Narrative Matters--The Book

Narrative Matters: 
The Power of the Personal Essay in Health Policy

Edited by Fitzhugh Mullan, Ellen Ficklen, and Kyna Rubin
(Johns Hopkins University Press, 2006)



This anthology brings together the personal stories of patients, physicians, policy makers, and others whose writings humanize discussions and deliberations about health policy. Drawn from the popular "Narrative Matters" column in Health Affairs, the essays epitomize the policy narrative, a new genre of writing that explores health policy through the expression of personal experiences. Forty-six articles focus on such topics as the hard financial realities of medical insurance, AIDS, assisted suicide, marketing drugs, genetic engineering, aging, organ transplants, and ethnic and racial disparities in the health care system. The narratives raise ethical and moral issues that are being studied in many of our nation's medical schools. This compelling collection provides important insight into the human dimensions of health care and health policy.



About The Editors





"The power of these narratives shakes the reader, who cannot but apprehend health care from a new, individual perspective and commit him- or herself to make their part of the system better and more sensitive."

--Ezekiel J. Emanuel, M.D., Ph.D.

"To begin to understand the many challenges facing the U.S. health care system, you could spend years in the shadow of doctors, patients, medical students, and legislators. Or you could just read this book. Narrative Matters opens a window into what's happening in American medicine through the minds and pens of those in the middle of it all. At times insightful, depressing, uplifting, and direct, Narrative Matters accomplishes a rare feat--a book as well-written as it is necessary."

--Joshua M. Sharfstein, M.D.,
Baltimore City Commissioner of Health

"Narrative Matters showcases some of health care's most stunning writing. The stories are moving, eloquent, and often unforgettable."

--Atul Gawande, M.D.,
author of Complications: A Surgeon's Notes on an Imperfect Science

"For any reader enthralled by the literature of medicine, these fascinating, compelling, and beautifully written doctor stories were written expressly for you."

--Howard Markel, M.D., Ph.D.,
The University of Michigan Medical School,
author of When Germs Travel and Quarantine!

"Narrative does matter. That’s why these writers are so successful in making the reader feel and respond to their frustration, anger, pain, sadness, confusion, joy, or loving kindness by writing personal narratives of health care. Had they addressed us on a purely intellectual level, we might have developed a clearer idea about how to create a more equitable health care system, but we’d have less motivation, less passion, for the task. Narrative Matters is a splendid achievement. This wonderful collection will make a big difference in the way the reader thinks about many of the important issues facing health care today. I suspect this book will do a great deal to enhance public awareness of the human stories at the center of our U.S. health care system."

--Jack Coulehan, M.D., M.P.H.,
Institute for Medicine in Contemporary Society,
State University of New York at Stony Brook,
and co-editor of Primary Care: More Poems by Physicians

"A doctor kneels on a highway and watches a child die from a completely preventable accident, as the boy's father wails, "Wake up, my son!” A baby dies because of language barriers and bureaucracy in the clinic. A nurse quits in despair, stopped by the system from doing the right thing. A governor makes a wrenching choice between a world-class transplant program and basic care for 600,000 people. If these true stories of needless tragedy don't convince you our health care system is broken, you must have a heart of stone."

--Melvin J. Konner, Ph.D., M.D.,
author of Becoming a Doctor: A Journey of Initiation in Medical School

"Narrative Matters shows how health care policies affect real people. Policy loves charts and statistics. These stories fill in the conflicts, the emotions, the frequent pain and occasional joys of being somewhere on one of those charts. Numbers make no moral demands on us; only faces require a response. In these stories, we see the faces that health care policy is all about."

--Arthur W. Frank, Ph.D.,
University of Calgary, author of The Wounded Storyteller: Body, Illness, and Ethics and The Renewal of Generosity: Illness, Medicine, and How to Live

"This compilation is unique ... because of its strong relevance to today's health policy ... These narratives matter."

--Galit M. Sacajiu, JAMA


About The Editors

Fitzhugh Mullan, M.D., is Murdock Head Professor of Medicine and Health Policy and professor of pediatrics at the George Washington University; he is a contributing editor at Health Affairs and editor of its "Narrative Matters" section.  

Ellen Ficklen was a senior editor at Health Affairs and co-editor of "Narrative Matters."

Kyna Rubin
is an independent writer and the former co-editor of "Narrative Matters."