Ethical dilemmas in the management of infants with necrotizing enterocolitis totalis.

PURPOSE: Necrotizing enterocolitis (NEC) totalis is a devastating disease of the newborn intestine. A precise clinical definition of the extent of gastrointestinal involvement is lacking in the existing literature, and the clinical outcomes are typically viewed as grim. METHODS: Herein, we present a series of clinical case examples of patients with varying degrees of NEC totalis and other co-morbid conditions, with possible anticipated outcomes based on current data. RESULTS: We define the key ethical issues and provide a framework and discussion of the ethical issues involved in the care of patients with NEC totalis and recommendations of how to approach discussions with the family of these patients We discuss the ethical considerations for both the providers caring for these patients, and the patient's family members. CONCLUSION: The management of patients with NEC totalis is complex and ethically challenging. LEVEL OF EVIDENCE: V.