Purpose of review: Advanced heart failure in children is characterized by dynamic clinical trajectories, uncertainty of prognosis, and intermittent need for difficult decision-making, often related to novel therapeutic interventions with uncertain impact on quality of life. This review will examine the current role of palliative care to support this unique population.
Recent findings: Pediatric heart failure patients commonly die in ICUs with high burden of invasive therapies together with end of life care needs. In addition, several studies advocate for integration of palliative care early in disease trajectory, not only focused on end of life care. Many advocate for the core tenets of palliative care (symptom management, communication of prognosis, and advanced care planning) to be provided by the primary cardiology team, with consultation by pediatric palliative care specialists. There is also a consensus that palliative care training should be incorporated into pediatric advanced heart disease training programs.
Summary: Palliative care is an important component of pediatric heart failure care. Research and quality improvement efforts are needed to determine the most effective palliative care interventions for children with advanced heart disease. Provision of palliative care is an essential component of training for pediatric heart failure and transplant specialists.