Narrative Matters

by
Edition: 1st
Format: Paperback
Pub. Date: 2006-08-01
Publisher(s): JOHNS HOPKINS UNIV PRESS
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Summary

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 area 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.

Author Biography

Fitzhugh Mullan, M.D., is Murdock Head Professor of Medicine and Health Policy and professor of pediatrics at the George Washington University and editor of the "Narrative Matters" section in Health Affairs. Ellen Ficklen is 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."

Table of Contents

Foreword, by Abraham Verghese, M.D. ix
Preface: About This Book xiii
List of Contributors xvii
CHAPTER 1 WRITING TO CHANGE THINGS: ESSAYS ON THE POLICY NARRATIVE 1(20)
Me and the System: The Personal Essay and Health Policy
FITZHUGH MULLAN
2(6)
Using and Misusing Anecdote in Policy Making
JOHN E. MCDONOUGH
8(6)
Out of the Closet and into the Legislature: Breast Cancer Stories
BARBARA F. SHARF
14(7)
CHAPTER 2 DOLLARS AND SENSE: HARD FINANCIAL REALITIES 21(44)
Gouging the Medically Uninsured: A Tale of Two Bills
IRENE M. WIELAWSKI
22(6)
Tea, Biscuits, and Health Care Prioritizing
MARTHE R. GOLD
28(6)
Doctors Have Patients, Governors Have Citizens
RICHARD D. LAMM
34(7)
Hooked on Neonatology
JOHN D. LANTOS
41(7)
Here Comes Trouble
KAREN ROBERTS
48(4)
Shopping for Long-Term Care
DEBORAH STONE
52(6)
On Being a Grantmaker
MICHAEL LERNER
58(7)
CHAPTER 3 BEARING WITNESS: PATIENTS' STORIES 65(40)
iDespierta!
DANIEL J. DERKSEN
66(5)
Pizza Ship
W. RICHARD BOYTE
71(2)
Where's David?
JANETTE H. KURIE
73(6)
Maria
MAHLON JOHNSON
79(6)
Voices from the Clinic: AIDS Then and Now
ABIGAIL ZUGER
85(6)
The Yellow Baby
FITZHUGH MULLAN
91(6)
Blind Faith and Choice
RHIANNON TUDOR EDWARDS
97(8)
CHAPTER 4 THE MADDENING SYSTEM: FRUSTRATIONS AND SOLUTIONS 105(36)
Of Wheelchairs and Managed Care
ANDREW I. BATAVIA
106(6)
Getting the Elderly Their Due
DAVID CARLINER
112(4)
My Mother and the Medical Care Ad-hoc-racy
DAVID M. LAWRENCE
116(5)
Tin-Cup Medicine
FITZHUGH MULLAN
121(6)
Acquainted with the Night
PAUL RAEBURN
127(6)
Learning Genetics
SHARON F. TERRY
133(8)
CHAPTER 5 TROUBLE IN THE RANKS: PROFESSIONAL PROBLEMS 141(28)
Accountable but Powerless
BARRY ADAMS
142(6)
Leaving Nursing
RAY BINGHAM
148(6)
Dolores
DANIEL J. DERKSEN
154(7)
Attending Death with Dignity
SHARON LADUKE
161(8)
CHAPTER 6 DRUG RESISTANCE: BATTLING UNDUE INFLUENCE 169(16)
A Matter of Influence
HOWARD BRODY
170(3)
As Drug Marketing Pays Off, My Mother Pays Up
JANET R. GILSDORF
173(5)
No Free Lunch
PAUL JUNG
178(7)
CHAPTER DISPARITY DILEMMAS: STORIES ON RACE AND ETHNICITY 185(38)
Out of the Shadow
NEIL S. CALMAN
186(5)
Subcutaneous Scars
VANESSA NORTHINGTON GAMBLE
191(6)
No Come Nada
RICHARD S. GARCIA
197(5)
Concordance
ALOK KHORANA
202(7)
La Promotora
DARRYL M. WILLIAMS
209(6)
Immigration Pediatrics
FITZHUGH MULLAN
215(8)
CHAPTER 8 VALUES AND CHOICE: STORIES OF PRACTICAL ETHICS 223(64)
Casey's Legacy
W. RICHARD BOYTE
224(5)
No One Needs to Know
NEIL S. CALMAN
229(6)
At the End of a Day
ALOK KHORANA
235(6)
Life but No Limb: The Aftermath of Medical Error
CAROL LEVINE
241(6)
Incidental Illness
DANIELLE OFRI
247(6)
The Rest Is Silence
MICHAEL ROWE
253(5)
DNAbling Parents LISA
SWEETINGHAM
258(6)
What Are We Going to Do with Dad?
JERALD WINAKUR
264(10)
Kidneys and the Kindness of Strangers
DAVID STEINBERG
274(7)
The Curtain
W. RICHARD BOYTE
281(6)
Index 287

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