Winter 2017

On Tough Choices

When patients refuse treatment.

By Alan S. Rockoff, M.D.

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Illustration: Ward Schumaker

How do you treat a patient who doesn’t want to be treated? It depends. If the problem is acne or a wart, it’s all right to let it go. Harriet, however, has HIV. And a facial basal cell carcinoma. Now what? Perhaps it still depends.

After showing me a red spot on her right cheek, Harriet put me on notice right away. “I don’t believe in unnecessary treatments,” she said. I asked her what she meant. “I’ve been HIV-positive since the mid-1980s,” she said. “Last year my doctor wanted to pump me full of those poisons. So I changed doctors.”

“What does your new doctor think?” I asked.

“My T-cell counts aren’t very good. He also thinks I should take those medicines, but I don’t see him much. I went to another dermatologist about a different problem. He got very angry at me, because I had called in advance to ask not to be seen by a resident. They told me that would be OK, but the resident showed up anyway. When the doctor also came in and I tried to explain, he threw me out of the clinic.”

By now I’d gotten the picture: Harriet has her own ideas about things and is not about to take advice with which she doesn’t agree. What makes Harriet different is not that she ignores medical advice—people do that all the time—but that she comes right out and says it to the doctor’s face. Others wait till they get home. So what do you do when a patient shows that he or she is ready to look you in the eye and turn you down flat?

What is the worst that could happen if a patient refuses treatment?

One response is to leave the room in a huff. After all, who’s the expert here, and who’s trying to help whom? That reaction is understandable, but if the doctor walks out, who is being helped?

There is, of course, another approach, which is to suppress the ego and ask: What are the actual medical stakes, and what is the worst that could happen if a patient refuses treatment? What realistic options, if any, are there to change a patient’s mind? Why is the patient behaving that way?

In Harriet’s case, what are the medical stakes? I am no HIV specialist, but how many patients who seroconverted in the 1980s are still around to consider their options? (Other such patients have told me their doctors really don’t understand how patients like them survived.) If Harriet is sexually inactive and does not try to donate blood, how sure are we that she isn’t better off doing nothing? What other options are available to change her mind?

Before turning to my third question, I have to plan what to do if the biopsy confirms my clinical diagnosis of basal cell. I will inform Harriet and recommend Mohs surgery. Suppose she refuses and wants a lesser procedure, or no surgery at all. What then?

If the patient is elderly, and the lesion is not near a strategic organ, such as the eye, it may be acceptable just to watch it. Some basal cells grow fast; others barely grow at all. If Harriet decides to do nothing, I could explain my preference—surgery—and her risks, such as lesion growth and bigger surgery later, and insist on seeing her every two months.

Which brings us to our third question: Why is Harriet being noncompliant? There are two possibilities. The first is fear. Scared people often act aggressively. Calmed down, they relent. The second is that Harriet is what the English call “bloody minded,” in other words, deliberately uncooperative.

Battling with the bloody minded is not helpful for anybody. Negotiating with difficult people is much less gratifying than giving advice and being respectfully thanked for our efforts and expertise. Sometimes, though, the best we can do is to swallow our professional pride, try to alleviate what fear we can, and push only as hard as clinical risk truly justifies. This is not always easy to do, but it certainly may be the best available alternative.

Harriet’s biopsy showed a basal cell. She readily agreed to surgery.

So you never know.

Alan Rockoff is a clinical assistant professor of dermatology at Tufts and a regular contributor to Dermatology News, where a version of this essay first appeared. It is reprinted here with permission. Last fall, he published Act Like a Doctor, Think Like a Patient: Teaching Patient-Focused Medicine.

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