Skip to main content
2024 ASBH Annual Conference Main banner
Icon Legend
This session is not in your schedule.
This session is in your schedule. Click again to remove it.
Back

Paper Presentation

Clinical Ethics

Session: Clinical Ethics: Pediatric Ethics

Pediatric Clinician Viewpoints on Treatment Options for Infants with Single-Ventricle Physiology with and without Chromosomal Abnormalities

Saturday, September 21, 2024
11:30 AM – 12:30 PM CT
Location: Midway 5 (First Floor)
Abstract: Historically, infants born with hypoplastic left heart syndrome (HLHS) or other single-ventricle physiology (SVP) conditions, were only offered comfort care as the condition was considered untreatable and uniformly fatal. However, improvements in pediatric heart transplantation and the advent of a three-staged palliative surgery (Norwood procedure) led to significant improvement in survival for infants born with SVP.

Decision-making for infants with SVP is complicated by the burden of treatment and one-quarter of these children have chromosomal or other congenital abnormalities. Prior surveys found that even as surgical outcomes improved, many physicians would choose comfort care measures for their own child.

In this paper, we report on a 2024 survey of pediatric cardiac surgeons, pediatric cardiologists, neonatologists, and pediatric bioethicists (n= 301) regarding a child with (A) isolated HLHS; (B) trisomy 18 and HLHS; and (C) trisomy 21 and SVP. Survey questions for the different scenarios focused on what treatments are currently offered at respondents’ institution, what should be offered, willingness to provide comfort care, willingness to perform surgical treatment over parental objection, and what they would choose for their own child. In each scenario: 1) a significant number of clinicians would choose termination or comfort care for their own child and would offer comfort care for patients; and 2) most clinicians would respect parental choice, even if they disagreed with it. Our data also explored the effect that pediatric specialty and chromosomal abnormalities had on surgical recommendations for children with SVP. The ethical issues raised by our findings are discussed.

Learning Objectives:

After participating in this conference, attendees should be able to:
  • Examine the ethics of offering comfort care measures for children with HLHS given current day mortality and morbidity outcomes with surgery.
  • Compare what physicians offer parents for children with HLHS versus physician preferences for their own child.
  • Examine the impact of chromosomal abnormalities on surgical recommendations for children with single-ventricle physiology.
Rupali Gandhi, MD, JD, FAAP – Advocate Children's Heart Institute; Steven Leuthner, MD, MA, FAAP – Medical College of Wisconsin; Mark Mercurio, MD, MA, FAAP – Yale School of Medicine; Lainie Ross, MD, PhD, FAAP – University of Rochester School of Medicine and Dentistry