When patients ignore the evidence: Try to understand their values

When patients ignore the evidence: Try to understand their valuesI still remember being taken aback by how young she was. “She” was Mary — a 28-year-old woman who had completed chemotherapy for stage II breast cancer. She was treated elsewhere and had moved cities when her husband got a promotion.

“I’m still getting used to this area, but I am happy my hair came back before we had to move. I can’t imagine trying to set up a new house and have to go through my cancer history with strangers. I just don’t want to be that young mother with cancer.”

We reviewed her medical history, the details of her pathology, her prior treatment and current endocrine therapy.

“How are you doing on tamoxifen?” I asked.

“Fine. I think it agrees with me, fortunately!” she said.

We discussed surveillance after treatment, the frequency of follow-up, and what that should entail, and I told her:

“Based on what we know, checking your labs or doing imaging in the absence of symptoms or a reason don’t help us help you. I don’t recommend testing if you feel well otherwise. How do you feel about that?”

All of a sudden, she appeared uncomfortable:

“Well, my doctors gave me the same advice, but I am not comfortable with surveillance. I don’t want to not get any tests.”

I tried to reassure her, tried to explain my rationale, and that it was based on ASCO guidelines. However, she stopped me before I could get any further.

“I know you are trying to help me, and I understand what you are saying. I have read the guidelines, done my reading. I’ve gone to every site that anyone has told me to read, and I get it — extensive testing doesn’t help women live longer after breast cancer,” she stated.

“But, I need to do more. My gut tells me I should do more. That’s why my prior doctors checked tumor markers for me every three months. That’s why I do a chest x-ray every six months. I can’t just stand by and do nothing. I just can’t.”

After speaking with multiple colleagues, I know this experience is not uncommon. I often wondered why patients took a course of action contrary to what best evidence told us.

On my way to work last week, I heard a story that might shed some light on this. As reported on NPR’s Morning Edition by Shakar Vedantam, a study by Brendan Nyhan and colleagues at Dartmouth evaluated public health messaging around vaccines and whether they helped to address parental attitudes (and reluctance in some) to vaccination. They randomly assigned almost 1,800 patients to four interventions aimed at highlighting the evidence underlying the risks of autism (or lack thereof) and benefits of the measles, mumps, and rubella (MMR) vaccination, and the dangers posed to children who are not vaccinated.

At the end of the study, they found that while interventions reduced misperceptions about the MMR and its link to autism, parents who expressed the least favorable views on vaccination were no more likely to vaccinate. As summarized by Mr. Vedantam, while one would hope that attitudes are shaped by facts, it might be that “beliefs about facts are shaped by attitudes.”

So, what does this study on vaccines have to do with my patient? It suggests that if we are to improve the quality of cancer care, it is not enough to present evidence or even guidelines when we talk to our patients (or to our colleagues for that matter). Instead, as Nyham et al. emphasize in their study, we must start by “measuring beliefs and behavioral intents when assessing health interventions,” and I agree. Only by understanding the ground on which our patients stand can we begin to walk that path with them, and perhaps, point them towards the road perhaps best traveled.

Until then, I will listen to my patient, her values and preferences. Knowing that she has taken best evidence under consideration, I will do what I did here: Proceed with the surveillance testing that both she and I were comfortable with.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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  • David Gelber MD

    It is common for a patient to want to do something or have something done. Most patients go to the doctor because they don;t feel well. They want something done to make them feel better, sometimes even if it is the wrong thing.
    I’ve so many patients over the years who have been told they have a hernia. Usually they present with groin pain. The may or may not have noticed a bulge. I will examine them and, often I cannot detect a hernia. Then I tell them they won;t need surgery. Many are relieved, but just as many are disappointed. After all, they are the ones who are hurting and are hoping for something to make them feel better.
    It is part of human nature to want to take action.

  • Lisa

    My oncologist thinks that testing, in the absence of symptom, is not called for in my case. I have no problem with that because I realize that testing has harms. But I do want the reassurance that my symptoms will be taken seriously. I do not want my symptoms to be dismissed as I am ‘low risk’ i.e. statistically unlikely to have a recurrence. And that has happened to me.

    I don’t know what is better, to have surveillance testing, with the inherent fear that such is part of such testing or to worry about a cough or pain that would not be that worrisome if you were not a cancer patient.

  • SarahJ89

    I think patients have learned over the years that research, standards, recommendations, etc. change with the wind. When it’s your health at stake these “facts” don’t seem nearly as settled as someone on the other side of the desk might think.

  • SarahJ89

    My experience exactly. I go to the doctor to gather information. A prescription is a last resort. What I get is poor or no diagnostic skills and the pushing of prescriptions. Pain pills seem to be very popular in the land of overprescribing. Questions are not welcome. I’ve learned not to bother filling a prescription until I’ve had time to research the medication in question. There is no such thing as informed consent, no understanding that some of us have actually take statistics and know the difference between .02% and 20% chance of something happening. I never fill the pain pill scripts. We still have some left over from four prescriptions ago. We could have filled them and hawked them to our pain pill-addicted neighbour and paid our mortgage several times over. Neither of us ever asked for the prescriptions, they were pushed upon us so I get cranky when doctors complain about “pill seekers.”

    • Gaspere (Gus) Geraci

      It is the ideal nature of the physician-patient interaction to try to understand what the patient wants and for the physician to give that. Regrettably, just as their are patients who want different things, there are physicians who do the same, and when the two clash there are issues.

      • Arby

        I agree. The conversation to work through these issues has to start somewhere though. I’ve learned that I need to work harder in my discussions with my primary care physician.

      • SarahJ89

        Hopefully the patient wants as clear and complete information as possible in order to work towards a mutual agreed upon goal.

        • Gaspere (Gus) Geraci

          We all have our hopes, but just as there are physicians who do not satisfy the needs of the patient, so too, are there patients who do not want information – they want a decision or worse, to close their eyes or something else. That is what makes every single interaction a challenge.

          • SarahJ89

            I have a feeling I’m an outlier. I’m always being told by nurses that I ask questions “no one ever asks.” They seem to find this bemusing. I find their bemusement bemusing since I’m asking things like “How many of these procedures do you do a year?” I do tend to want to know what’s going on with things physiologically, almost on a cellular level, which I’m pretty sure is weird. Molecular biology was my favourite class by far so that’s a curiosity thing.

  • SarahJ89

    “They also seem genuinely confused when I downplay wanting a treatment for a symptom because I am actual looking for an etiology.” This. 1000 times.

  • Peggy Zuckerman

    I echo Wendy’s concern that we will all be determined to be OK or not, according to the guidelines–if we had the recipe applied to us, then nothing else matters. Whereas we patients really need to understand what the typical guidelines are, and see where we fit in those guidelines that were created for a general population, we need to be seen as individuals. Good doctors know this, and may start with the guidelines, but always will refer back to the patient’s needs and responses.

    With the increasing control of treatments and such coming from all directions, there is genuine concern that the individual patient will not receive anything but personalized medicine. We must remember that trials and protocols are derived from the group experience statistically. As a patient, I don’t want to be treated as, nor become one of those “statistics”.

    This approach also endangers the physician who uses his experience to modify a treatment for an individual patient, perhaps to avoid a side effect that endangers the patient. Will he continue to do this, or fall back to the guideline, despite the damage or lack of success. Will he be willing to share this new and successful technique or modification?

    • drdondizon

      Dear Windy53 and Peggy:
      Thank you so much for your posts, again illustrating the mantra that guidelines cannot be mandates- they should be informed by the patient’s goals and preferences. I do believe as clinicians, our job is to provide the best data we have access to, in order to ensure any decision is informed to the best of our patient’s ability- even when that decision is not one we would have made. I believe patient voices are important- perhaps the most important in these discussions. Cost, effectiveness, utilization are all important as well- but the individual’s needs and concerns must never be lost. DSD

  • Gaspere (Gus) Geraci

    A view to money. If every patient paid for what they wanted, rather than their insurer, would the testing change? If the profit of insurers is taken out by a national health system, would you want society to pay for testing that is unnecessary by current guidelines? Drawing the line between patient desire and societal or insurer obligation to pay is a discussion we need to have.

    • Lisa

      I don’t mind the discussion.

      In context of a national health system, with the profit motive is removed, I have no problems with having patients paying for testing that is demmed unnecessary by current guidelines.

      I have asked for several tests that my oncologist said would be unlikely to be covered by insurance. I told him if that were the case, I would pay for them. As it happened, they were covered, and information from the testing changed my treatment.

      • Gaspere (Gus) Geraci

        Glad to hear that. That your testing was covered just displays the difficulty of physicians trying to know what insurance covers- it varies greatly by insurer. My line usually is, I don’t know, but we can ask (Unless I do happen to know.) Any particular physician typically participates with over 50 different plans

        • Lisa

          Insurance is always difficult to deal with. I am lucky that I could afford to pay for testing that might not be covered by insurance. What my oncologist really wanted to know was if the information from the testing would change my thinking about treatment plan, would I consider different options based on the information from the testing. Otherwise, the information would be useless.

  • drdondizon

    To all, I appreciate the lively and respectful discussion below. Often I try to post individually, but time has a way of passing and i am only now able to catch up and get on the site.
    As an oncologist, there is an inherent desire, not to get it “wrong”, and one way not to get it wrong is to following the guidelines- not blindly, but to understand the basis of those guidelines, how strong or weak the evidence is, and then to decide if the data represent “expert consensus” or “findings consistently seen in randomized trials”. As evidence bases go, one I am not inclined to adhere to “religiously”; the other, I am hard pressed not to follow.
    Still- it boils down to a simple and common refrain in patient engaged communities: evidence-based guidelines are not mandates, and as I and others are realizing- the significance, relevance, and importance of the evidence must take into account the values and preferences of each and every person impacted.
    This vaccine messaging study points a way forward- perhaps even a better way to communicate, so clinicians are less likely to get it “wrong”, patients are engaged, and the quality of care improves. Now, we all need to figure out how.
    Thanks so much to all for your postings, and let’s continue the conversation!

  • drdondizon

    Thank you Dike, as always for your comments. It is a constant push and pull. I like to believe as long as it’s done in the best interests of our patients, that will always win. Time will tell if my optimism holds… DSD

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