Discrepancies in decision making preferences between parents and surgeons in pediatric surgery

Abstract

Background Little data exists regarding decision-making preferences for parents and surgeons in pediatric surgery. Here we investigate whether parents and surgeons have similar decision-making preferences as well as which factors influence those preferences. Specifically, we compare parents’ and surgeons’ assessments of the urgency and complexity of pediatric surgical scenarios and the impact of their assessments on decision-making preferences. Methods A survey was emailed to parents of patients evaluated in a university-based pediatric surgery clinic and surgeons belonging to the American Pediatric Surgical Association. The survey asked respondents to rate 6 clinical vignettes for urgency, complexity, and desired level of surgeon guidance using the Controlled Preferences Scale (CPS). Results Regarding urgency, parents were more likely than surgeons to rate scenarios as emergent when cancer was involved (parents: 68.8% cancer vs. 29.5% non-cancer, p < .001; surgeons: 19.2% cancer vs. 25.4% non-cancer, p = .051). Parents and surgeons were more likely to rate a scenario as emergent when a baby was involved (parents: 45.2% baby vs. 36.2% child, p = .001; surgeons: 28.0% baby vs. 14.0% child, p < .001). Regarding decision-making preferences, parents and surgeons had similar CPS scores (2.56 vs. 2.72, respectively). Multivariable analysis showed parents preferred more surgeon guidance when scenarios involved a baby (OR 1.22; 95% CI 1.08–1.37; p < 0.01) or a cancer diagnosis (OR 1.29; 95% CI 1.11–1.49; p < 0.01), and that both parents and surgeons preferred more surgeon guidance when a scenario was considered emergent (parents: OR 1.81; 95% CI 1.37–2.38, p < 0.001; surgeons: OR 2.48 95% CI 1.76–3.49, p < 0.001). Conclusions When a pediatric patient is a baby or has cancer, parents are more likely then surgeons to perceive the clinical situation to be emergent, and both parents and surgeons prefer more surgeon guidance in decision-making when a clinical scenario is considered emergent. More research is needed to understand how parents’ decision-making preferences depend on clinical context.

A valued voice: A qualitative analysis of parental decision‐making preferences in emergent paediatric surgery

“…The positive outcome for these children may have prompted parents to speak more highly of clinicians regardless of the quality of communication. Further, although grounded in prior work that evaluated parental interpretations of the urgency of given paediatric surgical operations, 7 our classification of the selected clinical settings (ECMO, NICU and cancer) as emergent is relatively subjective. One must also consider that identification of Theme 2 (‘Lifesaving mode’: parents felt there were no decisions to be made) may have occurred due to incomplete informed consent discussions in which clinically reasonable options to transition to palliative care or forego surgical intervention were not offered.…”

“…ECMO was included, as this is a procedure performed only when patients are in immediately life‐threatening clinical circumstances. Solid tumour resection operations and operations on neonates in the NICU were selected based upon a prior survey conducted by our research team where parents of paediatric surgical patients were provided six hypothetical paediatric surgical scenarios and asked to identify the operations they considered emergent 7 . Parents identified operations for cancer and operations on babies to be emergent operations.…”

“…Parental preferences for emergent surgical decision‐making have not been extensively studied 4 . In a survey of parents of paediatric surgery patients, we found that parental decision‐making preferences for paediatric surgery are context‐dependent 7 . Specifically, we identified that parents prefer more guidance from surgeons when making decisions about operations they consider emergent as opposed to operations that they consider nonemergent 7 .…”

“… 4 In a survey of parents of paediatric surgery patients, we found that parental decision‐making preferences for paediatric surgery are context‐dependent. 7 Specifically, we identified that parents prefer more guidance from surgeons when making decisions about operations they consider emergent as opposed to operations that they consider nonemergent. 7 Marsh et al 8 had similar findings when they interviewed parents of children who sustained a life‐threatening, traumatic brain injury on their preference for who should make the decision to proceed with an operation to place an intracranial pressure monitor.…”

“… 7 Specifically, we identified that parents prefer more guidance from surgeons when making decisions about operations they consider emergent as opposed to operations that they consider nonemergent. 7 Marsh et al 8 had similar findings when they interviewed parents of children who sustained a life‐threatening, traumatic brain injury on their preference for who should make the decision to proceed with an operation to place an intracranial pressure monitor. While parents desired information and communication from physicians regarding the procedure, they overwhelmingly preferred that physicians decide whether to perform the procedure.…”