When Patients Refuse Their Doctors’ Advice
In the North American hemisphere, flu season is fast approaching. Influenza, as most people know, is a serious respiratory infection that can be life-threatening in the very young, the very old, and the very sick. 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 get it wrong. And even when they get it right, you can still get the flu; you’ll just likely have milder symptoms, a shorter course, and a lower risk of complications.
While no medical intervention is 100% safe, the flu shot is pretty close. Yet every season, I never fail to have many 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 and tell them the flu shot saves lives.
Over the years I’ve had numerous patients refuse my advice. It always bothers me—not because I like to be 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 widespread belief 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 value 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 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.
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Hi, Alex,
Great post as usual. In Australia recently, we had a well-regarded TV program present a detailed documentary questioning the high rate of prescribing statins and the link between cholesterol and heart disease. I’m wondering whether you could comment on this.
Your patient-centered approach is, in my opinion, as professional and ethical as can be. My own dilemma in the field of immunization, especially one so innocuous as the flu shot, is the effect on others. The folk with young children or immune-fragile close contacts, or elderly relatives who refuse the shot, are putting others at risk. I add that into the discussion, but also do not want to force issues via guilt and shame, as tempting as it may be at the moment. The lack of repsonsibility to the whole rather than the self alone is troubling. I know it is confronted by the use of authority requiring groups such as EMRs to be immunized or jobless. Free individual choice may not always be the best way.
I enjoy this column. However, I am afraid I just don’t think doctors are necessarily qualified to always be right about every medical issue. I would support the question/posting of Sylvia from Australia. I live in the UK where there have been proposals to give statins to everyone over 50 despite numerous side effects. Similarly, there have been many side effects from vaccination and many drugs which the medical profession chooses to ignore. Science is not as simple and clear as many would pretend and humans are individuals with their own unique biology and response to medication. The latter is never taken into account, just a sledge hammer approach.
As for “free individual choice may not always be the best way,” as written by a commenter above, yeah sure, go see the latest Hunger Games or read about Hitler, Mao, Stalin and other dictators. That’s what they thought and what great regimes they created “for the greater good!”
Hi Alex, thank you for posting. I enjoy your blog.
I disagree about flu vaccines. Recent Cochrane reviews show thin evidence for prevention of flu by the vaccine in healthy people. Also, many studies are industry sponsored. Government studies show less benefit of vaccination. There has been no reasonable evidence for immunization of health care workers to prevent influenza in those working with patients aged 60 years or older (Cochrane Review: Thomas et al, 2013).
On a personal level, and a nice illustration of your point of how stories are more memorable than evidence, last week a patient was admitted to the ward I’m working on with Guillain-Barre Syndrome. He had no history of fever, cough or diarrhea, and had been screened for infective causes such as Campylobacter and Mycoplasma species. He did however have a flu vaccine administered by his primary care doctor a week before developing weakness. The case has been reported to the relevant medicines safety authorities, as the only precipitant left after other causes were ruled out was his vaccination. From my own reading it seems to occur in one in a million cases of vaccination.
Hi Alex,
I’m on the side that heartily disagree about flu shots. I’m going on 58; my husband is 63. We haven’t gotten flu shots in more than a decade. We eat a diet with lots of plant foods, very little meat, limited dairy (which I intend to give up entirely in 2014) and research medical advice before pursuing treatments—on those rare occasions when we need any.
I read “What You Doctor May Not tell You About Menopause” by John Lee, MD, many years ago, and followed his advice on hormone supplements before, during and after menopause. That was one of my first forays into “alternative” (that is, to Big Pharma) treatments. I had very few of the typical symptoms of menopause, as a result. In any case, I had NO intention of taking a hormone supplement made with pregnant mares’ urine. 🙁
The problem we have with medical care—such as it is—in the US today, starts with medical school, where future doctors do not learn nearly enough about the effects of diet and lifestyle on human beings’ health. It continues with a government that subsidizes bad food practices (e.g., dairy & meat market growth; GMO proliferation), inadequate FDA oversight of our food at all stages of production, and a failure to put any limits whatsoever on food manufacturers’ promotion of non-nutritional food-like products that increase the obesity epidemic. Finally, there are the patients—who chose to, as Eric Cartman (of South Park fame) would say, “I do what I want!”—and who then want miracle drugs to take to make it all better when they’ve made themselves sick after years of eating poorly and failing to stay fit.
No. There is AMPLE evidence that the flu vaccine is another Big Pharma scam. Milo’s In Charge, and we’re all invested in maintaining a sick populace.
When my doctor suggested that getting the shot would put others at less risk I got the shot…however, I do feel that really concentrating on our health and sickness can get us through the flu without the shot.
https://buzz.naturalnews.com/001080-flu_vaccine-life_support-Utah_teenager.html
While I regularly take the seasonal flu vaccine the reason for my ambivalence in doing so is this: Thimerosal, a preservative used in the vaccine, is a potent neurotoxin. So potent in fact that it is not allowed to be used in vaccines given to children. I am therefore presented with a choice between the possibility of preventing an infection with influenza and the certainty of being injected with a neurotoxin. This is not so clear a choice as it is being made out to be. It is easy to determine if a person has the flu but relatively difficult to determine if that person has incurred a slight cognitive deficit from exposure to a neurotoxin. The obvious advantage of flu prevention may have been over-weighted in the decision to administer this vaccine widely.
Alex,
I think you might find this interesting reading: If you could give young oncologists advice, what would it be?
https://lisabadams.com/2013/11/27/give-young-oncologists-advice
For the past fourteen years, I have received the flu vaccine, even though I did have the flu eight or so years ago. Last year, however, I had an adverse reaction to the flu vaccine which basically incapacitated me for nearly a year. I called and visited my primary caretaker who kept assuring me there was no antidote, though I begged for one. All routine tests were negative. My symptoms included extreme fatigue, generalized weakness upon exertion and SAD (I live in South Florida). I routinely slept for twelve or more hours a night. My cardiovascular fitness decreased since I was unable to fully work out. I was unable to practice yoga daily. I gained weight. I patiently waited. During the summer, I was able to fully rest (I am a teacher) and I seem to have recovered. Upon reflection, I have come to realize that I had suffered minor, less debilitating adverse reactions to the flu vaccine for several years. Needless to say, I will never receive another flu vaccine. As it turns out, last year’s flu vaccine wasn’t all that effective anyway, especially in the age groups most at risk. Yes, I have faith in my doctors but I am also proactive and do not blindly accept what my doctors suggest. Not all doctors are as thoughtful and intelligent as you are, Alex.
I took an immunology course about 11 years ago. One day the professor mentioned the phenomenon of “original antigenic sin.” What was discoverd many years ago was that the body tends to rely on immunological memory obtained from the first exposure to an influenza strain when responding to another related strain. The body in effect thinks, “Oh, I’ve seen this flu before, I’ll respond in the same way I did before instead of making a new type of antibody specifically for the current strain I’m being exposed to.” It is sort of like an army fighting the last war instead of the current one.
I asked the professor, “Why do we get annual flu shots then?” He replied, “That is a very good question.”
This is not a totally settled issue (except in the minds of vaccine manufacturers.) In fact a reduced immune response to pandemic H1N1 was found in persons who had recently been vaccinated for a related seasonal flu strain.
It is a complicated issue and, having said all of the above, I did get my flu shot a few months ago. (Turns out getting a flu shot one year and then not getting one the next year MAY make you sicker if you get the flu the second year than if you had never been vaccinated. Then again, it MAY not. Depends on how close the viruses are to the vaccine you received.)
Interesting to hear a doctor’s point of view on this subject. I’m teetering on your reason number 2, or at least something like it because in my mind, it’s less to do with sharing or not sharing the same values but rather, just coming from different perspectives, one as the healer and one as the sufferer.
If you have a chronic disease that needs to be managed for the rest of your life (or until there’s a cure), there does come a point where, as the person with the chronic condition, you feel like everyone has been driving the bus for you, whether the driver be your doctor (or multiple doctors, none of whom agree on the route to take), your medications, your own betraying body, etc., that all you want to do is be the driver of that bus for a while. You get so utterly tired of being poked, prodded, tested and medicated and on top of that feeling scared, anxious, and confused that digging in your heels feels like a reasonable alternative—saying, ok, enough for now. It’s my body and I decide what we are doing next.
I having ulcerative colitis, something I’ve been dealing with for years. My disease is in clinical remission since 2009 through immunosuppressant medications, but for the last 6 years, I’ve had and continue to have these ongoing complications from the UC, like I had two blood clotting events, and now I have UC related arthritis and there’s concern over my liver so I have an ultrasound this week, plus I have low grade dysplasia that may require my entire colon be removed despite my remission so I have colonoscopies every 6 months to monitor. You forge ahead and carry on and convince yourself that you’re doing all this to be as well as you can, taking time, money and patience to accomplish this, but as a patient, well, wait. . . as a person, you do start to contemplate “is all that I am, just an illness to be managed?” Because it does start to feel like you’re just one big science experiment, almost like a live cadaver. It wears you down and really affects your self perception. So sometimes, for your own sanity, you push back hard at that notion, which sometimes equates rejecting your doc’s recommendations because that seems to just stop the insanity for you for a second.
Really, it comes down to this: You want to remember what it’s like to feel normal and have control, even if it’s just perceived control. How you get there is sometimes throwing everyone off that bus and taking the wheel yourself, even if it means there’s a chance you may crash into a guard rail. It’s worth the risk if it means restoring a sense of peace, something that went out the window the minute you were diagnosed.
Hi Alex,
I’ve just found this interesting (and informative) site of yours and stumbled across this debate about flu vaccines.
You and your readers might be interested to read what happened to a little West Australian girl named Saba Button after she was given a flu vaccine (a few years ago). Just do a search with Saba Button in the title. She was about 11 months old when she had the injection. I’m sure she would have been dead by now if it hadn’t been for her parent’s bedside vigil and the support of their friends and community. (As it is…she will always need around the clock care now.) I would have been devastated if it’d happened to a child of mine and I really feel for her whole family.
My 86 y.o. mother used to be given a shot of flu vaccine yearly…but always seemed to be sick for weeks afterwards. Her GP used to tell her that it was just as well she’d had the vaccine otherwise she’d have been “really” ill. Well, she finally decided to defy her doctor and not get the flu jabs and for the last 5 years has neither had (nor had the symptoms of) a “flu” since. Coincidence??
Also, I guess these are just a couple of “stories” but with regard people trusting “stories” over “evidence”—well I’m afraid that the general populace (at least in Australia) are suspicious of “evidence” especially when there’s a substantial profit margin at the end of it…for someone or some company. We’ll believe the “evidence” when we hear the “stories” that no harm has been done by the “cure” and the people we trust to tell us that are our family, friends and other community members.
For our family… we swear by a mix of vitamin c, echinacea and zinc at the first symptoms of a cold or flu. That and good old chicken soup with garlic and lemon. (Works for us.)