The Role of Pediatric Palliative Care in Complex Congenital Heart Disease: Three Illustrative Cases

Abstract

Background: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population.

Objective: This case description reviews the role of PPC teams in the care of patients with complex CHD.

Design: Case study and analysis of three pediatric patients with complex CHD who also received PPC services.

Conclusions: Involvement of PPC teams in patients with complex CHD can be beneficial for both families and caregivers. PPC teams can aid with advance care planning, goal setting, medical decision making, and bereavement support. Further research is needed to better quantify the benefits of PPC teams' involvement in this population.

Keywords: congenital heart disease; pediatric cardiology; pediatric palliative care.