Telling a patient story and the issues facing physician writers

There is a veritable epidemic of doctor-writers out there. What is going on?

Are doctors suddenly in the kiss-and-tell mode? What about confidentiality? Professionalism? HIPAA?

As one of the aforementioned doctor-writers, I look upon this trend with both awe and trepidation. I suspect that that this flourishing literary phenomenon relates to the public’s fascination and fear about all things medical. It also relates to the falling away of previous, pedestal-like images of doctors and doctoring. Lastly, it may have occurred to the medical profession—and this has taken a few centuries, it seems—that doctors have profound emotional reactions to the work we do, and that exploring these reactions may offer benefit to both patient and doctor.

Whatever the reason, this literary genre appears to be here to stay, and it is worth considering the ethical implications. Legally, there doesn’t appear to be much beyond protecting identity and avoiding libel.

But physicians clearly need to work with a higher bar. For starters, patients speak to doctors with an expectation of confidentiality. This is vastly different from an ordinary citizen speaking to a journalist. This confidentiality needs to be preserved. Unless a patient indicates otherwise, a doctor-writer must change the name and identifying characteristics. My rule of thumb is that the description must be different enough that it would be tough for anyone other than that person or a close associate to recognize them.

This, of course, brings up an issue of reliability. We’re trafficking in nonfiction, not fiction. When I write, I try to ensure that the aspects I change are not the crucial ones in the story. When talking about the intricacies of an illness, it probably doesn’t matter whether the hair is blond or brown, or the country of origin is Trinidad rather than Jamaica. If these minor things mask the patient’s identity without altering the key aspects of the story, then I think it is a reasonable trade-off.

But most importantly, there is the consideration that patients come to us for our help. They are in a particularly vulnerable situation and doctors have an ethical obligation to put that first. If, at some later time, this seems like a story that might edify the current discourse, the doctor might think about writing it up. It is helpful to let some time pass, so that the situation is no longer “active.” If it’s possible to obtain consent, we should do so.

If I can’t obtain consent, then I need to ask myself whether I feel the patient might be hurt by the publication of the story. If there’s any thought that this person would be uncomfortable or embarrassed or pained, then the story stays in the drawer, no matter how amazing it is. (I have one powerful story—about a patient lied to me, and the implications of that lie—but I suspect that my patient would be unhappy if he ever saw the story, so I’ve never pursued publication.)

Ultimately, I want to give a respectful rendering of my patient’s story, one that I hope would honor them and what they’ve endured. Of course this is necessarily a subjective decision, but it is the only internal ethic that I can live with. My patients have entrusted me with their stories, and I need to respect that. If a particular story can edify future doctors, or educate the public, there might be value in publishing it.

I choose these stories very carefully. I obtain consent when possible—patients almost always have a positive reaction. I let time pass. I try my best to write a story that honors them, and show a draft to them if circumstances permit.

Ultimately, doctor-writers have to treat patients’ stories as we treat our patients, realizing that we are in a privilege position, and taking care not to abuse that.

Danielle Ofri is an internal medicine physician and author of What Doctors Feel: How Emotions Affect the Practice of Medicine.

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  • http://www.medicalisland.net Dr. Lawrence Kindo

    I totally agree with the author considering express consent of the patient before publishing anything about him/her. It is definitely the patient’s right to his/her own suffering. Treating them like dumb or inanimate objects would merely make them laboratory animals.

    As a practitioner in India, I have come across numerous cases where patients agreeing to hospitalization have been invariably subjected to various tests and evaluations without any further consent even if it is only for the academic benefit of the doctor concerned. Such practices should be abhorred as it lowers the patient’s value to nothing.

    Similarly, patient stories should also be treated with respect to honor the dignity of the patient. I definitely support compulsory express consent from patients for publishing their data in whatever format.

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