Friday, Jul 4, 2008
Is it ethical for a doctor-turned-writer to use his patients for material?
Nov 15, 1999 | 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.
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