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Afonso NS, Ninemire MR, Gowda SH, et al. Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients. Children (Basel). 2021;8(7)doi: 10.3390/children8070548.
Afonso, N. S., Ninemire, M. R., Gowda, S. H., Jump, J. L., Lantin-Hermoso, R. L., Johnson, K. E., Puri, K., Hope, K. D., Kritz, E., Achuff, B. J., Gurganious, L., & Bhat, P. N. (2021). Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients. Children (Basel, Switzerland), 8(7), . https://doi.org/10.3390/children8070548
Afonso, Natasha S, et al. "Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients." Children (Basel, Switzerland) vol. 8,7 (2021). doi: https://doi.org/10.3390/children8070548
Afonso NS, Ninemire MR, Gowda SH, Jump JL, Lantin-Hermoso RL, Johnson KE, Puri K, Hope KD, Kritz E, Achuff BJ, Gurganious L, Bhat PN. Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients. Children (Basel). 2021 Jun 25;8(7). doi: 10.3390/children8070548. PMID: 34201973; PMCID: PMC8304963.
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Children (Basel). 2021 Jun 25;8(7). doi: 10.3390/children8070548.

Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients.

Children (Basel, Switzerland)

Natasha S Afonso, Margaret R Ninemire, Sharada H Gowda, Jaime L Jump, Regina L Lantin-Hermoso, Karen E Johnson, Kriti Puri, Kyle D Hope, Erin Kritz, Barbara-Jo Achuff, Lindsey Gurganious, Priya N Bhat

Affiliations

  1. Sections of Critical Care Medicine and Cardiology, Department of Pediatrics, Texas Children's Hospital and Baylor College of Medicine, Houston, TX 77030, USA.
  2. Section of Neonatology, Department of Pediatrics, Texas Children's Hospital and Baylor College of Medicine, Houston, TX 77030, USA.
  3. Section of Palliative Care Medicine, Department of Pediatrics, Texas Children's Hospital and Baylor College of Medicine, Houston, TX 77030, USA.
  4. Section of Cardiology, Department of Pediatrics, Texas Children's Hospital and Baylor College of Medicine, Houston, TX 77030, USA.

PMID: 34201973 PMCID: PMC8304963 DOI: 10.3390/children8070548

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.

Keywords: congenital heart disease; neonatology; palliative care; perinatology

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