End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service

Abstract

Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants' end-of-life care. Design. A retrospective chart review using the “End of Life Chart Review” from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children's Hospital of Wisconsin who died at <1 year of age during the 4-year period between January 1, 1994, and December 31, 1997. The patients' place of death, medical interventions performed, and emotionally supportive services provided to families were analyzed. Results. Among the 196 deaths during the study period, 25 (13%) of these infants and families had palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations. Conclusions. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.