Sunday, January 11, 2015

Belief vs. "truth": how people often make medical decisions

In a fascinating article in the “Medicine and Society” section of the New England Journal of Medicine, “Beyond belief—how people feel about taking medication for heart disease”[1], Lisa Rosenbaum discusses some of the reasons that people do not take medicines prescribed for them by doctors, really for any condition, not just heart disease. These reasons go beyond the obvious ones of personally experiencing side effects and not being able to afford them; indeed, she starts out discussing the fact that folks don’t use aspirin, a very cheap drug, even after having been diagnosed with coronary heart disease, for which the evidence of benefit is very strong.

Rosenbaum addresses a number of reasons, beginning with simple belief. A friend tells her that “My parents [whom Rosenbaum describes as “brilliant and worldly”] are totally against taking any medication”. Another person she meets, prescribed a “statin” (an anti-cholesterol drug), has no intention of taking it and indeed expresses disdain that is “raw and bitter” (the disdain, not the pill). For him, it is tied to the suffering he saw his sister endure when taking toxic anti-cancer drugs. Her hairdresser suggests another reason: taking medication means acknowledging that you are sick, and people don’t want to acknowledge that. He says that he gives his grandmother her nightly medication by telling her they are vitamins—after all, vitamins are to make you healthier, not treat your sickness.

Rosenbaum tells more stories, relating more reasons, but most come down to a belief, almost to an unchangeable worldview. Some of the issues seem to be semantic. People do not want to take “chemicals”, but will take vitamins. Connotation, and the “frame” that people put around words and concepts (sickness, drugs, natural, chemical, etc.) are very important. Of course, they’re all chemicals, and of course anything (“natural” or produced in a laboratory) that can have a biologic effect (good or bad) can have other effects (good or bad).  People sometimes cite the side effects of drugs even when they haven’t experienced them but have read or heard about them, and credit them with more importance than the beneficial effects. While some people have always made decisions based on creating a parallel to what happened to someone they know, the Internet has probably magnified the universe of people they “know” and stories that they “hear”.

Perhaps the scariest reason Rosenbaum points out is that the success of medical treatment has led people to minimize, in some cases,  the seriousness of the disease. As a cardiologist, she points to acute myocardial infarction (heart attack), which used to require 4-6 weeks of hospitalization, and now often has people out of the hospital in 24 hours. She talks to a person who contrasts it to the flu, which “can knock you down for days or a week or two, [while]the heart attack, once they do the thing, you’re in good shape.” And yet, “once they do the thing”, whatever it is, stents or clot lysing (presumably not yet bypass, which does require a longer hospitalization) and you feel better, you still have the disease; only the use of certain drugs along with diet and lifestyle changes can modify the trajectory of the disease. But the latter are hard, and maybe we don’t want to take drugs. Because, you know, we are feeling better.

I admit to initially feeling anger, hostility, as I read the “reasons” that these people would not take medicine, feeling that they were stupid. I don’t mean that I was angry that they don’t take medicine; this is their decision. In addition, there are lots of important reasons to be wary of taking medicines that go beyond personal experience with side effects. Not the least of these is the fact that they are heavily marketed by drug manufacturers, who are in business solely to make a profit, and regularly invent new “diseases” that “need” treatment in order to market their drugs and make money. In addition, “indication creep” (which I have discussed before, The cost of health care: Prevention and Indication “creep”, drugs, and the Sanders plan, June 25, 2011, particularly citing a piece by  Djulbegovic and Paul, “From efficacy to effectiveness in the face of uncertainty: indication creep and prevention creep”).[2] This means that a drug, which is found to be effective and relatively safe for a certain condition, at a certain severity level, in certain people, starts to be used by physicians (often encouraged by the manufacturers) for other people with less severe levels of conditions, and sometimes for other indications for which efficacy has not been proven. For example, starting drugs for cholesterol at levels below which treatment has been shown to reduce mortality, or putting younger (or older) people on treatments only shown to benefit older (or younger) people, or men or women.

Indeed, this appeals to another system of beliefs common in people (including doctors), that if a little is good, more is better; if reducing cholesterol in people whose level is above “X” is good, why not in people whose cholesterol is a little below “X”; if getting your average blood sugar below “Y” is good, why not a little lower still; if aspirin is good prevention and reduces death in men who have coronary heart disease, why not use it in men who don’t but otherwise look a lot like men who do? This sort of belief may lead to behavior opposite of that described by Rosenbaum (that is, taking medication when it is not of value rather than not taking medication that is likely to be of value) but it stems from same root—making decisions based on beliefs rather than evidence. And it is not uncommon to see both behaviors manifested in the same people: someone who would “never” take “artificial chemicals” (regulated drugs) into their body who ingests large amounts of unregulated chemicals (labeled as “natural”). The apparent contradiction is non-rational to me but makes sense to them.

I often—maybe usually—agree with those who say “less is better”, such as Ezekiel Emanuel in his New York Times op-ed “Skip your annual physical”.[3] But I hope that I do this when, as in the case of the annual physical, the evidence does not demonstrate benefit, and the cost is high, as it is for many heavily-marketed drugs. And, of course, my anger subsides as I realize that I often feel the same things, and maybe even sometimes act on them. I don’t want to be a sick person, certainly not one with a chronic disease (it’s bad enough to have the flu!) and taking a medicine for a condition labels me as such. I don’t want to take medicines just because they “might” help (prescription or over-the-counter, made by traditional pharmaceutical manufacturers or “natural” companies) if there is not good evidence, and I don’t want to experience unpleasant side effects. But I do take the medicines that have been shown to benefit people like me, with the same or similar risk factors, and even put up with some side effects (e.g., mild myopathy from the statin).

I am not going to change anyone’s worldview, no more than Dr. Rosenbaum is likely to change that of the “brilliant and worldly” friends of her parents. And I am certainly not going to become an advocate for treating for the sake of treatment, or being a flak for drug companies. But if there is strong evidence that taking a drug (in the lowest effective dose) for a condition that I in fact have (denial or not) is likely to have a “patient-important” (meaning lower risk of premature death or better quality of life) outcome, and I personally do not experience serious side effects, I will take the drug.

The key issue here is not making decisions to do, or not do something (have a physical or take a drug) because of a general belief that such things are good or bad for you, but rather to evaluate the evidence of how it might benefit or harm you, and to make a decision that balances these filtered through your own value system, how much you value the potential benefit or harm that might come.

To me, this is a rational approach.

[1] Rosenbaum L, “Beyond belief—how people feel about taking medications for heart disease”, NEJM 8 Jan 2015;372(2):183-87
[2] Djulbegovic B, Paul A., From efficacy to effectiveness in the face of uncertainty: indication creep and prevention creep”, JAMA. 2011 May 18;305(19):2005-6..
[3] Emanuel E, “Skip your annual physical”, New York Times, January 9, 2015.

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