God can still save my granddaughter: The role of spirituality in ethical decision-making for a critically ill neonate

AbstractThe newborn intensive care unit (NICU) is often a setting for end-of-life care. While previous publications acknowledge the role that spirituality may play in pediatric end-of-life care, how these beliefs and values can affect the process of decision-making by parents, relations between clinicians and families, and perceptions among team members, may not, as yet, be well understood. This paper uses a complex case to explore the role of spirituality in end-of-life decision-making in the NICU setting. The case presentation involves a 34-week gestation African American infant (called Angela in the paper) with congenitally acquired cytomegalovirus. After several weeks of clinical improvement, Angela's condition deteriorated, necessitating end-of-life decision-making. Angela's parents' religious beliefs and values became central to all subsequent family decision-making pertaining to Angela's care. Understanding these beliefs and values, and the extent to which they could be accommodated given Angela's ...