Narrative Matters: Writing to Change the Health Care System

Drawn from the popular "Narrative Matters" column in the journal Health Affairs, these essays embody a vision for a health care system that centers the humanity of patients and doctors alike. Health care decision making affects patients and families first and foremost, yet their perspectives are not always factored into health policy deliberations and discussions. In this anthology, Jessica Bylander brings together the personal stories of the patients, physicians, caregivers, policy makers, and others whose writings add much-needed human context to health care decision making. Drawn from the popular "Narrative Matters" column in the leading health policy journal Health Affairs, this collection features essays by some of the leading minds in health care today, including Pulitzer Prize–winner Siddhartha Mukherjee, MacArthur fellow Diane Meier, former Planned Parenthood president Leana S. Wen, and former secretary of health and human services Louis W. Sullivan. The collection also presents important stories from lesser-known voices, including a transgender doctor in Oklahoma who calls for better treatment of trans patients and a palliative care physician who reflects on how perspectives on hastening death have changed in recent years. A foreword written by National Humanities Medal recipient Abraham Verghese, MD, further rounds out the book. The collection of thirty-two essays is organized around several themes: • the practice of medicine • medical innovation and research • patient-centered care • the doctor-patient relationship • disparities and discrimination • aging and end-of-life care • maternity and childbirth • opioids and substance abuse Contributors: Louise Aronson, Laura Arrowsmith, Cheryl Bettigole, Cindy Brach, Gary Epstein-Lubow, Jonathan Friedlaender, Patricia Gabow, Katti Gray, Yasmin Sokkar Harker, Timothy Hoff, Carla Keirns, Raya Elfadel Kheirbek, Katy B. Kozhimannil, Pooja Lagisetty, Maria Maldonado, Maureen A. Mavrinac, Diane E. Meier, Dina Keller Moss, Siddhartha Mukherjee, Donna Jackson Nakazawa, Travis N. Rieder, Aroonsiri Sangarlangkarn, Elaine Schattner, Janice Lynch Schuster, Myrick C. Shinall, Gayathri Subramanian, Louis W. Sullivan, Gautham K. Suresh, Abraham Verghese, Otis Warren, Leana S. Wen, Charlotte Yeh

Table of Contents:
Foreword, by Abraham Verghese, MD List of Contributors Introduction Chapter 1. The Practice of Medicine The Importance of Being Abraham Verghese Rethinking the Traditional Doctor's Visit Maureen A. Mavrinac In the Safety Net: A Tale of Ticking Clocks and Tricky Diagnoses Maria Maldonado The Personal Toll of Practicing Medicine Elaine Schattner Chapter 2. Medical Innovation and Research Cancer, Our Genes, and the Anxiety of Risk-Based Medicine Siddhartha Mukherjee Beating a Cancer Death Sentence Jonathan Friedlaender A Black Alzheimer's Patient Wants to Be Part of the Cure Katti Gray Chapter 3. Patient-Centered Care "Nothing Is Broken": For an Injured Doctor, Quality-Focused Care Misses the Mark Charlotte Yeh The Battle of the Bundle: Lessons from My Mother's Partial Hip Replacement Timothy Hoff Even in an Emergency, Doctors Must Make Informed Consent an Informed Choice Cindy Brach Chapter 4. The Doctor-Patient Relationship How to Win the Doctor Lottery Donna Jackson Nakazawa At the VA, Healing the Doctor-Patient Relationship Raya Elfadel Kheirbek When Patients Mentor Doctors: The Story of One Vital Bond Aroonsiri Sangarlangkarn Chapter 5. Disparities and Discrimination "Go Back to California": When Providers Fail Transgender Patients Laura Arrowsmith A Simple Case of Chest Pain: Sensitizing Doctors to Patients with Disabilities Leana S. Wen Grasping at the Moon: Enhancing Access to Careers in the Health Professions Louis W. Sullivan Bridging the Divide between Dental and Medical Care Gayathri Subramanian In Rural Towns, Immigrant Doctors Fill a Critical Need Yasmin Sokkar Harker An Uninsured Immigrant Delays Needed Care Cheryl Bettigole Chapter 6. Aging and End-of-Life Care "I Don't Want Jenny to Think I'm Abandoning Her": Views on Overtreatment Diane E. Meier The Fall: Aligning the Best Care with Standards of Care at the End of Life Patricia Gabow Getting It Right at the End of Life Dina Keller Moss The Evolving Moral Landscape of Palliative Care Myrick C. Shinall Necessary Steps: How Health Care Fails Older Patients, and How It Can Be Done Better Louise Aronson A Family Disease: Witnessing Firsthand the Toll that Dementia Takes on Caregivers Gary Epstein-Lubow Chapter 7. Maternity and Childbirth Watching the Clock: A Mother's Hope for a Natural Birth in a Cesarean Culture Carla Keirns In the "Gray Zone," a Doctor Faces Tough Decisions on Infant Resuscitation Gautham K. Suresh Reversing the Rise in Maternal Mortality Katy B. Kozhimannil Chapter 8. Opioids and Substance Abuse Down the Rabbit Hole: A Chronic Pain Sufferer Navigates the Maze of Opioid Use Janice Lynch Schuster In Opioid Withdrawal, with No Help in Sight Travis N. Rieder The Fine Line between Doctoring and Dealing Pooja Lagisetty Intoxicated, Homeless, and in Need of a Place to Land Otis Warren Index

About the Author :
Jessica Bylander is a senior editor at Health Affairs and the editor of "Narrative Matters."

Review :
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, PhD Narrative Matters showcases some of health care's most stunning writing. The stories are moving, eloquent, and often unforgettable. --Atul Gawande, MD 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, PhD, MD For any reader enthralled by the literature of medicine, these fascinating, compelling, and beautifully written doctor stories were written expressly for you. --Howard Markel, MD, PhD 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 US health care system. --Jack Coulehan, MD, MPH This compilation is unique . . . because of its strong relevance to today's health policy . . . These narratives matter. -- "JAMA" This volume is relevant to researchers, clinicians, and health care policy makers, and I recommend it highly. -- "American Journal of Health-System Pharmacy" To begin to understand the many challenges facing the US 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, MD Very helpful . . . An essential library volume. -- "Journal of Immigrant Minority Health"