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Review
. 2023 Feb;16(2):e000114.
doi: 10.1161/HCQ.0000000000000114. Epub 2023 Jan 12.

Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association

Elizabeth D Blume, Roxanne Kirsch, Melissa K Cousino, Jennifer K Walter, Jill M Steiner, Thomas A Miller, Desiree Machado, Christine Peyton, Emile Bacha, Emily Morell; American Heart Association Pediatric Heart Failure and Transplantation Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young
Review

Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association

Elizabeth D Blume et al. Circ Cardiovasc Qual Outcomes. 2023 Feb.

Abstract

Aim: This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease.

Methods: A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review. Human subject studies and systematic reviews published in English in PubMed, ClinicalTrials.gov, and the Cochrane Collaboration were included. Structure: Although survival for pediatric congenital and acquired heart disease has tremendously improved in recent decades, morbidity and mortality risks remain for a subset of young people with heart disease, necessitating a role for palliative care. This scientific statement provides an evidence-based approach to the provision of primary and specialty palliative care for children with heart disease. Primary and specialty palliative care specific to pediatric heart disease is defined, and triggers for palliative care are outlined. Palliative care training in pediatric cardiology; diversity, equity, and inclusion considerations; and future research directions are discussed.

Keywords: AHA Scientific Statements; cardiology; congenital heart disease; heart diseases; morbidity; palliative care; pediatric.

PubMed Disclaimer

Conflict of interest statement

The American Heart Association makes every effort to avoid any actual or potential conflicts of interest that may arise as a result of an outside relationship or a personal, professional, or business interest of a member of the writing panel. Specifically, all members of the writing group are required to complete and submit a Disclosure Questionnaire showing all such relationships that might be perceived as real or potential conflicts of interest.

Figures

Figure 1.
Figure 1.. Primary and specialty palliative care for patients with pediatric acquired and congenital heart disease.
Primary palliative care consists of symptom management, prognostic awareness, decision-making support, and quality-of-life issues that are supported by the primary cardiology team of health care professionals. Specialty palliative care can be consulted for symptoms and decision-making that are more complex‚ often involving conflict resolution or transition to end-of-life. Adapted from Chuzi et al with permission from Springer Nature.
Figure 2.
Figure 2.. Primary palliative care by cardiology clinicians.
Episodes of care (green circle) for which increased attention to the tenets of primary palliative care by cardiology clinicians (blue circle) are depicted. Cath indicates cardiac catheterization; ECMO, extracorporeal membrane oxygenation; NYHA, New York Heart Association; QOL, quality of life; and VAD, ventricular assist device.
Figure 3.
Figure 3.. Potential triggers for specialty palliative care consultation in pediatric heart disease.
These diagnoses, interventions, events, and markers of significant disease burden should prompt the primary cardiac health care professional to consider specialty palliative care consultation alongside ongoing primary palliative care. ECMO indicates extracorporeal membrane oxygenation; ICD, implantable cardiac defibrillator; and VAD, ventricular assist device
Figure 4.
Figure 4.. A framework for structured conversations for pediatric extracorporeal membrane oxygenation (ECMO) support.
Reprinted from Moynihan et al with permission from Wolters Kluwer Health, Inc.
See this image and copyright information in PMC

References

    1. Gilboa SM, Devine OJ, Kucik JE, Oster ME, Riehle-Colarusso T, Nembhard WN, Xu P, Correa A, Jenkins K, Marelli AJ. Congenital heart defects in the United States: estimating the magnitude of the affected population in 2010. Circulation. 2016;134:101–109. doi: 10.1161/CIRCULATIONAHA.115.019307 - DOI - PMC - PubMed
    1. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 4th ed. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018.
    1. Morell E, Moynihan K, Wolfe J, Blume ED. Palliative care and paediatric cardiology: current evidence and future directions. Lancet Child Adolesc Health. 2019;3:502–510. doi: 10.1016/S2352-4642(19)30121-X - DOI - PubMed
    1. Naef N, Liamlahi R, Beck I, Bernet V, Dave H, Knirsch W, Latal B. Neuro-developmental profiles of children with congenital heart disease at school age. J Pediatr. 2017;188:75–81. doi: 10.1016/j.jpeds.2017.05.073 - DOI - PubMed
    1. Marshall KH, D’Udekem Y, Sholler GF, Opotowsky AR, Costa DSJ, Sharpe L, Celermajer DS, Winlaw DS, Newburger JW, Kasparian NA. Health-related quality of life in children, adolescents, and adults with a Fontan circulation: a meta-analysis. J Am Heart Assoc. 2020;9:e014172. doi: 10.1161/JAHA.119.014172 - DOI - PMC - PubMed