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UC Berkeley UC Medical Humanities Press Book Series Title Heart Murmurs: What Patients Teach Their Doctors Permalink https://escholarship.org/uc/item/8bx6f4sn ISBN 9780988986558 Publication Date 2014-10-14 License https://creativecommons.org/licenses/by-nc-nd/4.0/ 4.0 Peer reviewed eScholarship.org Powered by the California Digital Library University of California Heart Murmurs What Patients Teach Their Doctors Perspectives in Medical Humanities Perspectives in Medical Humanities publishes scholarship produced or reviewed under the auspices of the University of California Medical Humanities Consortium, a multi-campus collaborative of faculty, students and trainees in the humanities, medicine, and health sciences. Our series invites scholars from the humanities and health care professions to share narra- tives and analysis on health, healing, and the contexts of our beliefs and practices that impact biomedical inquiry. General Editor Brian Dolan, PhD, Professor of Social Medicine and Medical Humanities, University of California, San Francisco (UCSF) Recent Titles Clowns and Jokers Can Heal Us: Comedy and Medicine By Albert Howard Carter III (Fall 2011) Health Citizenship: Essays in Social Medicine and Biomedical Politics By Dorothy Porter (Winter 2011) What to Read on Love, Not Sex: Freud, Fiction, and the Articulation of Truth in Modern Psychological Science By Edison Miyawaki, MD, Foreword by Harold Bloom (Fall 2012) Patient Poets: Illness from Inside Out Marilyn Chandler McEntyre (Fall 2012) (Pedagogy in Medical Humanities series) Bioethics and Medical Issues in Literature Mahala Yates Stripling (Fall 2013) (Pedagogy in Medical Humanities series) www.UCMedicalHumanitiesPress.com [email protected] This series is made possible by the generous support of the Dean of the School of Medicine at UCSF, the Center for Humanities and Health Sciences at UCSF, and a Multi-Campus Research Program (MRPI) grant from the University of California Office of the President. Dedicated to my sons Matthew and Nicholas Heart Murmurs What Patients Teach Their Doctors Edited by Sharon Dobie, MD First published in 2014 by UC Medical Humanities Press UCMedicalHumanitiesPress.com © 2014 University of California Medical Humanities Consortium 3333 California Street, Suite 485 San Francisco, ca 94143-0850 Cover Art by Eduardo de Ugarte Designed by Virtuoso Press Author photo Theresa Halzle photosbyt.com Library of Congress Control Number: 2014948700 ISBN: 978-0-9889865-5-8 Printed in USA Contents Acknowledgements xii Foreword Valerie Ross xv Introduction Sharon Dobie 1 Chapter 1 Connection 6 Invited In Sharon Dobie 6 Mick, Mack, and the Bars Mick Storck 10 Learning to Connect Kelley Glancey 12 The Last Dance Sara Ehdaie 14 Sitting with Them Cherita Raines 16 Anatomy of Caring Sharon Dobie 20 Chapter 2 Cheer in our Midst 22 Hatman and the Royal Typewriter Sharon Dobie 22 Standing at Her Door Ted Carter 25 Self-Acceptance Reiko Johnson 27 Smiles Reiko Johnson 28 His Eyes Reiko Johnson 29 Brightening Our Days Sharon Dobie 30 Hatman Celebrations Sharon Dobie 31 viii Contents Chapter 3 Courage 33 Living While He Could Sharon Dobie 33 Hoodie Kavitha Chunchu 37 Stepping Over Fear Sharon Dobie 40 The Tended Garden Sharon Dobie 41 Doing What I Have to Do Sharon Dobie 45 Trying Reiko Johnson 47 Death of a Child Sharon Dobie 48 Staying Anonymous 49 “How are the Boys?” Sharon Dobie 50 Chapter 4 A Good Death 52 Leaving is Not So Bad Sharon Dobie 52 His Way and Marmalade Jessie Fudge 55 We Don’t Know When Kelly Gabler 57 A Lady Always Knows Sarah Hale 59 Detox Redemption Anonymous 61 The Fairway and the Grand Piano: Dying with Grace in the Era of Fighting to Live Hank Pelto 67 The Birthday Party Sharon Dobie 69 Heeding the Spirits Sharon Dobie 71 Contents ix Chapter 5 Unexpected Hope 73 The Christmas Gift Mitcheil Cohen 73 Don’t Give Up Keisa Fallin-Bennett 77 Jazz, the Couch, and Video Games Sharon Dobie 80 Grabbing Time Sharon Dobie 82 Chapter 6 Lessons About Control 87 Diabetes and Other Controls Sharon Dobie 87 The Reverend Anthony Suchman 91 Despite Our Predictions Amy Rodriguez 93 Personal Choice Roger Rosenblatt 96 When We Cannot Fix Anonymous 99 Not Trying Sharon Dobie 102 Why Didn’t She? Sharon Dobie 103 Mohel to the Rescue Sharon Dobie 105 The Ripple Effect Sharon Dobie 107 Chapter 7 Where Do We Draw the Line? 112 Stretched Boundaries Sharon Dobie 112 Defining Limits Anonymous 116 Clear Boundaries Crystal Kong-Wong 119 Ms. G and Mom Chad Abbott 122 x Contents One Size Doesn’t Fit All Roger Rosenblatt 126 Amy Died Sarah Hufbauer 128 Finding the Balance Sharon Dobie 133 Chapter 8 Bias, Assumption, and Learning Tolerance 137 Whining—Was It? Sharon Dobie 137 The Prodigal Son’s Brother Casey Law 142 Not Drowning Anonymous 144 Getting to Know Her Genevieve Pagalilauan 146 A Broader View Ahalya Joisha 149 Misreading Sharon Dobie 150 Chapter 9 Can I Really Know You? … Or Anyone? 151 I Thought I Knew You Sharon Dobie 151 Hidden Truths Melanie Berg 154 Thank You David Sherilyn Smith 156 What Was She “Seizing?” Sharon Dobie 159 Losing Part of Her Sharon Dobie 161 Chapter 10 My Patient as a Mirror 163 How She Handles ... No, How I Handle Frustration Sharon Dobie 163 Contents xi Reminder Erin Richardson 166 Swastika Stephanie Cooper 167 Many Ways to Love Anonymous 169 Insatiable Anonymous 172 Self-Care Anonymous 175 Permission Anonymous 178 Testicles and Other Fears Irf Asif 179 Mothers Sharon Dobie 181 Chapter 11 Self-Acceptance 183 Good Enough Sharon Dobie 183 Help? Stephanie Cooper 189 Missing the Mark Sharon Dobie 194 Patient Caregiver Anonymous 197 Mental Calculus Keisa Fallin-Bennett 199 Someone of Value Christina Tanner 201 Cancer After All Anonymous 202 Acceptance Sharon Dobie 206 Adios Sharon Dobie 207 Epilogue: Our stories and the ethics of writing about patients 209 Authors’ Biographical Notes 212 Acknowledgements Sharon Dobie Manuscripts become books and writers become authors with a commu- nity supporting them. Though writing may be solitary, at least for extroverts, there is a lot of chewing, advice seeking, and hand wringing about the work, out loud and in the world. All of us who publish share credit with support- ers, editors, contributors, and whoever allowed us (or at least did not prevent us from having) the space to think about something and put those thoughts to paper. This book would not be here without so many individuals. I know that the authors represented here would have their own people to thank; hopefully some of mine reflect who theirs would be. Back in 1973, I decided medicine would be a better career for me than social policy planning. UC Berkeley let me come back and do pre-med work and the University of California in San Francisco (UCSF) educated me to be a physician. Their Family Medicine program at San Francisco General Hospital (SFGH) trained me in the science and art of our work, with an avant-garde methodology. I spent my intern year being watched in clinic through a one way mirror by a behavioral science provider and a family medicine doctor. I was often called out of the exam room not to discuss what I thought was the main issue (the ear ache, the fever, the well child exam), but to explore the subtext in the family narrative. I was as cantanker- ous and out spoken then as I am now. One of my key faculty mentors, Ron Goldschmidt MD, wrote in a graduation gift something to the effect that he enjoyed (translate: probably sometimes found me frustrating and other times humorous) “growing with me.” Thank you UC Berkeley, UCSF, and Family Medicine at SFGH for my education and training; you were instru- mental in shaping how I live my life as a physician. To all of our patients: thank you. You teach us daily. This book is just a sampling. And you give us so much more with your trust, your concerns for us, and the friendships you allow. To those of you who are specifically rep- resented here and who have read and allowed the publication of our shared Acknowledgements xiii time, we are forever grateful. We thank the University of California Medical Humanities Press for publishing this work and hope that readers will think of supporting this non-profit whose mission is dedicated to publishing books in the medical humanities and whose ability to do so is dependent on grants, contributions, and royalties from what they publish. Some specific thanks go to some key people. Valerie Ross is the Uni- versity of Washington Family Medicine Residency Behavioral Science fac- ulty lead. She listened to my musings about Relationship Centered Care and discussed and offered suggestions for a piece I was writing for Academic Medicine. From that we created the workshop we have been doing since that time for our third year residents, at national workshops with seasoned physi- cians, in other residencies, and for faculty at two medical schools. Most of the authors represented here wrote their pieces in one of these workshops. I appreciate Valerie’s stalwart support for this project and her foreword. I think more than 500 physicians have completed our workshop; every story has moved us. I thank all who participated, even when challenging, and for their honesty and self-reflection. What has been and is striking to both Valerie and me is that we doctors struggle with actually stating how much and actually naming what we have been given within this work we do. The courage of the authors represented here may seem trivial; it is not. To come forward and share what is learned in tough situations requires an ability to be vulnerable. For that reason, all those who allowed me to work with them and their stories are included; there was no selection process except for one story which was excluded because of the vulnerability of the patient about whom this physician wrote.