The Paradox of Patient-Centric Decision-Making

Whenever someone asks me to make a decision about how to do something I’ve paid them to do, I generally wonder why they don’t just tell me what they think I should do. I have no idea whether I want traditional copper piping or the new flexible tubing for the bathroom downstairs; I couldn’t begin to tell you if I want synthetic oil in my car; the only direction I’m happy to give an expert  is how to cook my steak (medium rare, thanks.) I just don’t know what I don’t know, and I don’t have the context of living with previous similar decisions in order to ground my current one. I don’t have 500 cars, so I don’t have a large experimental set with which to work when someone asks me about the types of oil I want to use. I don’t know, I haven’t thought about it much.

My mechanic, now he’s probably thought about it—that’s why my return answer to anyone asking me to choose is usually, “Tell me the difference.” Then, if he or she is any good at upselling, they tell me why the one that makes them more money or is easier for them to do (or hey, is better for me—give people the benefit of the doubt here) is the better choice, and I say, “That one.”

This is the paradox of consumer-centric decision-making—consumers have to live with choices, so they should be empowered to make them and not abdicate or have them taken away by the professional provider; but consumers generally have far less of an idea of what they’re choosing than does the professional who is going to deliver the service, and almost certainly don’t understand the full potential scope of ramifications of one choice over another. In the worst of cases, theory works out in practice to mean that the consumer (me) has the right to make a poorly informed decision (who knew that plastic tubing is easier to install, but that my water would taste like plastic when I went for the flexible tubing? Sucks to be me…).

Apply the consumer-centric philosophy to our world, and you have patient-centric decision-making. Patient-centric decision-making is the laudable philosophy based in the premise that patients know what they want out of life, and since it’s their life to boot, they should be making their own healthcare decisions. We know this won’t just happen—since patients traditionally haven’t had to make these decisions, we need to empower them, as well. This is a far cry from, and improvement over, the days when doctors made decisions for patients, even life and death decisions (apocryphal stories from the turn of the last century abound, including euthanasia, administration of therapy without consent, and other more gruesome stories I’ve heard told to me that I’ll tell you over a beer some time.)

The problem, and there is a problem, is that patients generally don’t know the full scope of their options nor do they know the possible ramifications of their choices, and so are making decisions with less-than-perfect information on which to base them. They could turn to the Internet and post their question in a chatroom, or they could ask a stranger they meet on the subway (it’s sort of the same thing), but most likely, they’ll ask their doctor. Which in turn leaves the doctor with the quandary, how do I provide unbiased opinions relating to a choice about which I actually have an opinion? If I think oral anti-diabetic pill A is better than pill B, I may frame your choices “fairly” but with clear leading intent: “Option A is a good one for someone in your case. Option B generally works for people much sicker/older/younger/whatever than you…”

This is the fundamental challenge of patient-centric decision-making, that at the end of the day, most of the information patients really need to make an informed, rational decision should probably be coming from their healthcare provider, who in turn is put into a fairly strong position to influence the decision itself. It’s a paradox, or even a catch-22, like, “How do I get job experience so that I can get a job without having a job to give me experience?” or, “How do I know I’ll hate flexible tubing until I live with it for a month?” Clearly we need to help patients become educated so that their decision is truly informed; it’s not clear how much education is enough, nor where the best source of that information can be found.

One possible solution is experience by proxy, which the Internet is actually quite good at. If you want to know what it’s like to live with one choice or another, Internet communities are surprisingly good sources for finding out, not necessarily what you should do, but rather what it’s like living with choice A or choice B. It’s not perfect, and you have no idea if the people you’re getting your information from are really unbiased (or even sane.) But at least you can get a feel for life after your choices, which is what really matters, and you can have some sense of the issues you’ll deal with given one choice over another, from people who have had to live with those choices.

Experience by proxy isn’t perfect, but it is definitely a good way to learn something the slightly easier way than learning it for yourself. For example, if you choose flexible tubing over metal piping, let the water run for a minute before drinking it—that works pretty well.

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