Palliative Care Across the Life Span for Children With Heart Disease

Published: January 12, 2023

parents visiting young child in hospital bed
  • Primary palliative care refers to care provided by the interprofessional cardiology team in guiding patients and families to understand prognosis and prognostic uncertainty and process adverse events and anticipated morbidity. Primary palliative care also offers support in addressing quality of life (QOL), symptom burden, and medical decision-making.
  • Specialty palliative care refers to consultation from a subspecialty trained palliative care team, and in patients with advanced heart disease (AHD), as symptoms become more complex and difficult to manage, specialty palliative care can improve QOL, reduce disease burden and increase family support for children and families.
  • Specific training in primary palliative care in pediatric cardiology, pediatric cardiovascular surgery, and adult with congenital heart disease (ACHD) training programs is important so that clinicians can be prepared to offer comprehensive, competent palliative care to patients with AHD.