Staff experiences with end-of-life care in the pediatric intensive care unit

The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the literature. This qualitative, descriptive study consisted of semistructured interviews conducted with professional caregivers of a child who died in a large, multidisciplinary PICU. Interviews were audiotaped, transcribed and subjected to content analysis. Main results Interviews (n = 32) were conducted with 29 staff members regarding 8 patient deaths. Participants included nurses, physicians, and psychosocial support personnel. The overall tone of the interviews was positive, and participants expressed satisfaction with their work and the work of their colleagues. The major themes of staff members experiences were (1) importance of communication, (2) accommodating the wishes of others despite personal preferences, (3) ambiguity about the use of technology, (4) sadness, and (5) emotional support. Descriptions of moral distress were seen infrequently. Many welcomed the sadness they experienced as a sign of their humanity and emotional availability, but did not feel adequately supported in dealing with their grief.

The experience of caring for a child who dies in the PICU is multifaceted. Grief, rather than moral distress, was the dominant psychological response of caregivers. Future research could focus on enhancing communication and emotional support.