Does Clinical Documentation Reflect How Parents and Clinicians Share Decisions About Surgery?

Background 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 uniquely pertinent in the setting of surgery in children, where parents serve as proxy decision-makers. Methods 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, content, and timing of these elements expressed in verbal communication and in clinical documentation. Results Of 109 visits, concerns and preferences were discussed in nearly half of encounters (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 were raised throughout the encounter. Preferences (e.g., “I would just rather take them out”; “I’d definitely rather go the conservative route”) centered on treatment decisions and were typically expressed later in the visit, after the physical exam. Of the total unique stated concerns (n = 74) and preferences (n = 62), about half were recorded in the medical record (Concerns n = 34, 46%; Preferences n = 28, 49%). Conclusions These findings show that parent preferences and concerns that are discussed during pediatric surgical encounters are not routinely reflected in clinical documentation. Improving the consistency with which family perspectives are documented may enhance transparency, support communication across the health continuum, and contribute to high quality patient- and family-centered care.