The Right to Medical Self-Defense

A couple of weeks ago I got a panicked email from a friend of mine. His dad was having trouble breathing, and it was really making him miserable. He'd had issues with this before and knew a treatment that worked for him. The steroid prednisone seemed to always work. He was in a lot of pain, and my friend was getting desperate. Their family doctor wouldn't prescribe prednisone because the dad has a heart condition, a contraindication to the prescription he was seeking. 

I won't reveal many more details other than to say that the dad is fine. He managed to get a legal prescription to prednisone, and his breathing cleared up. It apparently didn't affect his heart. 

How should we think about this hypothetical story, which may or may not have happened the way I described it (or at all)? Does a doctor have a "right" to deny you medicine when you're pretty sure it works for you? Should we think of the dad as foolishly overriding the advice of his doctor, whose scientific credentials give him flawless insight? Or should we think of the doctor as robotically following a script, while the dad had proven, time-tested knowledge of which treatment clears up his breathing issues? Suppose it's not totally obvious what the "right" answer is here. Maybe the dad's breathing trouble could actually kill him, but it's also possible that prednisone will fatally exacerbate his heart condition. This is a condition of radical uncertainty. Who ultimately should get to decide whether the dad gets the medicine he wants? 

I will argue for an untrammeled right to medical self-defense. Ultimately, it's your body. You have the right to be mistaken and to make a foolish decision regarding your own health. Other people can try to change your mind, but you have a basic right to overrule them. Assuming you're an adult and are capable of understanding the risks, it's your call.

The dad in the above story had knowledge of how his body specifically responds to prednisone. The family doctor was following a recommendation, which presumably is based on aggregating information about similar cases that have happened in the past. The recommendation comes from some august body reviewing the medical literature, which is composed of various observational studies, clinical trials, and case studies. The dad's medical history is not as large and credible, in the sense of establishing statistical confidence, as the literature review. At the same time, it is more specific to his personal biology. He could well take the position, "Too bad this stuff doesn't work for everyone, but it works for me." And the doctor could reasonably take the position, "In those previous episodes, you just got lucky. You would have recovered anyway without prednisone. And you are playing a risky game with your heart condition." It's actually not clear which one has the wrong answer. Both are making a kind of guess, both are operating under radical uncertainty. Clearly some of the people in the dad's position make the wrong call and end up harming themselves. Since the dad in the story is the one whose health is on the line, I think it's pretty obvious that he should have the final say. Just to be clear, the dad in the story is not some kind of extreme outlier or edge-case. Think of the chronic pain patients whose doctors won't prescribe them opioids. Or think of a desperate, dying patient who wishes to try an experimental drug but can't because of regulatory barriers. Witness all the successful therapies involving MDMA and psychedelics for post traumatic stress disorder, or the same drugs used for the "betterment of well people". (Absurdly, the legal status of MDMA in the United States is Schedule 1 as of this writing, which implies that it has no known medical use. This "schedule" status is entirely a legal fiction, not a scientific assessment of the existing literature.) I think there were plenty of vulnerable people who would have been willing to take the Covid vaccines before they were officially "authorized for emergency use". In a just world, they would have had the option to try. Thousands of lives could have been saved because of this, and vaccine developers could have tried different formulations, perhaps hitting on a more effective vaccine less prone to side effects. What I'm trying to say is that the dad in the story has plenty of company. There are a lot of people who butt up against legal barriers to the treatment they want. In many of those cases, the treatment would indeed benefit them. 

We put too much stock in the notion of modern medicine as a scientific practice. Most doctors follow a "standard of care," which is more a legal concept than a scientific one. The standard of care is a kind of legal safe harbor. It's the protocol you follow to ensure that you don't get sued for malpractice. Of course, the standard is the standard because it has the weight of evidence behind it. If some other regime were more promising, it would (eventually) be the standard. But "standard of care" is a kind of consensus, and consensus only changes slowly and only in light of truly overwhelming evidence. Imagine being a research physician who promulgates such guidelines. You're responsible for an outdated standard of care that was subsequently found to be killing a lot of people (compared to some alternative standard, or compared to "no treatment"). There is naturally going to be resistance to any effort to update the guidelines. Any such update represents a pretty harsh rebuke, insinuating that your poor judgment has harmed thousands or even millions of people. We should conclude that the current practice of medicine is always lagging the best available information. The updating process is likely blocked by a combination of sheer inertia of habit (by typical doctors running a practice) and active resistance by promulgators of the existing standard. On the other hand, guidelines that too readily followed the latest journal publications would be chasing fads that ultimately don't stand the test of time. There is usually a range of plausible treatment protocols, any one of which may have vociferous detractors and enthusiastic advocates. Science doesn't yield unimpeachable answers. It's a process for reaching towards the truth, and the range of plausible answers is quite wide.  

None of this is to say we should just dispense with guidelines and scientific consensus-building, so long as we recognize it as a work in progress. If you are suffering a heart attack, getting the standard of care will probably save your life. But we need to be aware that this is the environment we're swimming in. It does a poor job of trading off one kind of harm versus another. Quite plausibly the doctor in my story was only saying "No" to avoid getting sued. The existing health apparatus is also bad at trading off comfort or pleasure against measurable health outcomes; the patient may prioritize the former while the doctor is biased toward the latter. Even assuming we keep this regime of requiring a doctor's sign-off to get certain kinds of medicine, we should allow the patient to sign some kind of iron-clad waiver saying he won't sue the doctor. (Or perhaps he could get the pharmacist's sign-off if denied by the doctor? Or simply certify that he's taking the medicine against the recommendations of a doctor? Your body, your choice, right?)

We have erected three types of legal barriers to getting medicine. One is the outright prohibition of certain classes of drugs, usually because some people find them fun. Another is the approval process for new drugs as managed by the FDA. The last is the need to acquire a prescription for certain drugs. You could refer to these various barriers as "Not ever," "Not yet," and "Not you." None are legitimate.

I could make an entirely different kind of argument. I could make some kind of consequentialist argument that the world would be a better place by some objective measure if we had an unbounded right to medical self defense. I think that's probably true, by almost any objective measure of the public's general health. But that's not my goal with this post. I merely want to assert that this is a right. I'm planting that stake in the ground. If you are convinced that a certain kind of medicine is the right treatment for you, it is not the business of technocrats to override your decision because they think they know better. I don't think technocrats should be able to veto your decisions about where to live, who to share your life with, or what kinds of books to read. It wouldn't really matter if they had a truly compelling cost-benefit analysis to justify overruling your decisions. There's just something inherently creepy about giving the government this kind of power. Giving technocrats veto power over our health decisions is the same thing in principle.