Does clinical documentation reflect how parents and clinicians share decisions about surgery?

While use of shared decision-making (SDM) is widely accepted and applied in practice, it is unknown how core elements of SDM are reflected in clinical documentation. This knowledge gap is particularly relevant in the setting of surgery in children, where parents serve as proxy decision-makers.

We analyzed transcribed audio-recorded outpatient encounters and corresponding medical documentation for pediatric patients undergoing evaluation for elective surgery. Visit transcripts and medical record documentation of the corresponding clinical encounter were coded for two core elements of shared decision-making: parental concerns and preferences. We assessed the frequency (visit-level and instance-level) and content of these elements expressed in verbal communication and in clinical documentation.

Of 109 visits, concerns and preferences were discussed in nearly half of encounters (Visit level: Concerns n = 46, 42%; Preferences n = 49, 45%). Most verbally-expressed concerns (e.g., "we're worried about her breathing"; "…she sleeps with me. I'm constantly shaking her. She scares me a lot") focused on symptoms and surgical risk whereas preferences (e.g., "I would just rather take them out"; "I'd definitely rather go the conservative route") centered on treatment decisions. Of the total unique instances of stated concerns (n = 74) and preferences (n = 62), about half were recorded in the medical record (Instance-level: Concerns n = 34, 46%; Preferences n = 28, 49%).

These findings show that parent preferences and concerns that are discussed during pediatric surgical encounters are not routinely reflected in clinical documentation. Thoughtful documentation of family perspectives may enhance transparency, support communication across the health continuum, and contribute to high quality patient- and family-centered care.