Hospitals

Patients should risk the label of “difficult” to get the best care

I’m fascinated by the topics raised in a recent Health Affairs article, “Authoritarian Physicians and Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making.” There’s a lot to say on this issue. I’ll touch on just a couple of points here and try to write some more about it another time. […]

I’m fascinated by the topics raised in a recent Health Affairs article, “Authoritarian Physicians and Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making.” There’s a lot to say on this issue. I’ll touch on just a couple of points here and try to write some more about it another time.

Researchers facilitated focus groups with a group of mostly well educated, affluent adults in Palo Alto, CA. About half had a graduate degree, and 40 percent had incomes over $100,000. Not surprisingly, as a whole this group wanted to participate in “shared decision making” with their physicians. However, many felt inhibited and in particular were concerned about being labeled as “difficult,” which they thought could lead to problems down the road. Here’s a sample comment from a focus group:

“Is the guy going to be pissed at me for not doing what he wanted? …Is it going to come out in some other way that’s going to lower the quality of my treatment? …Will he do what I want but… resent it and therefore not be quite as good?”

I can identify with this demographic group and with the sentiments. And I agree with the authors that if this group feels it can’t speak up, it’s unlikely people with a lower socioeconomic status will do so.

I didn’t see anything in the article differentiating between primary care physicians, medical specialists and surgical specialists, but to me those distinctions are helpful in approaching the issue. There’s really no reason that people should settle for a primary care physician relationship where they feel intimidated. I would encourage people to shop around for someone who will take them seriously and engage with them with the right tone and at the right level. The newer crop of primary care physicians in general is open to this approach, as are some more established physicians. I recently found a new primary care physician in Boston (after my old one retired) who very much fits this mold, and I’m happy about it. One of the key issues in the article was the lack of time patients have with their physicians. If that’s an issue it might be worth finding a concierge practice, despite the added cost.

Surgeons are a different story. As my father told me when I was 22 years old and having a consultation about a shoulder injury, “surgeons like to cut.” Sure enough I emerged from that appointment with a strong recommendation for surgery (which I didn’t follow through on). The thing to remember in these situations is that in many cases a surgeon is also a salesman. In the same way you have to remember to be careful in dealing with a real estate broker who has a great house for you, and not get into the psychological situation of feeling the need to please him or her or feel badly about wasting his time, consider that the surgeon may very much want your business. The surgeon may be very professional, and even believe he/she has your interest at heart, but as someone who’s committed a career to performing surgery and who has an economic incentive to perform it, he/she may not be as objective as you’d ideally like. You really should think about bringing a non-surgeon physician — like your primary care doctor — into the discussion and asking specifically about alternatives.

Today I met a man who had a wrist brace. I asked him about it and he told me he had gone to a surgeon at a respected hospital in Boston who diagnosed him with a cartilage problem and recommended surgery to “clean everything up.” He had the surgery and six months later wasn’t feeling any better. In fact, he told me on some days he can’t even pick up a glass. He went back to the surgeon recently and was told, “surgery isn’t an exact science and these things happen. I can go back in and fix it up.” According to the patient, the surgeon didn’t express that lack of certainty the first time around. Of course, I’m reporting second hand on what I was told. Maybe the surgeon provided a more nuanced view the first time and the patient just heard what he wanted to hear. On the other hand, maybe the guy should have taken the risk of being labeled a “difficult patient” and gotten more details on the surgery and its possible downsides. I would have.

Medical specialists — in general — are somewhere in between primary care and surgery. The best of them are into shared decision making. If you can find someone like that, go for it. (I’ll try to write more about this another time.)

Interestingly I’ve found that referring physicians don’t have a good sense of how those they are referring to interact with patients. I   had   one   occasion where my primary care doc referred me to a highly regarded surgeon that I perceived to be a  pure salesman. I asked him for another referral and found someone much more to my liking. My PCP told me he appreciated my feedback — it wasn’t something any other patient had ever shared with him, and I guess he had probably never asked patients either. If you have a primary care doc you work well with, I would definitely report back on your experience with specialist referrals, because you may end up helping other patients.

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