Patient and physician views on decision-making, including in advanced heart failure or pediatric deep brain stimulation, is a central research focus for J.S. Blumenthal-Barby, PhD, MA. She noticed a common theme in many of these studies — specifically, what physicians think patients need to know is different from what patients actually want to know. Physicians tend to focus on risks, while patients are more focused on lifestyle changes.
“Engaging in good shared decision-making is a way to identify what is important to the patient, and then discussing options, risks, and benefits in light of that,” says Blumenthal-Barby, a professor of medical ethics and associate director at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston.
Blumenthal-Barby and colleagues developed a four-step process for shared decision-making in pediatrics:
1. Determine if there is more than one medically reasonable option;
2. If so, determine if one option has a favorable medical benefit/burden ratio compared to the other options;
3. Elicit parents’ preferences regarding the available options;
4. Calibrate the approach based on other relevant decision characteristics.
For example, shared decision-making may be more parent-directed or more clinician-directed, depending on how acute or urgent the decision, or whether the decision is about a one-time treatment or something more chronic.
“We wanted to understand whether the four-step process aligned with the experiences of parents and clinicians participating in actual decisions across multiple pediatric disciplines,” says Douglas J. Opel, MD, MPH, professor of pediatrics at the University of Washington School of Medicine and director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s.
Opel and colleagues videotaped 30 pediatric inpatient and outpatient encounters, and conducted 53 interviews with clinicians and parents on the decision-making that occurred during the encounters.1 Clinicians’ and parents’ experiences of decision-making confirmed clinicians followed each step. However, there was some variation in the way clinicians interpreted the steps.
Sometimes, all anyone communicated to the parent was the physician’s recommendation of what to do, not that there were several options to choose from and why one particular option is what the clinician preferred. This suggests physicians could benefit from additional guidance to promote the appropriate use of shared decision-making. “It isn’t just a matter of simply doing these four steps if you plan to use shared decision-making. Rather, it’s about how the steps are done,” Opel says.
A step conducted suboptimally can unintentionally result in a decision that seems less shared than intended. For example, clinicians sought parent preferences regarding the available treatment options. Nearly all parents and clinicians agreed the ability of parents to voice their preferences was critical to sharing a decision. However, some clinicians fulfilled this step simply by seeking parent agreement with their preferred option without much additional discussion.
“This has the potential to result in a decision that feels less shared than if the clinician explicitly elicits and explores parent preferences,” Opel says.
REFERENCE
1. Opel DJ, Vo HH, Dundas N, et al. Validation of a process for shared decision-making in pediatrics. Acad Pediatr 2023; Jan 20:S1876-2859(23)00007-4. doi: 10.1016/j.acap.2023.01.007.
Sometimes, all that is communicated to parents was the physician’s recommendation of what to do, not that there were several options to choose from and why one particular option is what the clinician preferred. This suggests physicians could benefit from additional guidance to promote the appropriate use of shared decision-making.
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