Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor

• Published in: The Journal of pediatrics 2018-05, Vol.196, p.116-122.e3
• Main Authors: Arnolds, Marin, Xu, Lucy, Hughes, Patrick, McCoy, Jennifer, Meadow, William
• Format: Article
• Language: English
• Subjects: ethics; gray zone; moral distress; NICU; parent experiences; poor prognosis; prematurity
• ISSN: 0022-3476; 1097-6833
• DOI: 10.1016/j.jpeds.2017.12.050

To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as “worth it,” regardless of outcome. Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.