Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care:...

To explore parents' needs during end-of-life decision-making and to understand their experiences in a neonatal intensive care unit (NICU) following the death of their child.

This observational, retrospective study was conducted in the NICU of a tertiary-level hospital. Data were collected using a structured questionnaire administered to parents following the death of their neonate. Three main domains were explored: information and communication, the decision-making process and comfort-focused care.

During the study period, 51 neonates died after treatment was redirected towards comfort-focused care. Of the 102 eligible parents, 52 participated. Information and communication were highly rated (mean 6.5/7), particularly the sensitive delivery of information. Parents generally felt supported during decision-making (mean 5.6/7), and most (76.9%) preferred professional guidance. However, only half perceived concordance between their preferences and the final decision. Comfort-focused care was also positively evaluated (mean 6.13/7), although opportunities to choose the place of death were limited. The questionnaire demonstrated acceptable internal consistency (α = 0.72).

Parents value shared decision-making that respects their values while providing professional guidance. These findings highlight the importance of sensitive communication, adequate time for reflection, ongoing support throughout the decision-making process, and meaningful opportunities to say goodbye.