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

摘要

The 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 prognosis, was essential, yet challenging, for Angela's care team. Issues including religious objection to life-limiting treatment, family‐team communication, surrogate decision-making, and moral distress of health care team members are discussed. The analysis of this case aims to help clinicians involved in end-of-life care in the NICU setting respond to families' spirituality in ways that promote ethical care, facilitate family decision-making, and reduce the potential for moral distress among clinicians.