Children with advanced heart failure (HF) continue to experience substantial physical and emotional burdens despite advances in cardiac and transplant care. A retrospective review evaluated the implementation of a pediatric palliative care (PPC) program integrated into HF management at a tertiary care and transplant center. The findings were published in the Journal of Hospice and Palliative Nursing.

The review included children managed between July 1, 2019, and June 30, 2024, following the integration of specialized PPC services into HF care. The program was developed through a structured process that included gap assessment, service development, referral pathway establishment, awareness initiatives, implementation, and outcome evaluation.

PPC services were provided regardless of treatment goals. The program focused on symptom management, emotional support, advanced care planning, and alignment of medical care with family values.

A total of 47 children were included in the review. The mean age was 10 years (standard deviation [SD], 4 years). Approximately half of the children had undergone heart transplantation. During the study period, 20 children (42.6%) died.
Family distress was reported in all cases. Mood disturbances and anxiety affected 59.6% of children, while pain was documented in 40.4% of patients with advanced cardiac disease.

The review highlighted the complex emotional, psychological, and symptom-related needs associated with pediatric HF. It also underscored challenges related to parental anxiety and end-of-life care in children with advanced heart disease.