Parents’ perceptions of critical care during the final days of their child’s life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU).
To examine associations between patient characteristics, circumstances of death, and nursing care requirements for children who died in the PICU.
A secondary analysis of the data set from the Randomized Evaluation of Sedation Titration for Respiratory Failure trial was conducted.
This analysis included 104 children; 67 died after withdrawal of life-sustaining treatments; 21, after failed resuscitation; and 16, after brain death. Patients had a median age of 7.5 years, were cognitively appropriate, and were intubated for acute respiratory failure. Daily pain and sedation scores indicated patients’ comfort was well managed (mean pain scores: modal, 0; peak, 2; mean sedation scores: modal, −2; peak, −1). Patients with longer PICU stays more often experienced pain and agitation on the day of death. Illness trajectory (acute, complex chronic condition, or cancer) was associated with pain scores (P = .04). Specifically, children with cancer had higher pain scores than children with acute illness trajectories (P = .01). Many patients (62%) had no change in critical care devices in their last days of life (median, 5 devices). Patterns of pain, sedation, comfort medications, and nursing care requirements did not differ by circumstances of death.
Children with cancer and longer PICU stays may need comprehensive comfort management. Invasive devices left in place during withdrawal of life support may have inhibited parents’ ability to connect with their child. Future research should incorporate parents’ perspectives.