When it's a good idea to be a difficult patient

I’m fascinated by the topics raised in a new 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.

May 14, 2012

2 thoughts on “When it's a good idea to be a difficult patient”

  1. I agree that PCPs don’t always have a good sense of how a specialist will interact with patients. Often they have only interacted with the specialist (if at all) on a doctor to doctor basis. Under those circumstances, the specialist may seem quite polite and cordial. Why wouldn’t he/she be, when he/she is hoping for a continuing stream of referrals?

  2. I find it interesting that you believe that “people with a lower socioeconomic status” will not be likely to speak up to their health care providers. I am disabled due to having juvenile rheumatoid arthritis(JRA) since the age of 7. I’ve lived with it 28 years now, many of those years without treatment because I was deemed to have a mild case of JRA and at that time, only kids with more serious cases were treated aggressively. They simply didn’t place an emphasis on prevention of joint destruction as we do now. Due to that, I have a good bit of joint destruction and have many secondary conditions. All together, these issues mean I can no longer work. I was able to work from age 16 to age 26 but not at high paying jobs. I started to go to college but between working full-time and trying to go to school full-time and having the two over an hour apart in distance, my health just could not handle it. I was running myself into the ground. While I highly value education, I am glad in a way that I did not pay for an education I am now unable to use. I can become educated about things I am interested in outside of the formal learning process of college.

    I was 25 before I was put on a DMARD to actually treat the disease process. Even though my treatment was not ideal during my childhood, I blame no one since at that time we didn’t know that early aggressive treatment was the best thing for patients. My pediatric rheumatologist often used me as a teaching patient. When the students could not answer questions he asked them, he would turn to me and I would answer them to his satisfaction. Here was a kid between 10 and 13 answering things that med students couldn’t answer. That earned some odd looks from the students.

    He also didn’t keep from me anything he told my mother. He seemed to feel that it was my body and my life at stake so it was my right to know as much as I wanted to about my disease. This was true even when I was 7. I knew by the age of 10 that autoimmune diseases such as JRA, rheumatoid arthritis, lupus, polymyositis etc were known to shorten life spans and could cause death, generally through heart problems. I was taught to ask questions about symptoms, treatments etc. My doctor listened to my thoughts about my treatment. As a teen, when I complained that the medication I was on was not helping, that I was still in pain and that it made me nauseous as well as a vague feeling that something just wasn’t right. I was informed of the risks of no longer taking the medication and then the decision was mine. My Mother felt that it was MY life, therefore my decision. Chronic illness has a way of making a child grow up and mature pretty quickly. No one liked my decision but since I was not on a DMARD, just an NSAID which was only treating the symptoms and not the disease, it was my decision.

    I was 18 or 19 when I went online and began reading all I could about RA and JRA. I learned about medications, tests, etc. That knowledge coupled with living with JRA as well as a doctor who taught me quite a lot of JRA has made me into a patient that many doctors do not want to deal with because I insist on shared decision-making as much as possible. If a doctor cannot respect that it is MY body and life that affected by every decision made and that I want to be a part of that process, then they are not the doctor for me. I’ve had doctors tell me things that were false and when I asked a question that demonstrated I knew they were giving me false information, it was almost funny to see the look on their face. I’ve also had doctors who didn’t like to share the decisions. I am sorry they didn’t like it, but as I said, it is MY body. They don’t feel what I feel and live my life. So as long as I am properly educated about the options, the risks and benefits of the treatment etc and can feel comfortable making a shared decision, why shouldn’t I be able to? If the decision is made for me, I am much less likely to be compliant than I am if the decision is made together.

    I am very thankful that my last rheumatologist in South Carolina (who went to the medical school in Indiana that the children’s hospital I was treated at was affiliated with and was possibly taught by my pediatric rheumatologist), my current pain doctor and the nurse practitioner at his office as well as the nurse practitioner I now see for rheumatology care all seem to value a patient who is educated about their disease(s), medications and other treatments.

    Just because I am not in a certain socioeconomic class does not mean I am intimidated by a doctor. Despite what some of them think, they are just as human as I am. They may have more formal education than I do, but I live the disease. I know the ins and outs of my body, what is normal and what is not, my reactions to certain things, my tolerance for being able to handle symptoms, etc, in a way that they cannot fully understand unless they too have felt what I feel. It may be that I am a rare patient, but judging from the patient advocacy groups as well as patients who use social media etc. I am not that rare. There are plenty of patients who are well-educated and comfortable seeking shared decision-making with their doctors.

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