Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family. Objective: We examined the current state of clinician perspective on communication with families of dying children in the PICU. Design: Prospective case series over a 15-month study period. Setting/Subjects: We surveyed nurses, psychosocial staff, and physicians who cared for dying children in PICUs at five U.S. academic hospitals. Measurements: Clinicians reported on the location of communication, perceived barriers to end-of-life care, and rated the quality of communication (QOC). Results: We collected 565 surveys from 287 clinicians who cared for 169 dying children. Clinicians reported that the majority of communication occurred at the bedside, and less commonly family conferences and rounds. Ten barriers to care were examined and were reported with frequencies of 2%-32%. QOC was rated higher when the majority of conversations occurred during family conferences (p = 0.01) and lower for patients of non-white race (p = 0.03). QOC decreased when 8 of the 10 barriers to care were reported. Conclusions: When a child is dying, clinicians report that communication with the family occurs most frequently at the child's bedside. This has important implications for future ICU communication research as the majority of previous research and education has focused on family care conferences. In addition, findings that QOC is perceived as lower for non-white patients and when clinicians perceive that barriers hindering care are present can help direct future efforts to improve communication in the PICU.
Keywords: communication; dying and death; end of life; family care conference; palliative care; pediatric critical care; quality.