Perri Klass

Protected Health Information

I have the greatest stories that I can never tell. One part of my day job is that I'm a pediatrician, and seeing patients means that I come up against families of every description. There are intriguing real-life narratives built into every clinic session, around everything from the medical worries that bring families into the exam room, to the background stories of how they got to the city where they now live—and everything in between. Complex interpersonal dynamics play out in my exam room, and in the hospital beyond, joy and sorrow, healing and pain, miraculous saves and blinding tragedies. What more could any writer want?

And all those stories are what is called in my trade protected health information, or PHI. Every year, it seems to me, I take more mandatory trainings, with more mandatory on-line videos, reminding me over and over that I am legally not allowed to repeat these details, that I must guard this information carefully against even casual disclosures within the clinic, let alone against public retellings. Over and over, I am reminded to avoid violating patients' privacy, even by leaving information exposed on a computer screen in the clinic. I answer multiple choice questions like this (completely fabricated but reasonably representative) example:

You happen to see a casual acquaintance in the waiting room for the plastic surgery clinic, and you wonder whether he is considering having some "work" done. You should:
(a) search for his name in the Electronic Health Record and find out whether he's really going to do something about that nose of his;
(b) snap a quick photo on your cell phone and show it to your colleagues so you can discuss what would be the best way to fix his face;
(c) ask your friend the plastic surgeon whether he saw your acquaintance, and if so, for what;
(d) treat his visit as confidential, take no photos in the hospital, avoid discussing him with colleagues in any way, and never look up records in the EHR unless you are involved in the care of the patient.
(Spoiler alert for all you non-medical readers who have not watched the mandatory video: the correct answer is d)

I joke about the training, and there are times when I resent some of the more extreme rules put in place under HIPAA (the Health Information Portability and Accountability Act of 1996), but the truth is, I take the constraints pretty seriously, both professionally and ethically. I am deeply and profoundly aware that the stories people tell me, the human drama they allow me to witness, that's all happening because I'm a doctor and I'm there to help. That's why they are willing to answer even difficult questions, that's why they let me examine the private parts of their bodies—and of their lives. The details are meant to go in the record—the Electronic Health Record, that is—they are not "on the record" for any other use.

And yet, there are all these stories, and I'm a writer. I do write nonfiction about medicine, and I sometimes use stories out of my experience as a doctor, but over time, I've gotten more and more careful. Once in a while, I actually ask permission, telling people that I'd like to write about a particularly striking or unusual story—I won't use your name, of course, I say, but if you read the story, you would recognize yourself—and someone who knew the story, for example from the hospital, might know it was you. People have always said yes (obviously, I don't choose stories that would seem embarrassing), and sometimes they say, please use my name. But those are the exceptions—usually, I just suppress all identifiable details, which often makes the story much less interesting—and then often I ask a colleague to read it over and check whether I have, in fact, suppressed all identifiable details, and then I worry some more.

Note that I said I suppress the identifiable details, not that I change them. I have come to understand (teaching in a journalism department will do that to you) that making up new details, however plausible, is writing fiction. And since I do write fiction, that's where I take all the stories which need details, and many of the complicated emotions I'm trying to tease out. Sometimes it feels like I can make the characters in my fiction more "real" than the characters in my true stories; I can give them past histories and describe their physical appearances and let them speak for themselves, because I'm making it up.

Some years ago, I was publishing a novel. I had gone over the galleys, and I had sent them back; I had wrestled one last time with certain sentences which had never quite seemed right, and because the novel had a doctor heroine, I had fanatically checked and rechecked any small medical details. It was done, the decisions were made, down to the last comma (I tend to like commas, and I am one of those serial comma pedants), and the next step, unbelievable as always, would be publication.

And then that night I couldn't sleep because I started worrying that I might have inadvertently used a patient's real first name. Well, not a patient, the mother of a patient—I'm a pediatrician, and the protagonist of my novel was a pediatrician, and in the novel, she took care of the children of a likeable but troubled and highly melodramatic woman, someone with "boundary issues," as we say, who played out her complicated life right there in the clinic, making dramatic scenes in the waiting room. Ultimately, in my novel, she wandered off, leaving one of her children in the care of the medical assistant. My protagonist's assignment, in the novel, was to figure out whether—and when—she needed to report this mother to the department of social services.

I had used some pediatrician stories of mothers-I-have-known, exaggerating details, and building the whole thing into a complicated plot that had never really happened. But I had based my plot on real stories, and I was suddenly convinced that I might have given my fictional mother the same first name as a particular real mother in the clinic where I worked. How could I have done this, I thought bitterly, in the middle of the night, staring down at the notebook where I kept a little list of reminders to myself about lab results to follow up and school forms to submit. I had made up a last name for the family in my novel, but I couldn't even remember how I had chosen the mother's first name—what if I had made some kind of crazy writerly Freudian slip and given my character the same name as one of the women on whom she was based?

Just to convince you completely that the crazy person in this story is me, not some mother who had made a scene in the waiting room, I will tell you that I didn't actually remember the last name of this family—the child or the mother—and so I was not able to pull up the medical record the next day, when I got to the clinic, and I was not able to verify the mother's real name. I remembered the child, I remembered the story, but I didn't remember the name. I could, of course, have called the publisher and begged to change the character's name to something else—anything else—but what if the name I had given her was not in fact the real name, and in a last minute Freudian slip of truly epic proportions, I now succeeded in changing it to the real name—I had no way of knowing. Who knew what my subconscious might not be up to?

In retrospect, I can recognize all this as a particularly baroque example of the kind of terror which often descends when something is made final for publication, when you realize that your words are actually going to go out there into the world. I've had moments of being suddenly sure that I must have inadvertently plagiarized a particularly good line, read it somewhere and picked it up and used it without remembering that it wasn't mine (Google has made it much easier to deal with this particular anxiety, but then again, Google has also made it easy to stay up late checking your own work, sentence after sentence). I've had moments of being suddenly terrified that some carefully-worked-over scene actually made no sense at all and would make me a laughingstock, as a doctor or a writer or both. But I don't think I've ever tortured myself more ridiculously—or more extremely—than in those days when I managed to convince myself that after making up a character, giving her a life story I had invented, writing lines of dialogue she had never said, and scenes she had never lived through, I had then perhaps undercut myself by christening her with the real first name of someone who had partially inspired her—and whose last name I could not remember, so there was no way to check.

You have invented a fictional character, drawing on your clinical experience, in order to write fiction about some of the dilemmas and complexities you have experienced in clinical medicine. You should:
(a) make sure her appearance, ethnicity, and background are as close as humanly possible to one of the real people on whom the story is based;
(b) give her the name of someone on whom the story is based, or if not, perhaps a very similar or rhyming name;
(c) invent a name for your character, but then use verbatim incidents in your novel;
(d) make up your character's appearance, ethnicity, background, and all of the dialogue and the drama, trying to conjure some of the emotions of complex stories you have witnessed over the years, make up a name for this person you have invented, who is having these experiences you have invented, and then convince yourself that, reacting against all this make-believe, you have inadvertently used someone's real name, and will never forgive yourself.

The correct answer, I suppose, is none of the above.