Narrative Matters

by Mullan, Fitzhugh

• ISBN13: 9780801884795
• ISBN10: 0801884799
• Edition: 1st
• Format: Paperback
• Copyright: 2006-08-01
• Publisher: JOHNS HOPKINS UNIV PRESS

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