Autonomy and Beneficence

I'm going to take a brief break from the ongoing series about Life On Earth and get back to the main business here. One reason is that my next assignment -- about the origin of life -- turned out to be a tough one when I actually tried to do it as a blog post. I'm working on it, it may have to be split into two or more pieces.

Meanwhile, I want to talk a bit about the question of the autonomy of the person as patient. Until the mid 20th Century, the generally accepted relationship between physicians and patients in the West was of a nature now characterized as "benevolent paternalism." The expertise and wisdom to choose the appropriate treatment of disease resided entirely with the physician. The patient's role was to trust the physician and to follow "doctor's orders" --a condition analogous to childish dependency.

That's all changed. Now we are expected to have a partnership with our doctors. They have biomedical expertise, which they are supposed to share with us, so that we can make informed choices about our own treatment. They are supposed to tell us the risks and benefits of proposed treatments, of alternatives, and of doing nothing. Then, based on our tolerance for risk, aversion to disease symptoms or drug side effects, lifestyle, etc., we're supposed to decide what is best for us.

Right. As in "Riiiiiiiiiight." Research shows that in routine prescribing situations, nothing like that happens. Typically, the doctor says, "Here's a prescription, take this." In the case of serious or chronic diseases, there is typically more discussion, but how much do people really understand of the considerations that go into the physician's recommendations? And how do people really make decisions about their own treatment in complicated and serious situations?

I started the whole thread on evolution precisely because of this problem. I interviewed people living with HIV about their treatment decision making,* and it turns out that most of them thought of themselves as making their own decisions, but they had very little understanding of the biomedical reasoning that should have been important in making those decisions.

Well, the funders for this study weren't the NIH or another typical research sponsor that doesn't get involved in the findings and publications. It was funded by a state agency whose director got mad at me for pointing out, in my report, that some of the ideas respondents had were not exactly scientifically sound. For example, one woman said that she hadn't been able to understand the concept of viral load until some guy told her that "it's like how many babies the mother virus is having. Now I feel like I understand it." Another respondent told me that she was holding off on taking antiretrovirals because she had liver damage, but she was taking one AZT per day so her body would be "ready" when it came to start a full regimen. (That is actually the absolutely worst thing she could be doing -- and her doctor is evidently a quack.) Another said she had to stay away from the kitty litter because of "toxic gases." Actually, her doctor had probably warned her about toxoplasmosis, a fungal infection.

Supposedly, according to the Comish, it is against the "parameters" of qualitative research to say that the respondent is "wrong," and it was "punitive" for me to point out that these ideas were unscientific. Here is part of my response:

HIV infection is a biomedically defined condition. HIV, and all viruses, are entities known only to biomedical science, which are understood and defined only in biomedical terms. The only reason anyone believes such things as viruses exist is because scientists say they do. Until this century, no-one had ever heard of a virus. The only reason our respondents believed themselves to be HIV infected was because they have been told so by someone reporting the results of a laboratory test, and all of our respondents had had that information confirmed by one or more licensed allopathic medical doctors. Homeopaths, naturopaths, and Foucaultian philosophers do not make diagnoses of HIV infection.

Furthermore, the antiretroviral treatments which most of our respondents were taking . . . are legally obtained only by a prescription from a licensed medical doctor. They were developed in scientific laboratories using biomedical theories of viral replication and disease processes. In prescribing them, physicians rely on data and consensus guidelines developed by other physicians and biomedical researchers on the basis of biomedical scientific theories. There are people who do not believe that HIV is the cause of AIDS, and who do not believe that these drugs are effective or work in the way their manufacturers claim they do -- but these people do not prescribe such drugs or advocate their use. . . .

The information and understanding which our respondents were attempting to gain for themselves was scientific understanding. They were not operating within alternative belief systems -- they were trying to understand the scientific theories of HIV disease and treatments. These were the terms which they had accepted, not terms which I imposed on them. Since there is no justification I know of for taking protease inhibitors or reverse transcriptase inhibitors other than biomedical knowledge (in the sociological sense in which other "knowledges" are also possible), then it follows that if people are to make an informed, autonomous decision about taking these particular medications, they need information that is consistent with biomedical information. If they do not have it, then it is appropriate to point that out. There is nothing judgmental or "punitive" about doing so.

Here is the problem though. In the real world, it is still the case that most people don't have that information. But doctors are pretty well convinced that they know what is best for their patients. Therefore, doctors as a rule don't fully disclose information about side effects to patients, or present the arguments against the treatments the doctors prefer. They fear, with considerable justification, that if they do so, the patients will choose not to follow the course the doctor has decided upon -- not because they are truly making an informed choice, but because they will misinterpret or misapply the little bit of information they get.

According to standard doctrine of medical ethics, doctors have four obligations to their patients, headlined non-malificence, beneficence, autonomy, and respect for persons. Do no harm, do good, allow patients to control their own lives and bodies (the basis for the doctrine of informed consent or informed choice), and do not use people as a means to ends they have not chosen. But these principles often come into conflict. In particular, the principles of beneficence and autonomy are in constant conflict for physicians. This conflict is probably inherent in the nature of expertise. It can only be managed, and reduced through the democratization of science.

*Actually, interviews were mostly done by my very talented staff.