CASES  On Record: Conflicting Obligations

By ABIGAIL ZUGER, M.D.

My new patient was a slim middle-aged woman, elegant in nylons, earrings and a silk suit. But when she sat down, suddenly something was wrong. I looked at her more carefully. Her hands were big. Her feet were big. Her jaw was chiseled. She had a definite 5 o'clock shadow.

While she chatted on about her bunions, I leafed through her chart with increasing desperation. It was no help at all. She was a consistent "she" throughout the record.

But I was pretty sure I knew a man when I saw one. I was also pretty sure that gender is an inarguably germane piece of medical information, and that, in good conscience, I could not examine this person until I had cleared the matter up. I looked at her again. Her stubble gave me strength.

I took a breath. "I have to ask," I said. "Forgive me. But are you a . . . a transgender person?"

She looked crushed and horrified and for a moment my stomach dropped. "How did you know?" she said.

I pointed to my upper lip.

She grimaced. "I've tried everything," she said. "Is it very bad?"

I shook my head. "Not too bad."

"You're very smart, doctor," she said. It was not a compliment. "Very smart. Now listen to me. You are not to put this in my medical record. I do not want anyone to know. This is my private information, and I want to keep it private. Period. Do you understand?"

I said I understood, although the only thing I really understood was that the remaining 7 of our allotted 20 minutes together were not enough even to frame the necessary discussion, let alone conduct it. I examined her briefly and sent her off with a referral for her bunions.

Then I turned to type my note into her record.

This all happened many years ago, but I could easily be sitting there still, fingers over the keyboard, considering and rejecting my options, one by one.

The medical record is the sacrosanct text of medical care, the repository of all truth — or at least as much as fallible medical personnel can lay their hands on. Like any text with lofty aspirations, it confers a variety of legal and moral obligations on its custodians. Two predominate: the obligation to keep the record accurate, and the obligation to keep it confidential.

Unfortunately, these obligations sometimes tug in opposite directions. The record must communicate accurate information to parties who need it — but the more it communicates, the more its pretensions to inviolable confidentiality erode.

Insurers freely romp through it. Fragments zoom from agency to agency. Computer files are hacked, faxes are sent to the wrong number, messages are left on the wrong machine, wastepaper flies through the streets — entropy scatters confidential medical data everywhere. Malice and happenstance can also play a role: your neighbor's husband lands a clerical hospital job — as actually happened to one of my patients — and next thing you know the intimate details of your venereal diseases are all over town.

So patients sometimes plead for small omissions that shave just a little off the accuracy of their record in the interests of privacy. Several gynecologists I know, for instance, omit from patients' charts the results of tests for the genetic mutations associated with a higher risk of breast and ovarian cancer. Doctor and patient know the results, but no one else can stumble across them.

Concealing a patient's travels from one gender to the other would be more than a little white elision, though. It would be a deliberate act of obfuscation that would spawn many more (like an alibi for why I was inexplicably neglecting this patient's routine gynecologic care). What about the female hormones she was taking, not recorded in her chart, that could interact dangerously with dozens of other prescribed medications? It was impossible to do as she asked.

On the other hand, here was a capable patient who wanted to dictate the parameters of her medical care, whatever the fallout. Period. All patients do this to some extent. Why penalize this one? Anyway, she had been a "she" for years in her chart. Surely another few weeks would not be my moral or legal undoing.

As it happened, the weeks turned to years and the discussion continued on, in 20-minute blocks, until she moved out of town. By then we had reached an understanding. Her hormones were listed in the chart. Doctors who needed to know the truth were told. But the podiatrist who did her bunions was none the wiser (and her toes turned out fine). As for her chart, I can only say that it is probably still best considered a work in progress.