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Missed Opportunities: Single-Center Insights into Prenatal Cardiac Palliative Care

Hannah Tredway1, Katie Moynihan1, Hadley Bloomhardt2

  • 1Department of Cardiology, Boston Children's Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA.

The Journal of Pediatrics
|August 23, 2025
PubMed

Insights

Prenatal palliative care (PC) for critical congenital heart disease (CCHD) is underutilized, with only 12% of patients receiving consultation. Routine PC for high-risk CCHD cases could improve care.

Area of Science:

  • Pediatric Cardiology
  • Palliative Care
  • Neonatal Medicine

Background:

  • Critical congenital heart disease (CCHD) presents significant morbidity and mortality.
  • Subspecialty palliative care (PC) consultation can improve shared decision-making and reduce family stress.
  • Current utilization of prenatal PC for CCHD is not well-defined.

Purpose of the Study:

  • To assess the utilization rate of prenatal palliative care (PC) for patients diagnosed with critical congenital heart disease (CCHD).
  • To identify factors associated with early PC consultation in CCHD patients.
  • To evaluate the need for routine PC consultation in high-risk CCHD cases.

Main Methods:

  • Retrospective study of prenatal CCHD diagnoses (2020-2023) at a tertiary center.
  • Collected data on initial hospitalization, PC consultation timing, and outcomes.
  • Defined early PC as prenatal or >30 days before death.

Main Results:

  • 506 prenatal CCHD diagnoses were identified; only 12% (n=61) had PC consultation, with 4 prenatal.
  • Early PC was more common in patients with genetic diagnoses (61%) or non-cardiac anomalies (61%).
  • 18% of patients undergoing complex neonatal surgery received PC consultation; 12% of these patients died.

Conclusions:

  • Prenatal palliative care utilization for CCHD remains low.
  • Routine PC consultation for high-risk CCHD patients is recommended to enhance care.
  • Improved PC integration can support CCHD patients and families facing complex medical journeys.
Abstract

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