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

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. The Johns Hopkins University Press Contents......Page 6 Foreword......Page 10 Preface: About This Book......Page 14 List of Contributors......Page 18 CHAPTER 1 WRITING TO CHANGE THINGS: ESSAYS ON THE POLICY NARRATIVE......Page 26 Me and the System: The Personal Essay and Health Policy......Page 27 Using and Misusing Anecdote in Policy Making......Page 33 Out of the Closet and into the Legislature: Breast Cancer Stories......Page 39 CHAPTER 2 DOLLARS AND SENSE: HARD FINANCIAL REALITIES......Page 46 Gouging the Medically Uninsured: A Tale of Two Bills......Page 47 Tea, Biscuits, and Health Care Prioritizing......Page 53 Doctors Have Patients, Governors Have Citizens......Page 59 Hooked on Neonatology......Page 66 Here Comes Trouble......Page 73 Shopping for Long-Term Care......Page 77 On Being a Grantmaker......Page 83 CHAPTER 3 BEARING WITNESS: PATIENTS' STORIES......Page 90 ¡Despierta!......Page 91 Pizza Ship......Page 96 Where’s David?......Page 98 Maria......Page 104 Voices from the Clinic: AIDS Then and Now......Page 110 The Yellow Baby......Page 116 Blind Faith and Choice......Page 122 CHAPTER 4 THE MADDENING SYSTEM: FRUSTRATIONS AND SOLUTIONS......Page 130 Of Wheelchairs and Managed Care......Page 131 Getting the Elderly Their Due......Page 137 My Mother and the Medical Care Ad-hoc-racy......Page 141 Tin-Cup Medicine......Page 146 Acquainted with the Night......Page 152 Learning Genetics......Page 158 CHAPTER 5 TROUBLE IN THE RANKS: PROFESSIONAL PROBLEMS......Page 166 Accountable but Powerless......Page 167 Leaving Nursing......Page 173 Dolores......Page 179 Attending Death with Dignity......Page 186 CHAPTER 6 DRUG RESISTANCE: BATTLING UNDUE INFLUENCE......Page 194 A Matter of Influence......Page 195 As Drug Marketing Pays Off, My Mother Pays Up......Page 198 No Free Lunch......Page 203 CHAPTER 7 DISPARITY DILEMMAS: STORIES ON RACE AND ETHNICITY......Page 210 Out of the Shadow......Page 211 Subcutaneous Scars......Page 216 No Come Nada......Page 222 Concordance......Page 227 La Promotora......Page 234 Immigration Pediatrics......Page 240 CHAPTER 8 VALUES AND CHOICE: STORIES OF PRACTICAL ETHICS......Page 248 Casey’s Legacy......Page 249 No One Needs to Know......Page 254 At the End of a Day......Page 260 Life but No Limb: The Aftermath of Medical Error......Page 266 Incidental Illness......Page 272 The Rest Is Silence......Page 278 DNAbling Parents......Page 283 What Are We Going to Do with Dad?......Page 289 Kidneys and the Kindness of Strangers......Page 299 The Curtain......Page 306 C......Page 312 E......Page 313 H......Page 314 M......Page 315 P......Page 316 S......Page 317 Z......Page 318