Work in shared decision making tends to focus on the clinical encounter. Some research has focused on how to prepare patients and clinicians for a decision making encounter. Other work has focused on how to facilitate conversations during an encounter or measuring the extent of shared decision making that occurs between patient and provider. This focus on the clinical encounter likely has multiple origins. First, much of the research in shared decision making has focused on decisions that are relatively discrete and time-bound, such as surgeries or screening tests. Second, the clinical encounter is easy to access and assess. It occurs at a specific time and place. It involves a set group of individuals. It has a beginning and an end.
Particularly in the setting of chronic disease, a singular focus on the clinical encounter limits our understanding of decision-making processes. In fact, in chronic conditions decision making is often thought of as being more of a process than an event. However, little research has investigated the details of this process. We sought to more fully explore this process through a longitudinal qualitative study of parents of children with chronic conditions.1
In this study we followed parents (n=29 from 21 families) for 6-10 weeks following an index clinical encounter at which they discussed a treatment change for their child’s chronic condition. Parents were interviewed multiple times and asked to describe their decision process, including aspects of the process that occurred before the index encounter. For all participants, the decision evolved over time, neither starting nor ending at the clinical encounter, and involved conversations with family members and/or friends who had not been present at the clinical encounter. Some parents described a slow, steady progression towards a decision while others either felt the decision occurred in a step-wise process or that some event led to an abrupt decision. Regardless of how the decision evolved, parents felt their role in the decision-making process did not change over time. Furthermore, after the decision was officially made parents continued to think about it and consider whether they had made the right decision.
The concerns and expectations parents had about treatment changed over the course time. Often after deciding to start a new treatment the expectations shifted from focusing on symptom improvement to focusing on side-effect avoidance. Similarly, parents’ emotions often fluctuated between worry and hope. Some experienced relief from worry when their child did well on the new treatment while others shifted from worrying about their child’s symptoms to worrying about potential side effects.
By prospectively following parents, we demonstrated that, indeed, decision making in chronic disease is a process not an event. It is a process that follows distinct patterns of evolution, includes numerous people and involves shifting expectations and emotions. How then do we best support and foster shared decision making in this environment? We need tools that capitalize on the fact that decision-making occurs over time. Tools that help patients and families converse with clinicians and then help those patients and families converse with other people in their life. We need to acknowledge that what happens in the clinical encounter is likely only a small part of the decision-making process, an important part but not the only part. Finally, in the setting of chronic conditions we need to develop programs, tools and interventions that capitalize on chronicity. Few people impacted by chronic conditions will make only one treatment decision during the course of their illness; rather chronic conditions involve a series of decisions. By taking advantage of this repetition we may be able to help families become more skilled, engaged decision makers through learning and practicing skills at each decision making opportunity.
Submitted by Ellen A. Lipstein MD, MPH
Ellen A. Lipstein MD, MPH, is a general pediatrician and health services researcher at Cincinnati Children’s. Dr. Lipstein’s research is focused on family-centered medical decision making. She is particularly interested in understanding and improving the ways parents and patients with chronic conditions collaborate with healthcare providers to make treatment decisions. Her current program of funded research uses both qualitative and quantitative methods to explore decisions about high-risk treatments, in which both the potential benefits and risks are significant. Additionally, Dr. Lipstein is a collaborator on several studies which aim to develop diverse methods for engaging patients and parents in decision making.