Background: Losing an infant is difficult for parents to face. To improve EOL care for dying neonates and their families, NICU nurses need to overcome obstacles and implement supportive behaviors. Understanding the size of obstacles and supportive behaviors will better enable NICU nurses to provide quality EOL care. Objectives: To determine the largest obstacles and supportive behaviors in NICU EOL care. Methods: A descriptive quantitative study of a random national sample of 1058 NICU nurses who were members of NANN (National Association of Neonatal Nurses). The National Survey of NICU Nurses' Perceptions of End-of-Life Care questionnaire was mailed twice yielding 234 usable questionnaires for a response rate of 26%. Results: Three themes emerged in the top rated obstacles: (a) obstacles related to families, (b) obstacles regarding language and communication, and (c) obstacles concerning ethical dilemmas. The lowest rated obstacles were nurses believing that life-saving measures/treatments were prematurely discontinued and unit visiting hours being too liberal. The top eight supportive behaviors included helping families cope with the infant's death and those involving helpful physician behaviors. Lowest rated supportive behaviors were those related to the nurses' own family death experience and behaviors promoting nurse convenience. Conclusions: Obstacles and supportive behaviors for NICU EOL care have been identified. Issues regarding families, communication, and ethical dilemmas need to be addressed. Efforts should be made to more quickly align the plan of care with the projected outcome to limit both infant suffering and nurse distress from inappropriate use of life-extending measures.



College and Department

Nursing; Nursing



Date Submitted


Document Type





NICU, neonatal, terminal care, end-of-life, nurse attitudes

Included in

Nursing Commons