Abstract 15500: Parental Perspective on End-of-Life Care Discussions for Children with Advanced Heart Disease

Abstract

Introduction: To date, there have been no systematic analyses of parental perspectives on end-of-life (EOL) discussions regarding children with advanced heart disease (AHD). We aimed to determine bereaved parent perspectives on provider communication and EOL care among children with AHD.

Methods: The Survey about Caring for Children with Heart Disease at EOL (SCCHD) was distributed to 116 families of patients < 21 years old who died of AHD in one of two large pediatric heart centers between 2007 and 2009. Details of hospital course and type of death were abstracted from medical records.

Results: Fifty parents (43%) responded a median of 2.7 yrs after the child’s death. The median age at death was 7.5 months (range 3.6 days to 20.4 years) with a length of last hospitalization of 25 days (range 1 to 468 days). At EOL, 90% of children were intubated and 48% were on extracorporeal support. Seventy-seven percent died during withdrawal of life support and 21% during resuscitation. Parents realized that their child had no realistic chance of survival at a median of 2 days prior to death (range 0 to 30 days). Most parents (82%) recalled a discussion with the team stating that their child had no realistic chance of survival, and 86% felt they understood the discussion a lot or a great deal. This discussion took place within 1 day of death in 31% of cases, and within 3 days in 56%. Interestingly, the majority of parents (83%) thought the timing of this discussion was appropriate. Only 39% of parents recalled a specific discussion of do-not-resuscitate (DNR) status, and 11% said it occurred too late; 38% of parents had considered requesting a DNR order prior to the discussion with the medical team. Only 54% of families reported being either somewhat or very prepared for the way their child died, and 48% reported that their child had experienced somewhat, a lot, or a great deal of suffering at EOL. Pediatric palliative care teams were involved in 16% of the cohort.

Conclusions: Children with AHD receive intensive interventions at EOL. Most parents realize that death is likely only when it is imminent. Provider communication occurs late, with some families considering a DNR order prior to physician discussions. Strategies for improved advanced care planning are needed for children with AHD.