Whaddya Know?

If you're like most people, not much, as it turns out, when it comes to your own diagnoses and the pills you take. If that sounds a little harsh, I'm sorry, but if there's one thing I do know after years of studying people's experience as patients it's that you have to assume they don't know what medications they are taking, why they take them, what pills do what; and the way they understand whatever diseases the doctors have told them they have is not very much like the way the doctors understand them.

Nowadays, more and more people are taking more and more pills. People with kidney disease, diabetes, and other unfortunately pretty common ailments often have 8 or 12 or even more prescriptions. I'll let you in on a little secret: hardly anybody with that many prescriptions actually takes them all consistently. (Actually, at least half the people with only a few prescriptions don't take them either.) People make their own decisions about which ones are important, or they decide that one or another is responsible for a symptom they conclude is a side effect. So they stop taking some of the meds, or take them some of the time. One guy I know of even has rotation system. But if you ask them which pills do what, they probably can't tell you, or their answer won't correspond to what the doctor thinks.

Similarly, if you ask somebody who has been diagnosed with diabetes, or HIV, or even hypertension to explain what the disease is -- what causes it, how the disease process works, how the treatment works, what the long-term toll is on the body -- it's unlikely that they will give you a coherent story, and if they do, it probably won't resemble what's in the medical textbooks.

Sometimes there are very consistent patterns to this disconnect. For example, HIV medications lose effectiveness over time, particularly if people don't take them consistently, because the virus evolves resistance. The process is similar in general to the development of bacterial resistance to antibiotics, although viruses and bacteria reproduce in a totally different way. However, the vast majority of people with HIV interpret drug resistance as a change in their bodies, not the virus. Often they simultaneously hold a contradictory idea, that the virus is intelligent and it can "figure out" how to get around the drugs, but the idea that their body becomes "immune" to the drugs is usually the first resort.

So, I'm curious as to how people's ideas about their various diseases are related to their self-care behavior and their general coping. Maybe it doesn't really matter what story you tell yourself, as long as it works for you. Or maybe having understanding that is more like your doctor's understanding helps you work together with your doctor more effectively to stay healthier. It actually isn't obvious and it probably depends on the specifics of the discordance or concordance of the beliefs, and the kinds of decision rules that people use, and how they interact with each other. But, outcomes aside, there is an ethical question. Shouldn't people be able to make well-informed choices? What constitutes adequate information, and what is the physician's responsibility to assure that people have it?

So, these are all questions that I'm working on.