P0455 / #1198: CARING FOR ACTIVELY DYING CHILDREN AND THEIR PARENTS IN THE PEDIATRIC ICU: A MIXED METHODS STUDY – PRELIMINARY QUANTITATIVE FINDINGS

Abstract

Aims & Objectives: End-of-life (EOL) care is steeped in tradition, locally bound, and historically has not been informed by parent perspectives. This study uses a mixed methods design (QUAN → qual) to explain and contextualize quantitative clinical data with parent interviews about their child’s EOL care. Here, we present QUAN data describing a cohort of children with acute respiratory failure who died following withdrawal of support. Methods: Secondary analysis of the RESTORE dataset including demographics, baseline characteristics and care trajectories for up to 5 days prior to death. Results: Data reflect 67 patients from 24 U.S. PICUs. Nonsurvivors were primarily white (79%), non-Hispanic (78%) with PCPC/POPC ≤2 (69%). Diagnoses were acute (33%), complex-chronic disease (33%), or cancer (34%). Primary cause of death included respiratory (40%) or multisystem organ failure (27%). Prior to death, daily pain scores were 0 (modal), SBS were -1/-2 (modal). Opioid and benzodiazepine doses ranged from 6.0-4.4 mg/kg and 4.8-3.8 mg/kg, repectively. The nursing manpower use score (NEMS) increased from 33 to 36. On the day of death, 12% were supported on ECMO, 76% on vasopressors, 29% on dialysis and patients had a median of 5 medical devices in place. Eleven (16%) patients were extubated prior to death. Conclusions: Parents’grief following their critically ill child’s death is shaped by their memories around EOL care in the PICU. As patients approach EOL, nursing care requirements increased and many patients died with invasive devices/interventions, but with little to no pain. Qualitative and mixed-methods findings are forthcoming.