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 PrizeGÇôwinner 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
The narratives in this timely and diverse collection remind readers of the real people affected by health policy decisions and offer clear calls for policy action to improve health care. Narrative Matters is a powerful argument for humane, patient-centered care.
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
Foreword, by Abraham Verghese, MD List of Contributors Introduction
Chapter 1. The Practice of Medicine The Importance of BeingAbraham VergheseRethinking the Traditional Doctor's Visit Maureen A. MavrinacIn the Safety Net: A Tale of Ticking Clocks and Tricky Diagnoses Maria MaldonadoThe Personal Toll of Practicing Medicine Elaine Schattner
Chapter 2. Medical Innovation and Research Cancer, Our Genes, and the Anxiety of Risk-Based Medicine Siddhartha MukherjeeBeating a Cancer Death Sentence Jonathan FriedlaenderA 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 YehThe Battle of the Bundle: Lessons from My Mother's Partial Hip Replacement Timothy HoffEven 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 NakazawaAt the VA, Healing the Doctor-Patient Relationship Raya Elfadel KheirbekWhen 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 ArrowsmithA Simple Case of Chest Pain: Sensitizing Doctors to Patients with Disabilities Leana S. WenGrasping at the Moon: Enhancing Access to Careers in the Health Professions Louis W. Sullivan Bridging the Divide between Dental and Medical Care Gayathri SubramanianIn Rural Towns, Immigrant Doctors Fill a Critical Need Yasmin Sokkar HarkerAn 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. MeierThe Fall: Aligning the Best Care with Standards of Care at the End of Life Patricia GabowGetting It Right at the End of Life Dina Keller MossThe Evolving Moral Landscape of Palliative Care Myrick C. ShinallNecessary Steps: How Health Care Fails Older Patients, and How It Can Be Done Better Louise AronsonA 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 KeirnsIn the ""Gray Zone,"" a Doctor Faces Tough Decisions on Infant Resuscitation Gautham K. SureshReversing 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 SchusterIn Opioid Withdrawal, with No Help in Sight Travis N. RiederThe Fine Line between Doctoring and Dealing Pooja LagisettyIntoxicated, Homeless, and in Need of a Place to LandOtis Warren
Index
This volume is relevant to researchers, clinicians, and health care policy makers, and I recommend it highly.American Journal of Health-System Pharmacy
