Telltale Hearts, page 1
Copyright © 2024 by Dean-David Schillinger
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First Edition: July 2024
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Library of Congress Cataloging-in-Publication Data
Names: Schillinger, Dean-David, author.
Title: Telltale hearts : a public health doctor, his patients, and the power of story / Dean-David Schillinger.
Description: First edition. | New York : PublicAffairs, 2024. | Includes index.
Identifiers: LCCN 2023047479 | ISBN 9781541704206 (hardcover) | ISBN 9781541704220 (ebook)
Subjects: LCSH: Public health—United States. | Medical policy—United States. | Discrimination in medical care—United States. | Physician and patient—United States.
Classification: LCC RA395.A3 S3663 2024 | DDC 362.10973—dc23/eng/20240202
LC record available at https://lccn.loc.gov/2023047479
ISBNs: 9781541704206 (hardcover), 9781541704220 (ebook)
E3-20240524-JV-NF-ORI
Contents
Cover
Title Page
Copyright
Dedication
Prologue
PART 1: WHEN THERE IS NO STORY Chapter 1: The Magic Bus
Chapter 2: Medical School Dropout
Chapter 3: The Luminati
Chapter 4: The Culture of Blood
Chapter 5: Man and Bird
Chapter 6: Patagonia Pastorale
Chapter 7: The Quixotic Pursuit of Quality
Chapter 8: The Brother
PART 2: IN STORY LIES THE CURE Chapter 9: The Disability Blues
Chapter 10: Lost in Translation
Chapter 11: Detectives of Social Vulnerability
Chapter 12: Racism as a Public Health Threat: “It’s About Time”
Chapter 13: The Telltale Heart
Chapter 14: The Mood of the Bay
Chapter 15: Flags and Statues
Chapter 16: The Frequent Flyer
Chapter 17: Smoke and Mirrors
PART 3: STORY AS CATALYST Chapter 18: Walking on Coals: Melanie’s Story
Chapter 19: Melanie Goes to the State Capitol
Chapter 20: Melanie Goes to Court
Chapter 21: Melanie Goes to City Hall
Chapter 22: Melanie Goes Onstage
Epilogue: Song for My Father: To the Dark Side and Back Again
Acknowledgments
Discover More
About the Author
Credits
For my children, Micaela, Gabriel, and Eytan
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Prologue
At the peak of my career as a physician, modern medicine nearly killed me. The year was 2010, and I was forty-five years old, happily married with three children, and had just become the chief of the Division of Internal Medicine at San Francisco General, arguably the country’s finest public hospital. I had been promoted to full professor at the University of California and was a successful researcher and public health expert. I felt I had made it in medicine and, perhaps, in life.
My crisis began during a weeklong holiday on a Caribbean island where my extended family had come together to celebrate my father’s eightieth birthday. I had eagerly looked forward to windsurfing, playing tennis with my brothers, and dancing at night. But I had no energy for any of it. Instead, I was overcome with a profound fatigue that forced me to sleep fourteen hours a day and made me unable to walk on the beach without getting muscular pains. I could not even write the toast I had planned to pay tribute to the longevity and success of my amazing father, who, as a Jewish teenager during World War II, had survived a year in a Nazi concentration camp and then endured solitary confinement in a Soviet prison after the war.
Back in San Francisco, my physicians carefully considered the long list of medical conditions that could be causing my symptoms. Was it hepatitis? Leptospirosis? Lyme disease, or its Caribbean cousin, babesiosis? Thyroid disease? Heart failure? Could I have acquired HIV from a needlestick at the hospital? I underwent extensive blood work and imaging studies.
But all the tests came back normal.
Over the following months, I deteriorated until I became largely confined to bed. While I managed to drag myself into work for my clinic sessions, my research and administrative work suffered. My ability to concentrate declined, my intellectual stamina waned, and I fell further and further behind. My day-to-day life was characterized by cycles of daytime sleep, nighttime insomnia, crying spells peppered with bouts of anxiety and panic, and an inability to interact with others in any way except to describe my physical weakness, despondency, fear, and guilt. I couldn’t care for my children; my wife took on the full load. I ruminated endlessly over my sudden and seemingly permanent failings as a doctor, spouse, and father.
I couldn’t face the possibility that I needed to request a medical leave due to what appeared to be an episode of major depression. I was afraid of being cast out by my colleagues, stripped of my titles, and told to surrender my research grants. Worst of all, I was convinced that being labeled mentally ill would jeopardize my hospital privileges, preventing me from working as a primary care physician for my patients, whose complex care benefited from the continuity and partnership with them that I had carefully fostered over decades.
I began to think about suicide. I hid a stash of Ativan in my sock drawer. I had nightly fantasies of sneaking out to the Golden Gate Bridge and jumping.
Eventually, I had no choice but to put a formal request in for a medical leave. A mentor—the only faculty member I discussed my illness with—advised me not to disclose the diagnosis, as doing so could jeopardize my career. While stepping away from work provided momentary relief, my depression only deepened. My doctors began talking to me about hospitalization.
Which was how I found myself in the consultation room of yet another doctor, a brawny and balding psychiatrist with a baritone voice and a South African accent. He had no medical chart by his side, not even a computer from which to review my prior history or laboratory workup.
“I’m Dr. Duncan.”
We shook hands, and I took a seat.
He leaned back in his leather recliner.
“So. Tell me your story.”
“It’s all there in my record.”
“I need to hear details from you that I can’t find in the record.”
His desire to hear my story made me feel hopeful for the first time in months. I had a theory that previous medical doctors—including a psychiatrist—had dismissed.
“It all started with the Thanksgiving my family spent at the rustic cottage my wife and I had just bought in Point Reyes. My twelve-year-old twin boys and I spent three days clearing the fire trail that was overrun with brush since no one had maintained the land for a long time.”
Dr. Duncan did not interrupt me or hurry me along, unlike previous doctors had.
“A few days later, I was covered in red, itchy bumps that looked like a poison oak eruption but then turned into a bad case of erythroderma—literally, red skin syndrome. The only parts of my body that were not beet red were the whites of my eyes and the brown of my hair. Heat was discharging from my body at an astounding rate. I was shivering cold and agonizingly itchy, feeling like I needed to rip the skin off my body. The next few days were a blur of creams and prednisone pills, accompanied by tears, writhing, forbidden scratching, and uncharacteristic praying to God for relief. These
symptoms progressed, forcing me to cancel my clinic sessions. A dermatologist colleague took one look at me and prescribed high-dose corticosteroids. After this monthlong course of steroids and a few-week taper, I was no longer red and itchy, and was able to return to work.”
“When was that?”
“Two years ago.”
“About a year later, I suddenly started feeling really fatigued, winded, and almost incapacitated. I asked my doctors if I might have Addison’s disease—whether taking all those steroid pills caused my body to shut down making its own cortisol. They said that my steroid use was too distant to make it a credible diagnosis. But since Addison’s can be fatal, they humored me by sending off the tests. The results proved me wrong.”
“You were right, in a sense,” the psychiatrist said.
His response surprised me.
“How so?”
“There certainly was a lot in your life that might have caused this and was perpetuating it. But you’re right: it was the damn steroids.”
“But that’s not possible; I took them two years ago.”
“Look, I spent twenty years working as a consulting psychiatrist on the cancer ward at MD Anderson in Texas. We learned early on that the psychiatric effects of steroids—especially depression—can manifest two years out or longer. Steroids get through your cell membranes and work by getting into the nucleus of the cells, into the DNA, changing the proteins produced by the neurons in your brain. With high-dose steroids, the treatment can be worse than the disease. I’m not saying you had a choice as to whether to take those steroids. I’m saying that the treatment that helped you in the short term is haunting you now.”
“You think that explains all my physical symptoms?”
“Yes, and your psychiatric symptoms too. You and I both know that depression often presents with physical symptoms: pain, fatigue, you name it.”
Indeed, I had known that. But experiencing an illness is entirely different from knowing its list of associated symptoms.
“Is it reversible? Or is this just the way I am going to be?”
“I’m hopeful that you’ll get better if you have faith and if you work on it. You probably have some underlying vulnerability to depression, as many of us do. It just never manifested itself until you got hit with the high-dose steroids.”
I nodded. Yes, that’s it, I thought, looking down to hide my emotions.
“Does knowing this information change my treatment?”
“What strikes me about your depression is how much you’ve been ruminating. Running over in your mind, again and again, how stigmatizing this is, how your career is over. Depression is bad enough, but your ruminating—the catastrophizing over how your illness is ruining your life now and will do so forever—only amplifies your suffering. It adds trauma to the trauma you’ve already experienced from the rash and the steroids. If we can interrupt your ruminations, you will be in a place to begin to recover.”
“The ruminations are like a black cloud over my head, pushing down on me. They’re always there,” I replied, realizing that I had just offered up the same cliché that so many of my patients with depression had said to me.
“Yes, they can be awful. So, I’m going to prescribe you something, at a very low dose, that I think will shut them down.”
“Another medicine?” I was already on three antidepressants.
“Yes. And you’ll need a special kind of therapy to help you get rid of the toxic thoughts and self-defeating actions.”
I took the new medicine, no larger than the head of a pin. Four days later, at 11:05 a.m., one year after the beginning of what had become a prolonged, severe, and inexplicable depressive episode, my ruminations stopped. Entirely.
I was not happy. I was not cured. But he had elicited my story and provided me with a tailored treatment plan. And now that my mind was clear of self-defeating, noxious, and apocalyptic thoughts, I could begin to recover.
TALES FROM THE MEDICAL UNDERGROUND
This is not another book about the “doctor as patient” or a chronicle of one doctor’s odyssey from illness to recovery or of the path he took from a superficial understanding of human suffering to true enlightenment. Yes, modern medicine nearly killed me. First, the literal medicine—the steroid—was a toxic exposure that damaged me. And second, my profession, which has been conditioned to devalue stories, hindered an accurate diagnosis of my illness, undermined my treatment, and delayed my recovery all because a few doctors chose not to carefully listen. And third, the stigma I experienced undermined my ability to face my diagnosis and to recover. However, the extent of the unhealthy exposures and trauma I endured was far lower than that of my public hospital patients—many of whom have had lifelong, severe exposures with more definitive health consequences. More, the hurdles I needed to overcome to tell my story pale in comparison to those that many low-income patients in hospitals across America face.
Rather, this book reveals what my patients have taught me: that the combination of stories and science holds the key to recovery. For the last thirty years, I have served as a primary care doctor in one of our country’s flagship public hospitals, the institutions that disproportionately serve our nation’s poor and marginalized. Here, the burden of disease is most concentrated, and our nation’s stark health inequities are on display. Here, health care meets social reality. This book is about my connections with my patients, revealing how these longitudinal relationships enable the discovery of their stories and showing how these stories then uncover the hidden exposures at the root of their illnesses. Over time, such stories also weave a larger narrative about public health. Listening to public hospital patients’ stories can change the approach we take to improving our entire nation’s public health. When we listen to patients’ stories, and when we subject these stories to scientific inquiry, our understanding shifts: we discover that most illness occurs as a result of an excess of toxic exposures and a deficit of health-promoting resources. That the state of the social and environmental conditions in which we live largely determines the state of our health. The deeper understanding that emerges after hearing story after story—what I call narrative epidemiology—not only can transform health care but also provides a blueprint for dismantling the structural drivers of disease in America.
Yet public hospitals, as critical as they are to the lives of those who inhabit the margins and as informative as they can be to the health of all Americans, remain secreted away. No other book has focused on the inner workings of the public hospital, accompanying the reader into what functionally is a sort of “medical underground,” where the realities and inequities that society keeps closeted away—and their consequences—are exposed. What has been missing in the national discourse around health has been the experiences of patients who come from populations most affected by illness: patients in public hospitals. Bringing the voices of these telltale hearts to the table makes a narrative epidemiology possible, allowing a melding of people’s stories with our best science in the hopes of shaping a more humane health care system and more effective public health policy.
FROM ONE TO MANY
Can individual stories really hold the key to unlocking the mysteries of human disease and provide answers as to how to reduce suffering on a large scale?
In 1854, John Snow, a doctor working in the midst of an epidemic decimating London, made a scientific discovery that would save tens of thousands of lives in the short term, one with the potential to change the world forever.
But his discovery didn’t happen in the way that most people think it did. The simple version of Snow’s breakthrough is known to many. Few people know the deeper truths behind how he arrived at his discovery and how his method of narrative inquiry both inspired and enabled him to convince those in power to act on it. This deeper story holds lessons as profound and relevant today as they were two centuries ago.
At that time, the growing populations of European cities were plagued by recurrent outbreaks of cholera, a horrific diarrheal disease that spread with brutal pace. Marked dehydration drained the life out of those afflicted within a day or two. In 1854, about thirty thousand people, or roughly 1 percent of London’s residents, died of cholera in short order.
