Tell me where it hurts

Is it ethical for a doctor-turned-writer to use his patients for material?

Published November 15, 1999 5:00PM (EST)

Abraham Verghese, born of Indian parents and raised in Ethiopia, came to America in the early 1980s to complete his medical training in Johnson City, Tenn., an impoverished community shunned by many of his American colleagues. Two events thrust Verghese and his patients out of obscurity -- AIDS was sweeping the Bible Belt like a firestorm, and Verghese, an infectious disease specialist who had become a de facto HIV expert, kept a daily journal documenting its swath through rural America.

The journal eventually led him to the prestigious Iowa Writers' Workshop, where he began "My Own Country" -- a memoir structured as a series of stand-alone vignettes, some told with wrenching acuity from the point of view of his patients. There's the preacher with gonorrheal sores, the bisexual hillbilly who infects both his wife and her sister with HIV, and two "pillars of the community," a man and his wife, who visit Verghese from another county in order to keep their condition clandestine. In 1998, Verghese's second memoir, "The Tennis Partner," recounts his friendship with an agonized, drug-addicted intern who eventually commits suicide.

Both books link Verghese's unraveling marriage with his ever-deepening friendship and identification with AIDS patients. Salon Health interviewed Verghese during a tour to promote the paperback edition of "The Tennis Partner," and asked how a writer celebrated for such startlingly frank prose could also be a physician entrusted with his patients' deepest confidences.

Physicians are bound to protect patients' confidentiality, even after death. Yet in both your books you disclose details about their sex lives, drug habits and illnesses. How did you pull this off?

In the mid-1980s, my patients and I lived through an extraordinary experience -- AIDS coming to a small, conservative community in rural Tennessee. Many years later I went back and told them I wanted to write a book about it. To my great amazement, to a man and woman they were very willing to cooperate. It became almost their mission to tell their stories. All my patients wanted to appear as they were, with their names unchanged. At the very last minute, in deference to their children, we changed some of the names and some key things that linked them to certain towns. Otherwise it was very much their desire to appear as is.

One could question the ethics of a doctor revealing a patient's private information. But I didn't use legal loopholes as a means to tell their stories; either I got permission or the revealing details were so concealed it would be impossible for anyone to know who they were.

So your patients were alive when you started the book?

Most of the people I included in the book were alive or their partners were alive at the time. Now, except for one person, they're all dead.

Why would your patients want their stories to be told?

It's like a backlash -- you really want to make sure that people know what you went through. Many of my patients are gay. Before you come out you're forced to live with such fear; you've kept quiet for so long you come out with a vengeance.

I think it was that sense with the woman I call Vicky. Before developing HIV, as she tells it, she was a hick living in a trailer, uneducated, angry, overweight and so stressed that she pulled her hair out in clumps. AIDS became an important way of defining who she was. She is now an activist in the HIV community, her hair has grown back and she's doing extremely well -- she's about to finish nursing school. She was an example of someone who was particularly adamant that I tell her story.

But some of your patients lived and died in agony. I'm thinking of Luther, who lashed out at everyone who tried to help him, including you.

The name Luther is not real. It is possible for someone to object to my using a patient that way, but I had a sense that he was very instructive. I wanted to profile his particular kind of courage, which was manifested in this outrageous, hostile, angry behavior. It was really his way of dealing with the virus.

How was his case instructive?

I wanted to address the issue of anger. Patients easily anger physicians. You have to stop and remind yourself that this is either their disease acting out, or their way of dealing with disease. It took weeks of taking care of Luther to see through the front that he was putting up. In a way it was a particular kind of bravery because he had no family to help him; he was incredibly self-reliant and in the end I was very admiring of him. Perhaps he understood that. I'd like to think he wouldn't disapprove of what I did.

A couple you call the Johnsons was so adamant about hiding their HIV status that they had to leave the city they lived in to get medical care, which is how you became their physician. It must have been difficult to get consent to write about them.

It was a difficult issue because they had both died by the time I was writing a book. From a legal point of view, you don't need consent to write about someone who is dead. But this wasn't a legal issue; it was a moral and ethical issue. Their family was concerned about what I might say. One of their sons actually came and stayed with me in El Paso and told me his side of the story. I showed him parts of the manuscript, but they were the only family that I allowed to see it. They ended up allowing me to excerpt their parents' journal in "My Own Country." It was an extraordinary manuscript, which the parents had kept, waiting for the day when their children would know what they had lived through.

How do you reconstruct snippets of dialogue that were spoken so many years earlier?

It s almost an impossible job in nonfiction to get dialogue exactly how it happened. You have to make a leap into your memory. When possible, I visit with my former patients and say "do you remember the day that this and this happened?" And I consult the journal that I write at night.

When you're keeping your journal of medical events, are you aware of the cases being potential literary fodder?

I don't think I've ever seen a patient with the intention of writing about them in the future. But I am conscious that what I write about them in my journal at night might become the kernel of something I write publicly later.

I heard you wanted to be a journalist, but your parents pushed you into medicine.

That's true; medicine was considered more respectable. I really wanted to become a journalist before I read "Of Human Bondage." Somerset Maugham is a tremendously important influence on me, not as a writer but as a physician. I have this theory that there are novels that call people to medicine, at least for my generation. For this generation it might be the show "ER." But for me it was "Of Human Bondage". There was a character, Philip, who wanted to pursue art but had this sense that medicine would satisfy all his creative desires. That made me want to become a doctor. My other big hero is William Carlos Williams. He was a legitimate poet before he went into medicine.

So you're a poet as well?

I love to read poetry but I haven't written anything that I'm willing to show anybody. William Carlos Williams had a theory that for art to be meaningful it had to emanate from everyday, workaday life. That's why he went into medicine. He believed in that to the point that when he was in his late 60s he was holding evening clinics and snatching little pieces of time to jot down pithy poems that became so important later.

A lot of doctors say they are too overworked to spend much time reading or writing.

My feeling is that given how privy we are to the intimate details of people's lives, it's a surprise that more of us aren't writing. I think that when you've been in practice a number of years, there's an urge to unburden yourself -- not to take somebody's nasty little story and expose it, but to convey the extraordinary kinds of things you see. To tell about the incredible resources human beings have when they're very, very stressed. These stories take place every day in hospitals all over the world. To not tell them is to feel an unbearable sense of loss.

Are there parallels between writing and medicine?

Oh yes. The first thing you do as a physician is to take a history, and what is a history but a story? When I'm called in as a consultant in my role as an infectious disease specialist I'm impressed by how many times my expertise isn't that I bring some extraordinary knowledge that solves the case. It's that I take that history better, or it means more to me, or I pursue it down further paths than the intern might have, and when I examine the body I'm looking for more clues that the story might be there. It's like I'm milking the body for more stories. In writing and medicine it's technique and detail that matter a whole lot more than extraordinary knowledge. I remember hearing the same aphorism at the Iowa Writers' Workshop as I did in medical school: God is in the details.

Are you saying that writing has made you a better doctor?

I think so. Literature is a beautiful way of keeping the imagination alive, of visiting worlds you would never have time to in your day-to-day life. It keeps you abreast of a wider spectrum of human activities. We have the sense that medical students come to medicine with a great capacity to understand the suffering of patients. And then by the end of the third year they completely lose that ability, partly because we teach them the specialized language of medicine, the jargon, and in the process they lose their compassion, their ability to imagine how others feel. Patients become "the diabetic foot in room 3" or "the myocardial infarction in room 8."

My second book, "The Tennis Partner," is about the phenomenon of physician addiction and suicide, which is in epidemic proportions. Every year it takes two classes of medical students to replace the numbers that have committed suicide. They have no outlet to talk about the carnage they see at the hospital. They deaden themselves to their own feelings and they self-medicate. The way to make better, healthier physicians and improve society is to re-humanize their training. I really think teaching the humanities is a way to keep their emotions alive, not succumb to the tunnel vision that comes with a technical education.

Explain how you develop your patients into characters.

That's the beauty of nonfiction. You struggle much less to [do so,] because you don't have to invent. It's a burden and it's a blessing. Readers are inherently interested because they know it's true. For example, if I made up a story about a black quarterback who won the Heisman Trophy and married a beautiful blond woman and then slaughtered her in the driveway and got acquitted, as fiction that would be mundane because it would be unbelievable. But look at how it attracted us as nonfiction.

The issue of confidentiality came up again in "The Tennis Partner". You revealed that David, the main character, had been fantasizing about an old girlfriend even though he was living with another woman. How did those two women react?

They sat down with me for hours on end and gave me their stories. I gave both of them the chance to read the manuscript and make changes, and in both cases there were things in the manuscript they didn't know about. It was very tough for them to learn that. They were very cooperative.

Why do you think they were?

Again, I think it was a sense of mission. The flip side of suicide is that it leaves a lingering question in the minds of the people who survived. It's like a cancer that's metastasized. The suicide is the cancer and the metastasis is all these people saying, Why? Why? Why? In a way my book was an exploration of Why? It's helped them put closure on it.

Both books weave the dissolution of your marriage into the narrative.

I never thought I'd be revealing this much about myself. I had this naive idea that I could just write an interesting story about AIDS in a small town in Tennessee and there came a point when the editor said, "You've become a character in this book. The reader will feel cheated if he doesn't know what happens to you when you go home at night to your wife and kids." So it was forced from me, dragged from me piece by piece.

And your wife?

She wasn't happy. Nobody wants to appear in a book without his or her permission. I tried not to portray her as malicious because she wasn't. But if she was telling the story it would have probably been quite different.

Will your next book be a memoir?

I'm a bit leery of plowing my life for material anymore. It's painful. It's cathartic, too, but to have a lot of people reading it is scary. But if someone has done me the justice of reading the whole book, they've earned the right to learn anything about myself that I've chosen to reveal. The narrative voice I've found seems to demand that I'm a character, even though I'm always the last one to realize it.

By Amy O'Connor

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Aids Books Health India Medicine Suicide Writers And Writing