and humanistic professionals.

As literary theorist Jonathan Culler (2005) notes, the human in humanities leads us astray: "The crisis of the humanities might even be linked to the fact that our language proposes a strong link not just between the humanities and the human being but between humanistic thinking and even humane behavior" (38). Just as medical humanities scholars and educators have become less willing to adapt their research interests and pedagogical practices to the exigencies of clinical practice and medical education over the past forty years, so too have they become less comfortable with the tacit assumption that teaching literature to health professions students is the means of enlightenment and empathy. Returning again to Anne Hudson Jones for one of the original articulations of and justifications for the medical humanities in Literature and Medicine: A Claim for a Discipline (1984), we see her challenge and caution against any notion that studying the humanities makes one more humane: This expectation makes me very uncomfortable. This expectation is a burden, not just for literature, for all of the humanities. We all hope that it will [make one more humane], but there have been too many examples to the contrary for me to believe in any guarantee (32).

Thus, there has been and continues to be a tension between the instrumental justification for the humanities in health professions education, which ostensibly enables and promotes more caring professionals and better caring practices—what physician and bioethicist Jeffrey Bishop (2008) calls the dose effect of the humanities (17)—and the intellectual practice of the humanities, which enables and encourages fearless questioning of representations of caregivers and patients in all their varieties, challenges abuses of power and authority, and steadfastly refuses to accept the boundaries that science sets between biology and culture. Increasing numbers of theoretical justifications for humanities in health professions education suggest that the ethical imperative of the humanities has been outgrown. As Culler writes, the humanities in any environment, including health care, enable learners to see situations in another light (2005, 37)—re-presenting, re-describing, and re-contextualizing—whether it be as humanities scholar or clinical ethicist. Geoffrey Rees calls attention to the dangerous possibilities organized through collective engagement in the work of the medical humanities (2010, 277), and medical educator Alan Bleakley predicts that, as a democratizing force, the medical humanities will play a bigger role in health professions education and clinical practice than we might imagine (see chap. 45).

In the next section, we move from questions of rationale—the why—to questions of content—the what: which disciplines or areas of inquiry and what ways of making knowledge constitute the medical humanities or, as it is increasingly known, the health humanities.

The What

The humanities disciplines traditionally represented and integrated in health professions education include history, literature, philosophy, bioethics, and comparative religion as well as those aspects of the social sciences that have humanistic content and employ humanistic methods relevant to medical inquiry and practice, particularly sociology, anthropology, and psychology. The field has been further developed and influenced by such philosophical and pedagogical projects as postmodernism, feminism, disability studies, cultural studies, media studies, and biocultures.

Moreover, the influence of narrative inquiry on the medical/health humanities cannot be overstated, in particular physician and literary scholar Rita Charon’s pioneering work in the theoretical development of narrative in medicine. Charon builds on the research of psychiatrist and anthropologist Arthur Kleinman, who writes in The Illness Narratives: Suffering, Healing, and the Human Condition (1988) that the interpretations of narratives of illness . . . is a core task in the work of doctoring (17) as well as on the work of bioethicists such as physician Howard Brody, who introduces the nature, complexities, and rigor of narrative ethics in his book, Stories of Sickness (1987).

Arguing that physicians must have the ability to listen to patients’ stories, to understand the meanings of such stories, and to be stirred in order to act in support of patients, Charon proposes that narrative competence is what humans use "to absorb, interpret, and respond to stories . . . [which] enables the physician to practice medicine with empathy, reflection, professionalism, and trustworthiness. Such a medicine can be called narrative medicine" (2001a, 1897). She continues:

Not only medicine but also nursing, law, history, philosophy, anthropology, sociology, religious studies, and government have recently realized the importance of narrative knowledge. Narrative knowledge is what one uses to understand the meaning and significance of stories through cognitive, symbolic, and affective means. This kind of knowledge provides a rich, resonant comprehension of a singular person’s situation as it unfolds in time, whether in such texts as novels, newspaper stories, movies, and scripture or in such life settings as courtrooms, battlefields, marriages, and illnesses. (2001a, 1898)

Narrative in the contemporary health professions curriculum is interdisciplinary in both nature and application: its tenets appear in patient interviewing, in making deeper sense of the medical record, in acts of diagnosing, and in psychosocial aspects of patienthood. Moreover, narrative inquiry is also the source of an explosion of reflective writing across the curriculum.

As the field and its practitioners have become less a novelty or an upstart in health professions education (over 60 percent of medical schools currently report both required and elective humanities courses), the benchmarks by which academics chart the successful growth of a discipline have been slowly and steadily met. These include several well-respected peer-reviewed journals; a professional society; annual meetings in the United States and international conferences; active Listservs, blogs, resource databases, and networks; and graduate programs awarding both master’s degrees and doctorates. In addition, the development and implementation of undergraduate programs in the medical/health humanities has been nothing short of phenomenal, as many colleges and universities now offer undergraduate minors, concentrations, and/or certificates as a valuable complement to science-based curricula and as independent programs that address current and complex issues in the humanities and social sciences. Such programs simultaneously defy and transcend C. P. Snow’s 1959 division of human thought and endeavor into two antagonistic cultures (Snow [1959] 1993). In her contribution to this reader, literary scholar Catherine Belling discusses the long-standing effects of this dualism, especially in education, and identifies the essential role of the humanities as the analysis and critique of both cultural texts—art and science (see chap. 39).

Indeed, it is the expansion and variety of humanities inquiry across all educational settings that prompt this book, the Health Humanities Reader. While there is still ongoing debate between scholars and educators about the desirability of a core humanities curriculum in health professions education and undergraduate programs that would create standards and establish a common body of knowledge, a consensus exists that both teachers and students need a text—one that is a readily available, fairly representative introduction to and illustration of the field. We believe, as do many of our colleagues and our students, that a central reader such as this will serve

• as a touchstone for both theory and practice among scholars and educators,

• as an accessible and useful text across a variety of settings, and

• as an illustration of how the humanities have identified issues (illness, death and dying, disability, patient-professional relationship) that bridge disciplines and demonstrate how multidisciplinary perspectives must be included in the exploration of such complex issues.

However, this marked expansion has also prompted demands for inclusiveness. As an inter- and multi-disciplinary field, the medical humanities have become increasingly complex with multiple identities and myriad challenges, not the least of which is the demand for measurable outcomes or identifiable competencies. But by its very disciplinary descriptor, medical, it retains a narrow frame, largely concerned with the value of history, literature, philosophy, art, and media to medical education and medical practice. Scholars such as Paul Crawford (2010), who has created the International Health Humanities Network, are arguing for a more inclusive, outward-facing and applied discipline, embracing interdisciplinarity and engaging with the contributions of those marginalized from the medical humanities, such as allied health professionals, patients, and informal caregivers (Crawford et al. 2010, 4). Thus, as we near the half centenary of the discipline, we believe that the original essays and imaginative works in this volume will not only offer readers an engaging and diverse representation of the field but will also persuade them to adopt the more encompassing, contemporary, and accurate label of the current academic enterprise—the health humanities.

For some scholars and educators, the terminological shift from medical humanities to health humanities might feel like just an academic exercise or a mere distraction; while we all know that nomenclature matters, this shift will likely have little effect on our daily work. However, mirroring the dynamic but deliberative process that fostered and shaped the original disciplinary project over forty years ago, timely and robust discussions have emerged about the political, ethical, rhetorical, and cultural implications of such as shift. For example, in a lively and recent conversation on a medical humanities Listserv, reactions to such a suggestion ranged from simple expressions of appreciation for inclusiveness—This field is important to all professionals including physical therapists, social workers, nurses and not just physicians (Shirley 2012)—to practical considerations around community engagement and public policy—The notion encompasses more than the individual’s experience of disease, illness and health, but the community perspective of these issues including equity, funding, policy, resources allocation (Klugman 2012)—to nuanced and informed perspectives addressing a more contemporary focus on global health. For example, one of the contributors to this reader, Daniel Goldberg, shared the following:

Part of the rationale . . . reflects the critical importance of distinguishing between the delivery of medical care and the pursuit of health. Many sick people are not actively patients, may not engage biomedicine much if ever, and perhaps more importantly, overwhelming evidence suggests that health and its distribution in human populations is mostly not the result of medical care (which is not to deny the myriad ways in which the latter is both meaningful and important). Thus, I would suggest that any definition of the health humanities cannot be limited to the field of medicine, medical care, or medical professionals, and also ought not have as its central goal the advance of the practice and science of medicine. I also believe our primary goal should be directed to health and human flourishing rather than to the delivery of medical care; the two objectives are actually not nearly so tightly interwoven as most tend to think, even if both are independently of great worth. (2012)

The various disciplinary identities and affiliations of all the contributors to this volume meet the objective for inclusiveness and expansiveness; as such, they model the kind of inter- and multi-disciplinary inquiry and innovative collaboration that is the hallmark of health humanities scholarship and education. Represented in this reader are writers from medicine, nursing, pharmacy, and undergraduate education; writers who are clinical practitioners, community health workers, educational filmmakers, and patients; and writers credentialed in history, literature, philosophy, rhetoric, religion, and cultural studies. All are writing across the health professions. Essays such as Felicia Cohn’s on religion and end of life, or Rosemarie Tong’s on parental responsibility and genetic enhancement, or Allison Kavey’s on the history of epidemic diseases would be relevant and meaningful to a physician, physical therapist, social worker, clinical ethicist, or disability studies educator.

With that claim in mind, where is all this diverse content, all this creative activity, located in an already overstuffed health professions curriculum, and how is it taught?

The How

The humanities are found throughout health professions curricula in various forms and with a full range of complexity regarding content and pedagogy. In the most instrumental approaches, humanities content is inserted into lectures for the purpose of illustrating a phenomenon: a film or YouTube clip, an excerpt from a poem or short story, a paragraph lifted from a New Yorker article—the genre Charon (2001b) calls the lay exposition of narrative writing. The content itself is likely not explored through the methodologies of literary criticism or media studies but more often used to exemplify something, even to liven up a class. Frequently, such an approach finds its way into smaller formats like group discussions, where the aesthetics of a short story or the elements of a film are bypassed for the examination of the clinical or bioethical relevance of its content. There is the tendency here to view the text as an instance of clinical reality—Away from Her as a case study of Alzheimer’s, for instance—rather than a linguistic or imagistic construct.

Teaching humanities disciplines with increasing complexity involves a fuller engagement with whatever text is under study—a documentary film, an historical essay, a bioethics case, a legal document, or a classic work of fiction, such as Frankenstein. This kind of critical practice has the potential to alert students to language in ways they would not have recognized otherwise: the words that caregivers and patients use when attempting to understand each other, the plots of the stories patients tell, the themes and tones of various narratives, the pervasive but unspoken issues surrounding power in healthcare settings, the layers of complexity in seemingly uncomplicated decisions, the unspoken worldviews and values informed by religion and spirituality.

Over the past twenty years, cultural studies and disability studies have influenced many disciplines and pedagogies, including the medical/health humanities. With these orientations, students encounter texts that might be literary, historical, or media produced and that include arts-based and cultural artifacts. These materials raise issues related to power, authority, and justice in health care and challenge the hegemony of a biomedicine that contributes to disparities and the discrimination of persons who don’t quite fit the codified and naturalized norms of health. Such approaches offer teachers and students an opportunity to examine critically the origins and nature of their personal beliefs and values, the beliefs and values embedded in the curriculum and the learning environment, as well as institutional policies—all of which intersect and that influence the quality of care they give to patients. Such approaches also require that teachers and students step out of their comfort zone in order to raise difficult and complex issues, scrutinize their own biases and prejudices, and disturb their reliance on a biomedical approach to health care—in other words, a pedagogy of discomfort (Boler 1999). The enactment of this kind of fearlessness is dramatically and poignantly represented in the essays of Michael Blackie and Erin Lamb, Sayantani DasGupta, and Rebecca Garden in this reader. Finally, in addition to engaging them in such critical and political inquiry, the materials and methodologies of the medical/health humanities can reinforce students’ sense of agency in developing their own professional identities, understanding their own special influence on healthcare practice and delivery, and accepting their own responsibility in how caregiving is both taught and modeled.

The how of this section can also refer more specifically and more practically to the design of this particular reader. We recognize that there are multiple organizational strategies for a work of this breadth and depth, and we hope that users will develop their own frameworks and connections within and among the contents. Our own process was simple and straightforward: we first identified a number of common topics in the health humanities and next invited recognized scholar-teachers from a variety of disciplines to address that topic in an original critical essay. Finally, we included an imaginative or reflective piece by an artist, writer, teacher, or scholar that explores the topic. Our goal with each section is to perform a 360-degree examination or expression of a topic and show how different methodologies deployed by scholars and artists compliment and comment on the same theme.

It is our hope that this unique collection of critical essays and creative works by recognized scholars, educators, artists, and clinicians will empower and enlighten students, inspire and support teachers, and advance and focus health humanities study and research.

Part I

Disease and Illness

Chapter 1

Being a Good Story

The Humanities as Therapeutic Practice

Arthur W. Frank

Certain people remain especially vivid in my memories of the years I spent speaking to illness support groups. One was a man I met at a prostate cancer group. He challenged what I was saying, and I have been trying to respond to him, in different ways, ever since.¹

I was there to talk about how to make illness something worth living with, which is a notch up from simply living with illness. This fellow was probably the age I am now—mid-sixties—lean and gray, looking like he had lived a physically active life. He spoke without much affect, yet forcefully. His statement was nominally phrased as a question, but it was a form of testimonial. He asked what all this meant when you were in pain all day, scarcely able to move. His life at that point seemed completely rooted in his ill body, and that body offered only pain, little more of capacity or interest.

My response to him tried to tread an ultra-fine line: recognizing the reality of his pain but suggesting that he was well enough to get to this meeting, and so maybe he could find other ways to re-create a life around his pain. One of the most difficult messages to convey without seeming to blame people is that they do have a basic choice: either allow illness to determine their lives, which was the position this man assumed, or seek the energies to sustain a life that is more than illness. That message is all the more difficult to convey because it is much easier to speak from a position of health than to practice while being ill.

Even healthy people who have been ill fairly recently, as I had been when I spoke to that group, risk making it sound too easy to live with illness. We are like skiers standing at the top of an especially steep slope. From the security of that stationary perspective, every turn we plan leads naturally to the next planned turn. It’s easy until we’re in motion. Then nothing seems as it was when we surveyed the hill as an abstract problem. The man at the meeting who challenged me was actually on the slope; I stood at the top, contemplating it, and there was something pretentious about my shouting down advice to those from whom I stood apart. And yet he needed advice. He was not moving through illness; he was stuck in his pain. A great danger of pain is how it can immobilize a person. Pretentious as advice may be, people sometimes benefit from it. My memory of that man introduces the dilemma of the humanities when they address both those who are ill and those who care for them.

To put the same fable in different terms: perhaps everything I write now, in health, is a message to my future self when he is ill. I hope some of the messages get through when he needs them. I hope they can penetrate the loss and fear, the fatigue and demoralization of illness. I hope they remind me of how I might renew interest in life, find value, even take pleasure in what continues to unfold. That, I believe, is the task of the humanities: to help people find interest, value, and pleasure in words, conceptual schema, images, and imaginations. Illness is one of the ultimate tests of the reach of the humanities to make themselves relevant.

This chapter’s title is adapted from one of my favorite lines in any personal illness narrative. Anatole Broyard, writing as he lived with metastasized prostate cancer, describes the relationship he desires with his physician: I want to be a good story for him (1992, 45). This chapter asks how to do that. The humanities have extraordinary resources that can help ill people first to tell good stories and then in the telling to become good stories, not only for their physicians but for themselves, their loved ones, and anybody else they happen to run into. The point, I believe, is not to claim that illness is, in Broyard’s title word, intoxicating, but to elevate illness above the diminished condition implied by the unfortunate verb coping. Stories are good because they are interesting. Illness can be an interesting story.

Or to put the issue differently: Oh, your poor distracted doctor-ridden carcass, wrote Henry James to his brother William whose health was failing (Richardson 2006, 401). The word that makes this line most memorable for me is distracted. Henry James, who spent a great deal of his own life being a doctor-ridden carcass, knew where the true peril of illness lies—in medical distraction from living. This chapter offers ideas about one means of recovery from the distraction that too often attends illness: make the illness a story and rediscover interest in life by making the story a better one.

A few distinctions seem necessary as a preface.

A Space for Humanities in Illness

Over two decades ago, when I was struggling to find a voice and a genre to tell stories of several years when I had been critically ill (Frank [1991] 2002), four distinctions emerged as necessary to my clarity about what was happening around me and my capacity to use language truthfully. Even then, none of these distinctions was my original discovery, and today their recognition remains unevenly distributed. I think of these distinctions not as binary polarities but rather as recurring tensions.

The first tension is between illness as an experience and disease as a condition of the body. Disease can be reduced to biochemistry, while illness involves a biography, a reflective consciousness, multiple relationships, and institutions. By the time disease is imagined, it has already become illness. The humanities become necessary resources as soon as people try to live illness as more than bare disease. At least two qualifications are required. First, imagining disease is a perilous business; for example, imagination can plunge a sick person into a fearsome future that may never happen or, if it does happen, may not seem as unlivable as imagined. Second, illness and disease are always conjoined: they could be separate only in the impossible condition of the mind locating itself outside the body which is the mind’s locus of orientation for imagining, reflecting, and narrating. We tell stories not only with our bodies but equally from our bodies and as bodies. Consciousness of illness is inevitably shaped by being a diseased body, yet consciousness can imagine its body and tell stories about that body.

The second tension is between being a patient and being an ill person. The person who is ill is a patient only some of the time and in certain respects and remains many other things as well. The healthcare professions impose the term patient as a total identity; ill people are led to forget that their lives are more than being sick. In Henry James’s condolence to William, becoming doctor ridden is a condition of thinking of oneself as only a patient, which distracts the ill person from everything else that is going on and its significant value. To risk putting a gloss on what Henry James had the sense to leave open, the patient is distracted from each moment’s potential rediscovery of how fascinating life is—a way of living that both James brothers exemplified. Being a patient is a condition of being a character in a story told by an author who has already decided all that any character is capable of being and who requires each to remain strictly within these boundaries.² It is a dullness that precipitates fatalism. It is the opposite of health.

The third tension is that the medical history is not the ill person’s story. When I was ill and had multiple health professionals taking versions of what they called my history, I quickly realized that they suffered from an illusion—that what they were learning about me was equivalent to knowing me as a person. The interviewer who elicits the medical history works within already-set parameters of what counts as relevant, constantly paring down what is told to fit those parameters. The medical patient becomes delimited by his or her history. If the storytelling is truly a relationship, the storyteller is invited to reinvent his or her character.

Broyard exemplifies the distinction between the medical history and the ill person’s story by alluding to Marcel Proust’s criticism of his doctor failing to take into account the fact that he read Shakespeare (1992, 47). I think of Shakespeare in this statement as a sort of algebraic x, standing for whatever gives a person his or her unique sense of taste and imaginative possibility. In relations of storytelling, the listener is listening for what counts as that person’s Shakespeare—what the storyteller needs the listener to know about him or herself, to appreciate that self.

The fourth tension is between the provision of treatment and the offering of care: treatment is provided as a service; care is offered as a gift. Treatment can be expressed in a monetary value; one can buy more attentive treatment but not true care. The literature on care is overwhelming in its breadth and depth. Let me suggest the care/treatment tension in the following distinctions:

• Treatment is instrumental; its objective is an end state beyond itself. Care is consummatory; giving and receiving care is an end in itself.

• The provision of treatment requires technical expertise that can be one-dimensional. The giving of care involves the emotions as well as cognition.

• The treatment provider uses his or her body as an instrument. The caregiver’s embodiment is compassionate, feeling the suffering of the one who is cared for, while sustaining a boundary that enables the caregiver to act effectively rather than becoming engulfed—another danger of imagination (Frank 2004, 121–122).

• Providing treatment involves a clearly defined boundary between one who provides and one who is treated. The relational nature of care requires a fluid, shifting boundary. Giver and receiver are both subjects, not subject and object.

• Not last but sufficient for this chapter’s purposes, treatment is untroubled by its use of power as a resource. Care is endlessly sensitive to asymmetries of power (White 2011).

These four tensions play out on both sides of the street, the side of the ill person who is sometimes a patient and the side of those who treat and sometimes care for this person. People on both sides need the humanities because they are all disenchanted, to use a sociological word.³ Disenchantment, to give it the briefest elucidation, is a condition in which surprise is rarely if ever a good thing and control is always aspired to; mystery represents a failure of rational understanding, adherence to routine trumps any benefit of innovation, and anything worth discussing is measurable, preferably in numeric form. Max Weber (1958) gave disenchantment its classic sociological formulation early in the twentieth century, but his contemporary William James truly evokes the feeling of disenchantment:

The flowers wither at its breath, the stars turn to stone; our own body grows unworthy of our spirit and sinks to a tenement for carnal senses only. The book of nature turns into a volume on mechanics, in which whatever has life is treated as a sort of anomaly; a great chasm of separation yawns between us and all that is higher than ourselves; and God becomes this nest of abstractions. (James 2010, 289)

Disenchanted illness is the body grown unworthy of the spirit, sinking into its own senses, especially the imperialism of pain, and disenchanted treatment reduces life to mechanics.

Disenchantment affects both ill people and healthcare professionals, but on any particular occasion, strategic necessity may require privileging the perspective of one group or the other. In my earlier writing, I addressed ill people’s disenchantment by focusing exclusively on their stories when it seemed that ill people’s voices were so subordinated to medicine that they needed a venue of their own in order to be heard (Frank 1995). Necessary as it may be to work only one side of the street, this approach risks obscuring the crucial point that storytelling is a relationship. To return to this chapter’s title, when Broyard says he wants to be a good story for his doctor, the doctor’s participation is crucial. Broyard’s particular resource, based on his literary reputation, was that when his physician’s participation was not forthcoming, he could publicly imagine that participation before an audience of physicians for whom he could become a very good story.⁴

In health care, this relation of storytelling rests on a fundamental asymmetry. The ill person is the one whose life is being reduced to the bare facts of disease and its progression. Healthcare professionals (a designation that may be the most clunky phrase imaginable, but sorting out any comparable term is beyond this chapter’s scope) provide ample testimony how their work often reduces their sense of who they are. But in the relationship at the bedside, the professional has a responsibility to offer care—and then to find other venues for her or his own care. The work of the humanities in illness seems to me to reflect this asymmetry: helping ill people to become good stories and helping professionals to help ill people, which can include telling their own stories but always to the end of participating in their patients’ stories.

The Humanities as Therapeutic

To open up the crucial issue of how stories help people who are suffering, let me follow William James’s argument presented in a lecture given in 1906 in which he described a general human problem in terms that evoke the demoralization of illness: "The human individual lives usually far within his limits; he possesses power of various sorts which he habitually fails to use. He energizes below the maximum, and he behaves below his optimum. In elementary faculty, in coordination, in power of inhibition and control, in every conceivable way, his life is contracted" (James 2010, 278; emphasis added). This is illness: the effect of contracting the life of the ill person, narrowing horizons of possibility, filtering and reducing the possibilities for joy, to use a word seldom spoken in institutional medicine (Brody 2009, 58–59). It may well be that illness only exacerbates what James maintains is a habitual condition of humans living with their energies below the maximum, but that further reduction is what is intolerably demoralizing about being sick.

The task, potential, and capacity of the humanities is therapeutic, insofar as the humanities seek to expand what illness has contracted. James called these dynamogenic effects, and he located three principal sources: excitements, ideas, and efforts (2010, 267–268). Excitements include being caught up in events that require extending one’s energies to meet the crisis of the moment; James’s examples are soldiers’ reports of discovering enhanced energies in battle. His examples of efforts include ascetic spiritual practices such as self-starvation and sleep deprivation. To illustrate, he quotes a long report by a man who undertook a rigorous program of yoga and reported feeling new and previously unimagined energy within himself. Ideas are exemplified by conversions, whether they be political, scientific, philosophical, or religious, and the energies that attend these (2010, 268).

James is eloquent in his enthusiasm for dynamogenic programs, but he is also realistic: Of course there are limits: the trees don’t grow in the sky. Illness is disease, and disease will take its toll; hospitals are institutions, and institutions impose their needs upon individuals, both patients and staff. Yet James refuses to allow these limits to have the last word: But the plain fact remains that men the world over possess amounts of resource, which only very exceptional individuals push to their extremes (James 2010, 268). Lest James’s historically conventional gender bias of language be distracting, I note that his prime example of such an exceptional individual is a woman whom he leaves anonymous but is likely to be his sister Alice:

The most genuinely saintly person I have ever known is a friend of mine now suffering from cancer of the breast. I do not assume to judge the wisdom or unwisdom of her disobedience to the doctors, and I cite her here solely as an example of what ideas can do. Her ideas have kept her a practically well woman for months after she should have given up and gone to bed. They have annulled all pain and weakness and given her a cheerful active life, unusually beneficent to others to whom she afforded help. (James 2010, 278)

Idealized as that portrait may be, it provides an illustration for what the humanities can offer as a therapeutic in response to the loss of what James calls energy, a diffuse term he uses to designate the capacity to live life to the fullest. Contemporary psychological writing seems to use resilience in much the same way. Against the contraction brought about by disease and its treatment, the humanities can give many people the often self-reported sense of their lives having become enhanced. James would understand these reports as reflecting the vitality that attends using one’s energies at previously unexperienced levels. The ill person comes to realize—if conditions are right and resources are available—how much of his or her life is being lived with a sort of cloud weighing on us (2010, 265). One’s body may, indeed, be sicker (or disabled or older), but that can make the sense of dispelling the cloud all the more exhilarating.

A note of caution is necessary, however. If the humanities offered only sunlight and flowers, these would be thin offerings. The humanities also offer tragedy and all manner of sufferings made more intense in their aesthetic depiction. They offer the bitter humor of irony and the revenges of satire. They offer equipment for surviving illness. The danger of aesthetic depictions of suffering is that the idealized image can displace the reality; the work of art can become a form of denial. That danger seems greatest when those who are not ill or no longer ill wax on about all that illness can offer. Support groups, in particular, suffer from a rhetoric of enforced cheerfulness (Frank 2012). This danger seems minimized when people depict their own suffering while it remains reasonably proximate. The greater benefit of aesthetic depictions of suffering is to make ill people feel less alone. That—feeling less alone—requires the increased energy that James wrote about, but once acquired, it enhances people’s energy.

Storytelling as Everyperson’s Art of the Everyday

I focus on storytelling not because it enjoys any privilege as an art form but because it has a common-denominator status of accessibility. Storytelling certainly can be impaired (Hydén and Brockmeier 2008), but because most people are already equipped to tell stories when they become ill, storytelling may have the most inclusive claim to be every person’s art form. Moreover, stories have the capacity to refocus the everyday. A great sociologist, who often adopted a cynical stance, once said to me that in order to make grading tolerable, he sent students out to do observations because even dull students can write interesting ethnography. I suggest that even a dull life can be made interesting when transformed into a good story.

If I wish one thing for myself when I finally do become seriously ill again, it is that I remember, as soon as possible after the initial shock, that my condition has given me access to rich materials for storytelling: people, at moments of crisis, responding to suffering. Awareness of having that material all around me might be what James meant by an idea that can have the dynamogenic force of awakening inner energies. The idea can become a practice. For example, do not simply suffer the rudeness of the hospital worker (attending surgeon or admissions clerk); draw out that rudeness to its extreme and explore it in order to discover a character about whom a story can be told. Maybe the story will be an Oscar Wilde farce or an Orwellian dystopic fable—or both, at different times, to different listeners with whom the story will be the basis of a relationship that will renew energies.

Lest these projections into the future seem naive, I fully recognize that upon becoming seriously ill again, I will first be submerged in the fear and anxiety of realizing that the nagging symptom is not going to go away; then will come the shock of having some physician confirm (gently, if I’m lucky) that my worst fears are justified; followed by the news of how bad both the symptom progression and the treatment are going to be. This submergence may last a day or a week or a month. But most diseases these days are chronic for some time before they are critical. Sometime, maybe by the second month, the losses will be counted and dealt with (so far as possible), the routine will have become just that, and then I hope to remember that I still can be a storyteller.

If all but the most impaired persons are already equipped to be storytellers of their illness, that does not mean that storytelling to renew energies will occur without specific encouragement. Life-threatening illness—the kind that most needs stories—remains something of a taboo topic, although that has changed enormously in the last two decades. People need models on which to tell their stories, and here we encounter a significant paradox: stories are very much one person’s own, but any person’s story is also a more or less (often less) creative mixture of previously heard stories. That paradox is crucial: people’s claim to the authenticity of their own stories deserves to be honored, but nobody makes up his or her story by him or herself. Birds make their own nests, but neither the materials nor the design are innovations. The stories in which we humans nest our lives are woven in predictable ways from predictable elements. We could not tell our own stories without having others’ stories as sources of material and design. The danger of others’ stories is that they can colonize the imagination of the person who necessarily borrows from them.

For storytellers of illness today, the good news is that multiple models are available in books, films, newspapers, and perhaps most of all, on the Internet. However, the danger is that those public stories can make too encompassing a claim, imposing themselves as models and crowding out different stories. I see no way to avoid this duality: storytelling needs models, but models risk taking over any person’s story. The response, I believe, is not to avoid stories—which would be impossible and utterly self-defeating—but to avoid getting stuck in one niche of stories. The remedy to