Objective: To examine how clinical decisions are made at the end of life for infants born with specific fatal and disabling conditions in NICUs in Jordan from the perspectives of neonatal health care providers.
Design: A cross-sectional survey of neonatal nurses and physicians.
Setting: Twenty-four NICUs in Jordan.
Participants: Participants included 213 nurses and 75 physicians who provided direct care for infants in NICUs.
Methods: Using the EURONIC questionnaire, we asked participants to recall the last experiences of end-of-life decision making in which they were involved. The participants described factors and outcomes related to those experiences, and we used descriptive and inferential statistics to examine these factors.
Results: In 83% of the recalled situations, the physicians in charge of the infants' care or who were on duty were the primary decision makers. Parents, nurses, ethics committees, and NICU heads were less involved. The infants' primary diagnoses were significantly associated with the nature of decisions regarding end-of-life care (p < .001). Age, importance of religion, having their own children, and involvement in research activities were factors that significantly predicted nurses' perceived levels of involvement in decision making (χ2[4] = 23.140, p < .001).
Conclusion: Our results suggest the need to improve clinical approaches to decision making regarding end-of-life care for infants in NICUs in Jordan to be more family focused and team based. This process should include parents, physicians, neonatal nurses, and ethics committees.
Keywords: Jordan; end-of-life care; intensive care; neonates; newborn; nursing ethics.
Copyright © 2020. Published by Elsevier Inc.