Ethical Considerations in Critically Ill Neonatal and Pediatric Patients

The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting through a better understanding and application of ethical frameworks and communication strategies. We conducted a multidisciplinary panel session at the American Academy of Pediatrics National Conference and Exhibition in the fall of 2022 wherein we explored a myriad of ethical and communication considerations in this unique patient population, with congenital diaphragmatic hernia (CDH) as the congenital anomaly/disease framework. In this review, we will cover state of the art topics in ethics, communication, and palliative care including basic terminology, communication strategies such as trauma-informed communication, establishing/evolving goals of care, futility, medically inappropriate treatment, ethical frameworks, parental discretion, establishing milestones, internal/external intentions, and re-direction of care. These topics will be helpful to many specialties who are involved in the care of critically ill neonates and children including maternal fetal medicine, pediatrics, neonatology, pediatric critical care, palliative care, and pediatric surgery, along with the pediatric surgical subspecialties. We use a theoretical CDH case as an example and include the live audience responses from the interactive session. This primer provides overarching educational principles, as well as practical communication concepts, that can cultivate compassionate multidisciplinary teams, equipped to optimize family-centered, evidence-based compassionate communication and care.