Telltale Hearts, page 36
“But it didn’t turn out that way, is that what you’re going to tell me?”
“Let me talk! First, he said he told me he’d never consent to the procedure. I told him we’d discuss that later. So, then I had him on table, and I was examining him. You know, basic exam. Just going through motions. As I palpated his suprapubic region and tried to tap out his bladder, I noticed a large diagonal scar running across his left-upper quadrant. So, I said, ‘That’s strange location for a scar.’”
I interrupt him again. “Wait. Don’t tell me.”
“Yes. Just listen. So, I asked him if he got into car accident? Or did someone stab him? Or did he have some kind of colon surgery? But he said to me: ‘No, Doctor, I am concentration camp survivor. Dachau. They used me for medical experiments.’”
“Jesus H. Christ, Gyuri,” I say. “No way. How could you not have told me this story before?”
“Leave me be. How am I supposed to remember what I have told you and what I haven’t? Can I continue now?”
“Yes, of course.”
“So, I told him I’m survivor too, and we shared a few stories. ‘Although I’m not a survivor of medical experiments,’ I told him, ‘I am a survivor of the world’s most destructive public health experiment ever.’ So, then I asked him what they did to him. ‘Why that scar?’ He said, ‘I have no idea, Doctor. They did lots of things to me. To all of us, over long period. They never told us what they doing. That was maybe the scariest part. Not knowing what happen or what coming next.’
“After I listened, we shared more horror stories about our mutual experiences at the hands of the Nazis. And then he consented to a procedure that saved his life.”
“Incredible, Gyuri. What a story. Did you know that only eighty-two priests survived Dachau? How bizarre that one of the eighty-two ended up being your patient. What are the chances?”
We chat some more, and I tell him I love him, and we hang up. My jet lag finally gets the better of me, and I drop off to a dreamless sleep.
Three days later, I am on the runway at Munich airport. Thankfully, it’s a direct flight back to San Francisco. As nearly always happens to me, the smell of jet fuel and the gentle motion of the plane as it taxis down the runway before takeoff create a hypnotic effect. I doze into a half sleep, the intermittent and semiconscious slumber of aviation.
Still on the plane, I dream I am back at San Francisco General Hospital, attending on the medical wards. I enter the room of a patient we admitted the afternoon before, an elderly Polish man with Streptococcus pneumoniae, known as “the old man’s best friend.” He’d been quite sick for a week before he finally came in with what turned out to be double pneumonia. He’s got four liters of oxygen flowing through tubes into his nostrils. I unbutton my white lab coat, push my rounded spectacles up the bridge of my nose, and inspect the vital signs graph at the foot of the bed.
“Nice to see you awake, Mr. Kuligowski!” I tell him with a smile. “I’m Dr. Klaus Schilling. I’m sure you remember me from a long time ago. But you probably don’t remember me from last night. I can tell you: you look better today. You have a classic pneumonia. Both lungs. Fever’s still up, but don’t worry. It can take two to three days to come down. Your oxygenation still isn’t great. The antibiotics will kick in soon, I hope. And then we’ll get you outta here and back home. Let me take a listen to you. May I?”
“I do remember you,” he says. “I asked for you by name.”
I laugh, assuming this is his attempt at humor. No one at San Francisco General Hospital’s emergency room asks for a doctor by name. I sit him up, part the back of his gown, and direct him to breathe in and out deeply so I can clearly listen to his lung sounds. A whole lot of junk still in there, bilaterally. As expected.
“Okay, you can lie back now. Did you have a bowel movement yet?”
Not waiting for an answer, I pull up his gown and see a large Foley catheter in place and a long diagonal scar over the upper-left quadrant of his abdomen. Had I not seen that yesterday?
“What happened to you here?”
He looks up at me. “I was tortured in World War II. In Dachau. By doctors. I was in your medical experiments.”
I forcefully grab his wrist, as if to pin him down, and coldly ask in a whisper, “What did we do to you?”
“Many things. Too many things. Unthinkable things. But what I remember most were the fevers. The high fevers and the nightmares. Scarier than the torture itself were the nightmares. And the hallucinations. The talk among the prisoners was that it was malaria. That they were experimenting on us with malaria.”
I tighten my grip on his wrist.
“Right. I remember. We took your spleen out so we could examine it under the microscope and study how the malaria bug sets up shop and does its damage.”
“Maybe so. I never knew.”
“And when you don’t have a spleen, you become vulnerable to a number of infections. Especially those caused by pneumococcus, which happens to be the exact bug causing the pneumonia you have now.”
“So, you’re saying I am still suffering from what they did to me?”
“Yes, I guess I am. But tell me, after all you’ve been through with evil doctors, how did you gather up the courage to seek care, to come to the hospital and again put yourself in the hands of doctors like me? Is that why it took you so long to come in the first place?”
“Yes, you are right. I did delay coming. But I knew I could come to you. I knew I could trust you and that you would take care of me. I asked for you by name, for you specifically. Not for Dr. Schilling, but for you, Dr. Schillinger.”
I slowly release my grip on his wrist and carefully reposition my hand, now with my palm resting on the back of his hand. “How did you know that you could trust me? And do you still believe you can?”
“You are a Jewish doctor, no? And a Jewish scientist?”
“I am, yes, guilty on both counts.”
“As a Jew, you have suffered as I have. You have been tortured as I have. You have been experimented on as I have. And as a Jewish doctor and scientist, you recognize more than anyone that the wealth of knowledge and resources and the exceptional privilege provided to you as a physician can either be used for diabolical ends or for divine ends. I know that you will always recognize that conflict, and I trust that your own experience of subjugation will lead you down the right path.”
Now I shift my hand to hold his in mine. It is warm. “Thank you for your trust. I hope you are right. You are a Catholic priest, right?”
“I once was, yes.”
“Allow me to ask you, Father, as you are a man of faith: How do you reconcile your experiences in Dachau with your belief in the existence of a benevolent and loving God?”
He gently smiles. “My experience, and those of others like me—many not so fortunate as I have been—was not just the experience of a martyr. We have changed the world. We have changed your world. Remember, it is because of those experiences, those atrocities, that modern medicine and its research machine developed ethical standards. The outcome of the Nuremberg trials that I am most comforted by is not that the Nazi doctors were convicted of the crimes they committed. Or that some were put to death for their crimes. No. It is because of us that the Nuremberg Code came to be. For the first time, the world created clear rules about what was ethical and legal—and what was not—when conducting human experiments.”
I squeeze my eyes tight, trying to remember.
“Yes,” I say. “You did accomplish that. The ten points of the Nuremberg Code of 1947. I’m sorry, but I can’t remember them all. I’ll try:
“Voluntary consent of the human subject is essential.
“The experiment should be designed to yield fruitful results for the good of all of society, unprocurable by other methods or means of study.
“The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
“No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur.
“Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.
“During the course of the experiment the human subject should always be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
“During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.”
“That’s very good, Dr. Schillinger. It is good that you remember seven of these points. But I—Father Josef Kuligowski—will be the perennial reminder for those who would hijack the marvels of medicine and the wonders of science to do evil. Any evil. Do not forget that. And—as you continue in your medical work, your scientific work, your public health work—do not ever forget me.”
Nine hours later, we begin our descent, with the sun rising over the Sierras. I lift the window shade to see we are approaching the Bay Area from the northeast. We fly over the Richmond–San Rafael Bridge; the skyline of the awakening city sparkles before me, off to the right of the advancing plane. I find Market Street, its diagonal incision crossing the city, and I search south to find my hospital campus in the distance, taking it in with a bird’s-eye view. A seemingly unplanned and haphazardly arranged thirteen-acre compound: a collection of old, art deco–style redbrick buildings adorned with green-colored copper roofs surround a brutalist, blocklike, gray, long, concrete building with a rooftop chimney spewing steam from its boiler room, all set off by a singular, contemporary, tall, glass-covered circular structure with a garden rooftop, situated at the compound’s westernmost border. Each set of buildings representing a different era in US medicine, each set designed to affirmatively respond to the unique social epidemics of its day. The first set of structures, built in 1915, served as hospital wards whose primary purpose was to quarantine and care for the city’s many low-income residents suffering from cholera, typhoid fever, and tuberculosis. It ultimately evolved to spawn an International TB Center of Excellence. The second building, constructed in 1972, marked an important epidemiologic transition in the city and our country. Its primary function was as a trauma center, designed to respond to the unmitigated gun violence occurring in the context of a drug epidemic, but quickly expanded to become the epicenter of the AIDS epidemic and ultimately served as the engine and the model for our nation’s response to it. And the third-generation structure, built in 2016 in response to new seismic codes, financed by an $800 million municipal bond measure that passed with an unprecedented 83 percent majority, is the Grand Central Station for the poor person’s epidemic of our day: type 2 diabetes, a noncommunicable disease that can lead to kidney failure, amputation, heart attack, or stroke. And onto the backs of those very same individuals and populations left to struggle with these modern-day epidemics piled the opportunistic pandemic of COVID-19.
Courtesy of the San Francisco Department of Public Health.
We fly over the campus, toward the airport. I remember Eduardo. And I remember Dachau and Father Kuligowski. As the hospital compound disappears behind me, a warmth again spreads through my body. A pleasant visceral sensation reminds me of how fortunate I am to work at this unique and special place, one in which some bad things but mostly good things have been happening every day for 150 years: sometimes even real miracles, and sometimes small disasters. And some of them involving me. A public institution—with its singular mission—that at least aspires to respond to social ills in a positive way. A sanctuary for so many, helping the most marginalized recover and heal from the brutal realities of our society. And yes—despite its blemishes—perhaps a beacon of humanity casting its light to outshine medicine’s darkest past.
Physicians are endowed by society with a degree of power and authority, part of which comes from our unique knowledge of clinical science and our experience in treating and sometimes curing illness. But much of this power comes from the fact that our role is to care for people who are sick, who are truly suffering, and who genuinely and urgently need our help. As such, people often willingly relinquish their own power to us; they ask us to wield our powers to help them become well again.
Physicians most often take this responsibility to heart, and we try to deliver care in a humanistic fashion. However, given the numerous and growing pressures of the job, the diverse and sometimes perverse incentives that drive individual physicians and health systems, and the social and structural inequities that are the engine for disease, this model of humanistic medical care is often undermined. In fact, the delegation of power and authority to physicians, especially when it occurs in the context of a discriminatory society that generates unequal exposures to health hazards and unequal access to health care, can lead to dehumanization in medical care. This risk is amplified in the under-resourced settings that disproportionately care for marginalized patients. And when institutions and their health care staff dehumanize “the other,” bad things happen to patients and their communities.
It is my belief and my experience that we can inoculate ourselves against this risk when we bring together the best that science has to offer with the gift that patient narratives offer, positively influencing the culture of medicine and the institutions in which we work. We can only achieve this alchemy by eliciting our patients’ stories, by truly listening to these stories, and by acting on them in affirmative ways. Such stories can break down barriers and open up windows into other people’s lives in ways that not only assist in diagnosis and treatment but also create deep connections that humanize and improve the experience of illness, suffering, coping, recovery, or death. While the stories I have shared reveal how true this is for the individual patients I have cared for, this also holds true for the many of us who will find ourselves subjected to illness and suffering. This means that we all have a stake in ensuring that health care systems not only provide equitable care but also deliver the kind of care in which each individual’s unique story is elicited, valued, and incorporated into their treatment plans.
Apart from making the case for the critical role that places like my own flagship public hospital play in our country, what else do the stories I’ve told mean for public health? When we aggregate these stories across patients, when we attend to the patterns that comprise what I have called a narrative epidemiology, what emerges is a larger, mostly untold story. This story tells of the ill effects of marginalization on health—how unequal exposure to hazardous environments and unhealthy social conditions emerging from this marginalization—and the social policies that have created them—generate unconscionable and consequential inequities, drive health care spending, and drain resources from other worthy causes. These are scientifically proven facts, but when animated by a narrative epidemiology, such lessons become clearer, more relevant, and more meaningful to all of us. Through this process, the alchemy of science and story could generate changes in public policy that would humanize our society, reducing preventable suffering and death.
It is my hope that we more purposefully and consistently elicit and attend to each other’s stories, breaking down the walls that divide us and opening up more doors to see into and identify with each other’s real lives and experiences. And that we should tell these stories to others inside and outside our circles, creating opportunities for more mutual understanding and empathy. These narrative acts will help us to feel more connected to one another. And in so doing, we will become more generous, more inclusive, and more healing in how we relate to one another as individuals and communities, and in how we craft health and social policy for us all.
Acknowledgments
I have many people to thank for the contributions they each made in helping me turn this idea for a book into a reality. I first want to thank Eyal Press, an amazing writer, social critic, and childhood friend from Buffalo, New York (Go Bills!), for his unwavering support of my efforts and for his assistance in getting my book the attention it needed. I also am deeply grateful to Joanne Kagle, who granted me the three dimensions of time, space, and place with which to work on my book, trusting only that I might have something important to say. My close friend and an accomplished writer in her own right, Beth Kobliner, gave me her unwavering confidence and encouragement, reassuring me that someone, somewhere, someday, somehow, would absolutely say yes to publishing this book.
Bonnie Nadell of Hill Nadell Literary Agency took on the challenging task of helping me prepare my book proposal and eventually steering it to acceptance. Her clear guidance around message and her straight talk around structure allowed me to transform a series of individual patient vignettes into a more impactful whole. Clive Priddle at PublicAffairs was the first publisher to truly understand what I was trying to do and to embrace it. He also was wise enough to assign the gifted editor Anupama Roy-Chaudhury to take me on as her patient. She helped me diagnose what needed fixing (and surgical cutting!) and provided sage clinical advice to ensure I connected each story to the main themes of the book.
Cannon Thomas, PhD, of CTP Strategies was with me every step of the way—from initial conception to final execution. He has a magical gift of enabling his clients to identify those aspects of their lives and their work that are most meaningful to them, to focus on their skills and their talents, and to help them blend skillful effort with values-based determination to achieve the goals they set out to achieve. I am deeply grateful to him in so many ways.
