Abstract
Patients with perinatal and neonatal congenital heart disease (CHD) represent a unique population with higher morbidity and mortality compared to other neonatal patient groups. Despite an overall improvement in long-term survival, they often require chronic care of complex medical illnesses after hospital discharge, placing a high burden of responsibility on their families. Emerging literature reflects high levels of depression and anxiety which plague parents, starting as early as the time of prenatal diagnosis. In the current era of the global COVID-19 pandemic, the additive nature of significant stressors for both medical providers and families can have catastrophic consequences on communication and coping. Due to the high prognostic uncertainty of CHD, data suggests that early pediatric palliative care (PC) consultation may improve shared decision-making, communication, and coping, while minimizing unnecessary medical interventions. However, barriers to pediatric PC persist largely due to the perception that PC consultation is indicative of “giving up.” This review serves to highlight the evolving landscape of perinatal and neonatal CHD and the need for earlier and longitudinal integration of pediatric PC in order to provide high-quality, interdisciplinary care to patients and families.
Highlights
Approximately 1% have hypoplastic left heart syndrome (HLHS), which is associated with the highest mortality among congenital heart disease (CHD) patients [1]
Emerging literature indicates that the use of palliative care (PC) services in the prenatal, neonatal, and pediatric cardiac population is associated with greater use of comfort care at the end of life, fewer medical procedures, fewer deaths and hospital days in the intensive care units (ICU), decreased maternal anxiety, and improved family communication [6,7,8,9,10,11]
We describe how technological advances have improved survival in infants and children with CHD but have placed new burdens on families and medical providers, and how these may be mitigated by PC engagement
Summary
Congenital heart disease (CHD) is the most common birth defect and a leading cause of infant death regardless of gestational age, occurring in approximately 1 per 100 live births [1,2]. Of these patients, approximately 1% have hypoplastic left heart syndrome (HLHS), which is associated with the highest mortality among CHD patients [1]. Emerging literature indicates that the use of palliative care (PC) services in the prenatal, neonatal, and pediatric cardiac population is associated with greater use of comfort care at the end of life, fewer medical procedures, fewer deaths and hospital days in the ICU, decreased maternal anxiety, and improved family communication [6,7,8,9,10,11]. Pediatric PC programs have a role in supporting families at the end of life and throughout their disease course, starting at the time of diagnosis
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