Association of Palliative Care Timing With End-of-Life Quality in Children With Heart Disease.

Abstract

Context: Children with heart disease are at risk for early mortality and parents often perceive suffering at end-of-life (EOL). Involvement of pediatric palliative care (PPC) is a proposed quality measure at the EOL in children with cancer, and early PPC involvement is associated with other quality measures. The impact of early PPC involvement on EOL quality is unknown in children with heart disease.

Objectives: Evaluate the association of early PPC on potential EOL quality indicators for children with heart disease.

Methods: Children (0-21 years) treated in a cardiac ICU and who died between January 2014 to December 2022 were identified. Details about EOL, including location and mode of death, and EOL quality indicators were extracted manually from the electronic medical record. We compared demographics, EOL characteristics, and EOL quality indicators by receipt and timing of PPC (i.e. ≥30 days from (early) or <30 days of death (late).

Results: Of 140 children, 75 (54%) received early PPC and 65 (46%) received late PPC. EOL quality indicators did not vary significantly between groups, with the exception of children with early PPC were less likely to have been intubated in the last 14 days of life compared to those with late PPC (40% vs 63%, P = 0.006).

Conclusion: Our findings may indicate that quality indicators extrapolated from pediatric oncology do not apply to children with heart disease, as they have notably different disease trajectories and intervention options. We recommend defining high-quality EOL care indicators for children with heart disease as a priority.