Doctors need to make room for disagreement with patients

While our dad was in the hospital last winter, my brother shared with me his strategy for talking to the doctors we encountered – an approach honed over ten years of marriage to an internist and dozens of pediatrician visits for his two little boys. He asked smart questions that used medical terms to earn their respect, he told me. He was appropriately deferential, admitting his lack of clinical experience. If he disagreed, he gently offered empirical evidence to support his argument and then hoped that the doctor listened and didn’t get defensive.

That’s a tall order, even for the savviest of patients.

I’ve written before about shared decision making: the idea that for medical decisions in which there is no clear right or wrong answer, doctors and patients should collaborate on choosing a path that best fits the patient’s preferences. The success of this approach rests on the ability of patient and doctor to have a frank conversation. But this has been historically difficult and a study that was published last week in the Archives of Internal Medicine helps explain why.

California-based researchers surveyed 1340 adult patients about a hypothetical scenario of deciding on a treatment for heart disease. Almost all of them reported that they’d be comfortable asking their doctors questions about the options (93%) and stating their preferences (94%). Good news so far. But only 14% said they would tell their doctors if their preferences clashed with the doctor’s advice – not because they couldn’t express this disagreement, the survey results suggested, but because they felt it was socially unacceptable to do so and wouldn’t end well. Many feared being seen as a difficult patient; others worried that they would hurt the doctor-patient relationship or would get in the way of their care.

The part that most struck me was that factors like age, income and education level didn’t predict a patient’s willingness to disagree (neither, for the record, did the existence of true heart disease, extent of their medical issues, or race). The only predictor of voiced disagreement was a general preference for making one’s own medical decisions.

In the clinic where I practice, most patients are Massachusetts General Hospital employees. While their jobs range from cashier to cardiologist, their education levels and health literacy tend to be above average. Yet, I’ve seen many of my patients fall into the same traps described in the study. Though they often have the background to say “I’m sorry, I don’t mean to be a difficult patient,” they still worry about being one.

It’s an important reminder to myself and other doctors to make room for disagreement: To ask, explicitly, what is your preference? And then to say, explicitly, it’s truly up to you.

What have your experiences been? How do you make your preferences known, especially when they are at odds with your doctor’s recommendations?

Ishani Ganguli is a journalist and an internal medicine-primary care resident who blogs at The Boston Globe’s Short White Coat, where this article originally appeared. 

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  • justanotherepatient

    I switched PCPs almost a year ago over this very issue. I research a great deal as part of my profession, so I tend to come to medical appointments with several questions and possibilities in my mind. My spouse was exhibiting symptoms that seemed to fit a couple of possible diagnoses. I spoke with my PCP, we agreed on a plan for differential diagnosis, and then my spouse made a follow-up appointment. Not only did the PCP not do any of the things we agreed upon, but he also, based on one offhand comment my spouse made, completely changed the diagnosis based on a hunch, did no testing, and then called us in to tell us he “knew” what was wrong. The treatment he proposed was completely unacceptable to both my spouse and me, and the specialist he wanted to use was someone we knew had a poor track record. I felt my trust was violated as a patient since the doctor completely disregarded a plan we made together, came up with something out of left field, and then tried to push it onto us as if it were the only possible diagnosis.

    Thankfully our new PCP listened to both of us at a visit, conducted the necessary tests, and began a treatment plan that seems to be helping some. We’re in the process of finding the best specialist to continue past what our PCP can do, but at least we made a start and he didn’t disregard my questions, provided research studies to support his initial treatment plan, and supported our finding a good specialist to continue treatment.

    I think as a patient I have to be able to think critically, differentiate junk science from decent research, and have good questions. I think a doctor should answer questions, admit when he or she doesn’t have the answers, and find them or refer appropriately. If I disagree with the doctor and have credible evidence to support my opinion, then he or she should either do as I ask if it’s not ethically uncomfortable or else send me to someone who will feel comfortable with the approach I want.

  • Brian Jackson

    Check out http://www.nytimes.com/2012/08/22/opinion/invitation-to-a-dialogue-arguing-with-doctors.html for an even stronger take on this topic.
    I totally agree that disagreement between doctors and patients can be constructive, and that it’s up to doctors to make it ok for this to occur. The dependence a patient has on a physician, especially in an urgent or critical setting, creates an enormous power imbalance.

    About a decade ago, as my wife was in labor and receiving an epidural, I cautiously attempted to engage the anesthesiologist in a discussion about the drug mix he was injecting. I suspected (correctly, as it turned out) that he was using older mixture that would cause unnecessary immobility during labor. I also wondered if my status as a fellow physician would make him more open to such a conversation (not that it should make any difference). He sarcastically extended the syringe toward me and asked if I wanted to take over. Knowing that my wife was dependent on him for pain control (and indeed her safety, in the unlikely event she needed a C-section), I immediately clammed up. Postscript: for her next delivery, a planned C-section, my wife chose a different hospital, and the anesthesiologist there was a gem.

  • Amanda Lynn

    If you think negotiating heart treatment is difficult, try being a psych
    patient with bipolar disease trying to negotiate THAT treatment!!! I am the fourth of five generations with diagnosed serious mental illness (SMI). I have two first degree relatives with bipolar and I have bipolar II. Pretty impressive genetic load BUT because of that history and because I have been a seeker of care for both myself and my family members I have a lifetime of lived experience on which to base my opinions and preferences. Additionally, although I make my living in an unrelated field, I am a research intern at a prestigious psychiatric institute on the east coast.

    Very recently my psycho-pharmacologist added a medication to my medication cocktail. Several weeks later it became clear to me that I was becoming destabilized. I called my doctor three weeks before our scheduled appointment and left a message saying that I really needed to see her, that I was in the early stages of a dysphoric manic episode and I needed to stop the recently added medication. When I saw her she became very defensive and told me that I was not the person to decide what medication to stop but that only SHE could decide that. Although she agreed that I could stop it, she also instructed me to increse my two mood stabilizers. That would be three changes at one time.(not great science and not great clinical practice in my opinion). The most egregious thing was that she told me my knowlege base was not appropriate or useful in my own treatment—that if my knowlege base were so great then I would not need to be in her office. I told her that if my knowledge base were not so great, I would not have contacted her three weeks before my scheduled appointment and avoid a full blown episode!!

    Psychiatrists are not the only offenders. I went to consult with a plastic surgeon because I needed to have a large lymphoma removed. I informed him of all the medications I take. He asked me what they were for and I truthfully told him I had bipolar. He responded, “Oh great! does that mean you’re going to flip out if I do the surgery?” I was speechless but because he was in my insurance network and I needed the surgery, I allowed him to perform it.

    I recently went to a new internest. Same story except that after I disclosed my psych dianosis he said, “Oh, but high functioning?” to which I responded, “Thank you. You too!” He “got” it and is (I hope) teachable enough that no one else in his practice will hear that comment.

    I can tell a million more stories but I think too often in medicine psysicians are too quick to dismiss patient’s general knowledge and lived experience. The take-home message is, your patient is the expert on your patient!
    .

  • http://www.facebook.com/victoria.ford.564 Victoria Ford

    I think a lot of patients have a hard time trying to communicate with their doctor. In my case this is partly because of the bias of the medical profession against anything that is seen as being alternative or complementary. I have metastatic breast cancer and I don’t bother to tell the oncologist about the supplements and Chinese Herbal Medicine that I take. Tried it once and the onc just looked to the ceiling with disinterest and wasn’t really listening after that. It is my life and my body and I will take the path that I think is right for me. I want to use supporting treatments through supplements and nutrition rather than the conventional slash, burn and poison approach which causes the body and its immune system to break down. Chemo is far more likely to kill that supplements.
    Data shows that adverse reactions to pharmaceutical drugs are:
    62,000 times more likely to kill you than food supplements 7,750 times more likely to kill you than herbal remedies
    http://articles.mercola.com/sites/articles/archive/2012/07/24/pharmaceutical-drugs-vs-nutritional-supplements.aspx?e_cid=20120729_SNLNew_MC_1
    http://anhinternational.org/news/anh-exclusive-natural-health-products-ultra-safe-and-drugs-dangerous-war
    Respect is a two-way street, especially when you are dealing with my health. I want honest open opinions and not medical prejudice to be used in dealing with my illness. After all conventional medicine says I will die from this disease, so I will do what I think is best to delay what they see as the inevitable.

  • http://www.facebook.com/christy.s.wright.3 Christy Spillman Wright

    I have been a hospice nurse in Oregon for 15 years. I believe that my job is, to the best of my ability and knowledge: discuss what the patient’s choices are and where, in my experience, each choice will take them. Then I get out of the way and allow the patient/family make the decision. i also work my tail off to help make their decision the right one for them. Hospice medical directors also “get” the fact that they are only part of a comprehensive team that works for the patient.

    I have been dressed down by other physicians when discussing end-of-life care with dying patients and family. This happens, I think, because dying is considered failure of the medical model and therefore not accepted as a legitimate option in the plan of care. While many physicians might bristle at the notion that they do not have the patients best interest at heart, I have seen patients suffer terribly to undergo one more chemotherapy with the statistical chance of a cure at 0.1%. This is because physicians are fearful of the hard conversation or cannot accept failure or have not come to terms with death as a part of the life cycle. Patients mostly get this and they are anxious for the physician to sit down with them and have an honest conversation.

    Patients must be an equal partner in their treatment team. To be an equal partner, they must be educated. Physicians must be able to hear what their patients are telling them and give them the space and the right to say what they need to say. Each patient carries within them a wisdom about their body that no other person has.

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