Top Things to Know: Palliative Care Across Lifespan for Children With Heart Disease

Published: January 12, 2023

  1. Primary palliative care in cardiology refers to care provided by the interprofessional cardiology team in guiding patients and families to understand prognosis and prognostic uncertainty as well as process adverse events and anticipated morbidity. Primary palliative care also offers support in addressing quality of life (QOL), symptom burden, and medical decision-making.
  2. 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, collaboration with specialty palliative care can improve QOL, reduce disease burden and increase family support for children and families.
  3. Patients with a higher likelihood for future AHD including heart failure, benefit from early and longitudinal palliative care.
  4. The interprofessional primary palliative care team may include a pediatric cardiologist, advanced heart disease (AHD) cardiologist, cardiac intensivist, cardiac surgeon, cardiac hospitalist, nurse, social worker, psychologist, chaplain, and a pediatrician.
  5. Clinical criteria that may warrant specialty palliative care consultation include a cardiac diagnosis with an estimated 1-year mortality of >20%, single ventricle physiology with complication, cardiomyopathy with severe dysfunction or restrictive physiology or the need for extracorporeal membrane oxygenation (ECMO) support.
  6. Comprehensive screening for palliative care consultation in patients with AHD includes assessment of physical symptoms, QOL, and psychological health daily while hospitalized, and at all routine follow-up visits.
  7. Specific training in primary palliative care in pediatric cardiology, pediatric cardiovascular surgery, and adult congenital heart disease (ACHD) programs to include communication techniques, pain and symptom management, psychosocial, spiritual, and cultural aspects of care, and bereavement is important so that clinicians can be prepared to offer comprehensive, competent palliative care to patients with AHD.
  8. A vital part of a pediatric cardiology programs is following up with bereavement services to support caregivers and families of children and young adults with AHD who die.
  9. Symptom management with pharmacological and alternate therapies for dyspnea/air hunger, HF symptoms, gastrointestinal symptoms, pain, and anxiety are an important component of palliative and end of life care for patients with AHD.
  10. Disparities exist in all facets of health care including palliative care delivery for the AHD population. Further study is needed to understand how these disparities impact care delivery and outcomes in patients with AHD.


Blume ED, Kirsch R, Cousino MK, Walter JK, Steiner JM‚ Miller TA, Machado D, Peyton C, Bacha E, Morell E; on behalf of the American Heart Association Pediatric Heart Failure and Transplantation Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young. Palliative care across the life span for children with heart disease: a scientific statement from the American Heart Association [published online ahead of print January 12, 2023]. Circ Cardiovasc Qual Outcomes. doi: 10.1161/HCQ.0000000000000114