Making important decisions in the dark can be stressful. But a recent study suggests that shining a light on decisions can make decision makers even more anxious. The question remains: Is this anxiety a good thing or a bad one?
The study, from the June 2011 edition of Medical Decision Making, centered on a group of women who carry one of the BRCA genes, genes highly predictive of breast and ovarian cancer. Carriers of this gene, if they also have a family history of such cancer, could face up to an 85% lifetime risk of one of these awful diseases.
No surprise that being informed that you are a BRCA carrier is stressful. But what about being informed about what you can do to combat these cancers, maybe even to prevent them? That’s the question these researchers set out to investigate. They ran a randomized trial, offering “usual care” to half of the more than 300 women in their study, such care typically including a meeting with a genetic counselor. This group was well informed, in other words, about their health-care alternatives.
But the other half were even better informed. They received additional information, a decision aid designed to help them understand their alternatives. I tell several stories about these newfangled decision aids in my upcoming book, Critical Decisions. Suffice it to say that a well-designed decision aid helps empower patients, by informing them of their treatment or prevention alternatives in ways calculated to place their own preferences at the center of the decision.
But what happens when patients are empowered by decision aids? In this study, women receiving the decision aid were significantly more stressed out about cancer in the months following their use of the decision aid. Empowerment through information led to anxiety.
Not very many years ago, some leaders in the shared decision making world—the visionaries who helped establish the value of decision aids in clinical practice—developed a measure of decision related anxiety with the idea that decision aids, which had already been shown to increase patients’ knowledge of their health-care alternatives, would thereby reduce patient stress. Some experts even suggested that reduction in decision related anxiety would be a good measure of whether a decision aid was well-designed.
But understanding one’s decisions does not necessarily lead to calmness of thought. Ignorance, as the oversimplification goes, can lead to bliss. There is nothing easy about deciding whether to have your breast or ovaries surgically removed, to protect yourself from developing a life-threatening cancer. That is an awful, terrible choice for any woman to have to make. Which raises a question: in helping women make these choices, should we protect them from the unavoidable anxiety such choices create? Is it cruel to push them into becoming fully informed about their choices, and about the crucial role their values play in determining the “right” choice? Are decision aids toxic?
My view is that we need to stop kidding ourselves that empowerment is easy. Patient activation is costly. It is stressful for patients. That doesn’t mean, however, that we should return to a world where doctors purposely left patients in the dark, so they wouldn’t get worried. Instead, at the same time as we inform patients, we need to help them cope with their anxiety, thereby reducing the chance that they will be crippled by empowerment. In addition, we need to recognize that anxiety could be a healthy sign that people is grappling with the difficulty of their situations.
We should also keep in mind that in the long run, information doesn’t cause patients to experience chronic anxiety. In this BRCA study, for example, once a month had passed, women receiving the decision aid were no more stressed out than their lesser-informed peers.
A month of anxiety is a small price to pay for being better informed about a life-altering decision.
