When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant

When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant

Hansen K; Edwards L A; Luong R; Yohannes K; Halpern-Felsher B; Cohen H; Kaufman B

Circulation. Conference

2018

advance care planning; adolescent; death; outpatient; prognosis; school child; cancer prognosis; malignant neoplasm; heart failure; conference abstract; human; child; controlled study; perception; conversation; cardiomyopathy; heart graft

Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has been demonstrated, but the ACP preferences of adolescents with heart disease and their parents have not been evaluated. We aimed to describe and compare ACP preferences of adolescents with CMHF/HTx and their parents. Method(s): Outpatient adolescents with CMHF/HTx, aged 12-18y, and their parents completed a self-administered survey from March to May 2018. The survey evaluated preferences regarding the importance of ACP, sharing of prognostic information, and timing of ACP discussions. Participants answered independently. In addition, parents were asked their perception of their child's response. Adolescents' and parents' survey responses were compared. Survey responses were recoded as dichotomous variables and compared using McNemar's test. Result(s): Twenty-five dyads (mean adolescent age 15.0 +/- 1.8 years) completed the survey. Most adolescents (71%) considered their current health to be very good or excellent. ACP importance was ranked moderately or extremely important by 44% adolescents compared to 88% parents (p=0.006). Most adolescents (88%) reported that they wanted their doctor to inform them as soon as their doctor knew they were dying; in contrast, only 44% of parents wanted the doctor to share this information with their child (p=0.003). The majority of parents (84%) and adolescents (80%) wanted the adolescent to be involved in end-of-life (EOL) decisions. Conclusion(s): While many adolescents with CMHF/HTx did not report that ACP was of great importance, they do not want to be kept in the dark if death is near. Adolescents with CMHF/HTx reported that they want to be told as soon as the physician knows they are going to die and want to be involved in EOL decisions. Parents want their adolescent to be involved in EOL decisions, but are less likely to want to share a terminal prognosis with the adolescent. These results highlight discrepancies between adolescent and parent views regarding EOL conversations. More research is needed to inform effective EOL communication between parent, adolescent, and provider.

June 2019 List