Communication challenges: perioperative risks and care directives

Effective communication and shared decision-making is crucial in caring for children with congenital or acquired heart disease. Despite high mortality, complications related to interventions, and suffering in pediatric advanced heart disease, there is a disproportionate lack of research and advancements in communication and shared decision-making surrounding perioperative risks and advance care planning. We have comprehensively reviewed recent research on this multifaceted topic in the past 1.5 years to highlight major findings and propose priorities for future research.

Research has focused on parental perception of clinician/team communication with a notable paucity of research investigating the clinician perception of barriers to effective communication. Although there are discrepancies between parental and clinician perception, lack of trust between the patient's family and provider was acknowledged as a barrier by both parents and clinicians. Insight into interprofessional needs and expansion of structured language for discussions around shared decision-making should be prioritized.

Clinician discomfort with communication skills and conveying uncertainty in prognosis are two major areas for future research. On the basis of the literature to date, the focus should be placed on interprofessional needs and structured language for discussions around shared decision-making.