(872) Facilitating Factors and Barriers to Effective Death by Neurologic Criteria Family Discussions

Introduction: Death by neurologic criteria (DNC, also known as brain death) is a complicated and emotionally challenging topic for clinicians and families alike. As part of the Society of Critical Care Medicine (SCCM) Pediatric Contestation of DNC Toolkit Task Force, we met with family advisory council (FAC) members and leaders. We sought both to determine understanding among people who may not have experience with DNC and to identify resources that may help families understand the concept and process for DNC determination.

Methods: We conducted a multi-center prospective observational study across 4 institutions. After an introductory meeting with FAC members, we distributed surveys that queried DNC understanding. We summarized results using descriptive statistics. At a subsequent FAC meeting, taskforce representatives led focus groups to explore content and resources which may be beneficial to include in DNC determination family toolkit. We applied thematic content analysis to meeting field notes to generate themes.

Results: 20 FAC members completed the online survey and 47 participated in the focus groups. 30% (6/20) were familiar with the term DNC and 1 participant knew how DNC was diagnosed. 35% (7/20) knew the differences between DNC, coma, and persistent vegetative state. Qualitatively we identified the following facilitating factors and barriers to effective DNC discussions. Facilitators included: 1) diverse team infrastructure/team availability (e.g. social work, child life, clergy) and 2) cultural sensitivity acknowledging perspectives of marginalized communities and religious/cultural differences in DNC acceptance. Barriers included: 1) perceived association with organ donation, 2) clinician bias/family lack of trust in the healthcare team, and 3) lack of clinician training in leading these discussions. Suggestions for toolkit materials included: oral and written descriptions (e.g. infographics), free online resources, and peer supports.

Conclusions: FAC members have variable knowledge regarding DNC. They lack conceptual understanding and raise concerns about trust in the diagnostic process. More work is needed to explore the benefits of focused clinician training, online educational resources, and real-time institutional peer supports to help families during this emotionally challenging time.