Integrating Palliative Care in the Care of Children With Heart Failure: Findings and Recommendations From a 5-Year Experience in a Tertiary Care Center

Heart failure is becoming an increasingly cause of hospital admissions in the pediatric population, linked to significant morbidity and mortality. Despite advances, end-stage heart disease still causes significant symptoms, extended hospitalizations, and reduced quality of life. Pediatric palliative care (PPC), aimed at improving quality of life through symptom management, emotional support, and advanced care planning, can benefit these children. This project aimed to establish specialized PPC services for children with heart failure, regardless of their care goals, at a tertiary care and transplant center in Saudi Arabia. This project is presented with a retrospective review spanning from July 1, 2019, to June 30, 2024. The steps toward integration included (1) assessing gaps, (2) developing services, (3) setting up a referral system, (4) raising awareness, (5) implementing the program, and (6) measuring outcomes. Of the 47 children included, the average age was 10 years (SD = 4), half had a transplant, and 20 (42.6%) died during the period. The main issues were family distress (100%), children's mood issues and anxiety (59.6%), and pain (40.4%). Implementing PPC improves quality of life and ensures medical care aligns with family values. Children's emotional distress, parental anxiety over the disease's unpredictable course, and aggressive end-of-life care are key issues to address.