I can’t find it now, but on one of our posts somewhere MovieDoc has stated that doctors can never ethically write about their patients since they are incapable of giving truly informed consent. Besides the obvious “huh?’ response I have to the idea that patients aren’t capable of making decisions like this, I question the basic assumption that this should never happen.
The medical literature is replete with published anonymized case studies of patients with various maladies. For psychiatry in particular, early psychiatric classification was based on longitudinal descriptions of diseases. If it weren’t for the early case descriptions of Kaposi’s sarcoma in gay men published in the 1980’s, AIDS would not have been identified as a new disease. Case studies can and should be published to advance medical science.
Some medical schools are requiring medical students to write essays about their patient encounters, to build communication and empathy skills and to get them thinking about patients as whole people rather than a single organ system. This is a good thing, and as several commenters on this blog have noted some doctors really need work on this. Patient narratives force doctors to seriously think about personal aspects of medical care, and from a patient perspective they may help people understand how doctors think and what they feel about providing care. Improved mutual understanding and communication is a good thing.
Andrea Crawford wrote a very nice piece about this entitled “For Writers, The Doctor’s Definitely In” for the Poets and Writers web site. In this article she lists numerous physicians who have written about their experiences and the unique position physicians have to write about human suffering. Physician memoirs may educate other doctors about work in underserved settings or places: Paul Linde has written two books about his work in Africa and as an emergency room psychiatrist (I’m reading it now, it’s good.). Inspiring doctors to provide care to the underserved is a good thing.
So that’s at least three or four reasons why medical writing should happen. The real question is, what’s the best way to do it?
There seems to be four general mechanisms: completely fictionalized vignettes, as we did in our book; anonymized real cases stripped of identifying details; completely factual cases written with the consent of the patient, as done in the New York Times, or the “literary non-fiction” approach of medical writers like Linde. In the literary non-fiction genre doctors write anonymized case composites based upon actual experiences. The “patient” in these publications are not a specific real person, but are build out of various aspects of real cases.
There are problems and limitations with all these approaches and I don’t have a strong opinion about the “best” way to deal with this issue. Factual cases written with patient consent is the ideal, but this is not always possible if the writing is done years after the event when the patient can no longer be located or may be deceased. Fictionalized vignettes are probably the best ethically, but from a reader is then left wondering how much—if any—of the story is real versus written for dramatic effect.
I’ve done some searching in this area and we Shrinkrappers obsessed quite a bit about it when writing our book, but I haven’t seen any guidelines about it anywhere. If I’m missing something, speak up.
*This blog post was originally published at Shrink Rap*