Risk Tolerance is a Value Judgment
Putting patients in charge
Imagine that you’re trying to decide if a particular rock climbing route is worth it. You’ve seen photos, which look amazing, and read some reports in a guidebook. You also ask a friend who did it recently. She tells you that the route is great, but there are some tricky spots higher up. Since you’ve climbed with her before, she knows your abilities, and you trust her assessment when she says that this climb is on the edge of your abilities. You agree about the level of risk, but you’re still unsure if you should do it.
So you read some more reports, talk to some more climbers, and, to be thorough, consult an actuary. Suppose you could know the actual amount of risk with certainty, expressed however you want (e.g., “there’s a 0.5 percent chance that you’ll get seriously hurt”). Would that settle the matter of whether or not you should do the climb? No. For one thing, there’s no safe/unsafe binary. Risk comes in degrees. Asking “is this vaccine safe?” or “is this a safe community to live in?” or “is it safe to reopen schools?” is only useful if there’s a shared understanding of what ‘safe’ means, but there often isn’t.
The risk level is important, but there’s no universal fact of the matter that demarcates acceptable from unacceptable levels of risk. Even if you knew the exact risk level with certainty, that wouldn’t settle the question of what you should do. Figuring that out requires value judgments. Alex Honnold can decide that the risk-reward trade-off of climbing El Capitan alone without ropes is worth it, while others would not. Honnold isn’t confused about the risks. Basically all of the non-climbing parts of Free Solo are him wrestling with the obvious fact that he could die.
As with climbing, so with everything else, including finance, driving in a snowstorm, and medicine. When choosing which type of investments to make, there’s no single objectively correct approach. To be sure, a better case can be made for some options over others in some situations, and there are some objectively bad choices, but it depends in part on the risk tolerance of the investor. A good investment advisor will understand the investor’s goals and risk tolerance and make recommendations accordingly.
A central theme of patient-centred care is that value judgments should be left up to patients with decision-making capacity. Since risk tolerance is a value judgment, patients should be given the final say in whether a medical intervention is worth it to them. Frequently, this isn’t what happens. Providers make determinations on behalf of patients, couching their decision in terms of their expert medical judgment or what’s clinically indicated or simply saying that something is too risky. But medical judgments are either about facts or values. The fact could be that a patient has cancer, but determining the best way forward, or whether some approach is worth the risk, should reflect the patient’s values, not the provider’s.
Robert Veatch captures this sentiment nicely: “It is absurd for a man to ask his doctor, of all people, whether Viagra is right for him. If he is going to ask, the first person should be his […] partner.” (link)
This isn’t to say that providers should accede to every patient request, since some requests have no connection to the value. In other cases, there might be some chance that the intervention will promote the patient’s goals, but there are competing values—such as the interests of other patients—that justify not proceeding.
What does this mean for the role of providers? They can still express value judgments, but doing so should be in the service of the patient’s ultimate goals. For instance, after understanding a patient’s values, a provider might say “based on everything you’ve told me, and given our agreement on your clinical situation, I recommend doing x.” The patient has good reason to listen to the provider, but the patient can still choose to do otherwise. It’s their choice.
This view is controversial in medicine, but it’s standard in all other fields where a fiduciary duty exists. Acting in the best interest of the client means ‘help your client achieve her goals within the boundaries of ethics and the law’ for financial advisors, accountants, and lawyers. For instance, lawyers are taught that they should never do something without their client’s instructions. It’s only in medicine where there’s a belief that going against the wishes of patients, or not finding out what their wishes are, is justified.