The article elaborates on recommendations from The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life, a new and expanded edition of a classic book, which includes a major new section on pediatric decision-making. It builds on research and practice insights from pediatric subspecialties, pediatric palliative care, and interdisciplinary bioethics.

The authors of the article are Nancy Berlinger, PhD, a research scholar at The Hastings Center and lead author of Guidelines; Raymond Barfield, MD, PhD, who directs  the Pediatric Quality of Life/Palliative Care Program at Duke University Medical Center; and Alan R. Fleischman, MD, a clinical professor of epidemiology and population health at Albert Einstein College of Medicine and a Hastings Center board member and Fellow. Drs. Barfield and Fleischman were members of the expert working group for the research project that produced the new edition of Guidelines.

The article responds to the concerns of doctors and other clinicians who treat seriously ill children and report a significant lack of knowledge about ethical and legal issues that affect decision-making. “These knowledge gaps and professional concerns may lead to tension within teams and confusion about how to provide good care,” the article says.

The article discusses the special challenges of making decisions in the best interests of newborns in the neonatal intensive care setting. “More than half of all pediatric deaths occur in the first year of life, often as the result of extreme prematurity,” the authors explain. Unfortunately, for many babies, the neonatal intensive care unit (NICU) is “an end-of-life setting,” where clinicians must create opportunities to discuss the child’s best interests, parents’ perspectives, and their own views. Further, the authors call for “family-centered approaches that prioritize family preferences and values in decision-making for premature infants at the threshold of viability. . .”

Neonates and young children have not yet formed values that can guide their parents or other decision-makers. However, even very young children can hold and express preferences about what they like or try to avoid. “Professionals should strive to help children and parents recognize these preferences and should talk concretely and compassionately about the impact of a treatment on the child’s experience of living,” thePediatricsauthors write.

Given the importance of electronic media to many children and adolescents, the authors say that they “may find electronic decision-making tools engaging and useful in clarifying their preferences.”

The new pediatrics guidelines stress the importance of palliative care. “Promising parents that a child’s pain and symptoms will be expertly managed is part of what professionals can do, even amid great uncertainty about prognosis or long-term treatment consequences,” the article states. “A child’s access to pain and symptom relief should not depend on an individual physician’s willingness to collaborate with palliative care colleagues or a subjective judgment about whether it’s time to involve them.”

Both The Hastings Center Guidelines and the Pediatrics article describe how the Affordable Care Act improves access to hospice services for seriously ill children who are still receiving curative treatment, relieving parents of the burden of deciding when to forgo treatment.