Abigail Zuger, the New York Times’s very thoughtful medical columnist, writes today about patients who invent fears of implausible or unlikely diseases to avoid dealing with the obvious facts of health conditions they already have but do not want to face:

“I was crossing Third Avenue yesterday and I was coughing so hard I had to stop and barely made it across,” a patient told me last week. “I’m really scared I’m getting the avian flu.”

I just looked at him. What could I say? He has smoked two packs of cigarettes a day for the last 50 years. He has coughed and wheezed and gasped his way across Third Avenue now for the last 10 years. His emphysema is not going to get any better, but it might stop getting worse if he were to stop smoking.

“I’m worried I have Lyme disease,” she said. “I have all the symptoms. I think I need to be treated.”

“But you have AIDS,” I said.

“I’m tired and weak and I have fevers and sweats. I’ve lost my appetite. I can’t think straight. I’m losing so much weight!”

She had seen a TV news report on Lyme disease, and then she had checked the Internet. All her symptoms were right there.

“But you have AIDS,” I said. “And you don’t want to take meds. That’s why you’re feeling so bad.”

“I’m really scared about Lyme disease,” she said. “I really need to get treated.”

“If you want to be scared, how about that untreated AIDS of yours?”

We looked at each other. It was an impasse. The fact that logic was on my side mattered not at all: evidently the real was just a little too real for her. How much better to find another illness to be scared of, obsess over, get treated for, get rid of.

Eventually she coerced my colleague into testing her for Lyme disease and treating her despite negative tests. Then she decided her symptoms might actually be due to a brain tumor, instead. And so it went, until she died of AIDS.

This creates a double-barrelled dilemma over autonomy: the patient will not confront the disease the doctor knows they have, and the patient demands treatment for a disease the doctor knows they don’t have. In both cases, clearly, the doctor really does know best, but the patient cannot be coerced into taking treatment they do not want, and sometimes cannot be talked out of treatment they do not need. (The doctor has a little more leverage in the latter case, by way of refusing to provide treatment that the patient cannot get elsewhere, but this comes only at the expense of the patient’s autonomy.)

For strong autonomy advocates such as myself, these cases are infuriating. The idealized model of an empowered patient assumes the patient has understandable health goals and a rational approach to achieving them - further it assumes that the patient is intelligent and educated enough to deal with sophisticated medical information, and psychologically receptive to that information as part of their decisionmaking. That latter point is the locus for many challenges to autonomy under the rubric of “inauthentic” decision-making or mental incompetency, but the problem in these cases is that the patients’ decisions are questionable even though they would most likely not be adjudged non-competent by a review board: they’re apparently not disoriented or incapable of making decisions, they just make stupid ones. And that’s not something the standard model of autonomy has much room for.

As regular readers of this blog* will recognize, problems of marginal autonomy are much with me these days. I want robust and decisive autonomy rights for all qualified patients, and I feel the qualification bar should be set fairly low. In particular, having non-mainstream values or goals has nothing to do with autonomy and should not be a disqualifier. But you kind of hope the patients will hold up their end of the deal - if we’re going to remove all protections and safeguards and let people do what they want, those people have to be willing and able to exercise the kind of protective judgment in their own cases that we relied on healthcare providers to undertake in their behalf prior to the autonomy era. Mostly, that seems like a good trade. But patients like these make respecting patient autonomy look like giving your teenager the keys to the liquor cabinet.

* Yes, I know there aren’t any.

There is a small but apparently growing movement of evangelical Christian health plans that impose extraordinary requirements on their members in return for severely limited services, operating through legal loopholes in the insurance regulations. Their appeal to Christian consumers is that they limit themselves only to people who are certified as members in good standing of evengelical churches, and their monthly premiums are lower than those of traditional insurance. Their services, however, are distinctive:

[B]ecause their membership is strictly limited to evangelical Christians certified as regular churchgoers by their pastors, they cater to people opposed to “subsidizing high-risk, sinful lifestyles,” in the words of Medi-Share’s Web site. . . .

All three of the largest plans — Medi-Share, Samaritan and the Christian Brotherhood Newsletter, headquartered in Barberton, Ohio — impose strict limits on treatment, restrictions that would be illegal under regulations that apply to conventional insurance.

Tobacco use, immoderate drinking, homosexuality and extramarital sex are strictly forbidden, and anyone caught violating these proscriptions can be expelled. The plans don’t pay for abortion,or treatment of sexually transmitted diseases or HIV that was not, as Samaritan puts it, “contracted innocently.” While each plan’s rules differ, most exclude coverage of preexisting conditions, as well as treatment related to cancer recurrence, serious heart disease, obesity, psychiatric disorders or vision problems.

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