Patients who refuse their physicians’ advice

In the North American hemisphere flu season is here. Influenza, as most people know, is a serious respiratory infection that can be life-threatening in the very young and the very old. Some strains, as we’ve all heard about in the press in the past, are more deadly than others and may threaten even the strong. Luckily, however, we’ve developed a vaccine. It doesn’t guarantee you won’t get the flu: the influenza virus mutates rapidly and authorities must make their best guess about how to prepare a new vaccine every year, and sometimes they miss. Even when they get it right, you can still get the flu; you’ll just likely have milder symptoms and a shorter course.

While no medical intervention is 100% safe, the flu shot (for those not allergic to eggs) is pretty close. Yet every season, I never fail to have some of my patients refuse it. The most common reason I hear is, “I’ve never had the flu.” To this, I invariably say something like, “Just because you haven’t had a heart attack yet doesn’t mean you shouldn’t exercise.” I’d say roughly about half of my patients change their minds and decide to get the flu shot after I talk with them about it.

Over the years I’ve had numerous patients refuse my advice. It always bothers me — not because I like to think I’m right and my ego gets bruised, but because I genuinely believe my advice is in the best interest of my patients and I want them to do well. But over the years I’ve come to see that there are really two basic reasons patients refuse my advice, and that my response to them should be different.

The first is demonstrated by the influenza example above. There really are no good reasons to refuse a flu shot. It’s like buying cheap but good insurance: if you actually get sick or hurt, you’ll really wish you’d bought it. When you calculate the odds of being harmed by the flu shot and compare them to the odds of needing it and being helped by it, there’s no question that just about everyone should get it. It’s really that black-and-white.

So why do people refuse it? The reasons, of course, vary, but inevitably it comes down to a fascinating principle of psychology: we believe stories more than we believe evidence. It may be a story someone else told us about what happened to them when they got their flu shot, or a story we told ourselves when we got one in the past, perhaps that it made us sick (despite protests to the contrary, the flu shot cannot make you sick; just because one event follows another doesn’t mean the first event caused the second, as many people erroneously assume when they get a viral infection following a flu shot). Studies suggest this is because we find stories so much easier to remember — so much more cognitively accessible — than evidence. Even stories we tell ourselves based on no evidence.

I’ve evolved a general approach to patients who refuse my suggestions that tends to work pretty well: I ask them why they’re refusing. Then I address their concerns and explain the reasons why I’m recommending what I am, being as careful as I can to explain in as unbiased a way as I can what I think the consequences of their refusal are likely to be. I do this once. If they still refuse, then I accept their refusal without judgment and move on. Even when people make what I consider to be foolish choices, rarely does it pay to browbeat them into making the choice I want them to. Even if my reasoning is better than theirs, I have no absolute guarantee that the choice I want them to make will turn out to be the best (only a better — admittedly sometimes far better — statistical likelihood that it will).

I also respect my patients’ right to choose for themselves. If I’ve done my best to make someone understand that they’re about to jump off a metaphorical cliff and they still want to, I have no choice, I feel, but to allow them to do so (given that their choice isn’t in some way the result of a mental illness).

The second reason people refuse my advice is more subtle. Many medical choices aren’t, of course, as black-and-white as whether or not to get a flu shot. Even when the best choice for a patient seems relatively clear to me, I am presuming my patient and I share the same values. And this is clearly not always the case. Should we give chemotherapy if the side effects are likely to be severe and the expected increased length of life is only on the order of months? Should we give enough morphine to a terminal cancer patient to control her pain even if it means dulling her mind? Should the overweight diabetic give up sweets even though he derives enormous pleasure from having dessert just once a week?

To you reading this, the answers to these questions may be obvious. But I would submit that your answers will reflect your values and that not all people value the same thing. Further, what a person thinks he values may turn out to be quite different from what he actually does when he’s faced with actually having to make a choice.

As Daniel Gilbert argues in his book Stumbling on Happiness, we’re all far worse at predicting how we’ll feel and behave in the future than we think.

In the second scenario then, my primary aim is to help my patients understand themselves what they value and to guide them through medical decision making with their values — not mine — in mind. And in such cases, when someone makes a choice I wouldn’t make myself, as long as they feel it’s the right choice for them and I’m convinced I’ve clearly explained — and they’ve understood — the likely consequences, I’m able to support their decision without any reservation. In fact, in such cases, as far as I’m concerned, doctor and patient have both done their very best.

Alex Lickerman is an internal medicine physician who blogs at Happiness in this World.  He is the author of The Undefeated Mind: On the Science of Constructing an Indestructible Self.

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  • amanda cramer

    I agree, as a healthcare worker, it can be really frustrating when a patient does not fully listen to your advice let alone follow it. Your quote “We believe stories, more than we believe evidence” really does ring true. How do we go about changing this as a society? In my personal experiences, there are a great deal of patients that refuse the appropriate treatment due to “When my sister took that medication…..” or “My neighbor’s husband…” We can be so blinded by stories that have been passed along to us (usually stories that have been exaggerated or changed over the passing listeners) rather than to just sit and actively listen and analyze the information/advice that is given and make our OWN judgement.

    • rbthe4th2

      What about the patients who presented the medical literature “evidence” and it was ignored? I don’t go on joeblow.com websites, I go to PubMed, MedLine and UpToDate or the like. That’s all I ever do. Which makes me wonder about the attitudes I get when I ask for what the justification is for X, when I’ve researched in those areas and what I’m speaking about is in line for that.

      • Daniel

        “Doctor” comes from the Latin word for “teacher”. It is appropriate for patients to ask for justification, and it is your responsibility to explain.

        • rbthe4th2

          Most unfortunately Daniel, I am the one who ends up teaching. The docs are the ones who don’t listen and obviously, research. I don’t care that they do, but if you don’t listen to PubMed/Medline, your own journals, where do you get your info? That’s what scares me. I don’t care who comes up with the right answer, as long as Medical Team Randy does.

  • Daniel

    It’s not a coincidence when people feel “sick” after receiving a vaccine because vaccines are intended to provoke the immune system. In its fight against the flu virus, our immune system does collateral damage -or something-, which makes people feel miserable and can be life threatening for some. However the “ill” feeling people have from the vaccine will be much milder than an actual case of flu. They also won’t have the pulmonary symptoms because because the vaccine is injected,

    Physicians who really want their patients to get the flu vaccine might consider changing their approach to the vaccine. How about… During intake, have a syringe already prepared. Then have the nurse tell the patient, “We’re giving away *free* flu vaccines this season. Would you like one today?” Who’s going to refuse *free*? And if they do, the physician has a chance to ask them about it during the actual patient encounter.

    • T H

      That would be a lie. They are not free.

    • https://www.facebook.com/arobert6 Alice Robertson

      People value discounts moreso than free. Cochrane Collaboration has
      done us a great service in showing the flu shot is “useless”. Check out
      their informative piece on how research should be done …it covers the
      snow job we got on statins and the flu shot (titled Eminence v
      Evidence).

      Then try to read the most recent BMJ interviewing Dr. Thomas Marciniak the “Lone Wolf” who works for Mayo
      and
      is an FDA Investigator….proclaiming, “The clinical trial system
      is broken” …continuing, “Drug companies have turned into marketing
      machines. They’ve kind of lost sight of the fact that they’re actually
      doing something which involves your health. You’ve got to takeaway the
      key components of the trials from drug companies.”

      When the system is fixed with complete transparency I think patients may have more trust and acquiescence. Until then….

  • Thomas D Guastavino

    Dont forget the issue of secondary gain, a problem that is much bigger then most realize

  • ninguem

    Sorry, I just can’t get real excited about people who decline flu vaccines.

    You don’t want it, fine. I think the flu vaccine is a good idea, I get it myself, I give it to my wife and children.

    If someone else doesn’t want it, I say my peace…..see above sentence…..but to each his own. I document accordingly and move on.

  • SarahJ89

    Bingo.

  • Physicaltherapize

    I understand that it’s normal for people to feel ill after a flu shot, and that this feeling is much milder than that of a full-blown flu. However, I refuse the flu shot because I don’t just feel a little ill, I always get sick almost immediately following a flu shot, last time

    • Daniel

      Perhaps you are more sensitive to the adjuvants in the vaccine than ‘average’. Perhaps you could try the live vaccine before you write off the flu vaccine for good.

  • T H

    No, they eventually pay in some way shape or form. To pretend otherwise is to add to the current health care finance misperceptions and mess.

    • Daniel

      The flu vaccine is not so costly that physicians cannot provide it as
      part of normal office visits during flu season, without increasing their
      fees.

      What about the cost of not getting the vaccine?

      • T H

        Most clinics run on razor thin margins – the vaccine, the needles, the syringes, the alcohol wipes, the bandaid afterwards, the hourly rate of the RN dispensing the vaccine: it all adds up. Many pediatricians have stopped giving vaccines due to these costs and tell their parents to go to the public health department… which charges $25/injection.

  • T H

    Daniel, it’s obvious that you have little direct experience with running a clinic. Even docs who do not run clinics recognize the importance of vaccines. I can’t do much of anything about DC politics, but that doesn’t keep my from writing my fool senator.

  • querywoman

    The ADA dropped its restrictions again sugar in 1994, yet the stereotype persists that sugar is heroin for diabetics. So an overweight diabetic has a sugar dessert once a week! So what?
    Who put the food police in charge of everything?
    I am considered a truly compliant diabetic. My current endo adores me. Yes, I eat real cane sugar. I try to limit the corn sugar.
    Flu shots are a touchy issue for me. I have an egg allergy and had ONE flu shot once and it blew up like a baseball.
    Last year I apparently caught a flu that went into pneumonia.
    However, I never, ever want another flu shot, even with the supposedly new eggless vaccine.