Palliative Care Across the Lifespan for Children with Heart Disease

Last Updated: April 27, 2023

Disclosure: None
Pub Date: Thursday, Jan 12, 2023
Author: Nelangi Pinto, MD, MS
Affiliation: Seattle Children’s Hospital, University of Washington

It is estimated that 7 million children could benefit from the provision of specialized pediatric palliative care services around the world and children with heart disease are a key proportion of that estimate. According to the World Health Organization in 2020 only 14% of those in need of palliative care services receive them. Palliative care services for children facing life threatening illnesses focus on improving family centered outcomes including holistic relief of suffering, quality of life, and informed decision making. Provision of these services has been shown to improve symptom burden, quality of life and mental health outcomes in patients and families. There is increasing recognition of the need to provide these services alongside cure directed and life prolonging therapies and not just in lieu of them. Organizations including the American Academy of Pediatrics and National Coalition for Hospice and Palliative Care have called for the provision of equitable access and advancement of palliative care services for the pediatric population.

The present AHA statement highlights the important benefits of palliative care services in the pediatric heart disease population. Patients and families with many forms of complex pediatric heart disease or as termed in this statement “advanced heart disease (AHD)” are exposed to an ongoing risk of mortality, a lifetime of morbidity, and often highly uncertain prognoses even with life prolonging interventions. Furthermore, patients and families with AHD often face complex care coordination and a cascade of challenging decisions including those regarding highly intensive interventions for life prolongation.

While the benefits of palliative care provision in the AHD population have been shown and recognized by clinicians, integration into cardiac care remains highly variable often because of barriers including misperceptions among health care professionals and patients and a lack of self-efficacy among caregivers. In the current AHA statement, Blume et al provide critical and timely information on not only the “need for” but the “how to” regarding the integration of palliative services in the care of children with heart disease. The authors provide a framework for thinking through the role of palliative care and its implementation across several important domains including symptom management, quality of life, advanced care planning and end of life considerations. Additionally, Blume et al focus on the complementary aspects of provision of palliative care from “specialty” palliative care teams and “primary” interprofessional cardiology teams and clear strategies for engagement at these different levels. The statement also importantly challenges our field to further investigate and address the inequities that exist in the provision of these services that unfortunately pervade all aspects of pediatric cardiac care.

Congenital heart disease remains a leading cause of neonatal mortality and morbidity. All forms of pediatric heart disease even with improving survival, have a significant impact on quality of life not only for patients and for their families. Despite the recognition of the importance of palliative care services in improving patient centered and family centered outcomes for those facing life threatening heart disease, the gap in optimal provision of these services and misperception of what they entail remain. The Scientific Statement by Blume et al provides a key resource for health care professionals in our field to establish a shared understanding of the goals of palliative care, its benefits, and concrete considerations to for implementation in the care we provide our patients and their families.


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

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-- The opinions expressed in this commentary are not necessarily those of the editors or of the American Heart Association --