Narrative Matters

The Power of the Personal Essay in Health Policy

edited by Fitzhugh Mullan, M.D., Ellen Ficklen, and Kyna Rubin foreword by Abraham Verghese, M.D.

Publication Year: 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 the journal 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, 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.

Published by: The Johns Hopkins University Press

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It is a pleasure to write a foreword to a unique collection of health policy narratives, the best of the best. I have watched the Narrative Matters section of Health Affairs evolve from a novel, almost experimental section conceived by Fitzhugh Mullan and John Iglehart in 1999, to its present status where it seems to have always been part of Health Affairs. When the editors announced this new section of Health Affairs, I was delighted...

Preface: About this book

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pp. xiii-xvi

If a picture is worth a thousand words, a good story is worth many columns of statistics. Stories present ideas, conflicts, and, sometimes, resolution. They have depth and dimension, drama and emotion, making them more memorable than data alone. This belief in the power of the story encouraged us—with support from the Kellogg Foundation—to start the Narrative Matters section of Health Affairs in 1999. It seemed to us that the personal narrative could bring a perspective to the...

Contributors

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pp. xvii-xxii

CHAPTER 1: WRITING TO CHANGE THINGS: ESSAYS ON THE POLICY NARRATIVE

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pp. 1-20

Back in 1972, when I first set about recording my experiences as a “radical” medical student at the University of Chicago and as a resident in the Bronx, a fellow activist challenged me. “Where do you come off writing your memoirs?” she asked with an in-your-faceness characteristic of the time. “Who do you think you are, anyway? Fidel or somebody?” I...

CHAPTER 2: DOLLARS AND SENSE: HARD FINANCIAL REALITIES

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pp. 21-64

Not long ago my son had surgery to repair four small hernias. They were lined up in a row, extending vertically above his navel. Like so many of the weird things teenage boys come home with, this one left his father and me scratching our heads and, when the drama was over, very grateful for health insurance. Andrew is a budding Ska trombonist, playing a style of music that combines reggae and rock. He had just played his first club gig with a band...

CHAPTER 3: BEARING WITNESS: PATIENTS’ STORIES

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pp. 65-104

We had just spent a pleasant morning with our three-year-old daughter watching mule deer feed at the edge of a high mountain meadow near Chama, New Mexico. Jesse, a recently retired family friend, had showed us where he’d lived while herding sheep as a youngster in the mountains above Tierra Amarilla. The excursion had been...

CHAPTER 4: THE MADDENING SYSTEM: FRUSTRATIONS AND SOLUTIONS

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pp. 105-140

After twenty-five years of living with high-level quadriplegia, I was familiar with the routine. Every five or six years my wheelchair-repair person would tell me that my chin-controlled motorized wheelchair (equipped with a recliner system designed to reduce my risk of developing...

CHAPTER 5: TROUBLE IN THE RANKS: PROFESSIONAL PROBLEMS

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pp. 141-168

Having grown up with both a mother and a cousin who were registered nurses, I was familiar with both the value and the inherent challenges of being a nurse. My own experience of being a patient who was hospitalized twice for open-heart surgery before the age of thirty also taught me the importance of competent nursing care. Yet nothing could...

CHAPTER 6: DRUG RESISTANCE: BATTLING UNDUE INFLUENCE

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pp. 169-184

I was sitting in a room off the hospital cafeteria with a group of our family practice residents, waiting for teaching rounds to begin, when I asked them about the pledge taken by some doctors to “just say no” to drug reps by not accepting any gifts from them. Did the residents think that any of their peers would sign such a pledge? “Maybe half would,” said...

CHAPTER 7: DISPARITY DILEMMAS: STORIES ON RACE AND ETHNICITY

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pp. 185-222

I had been in practice in the Bronx for more than twenty years. Few surprises remained. After I’d been a family doctor for so much time in an area that had become synonymous with urban blight, the unusual had become usual. Treating patients with upper respiratory infections became a welcome reprieve from the challenges of helping single moms with acquired...

CHAPTER 8: VALUES AND CHOICE: STORIES OF PRACTICAL ETHICS

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pp. 223-286

They were older than I had pictured the parents of a six-month-old infant to be. Appearing small and vulnerable, they sat nervously on the edge of the hard-cushioned vinyl couch. I had spoken with them for the first time by phone four hours earlier. Since then they had traveled by car from their small hometown to the Children’s Hospital at the University...

INDEX

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pp. 287-293

E-ISBN-13: 9780801892035
E-ISBN-10: 0801892031
Print-ISBN-13: 9780801884795
Print-ISBN-10: 0801884799

Page Count: 320
Publication Year: 2006