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Sunday, March 1, 2009

Ten years ago, she had one year to live: Mistrust of doctors’ opinions

Dr. Abigail Zuger's story:
A patient and I have been conducting an increasingly existential dialogue on these subjects for years now – not easy to sustain in 15-minute segments, even less as we both realize we are getting exactly nowhere.

She has untreated HIV infection with an immune system now so dysfunctional that it is quite extraordinary for her to be still in the pink of health.

Which she is, no doubt about it. She feels fine. At some point in the past a health care professional hazarded that she had a year to live, and after 10 years she lost all faith in expert predictions.

From my own long experience with patients just like her, I know the very unpleasant future that surely awaits her. She has no interest in letting my memories drag her across the river. She only knows she feels fine. Furthermore, she has tried all the drugs that will change her risk, and every one of them makes her feel sick.

We have tossed this all around many times, and each time she enumerates the same paradox: I, with my gloomy warnings and my new ideas for medication, am trying to make her sick. She is determined to stay healthy.

Healthy to infect others, I point out. Healthy to leave her son an orphan. Healthy until she gets sicker than anyone needs to be.

Healthy in the here and now, she insists. Healthy not to throw up every morning, healthy enough to go to work, pay the bills and buy the kid a set of drums. Healthy to feel like herself.

Clearly, there is health, and there is health, and sometimes the twain just will not meet. Meanwhile, every time I look at her lab reports I feel a little sick.

When epidemic infection came to town in the old days, it was usually clear who was sick and who was well. Yet in the midst of New York's typhoid outbreaks of the early 20th century, one of the healthy was Mary Mallon, "Typhoid Mary," the cook who carried the germ, infected dozens of others, yet never got sick.

Health is as hard to define as love or happiness, and even harder to trap and keep.

Advice to victims of medical errors: Remember that even after you've had a doctor make a mistake, doctors are still right much more often than they're wrong.

Thanks to Dr. Abigail Zuger for the source article in the Sept. 30 issue of the New York Times.

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