Even patients who appear not to be interested in a shared decision-making approach may benefit from being invited into this conversation. Some patients still feel socially pressured not to speak up during medical encounters. A review of 44 studies suggests that most patients want to participate in a process of shared decision making, but many feel they are unable to do so. Patients may not recognize the expertise they themselves bring, and they may underestimate the importance of their role in finding the right treatment. Some patients fall into a purely passive mode out of a desire to be a “good patient.” This may especially be true of older individuals and individuals of lower educational achievement.11
Education
Sometimes patients are reluctant to participate in discussions of shared decision making because they feel they don’t know enough about their medical condition and treatment options. Sharing information well is not a component of shared decision making per se, but more an important baseline component of good clinical care. It is also a prerequisite for truly shared decision making: Patients cannot truly participate in their care if they do not have the information most relevant to them when making a choice. Dr. Shmerling also notes that patients need to be empowered with accurate and reliable information to make the best decisions.
It is also important that patients have reasonable expectations of the treatment right from the outset. Setting up these expectations is particularly important for rheumatologists, who often treat conditions over long periods of time. “If the patient understands the rationale for the medication, understands what to watch for, understands that it is a long-term plan, not necessarily something that is going to make a difference tomorrow, but may protect their joints over the long term—all those things help them stick with the plan or help them communicate with their doctors when things don’t go right,” Dr. Shmerling explains.
In her practice group, Dr. Desai notes they regularly try to create or provide patients with useful educational materials to aid in the decision-making process. “There are so many things you have to explain. And patients—they can only hear so much—it is a lot of information. Often, I’ll just tell them to go to the ACR’s website, because it has really good information on all of the drugs and how they work—patient friendly information they can access and think about before they even make a decision.”