Decision-Making Consensus in the NICU: What Does Parent-Clinician Collaboration Actually Look Like? (FR416-B)

Abstract

•Describe parent-clinician decision-making in the NICU.•Describe factors associated with parent-clinician consensus about decisions for critically ill infants. We know little about how parents and clinicians collaborate to make decisions for critically ill infants in the neonatal intensive care unit (NICU). Existing data are retrospective or hypothetical, emphasizing clinicians’ over parents’ perspectives. These studies suggest parents and neonatologists leave conversations with different perceptions about which decisions were discussed. To observe and analyze parent-clinician decision making in the NICU. A mixed-methods study at an urban academic medical center. We audiotaped family conferences about life-sustaining therapies and/or “difficult news.” Families, physicians, and nurses completed surveys about meeting content. Transcripts were analyzed using the Informed Decision-Making Tool (IDMT) and qualitative analysis using a priori coding techniques. We audiotaped 19 conversations between 31 family members and 37 clinicians. In 58% of conversations, the primary clinician was meeting the family for the first time. When asked about their preferred decision-making role, 8/31 parents wanted to make decisions after clinician recommendations, 15/31 wanted to partner equally with clinicians, and 8/31 wanted clinicians to make decisions after hearing parent’s opinions. Physicians correctly judged parents’ desired decision-making role 20% of the time, typically overestimating their desired independence. Nurses were correct 57% of the time. Parent-clinician consensus about which decisions were discussed existed after 8/19 conversations; the remaining participants variably perceived that a decision was discussed and variably characterized the identified decisions. Conversations with consensus had higher IDMT scores and were more likely to be about end-of-life care. Clinicians often overestimate parents’ desire to assume primary responsibility for decision making in the NICU. Decision-making clarity seems greatest when it involves forgoing therapies.