Ethical Considerations in the Neonatal Intensive Care Unit

Lisa J. Sundean, RN, MSN, MHA; Jacqueline M. McGrath, PhD, RN, FNAP, FAAN


NAINR. 2013;13(3):117-120. 

In This Article


The ethical principle of autonomy refers to self-determination and encompasses veracity, disclosure/informed consent, confidentiality, and promise keeping.[4] Applying the principle of autonomy to ethics in the NICU creates a challenge. First, infants cannot make autonomous decisions; therefore, parents make autonomous decisions on behalf of their babies. Next, conflicts arise from the varying perspectives from which to present medical information to parents. Considering the principle of autonomy, experts agree disclosure of evidence-based information and consideration of family values is a reasonable approach.[1] By providing parents with the most current evidence-based knowledge about the condition and prognosis of their child and assuming parents will act in the best interests of their child, providers demonstrate respect for autonomy.

Conflicts arise when providers and parents disagree about the best interests of the infant. The mother who plans to breastfeed her infant feels a loss of autonomy when she is told her 24-week infant with severe respiratory distress syndrome cannot directly breastfeed. She insists the baby must at least receive colostrum as soon as possible despite plausible explanations about her baby's immature gastrointestinal system, risks for necrotizing enterocolitis, and aspiration pneumonia. The mother feels a loss of autonomy over the care of her baby. Although direct breastfeeding is counter-indicated for the baby, the nurse supports the mother's autonomy by encouraging her to use a breast pump so her breast milk can be frozen and used when the infant is ready for enteral feedings. In some NICUs, colostrum is used routinely for mouth care in the days before an infant is ready to begin enteral feedings.[5] Teaching the mother to bond with her baby using this method during the time before the start of enteral feedings can increase her sense of autonomy. During the crisis of preterm birth, clinicians can address the ethical principle of autonomy by offering alternative ways for the mother to engage in care for her infant.

Disclosure of objective evidence to aid parent decision-making is as important as respecting the cultural and moral beliefs of parents in making autonomous decisions.[2] Cultural differences between families and providers can result in decision-making challenges, restricting autonomy for families. A 26-week preterm infant of a Jehovah's Witness family requires red blood cell transfusion for symptomatic anemia. The family opposes the transfusion on the basis of their religious beliefs. The providers collaborate with the family to understand better the effects of anemia, to recognize symptoms, alternatives to red blood cell transfusion, and the point at which transfusion is necessary. Disclosure of information in a culturally sensitive manner allows the parents to engage as equal partners in the decision-making process.