newborn intensive care unit, parent decision making, communication, palliative care, childbirth education


Survival rates for very preterm and critically ill infants are increasing, raising complex ethical issues for health-care providers and parents who face the challenge of making end-of-life decisions for newborns. The purpose of this integrative literature review was to evaluate parental involvement in end-of-life care and decision making for their infant in the newborn intensive care unit. Findings revealed that establishing good relationships and clear communication between health-care providers and parents builds trust and eases stress placed on parents making decisions about the care of their infant. Palliative care programs provide support for parents and facilitate their decision making. Parents can be educated about how to communicate with health-care providers. Educating nurses on how to provide end-of-life care may also help improve support for parents during this difficult time. Additional research is recommended to examine parents' needs during and after end-of-life care decisions for their newborn.

Original Publication Citation

Eden, L. & Callister, L. (2009). Parent involvement in end-of-life decision making in the newborn intensive care unit: an integrative review. The Journal of Perinatal Education 19(1), 29-39.

Document Type

Peer-Reviewed Article

Publication Date


Permanent URL


The Journal of Perinatal Education





University Standing at Time of Publication

Assistant Professor