There are a lot of buzzwords in the push to improve the healthcare system: patient-centric, value-based care, and shared decision-making are just a few. They show that there is an interest, whether motivated by federal regulation or altruism, to start figuring out what patients want from the system that treats them. But sometimes these terms are ambiguous and it’s hard to know why they are important or, if they are obvious, how we feel about them.
Shared decision-making is one of those concepts that’s pretty obvious conceptually, but might not be so easy to practice. It involves challenging an established hierarchy that puts doctors and other providers at the top of the decision-making process, and patients at the bottom, even though we patients are the ones who have to abide by those decisions and follow regimens we often have no say in developing.
As a self-sufficient person, this always rubbed me the wrong way, even as a teenager, especially since “no” was one of the first words I mastered. But somehow, while having no trouble saying it to literally everyone else, it never occurred to me that I could say no to a doctor. They were the experts -- surely, they must know what’s best, even if the treatment recommended was not meeting my needs or was too difficult to manage? Back then, I put all my effort into it because they told me to, sometimes to the detriment of other important aspects of my life.
As a grown-up, I learned that what I wanted mattered, too. I’m not sure I would have gotten there without the right people around me, and learning it was uncomfortable. It took a long time of hearing the same thing over and over from many different providers: don’t pull a no-show when your labs aren’t where you want them to be; it’s ok to come in for treatment for something comparatively minor (infected cuticle/a boo boo on my finger); it’s ok to not have surgery until you’re ready. Collectively, they were telling me that they were there to help me when things were difficult, even when I wasn’t following their regimens or might be causing them “inconvenience”. (Yes, patients do think along the lines of not wasting providers’ time for things that disrupt their lives but might not be considered important by them or others.) This allowed me to gradually push back harder and harder until, before I knew it, the providers and I were having detailed, nuanced conversations that led to mutually agreed upon goals and lifestyle approaches that I thought I could do between one appointment and another. Sometimes, it was as simple as getting better sleep for a few months. This is important because it’s a natural human instinct to rebel when we are told to do something. we are much more likely to follow courses of treatment we helped to develop.
This kind of care is still very much an outlier. It shouldn’t be, but finally people are starting to understand that patients need to have – deserve to have -- a greater role in their own care. Yes, it’s more time intensive, and yes, this approach takes some time to develop and requires both patient and provider to be willing participants. Between that and requiring most of us to go against the established hierarchy, it’s not going to be easy. But, even if it wasn’t a more compassionate approach, it is a more effective one. For that reason alone, we patients should be looking to make it our norm.