Beacon Broadside

Danielle Ofri is a writer and practicing internist at New York City’s Bellevue Hospital. She is the editor-in-chief of the Bellevue Literary Review. Her newest book is Medicine in Translation: Journeys with my Patients (View the YouTube book trailer.) You can follow Danielle on Twitter and Facebook, or visit her homepage.

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 who 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.

Read more about the ethics of doctors writing in Danielle Ofri’s essay in The Lancet.