Shared decision-making, research ethics, and outcomes reporting are important considerations in neonatal cardiac care, according to a recent guidance.1 “As we continue to develop as a medical community, we realize that the complexities associated with neonates with cardiac disease require a collaborative and cohesive strategy,” says Jennifer Needle, MD, MPH, one of the authors of the guidance and an associate professor of pediatric critical care and bioethics at the University of Minnesota.
The mission of the Neonatal Cardiac Care Collaborative, formed in 2018, is to improve medical care for the neonate with congenital and acquired heart disease and enhance outcomes. (Learn more about this here.) To support this mission, the collaborative set a goal to develop guidelines to establish a continuum of care for neonates requiring congenital heart disease surgery, from fetal life to outpatient follow-up. The guidance addresses the ethical issues that have resulted from the rapid advancement of neonatal cardiac care. “Clinical ethicists serve numerous roles in the care of neonatal cardiac patients,” Needle notes.
Needle encourages ethicists to facilitate communication between the medical team and families while understanding the family’s goals and values as an infant’s clinical condition changes. Ethicists should contextualize burdens vs. benefits in treatment options and mitigate moral distress of neonatal cardiac care providers. “Ideally, ethics should be involved in complex neonatal cardiac cases as early as possible,” Needle says.
This includes before the birth of the neonate during antenatal counseling, if any critical decisions must be made. Ethicists can facilitate shared decision-making between healthcare providers and the family. “Ethicists have expertise in clarifying parents’ goals and values for the infant in the context of the potential burdens or benefits of the medical care,” Needle explains.
Ethicists are uniquely positioned to address any conflicts that arise by weighing the competing interests of all parties objectively.
“This gives a voice to considerations outside of the typical clinical care of the neonatal cardiac patient,” Needle adds.
REFERENCE
1. Madrigal VN, Feltman DM, Leuthner SR, et al. Bioethics for neonatal cardiac care. Pediatrics 2022;150:e2022056415N.
The complexities associated with neonates with cardiac disease require a collaborative and cohesive strategy. Shared decision-making, research ethics, and outcomes reporting are important considerations.
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