Now that patient-centered decision making is becoming a reality, it begs the question: are we, as patients, really prepared to make life-or-death decisions on our own behalf?
The biggest problem I have making many of the decisions I am faced with in everyday life, not just in health, is that I simply don’t know enough about the options I’m choosing between. I am fully capable of ordering a cup of coffee—I’ve had lots of different kinds of coffee, and on any given day can be trusted to order myself a latte or a grande or whatever.
But if you ask me something I really don’t know much about, either experientially or theoretically, I’m going to be at sea, metaphorically speaking. To reuse an example I wrote about recently, when my builder asked me if I would prefer for him to install flexible tubing instead of traditional pipes for a new sink, I really didn’t have any idea, at all. He’s the expert, so I asked him what he would do. And he did what anyone might do in that situation—he told me what was good and bad about each, but made it clear that, really, flexible tubing was the bomb. You’d be an idiot not to go with flexible tubing.
And it turns out, he’s wrong. It works fine, but the water tastes like rubber, so you have to let the tap run for about 30 seconds before you fill up a cup of water. Not a huge deal, but what happened is, he gave me advice based on what would work best for him; it’s a lot easier and faster to install flexible tubing, so why not suggest it to me? I mean, he did give me the options, and he told me the truth about each in terms of cost, durability…but he never really told me what it would be like to actually live with a sink that produced water that had flowed through, or worse, sat in, flexible tubing. It was a decision he had to execute—it was a decision I have to live with. There’s a really, really big difference.
This lack of context when making decisions is one of the key problems facing patients who are now tasked with the emerging paradigm of patient-centered decision making, that is, the job of making their own health care decisions. Patients lack the experiential knowledge of what it might be like to live with option A versus option B. Doctors and other health care providers, who are much more familiar with the choices being faced, really never live with the consequences of these decisions, they merely execute or observe them. Just like a plumber, their choices are based on their own interpretation of what is best for the patient, which is probably in some measure based on what makes most sense for them, given that they have to carry out the technical aspects of the decision. This is why we are moving towards patient-centered decision making in the first place, so that the patient can make decisions based on what he or she believes will be best for him or her, given their values, their situation, etc. But if we give patients the kinds of information that doctors use to make decisions, or the kinds of information my plumber gave me about ratings, durability, costs, etc, we’re only helping patients understand the consequences of their decisions from the point of view of someone who doesn’t have to live with them—we’re still not helping them understand what it will be like to live with the consequences of different decisions.
A lot of very important medical decisions are made only once by any given individual, so whereas I might have another sink put in some day and be able to make a second decision differently based on the experiences of the first decision I made, sink-wise—in the medical context, you pick your option and you live with it. We may be providing patients information about these decisions, but in many ways it’s hard to say that the decisions themselves are “informed.”
What we need, then, is some way to give patients a window into the possible futures that might exist for them, depending on which choice they make, which option they follow. Like the Ghost of Christmas Future, we need to have some way to show patients what their lives might be like with choice A, choice B, or no choice at all.
This is, in part, the theoretical underpinning of one of Ogilvy CommonHealth’s two South by Southwest (SXSW) core conversations taking place in Austin, TX, early in March.
One of the best tools for achieving this is video testimonial by patients who have been faced with similar choices, and who made one. These patients can talk from experience about what it is like to make such a decision, why they made it, and what it’s been like since then. Another patient may have made a different choice, and can talk about the consequences of that choice from their distinct point of view. And suddenly a patient who was choosing from medical options based on things like survival rates and risk-benefit can now make decisions based on the experiences of people like them, facing the same issues they faced; people living with the consequences of their choices, for better or worse. This we call “experience-by-proxy”—borrowed experience, which allows you to gain knowledge of a path followed before you follow it for yourself.
These experiences-by-proxy won’t necessarily help make the decision for you, but they can make your decision more grounded in reality. If you are unsure if you need a hip replacement, and watch several videos, one of which has a patient saying, “It changed my life, I have no idea why I waited so long,” and another of which says, “It was horrible, I should have waited longer, and here’s why…”, you may still have conflicting opinions. You may still want a better quality of life with a new hip, but fear the consequences of an operation that is never guaranteed to go right. You may still be on the fence…but at least now you have a clearer vision of what it would be like to live with the option to go forward with hip replacement, and to put a face and a life to the theoretical risk and benefit you considered earlier.
To learn more, go to http://schedule.sxsw.com/2013/events/event_IAP7391
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