Help me out here . . .

I'm having a bit of an ethical dilemma, which is causing me writer's block regarding a proposal. Does it matter why people choose to accept a physician's recommendation for treatment? In particular, is it somehow just wrong if they have misconceptions about their disease or the way the treatment works, don't accurately understand all of the risks or how things might go wrong, or are basing their decision on factors that probably ought to be irrelevant? In other words, how strong should be our commitment to the official doctrine of informed consent?

Here's some background. I interviewed a whole lot of people with HIV about their treatment decision making, i.e. whether or not to take antiretroviral drugs (ARVs). A few of them said they just did whatever their doctor told them to do, and they really didn't want to be bothered to learn a whole lot of scientific stuff about HIV and ARVs. That seems fine to me, if that's what they want, I'm not going to tell them they are supposed to be better informed.

Most of them, however, said that they based their decision on information. They often said they attended educational workshops, read magazines, talked with their doctors and health educators, used the Internet, etc., and came to an informed decision. But then as I continued to interview them it turned out that they didn't actually know, well, much of anything. They often didn't even know what classes of drugs they were taking. (At the time, there were three major kinds of ARVs, called nucleoside analogue reverse transcriptase inhibitors, non-nucleoside analogue yadda yadda yaddas, and protease inhibitors. The first two block the action of an enzyme that writes the viral genome into the host cell's DNA, but in different ways; and the latter blocks an enzyme that cuts the long polypeptide products of the viral genome into their constituent proteins.) They didn't know anything about the possible side effects of the drugs, except for side effects they had actually experienced; they often thought that drug resistance was a change in their bodies, rather than an adaptation by the virus; and some of them had no concept of viral replication. One woman said that viral load was a measure of how many babies the mother virus was having.

Now, is this wrong, as long as they were taking the meds and keeping themselves comparatively healthy? Sometimes their doctors had talked with them in metaphoric terms, such as virions being "enemy soldiers" and needing to keep our soldiers -- the ARVs -- in the field so they couldn't take over. That's complete bullshit, of course, but it seemed to work. Of course, it may turn out that people who have a better understanding adhere better in the long run and otherwise do stuff we like such as not risking transmitting the virus or becoming reinfected -- which is bad because they might acquire a drug resistant strain. But if I can't prove that, should anybody care? Scientifically accurate knowledge was available to these folks, but evidently not in a form they could understand, or maybe they didn't really make the effort but felt satisfied with whatever ideas did get into their heads.

Is that malum in se? Should I be given taxpayer money to figure out how common it is, and how to explain things to people better? Or would you rather I be stimulated in some other way, as long as the people are taking their pills?