Map of life expectancy at birth from Global Education Project.

Monday, February 14, 2005

An explanation

Apologies, if they are needed, for the previous nerdy post. But there was method in my wonkishness.

Until the mid 20th Century, the generally accepted relationship between physicians and patients was one of 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." Patients could be said to have consented to treatment if only because, as a practical matter, they had to physically submit to the surgeon's knife or swallow the doctor's potions. However, there was no expectation that the patient would be specifically informed about the physician's theory of the patient's disease, the theoretical basis of the proposed remedy, possible adverse effects, or alternative treatments.

In 1981 the U.S. Congress, believe it or not, commissioned a study of "the ethical and legal implications of the requirements of informed consent" in medical practice.” The study proposed an ideal model of medical decision making in which physicians and patients are partners. While physicians possess expertise about diseases and treatments, the patient is the expert on his or her own tolerance for pain and inconvenience, fear of disability or death, and other subjective factors essential to determining the consequences of a treatment choice for the patient's well-being. The report also put forth self-determination as having intrinsic value.

I don’t know whether to credit the Congressional report, but the culture has definitely evolved to the point where physicians are taught that this is the ethical way to practice, and patients generally view themselves as sharing decision making with their doctors. Unfortunately, in this case, perception is not reality. Research has shown that, at least in routine prescribing, most the required elements of informed consent are usually missing. The doctor says, "Take two of these three times a day, " and that's it. Immediately after a medical visit, people don't accurately remember at least half of what the doctor told them anyway. Most important, at least in interviews I have done, most people say they shared the decision about their treatment, but the only real rationale they have for their decision is that the doctor recommended it.

So, in my previous post, I did my best to explain basic facts that are important for people taking antiretroviral medications to know, in the most accessible terms I could find. No doubt a lot of people could do a better job than I did, but still, it's hard! With a decent grasp of basic ideas of modern biology, it's not that hard to understand, but most people don't have that grasp. It's not just of academic importance -- it's essential for all of us as we try to advocate for ourselves and our loved ones with the health care system and our individual practitioners, make the right choices about treatment, and take care of ourselves properly.

We have no hope of ever having a health literate population if people aren't taught the theory of evolution. It's at the heart of biology, and it is the key to understanding viral drug resistance, antibiotic resistance in bacteria, the emergence of new infectious diseases, resistance of insect and crop pests to pesticides and even, surprising as it may seem, cancer. So the forces of darkness whose "moral values" supposedly helped elect the White House Resident want to codemn their own children to ignorance and yup, ill health. Nothing morally valuable about that.

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