PRAISE FOR
grief connects us
“A grieving brother, an expert neurosurgeon. As Jody lives through his sister’s death, we see him grow into his human-ness. And as Dr. Stern examines his profession, he detects and prescribes compassion. This is a brave tale, and the teller is broken, open, yearning, and true.”
—MARGARET EDSON, author of Wit
“Dr. Stern gives us the gift his sister and her family gave to him: insights into what it means to traverse illness and the quandaries of the healthcare system, to hold hope and despair in the same hand. And, importantly, he allows us into the quiet and under-appreciated zone of being a caregiver, a zone with its own forces and triumphs and miseries unlike any other. No matter how many patients we doctors see who are facing these issues, there is nothing in the health professions that prepares us for when it’s our loved ones who are staring down these barrels. That is, until books like this one, where Dr. Stern’s education becomes our own, and just in time.”
—BJ MILLER, MD, hospice and palliative medicine physician and author of A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death
“Grief Connects Us is the moving account of Dr. Stern’s transformation from reserved neurosurgeon to the kind of compassionate physician we all hope for. His book is a heartbreaking yet inspiring call for a more courageous relationship between patients and doctors, one marked by openness, mutual respect, and the acknowledgment of our common humanity.”
—PAULINE CHEN, MD, physician and New York Times bestselling author of Final Exam: A Surgeon’s Reflections on Mortality
“As I read Dr. Stern’s book, Grief Connects Us, it again reminded me of the grief that I have faced both in my practice and personally. Many of us build walls that are impenetrable, but few of us are immune to the power of grief. It is when his sister is diagnosed with cancer and dies followed by the sudden and unexpected death of her husband leaving their teenage sons orphans that Dr. Stern must struggle with grief in the most personal way. By interweaving his own vulnerability and suffering with those of other patients and physicians, he makes us understand that only through empathy and compassion can we truly connect. Powerful, profound, and compelling.”
—JAMES R. DOTY, MD, Professor of Neurosurgery and founder of the Center for Compassion and Altruism Research and Education, Stanford University School of Medicine New York Times bestselling author of Into the Magic Shop: A Neurosurgeon’s Quest to Discover the Secrets of the Brain and the Mysteries of the Heart
“In Grief Connects Us, Stern dissects the heart-wrenching illnesses of people close to him, and in so doing dismantles the emotional armor those of us in medicine unwittingly don, to accompany his patients in their suffering and feel with them. A transformative read.”
—MIKKAEL A. SEKERES, MD, MS, author of When Blood Breaks Down: Life Lessons from Leukemia and essayist for the New York Times
“Every patient and medical professional who meets the line that separates them will understand when it needs to be dissolved to open the gateway for empathy and compassion. Grief Connects Us is an essential guide and inspiration in these challenging times.”
—HELEN RIESS, MD, author of The Empathy Effect, Associate Professor of Psychiatry, Harvard Medical School
“Grief Connects Us is a beautiful book and an important one. The way Dr. Stern writes about illness, hospitals, diagnoses—all the things clouding collective consciousness—from the dual perspective of expertise and lived experience is particularly timely and urgent.”
—CATHERINE MAYER, author of Good Grief and co-founder of the Women’s Equality Party (UK)
grief connects us
Central Recovery Press (CRP) is committed to publishing exceptional materials addressing addiction treatment, recovery, and behavioral healthcare topics.
For more information, visit www.centralrecoverypress.com.
© 2021 by Joseph D. Stern.
All rights reserved. Published 2021. Printed in the United States of America.
No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written permission of the publisher.
Publisher: Central Recovery Press
3321 N. Buffalo Drive
Las Vegas, NV 89129
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Library of Congress Cataloging-in-Publication Data
Names: Stern, Joseph D., author.
Title: Grief connects us : a neurosurgeon’s lessons in love, loss, and compassion / Joseph D. Stern ; foreword by Sanjay Gupta, MD.
Identifiers: LCCN 2020041348 (print) | LCCN 2020041349 (ebook) | ISBN 9781949481518 (jacketed hardcover) | ISBN 9781949481525 (ebook)
Subjects: LCSH: Stern, Joseph D.,--Health. | Neurosurgeons--Biography. | Brain--Surgery--Patients--Biography. | Physician and patient. | Patient satisfaction.
Classification: LCC RD592.8 .S74 2021 (print) | LCC RD592.8 (ebook) | DDC 617.4/8092 [B]--dc23
LC record available at https://lccn.loc.gov/2020041348
LC ebook record available at https://lccn.loc.gov/2020041349
Photos are from the author’s personal collection.
Photo of Joseph Stern by Aura Marzouk. Used with permission.
Jane Kenyon, “Prognosis” and excerpts from “Chrysanthemums” from Collected Poems. Copyright © 2005 by The Estate of Jane Kenyon. Reprinted with the permission of The Permissions Company, LLC on behalf of Graywolf Press, Minneapolis, Minnesota, graywolfpress.org.
Every attempt has been made to contact copyright holders. If copyright holders have not been properly acknowledged please contact us. Central Recovery Press will be happy to rectify the omission in future printings of this book.
Publisher’s Note
This book contains general information about grief, illness and death, and compassion. It examines the impact of cancer and mortal illness on patients, their families, and the physicians who care for them. The information contained herein is not medical advice. This book is not an alternative to medical advice from your doctor or other professional healthcare provider.
Cover design and interior by Marisa Jackson.
FOR
the whelans
Victoria, Pat, Nick, Will
AND
the sterns
Kathryn, Ben, David, Abby
You have all taught me:
The power of love,
That gratitude brings grace,
To live and love large.
table of contents
FOREWORD by Sanjay Gupta, MD
INTRODUCTION: A Neurosurgeon’s Journey
part one
CHAPTER 1: Diagnosis
CHAPTER 2: Learning to Tie Knots/Arc of a Career
part two
CHAPTER 3: The Patient’s Perspective
CHAPTER 4: Reconnecting/First Visit
CHAPTER 5: Transplant/Second Visit
CHAPTER 6: Leukemia Returns: In Memoriam
CHAPTER 7: Pat (Also a Love Story)
part three
CHAPTER 8: Doctors Speak: Conversations with Colleagues
CHAPTER 9: Patients Speak: The Healing Garden
part four
CHAPTER 10: From Emotional Armor to Emotional Agility
CHAPTER 11: Enhancing Palliative Care: Asking for a Most Benevolent Outcome
CHAPTER 12: Compassion as a Core Value: Improving the Patient Experience
CONCLUSION: Compassion and Coronavirus
ACKNOWLEDGMENTS
REFERENCES
FOREWORD
by Sanjay Gupta, MD
When Jody Stern first asked me to write the foreword to his book, I really cou
ldn’t say no. After all, Jody had been my chief resident when I was just starting my neurosurgical training and even twenty-five years later, I still felt the hierarchal force that compelled junior doctors to automatically follow orders from their seniors. “Yes sir,” I responded, secretly wondering where I would find the time. A few months later after the manuscript arrived in the mail, I sat outside one sunny weekend afternoon and read the entire book in a single sitting.
As day turned to dusk, a chill filled the air and the shadows grew long all around me; I was transported into the world of my colleague and friend in a way I had never before seen him. The writing had the familiar cadence and precision expected of a brain surgeon. Few wasted words, a rapid but not rushed pace, and a tidiness associated with the sterility of a well-run operating room. And yet there was something else as well. There was a rawness and a vulnerability not typically seen among our neurosurgical colleagues. There was a venting of compassion and an airing of grief.
It became clear to me that Grief Connects Us was not only a book that Dr. Stern wanted to write—it was a book he needed to write.
The pain was palpable. Victoria, his kid sister, first became ill with what seemed like the flu, and within a few weeks had taken up residence in an oncology ward. When she died less than a year later, it didn’t seem things could get worse for the family she left behind. But then her husband Pat was rendered unconscious after an aneurysm ruptured in his brain without warning. He never woke up, suddenly leaving their teenage boys without parents. The cruelty directed at this family in the prime of their lives was aimless and merciless, and my friend Jody was shaken to his mortal core. It was a reckoning that challenged his identity as a physician and his perceptions of grief and loss as a human. Having counseled so many families through unimaginable loss as a brain surgeon, Jody finally realized that his ability to truly understand and empathize with the anguish of his patients only became fully formed and genuine after he had confronted these painful tragedies on his own.
Over the course of their careers, many doctors develop a sort of emotional armor to help insulate themselves from the overwhelming sadness. For trauma neurosurgeons like us, who often care for patients who are young, healthy, and suddenly dead, that armor can grow thicker and tougher with time. For Jody Stern, his personal heartrending experience revealed just how significant a liability the armor had become, and he set about on what must’ve seemed a near Sisyphean journey to shed that armor once and for all. This book is the story of that journey, the powerful stories he uncovered along the way, and the very human reactions that bind us together in the face of fear, grief, and failure.
While we are tied together through our shared memories and experiences on this planet, it is grief that connects us most tightly at a near molecular and metaphysical level. Too often we think we must walk that path of grief alone, unwilling or unable to adequately share the depths of our loss. Nothing could be further from the truth. It is here where my friend Jody shines, as he gently holds the hand of the suffering, listens intently, and then weaves the voices of patients and doctors alike into a bold narrative of empathy, compassion, and connection.
We all benefit from a book like this because its greatest currency is the honesty and authenticity of the characters willing to lay bare their soul to help us learn and grow.
AUTHOR’S NOTE
The names of all the patients and families in this book have been changed to avoid violating their confidentiality; however, real names are used in all of the interviews.
INTRODUCTION
a neurosurgeon’s journey
My younger sister was an actress. She was creative, trusting, warm, an engaged wife and mother, full of life. Her infectious belly laugh could fill a room. Victoria loved an audience and could keep them spellbound.
I am a neurosurgeon, more comfortable with a single patient in the quiet of an examining room where I can apply logic and science to solve the problems and mysteries of the human body and disease. Through my work, I am educated about mortal illness, having spent more than twenty-five years confronting death and dying.
Had anyone asked, I would have said I believed that my experience as a neurosurgeon insulated me from loss in my own life, that a familiarity with the suffering of others would somehow prepare me for the inevitability of a tragic diagnosis within my own family. I assumed that my proximity to loss enabled me to protect the people I love. And I thought I had a good understanding of what my patients and their families were going through.
When Victoria was diagnosed with leukemia at the age of fifty-one and succumbed to her illness less than a year later, I learned that nothing could be further from the truth. Living through her illness as a brother, rather than as a doctor, has taught me far more about the nature of illness and death than I ever learned in my formal medical training.
In writing Grief Connects Us I initially sought to manage my grief over my sister’s death, but in the process, I found I wanted to untangle my evolving feelings about death and about the impact that loss has on physicians as well as on patients. I wanted to explore how physicians integrate personal loss into their professional lives, and how these experiences influence the way they relate to patients and their families. I also wanted to better understand the choices patients make and the impact their decisions have on them and on their families.
Physicians are frequently exposed to grave illness, and many of us, such as oncologists, see death every day. We are challenged to function as empathic, supportive physicians, remaining present for our patients through the often confusing and frightening phases of illness, providing advice and counsel yet not coming unglued. In the face of overwhelming loss, doctors must find ways to defend themselves emotionally, but in doing so we often miss the potential for connection and understanding. Some physicians approach their work in a clinical manner, relying on technology or therapies as protective screens between them and their patients. Yet being caught up in the intricacies of a very sick patient’s life, sharing time and narratives with them and their families, can lead to pain and regret after a death. How can we maintain connection and not be consumed in the process?
Patients seek empathetic and compassionate connection with their physicians. And, just as physicians do, patients often make decisions out of fear, relying on defensive emotional armor. Like many physicians, I fear failure—of being wrong, of making mistakes, of being overwhelmed by powerful emotions such as grief and sadness I am not sure I can handle. In the process, both patients and physicians miss powerful opportunities for mutual appreciation and understanding. Patients need their wishes to be better understood. They want care rooted in compassion and decisionmaking framed by the context of their life experiences. Both patients and physicians need to forgo maladaptive emotional armor in favor of a more flexible stance of emotional agility. In the process, they will come to better appreciate each other’s unique perspectives.
I used to keep my distance, explaining things thoroughly but often with what I now see as reticence based in my own fear: technically correct, highly verbal, and detached. Now, when I look at myself, I see a little bit of Victoria: I am more demonstrative, more of a friend and a supporter. I try to let my patients and their families know that I care; to pull them close when things are going badly. I try to acknowledge their suffering and also my shortcomings. Through my own experience, a window has opened for me onto the power of solace and nonverbal communication and on the feelings of fear and isolation that come with their absence. Now, I try to keep that window open for others.
Recently, I met a woman who had come to be at her son’s bedside in the ICU. He had been in a devastating car accident that broke his neck, tore open his scalp, and shattered his arm and leg. He was not doing well and remained critically ill. We were not sure if he would live or die.
I spoke with Doris about Stephen’s injuries, told her how sorry I was that this was happening, and said that no mother should have to go through what she was now facing. I hugged her fo
r quite a while. She cried on my shoulder; I had to wipe away my own tears. The words I shared with her were important, but they only went so far. The hug I offered conveyed as much as, if not more than, all of my words of explanation. In that moment, we became allies. She knew that I knew, and that I was a parent, too; that I recognized her suffering was intense; and that I was trying to acknowledge all she was facing, all that she might lose in this moment of crisis. This made no material difference to the medical facts, nor did it impact her son’s care, yet to both of us in that moment it was essential.
Victoria’s illness and death broke down the self-protective barriers I had built over the course of my career. As a result, I have come to better grasp the way illness changes our views of our world, often forcing us to reorder our priorities as options narrow. Our perception of time also changes. Any waiting period becomes interminable, as when my sister and I anxiously awaited a doctor’s visit or the results of a critical test, whereas momentous events—such as a disastrous and irreversible change in condition—can occur in an instant, often without warning.
While personal and painful, my experiences are far from unique. In reaching out to other physicians and patients, I have been struck by how much we have in common—yet we rarely share these stories of loss, often soldiering through them distressingly alone and disconnected from one another. As physicians, we must shift toward more reasonable expectations of, and care for, ourselves, integrating our personal experiences into our practices and improving the care we deliver to our patients through a system that better accommodates the needs of patients, their families, and the health providers who treat them. As patients, we must insist on meaningful, direct, and honest communication with our physicians, based in compassion and acknowledgment of our personal perspectives. Greater understanding of what we go through will help all of us contend with illness and death in ourselves and those we love, whether we are patients or physicians.
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