One of the biggest frustrations for a doctor is when a patient refuses to take science-based medical advice. We would like to believe that giving a patient accurate information will lead him to make good decisions that will improve his health or save his life. But that’s not how it works. Patients reject life-saving surgery and chemotherapy, patients on essential medications are non-compliant, parents reject vaccines for their children…what are these people thinking? Why would anyone in their right mind knowingly reject a treatment that has been proven to increase their chances for survival and health? What could their reasons possibly be?
This ties into a subject we have debated over and over: why do people choose alternative medicine? Many reasons have been suggested: cost and accessibility, the need for control, dissatisfaction with mainstream medicine, the peer pressure of a popular fad, “belonging” to a group of like-minded people, a need for answers, autonomy, health freedom, ideology, rebellion against authority, a need for hope even if it is false hope, giving more importance to stories than to studies, the post hoc ergo propter hoc fallacy, scientific illiteracy, misinformation, superstition, magical thinking…the list goes on. Studies have been done, but we can’t be sure the reasons people give to researchers are the real reasons. There is a problem with the search for reasons: these decisions are not made on the basis of reason. Physician Lisa Rosenbaum has written a beautiful essay in The New England Journal of Medicine entitled “Beyond Belief — How People Feel about Taking Medications for Heart Disease“, that sheds a penetrating light on what is really going on. It made me think of the subject in a whole new way.
To put a human face on this issue with an example, let me tell you about a memorable patient I once had (I’ll protect his privacy and call him Flavio). It was the mid-1970s. I was an Air Force doctor stationed at Torrejón AFB just outside Madrid, Spain; Flavio was an Italian who had chosen to spend his golden years in Spain. Somehow (I never learned his story) after a childhood in Italy he had ended up serving 20+ years in the American military and was authorized medical care at our hospital as a military retiree. I didn’t think of it until just now, but he was following in a time-honored two-millennia-long tradition – Roman soldiers used to retire to Spain. In fact, the city of Mérida in western Spain was founded in 25 BC by the Emperor Augustus as a colony for old soldiers discharged from his army; the original name was Emerita Augusta, meaning Augustus’ veterans. Flavio still had a bit of an Italian accent, and he was a delightful, charming, old-school gentleman. It was a pleasure to take care of him; he was always pleasant, courteous, and grateful for every little thing I did for him. Flavio had a bad case of gout, with big lumps on his elbows and elsewhere that were easily recognizable as tophi, deposits of uric acid around the joints that are a pathognomonic sign of gout. I put him on medication; his pain resolved and the lumps went away. Since the lumps were no longer bothering him, he stopped the medication. Predictably, the lumps came back. I put him back on the medication and emphasized that he needed to stay on it. The lumps shrank; he stopped the medication again; the lumps came back; he came back to see me. This sequence of events repeated itself over and over. My explanations and exhortations had no impact whatsoever. He had seen for himself that the medication worked; he had seen the lumps come back when he stopped taking it; he had heard and understood my explanation of how it worked and why he needed to keep taking it; he wasn’t stupid; he wanted to be pain-free and lump-free. But he kept stopping the medication. I simply couldn’t understand. It puzzles me to this day.
The Needlephobe’s story
And then there was my encounter with a man who refused to get a flu shot. I asked him why, and he gave me reason after reason that I quickly shot down with the facts. Finally his excuses were exhausted. He had to agree that there was no reason not to get the flu shot, but he still wasn’t going to get one because he just didn’t like needles. People reason after the fact; they decide and then they look for reasons to support that decision. If they don’t really understand their own decision process, how can they hope to explain it to us?
Rosenbaum is a cardiologist. After a heart attack, only about half of patients are compliant with taking medications to prevent a recurrence. Instead of just looking for reasons, she set out to find out how people feel about taking medications for heart disease. She learned that affective responses leave people far more sensitive to possibility than to probability, and that people who have had drug side effects tend to have an increased perception of drug risks and a decreased perception of their benefits. Taking medication reminds people that they are sick; they would rather deny their problems and think of themselves as healthy. They may prefer “natural” remedies to pharmaceuticals on principle. After the wake-up call of a heart attack they adopt a healthier lifestyle and their new sense of well-being may convince them they don’t need pills. After short hospitalizations for heart attacks, sometimes as little as 24 hours, today’s patients are not as impressed that they have a serious problem as earlier patients were after 4-6 weeks of bed rest, sometimes complicated by bed sores, arrhythmias, and depression. Rehabilitation programs create a supportive environment where people can accept their disease and also feel healthy, but only 14-35% of patients participate in those programs. The benefits of medications aren’t obvious: if patients don’t “feel” better, they may believe the medications aren’t doing anything. Framing helps: adherence may be improved if patients think of the medications as “keeping the pipes open.” Fear of chronic illness sometimes trumps fear of death. Some people feel they should be able to completely control their own problems with lifestyle changes; they see medications as a sign of weakness, a cop-out.
Her final paragraph is a gem:
It’s our job to help patients live as long as possible free of complications of cardiovascular disease. Although most patients share that goal, we don’t always see the same pathways to get there. I want to believe that if patients knew what I know, they would take their medicine. What I’ve learned is that if I felt what they feel, I’d understand why they don’t.
Those last words should be engraved in stone. Humans are not like Mr. Spock on Star Trek: they don’t make healthcare decisions based on cold reason. Instead of asking “why?” we would do better to ask “how do you feel?” We would like to believe that if people only knew what we know, they would make the same decisions we would. But if we felt what they feel, we’d understand why they don’t.