Improving Intensive End-of-Life Care for Infants & Children: Scoping Review of Intervention Elements

Introduction: High-quality pediatric critical care includes supporting children nearing the end-of-life (EOL) and their families. Cataloging existing interventions ensures dying children in the pediatric intensive care unit (PICU) receive the best possible care and establishes areas for future investigation. In this scoping review, we evaluated PICU EOL interventions’ design and delivery, targeted outcomes, and implementation facilitators or barriers.


Methods: OVID Medline, CINAHL, OVID PsycINFO, OVID Embase, Cochrane Central, and Web of Science, plus backwards and forwards reference searching. We included interprofessional interventions, defined as any systematic change (e.g., educational programs, symptom management, electronic medical record, etc.), for children dying from any cause. Studies were independently screened by two reviewers. Data were extracted by one team member and reviewed by a second. We extracted intervention elements, contextual factors, and implementation barriers/facilitators and generated frequencies from qualitative coding.


Results: We screened 11,643 articles and 44 met inclusion criteria. Most were non-randomized quasi-experimental (17/44, 39%) or quantitative descriptive studies (12/44, 27%); most were in neonatal ICUs (28/44, 64%) and general PICUs (10/44, 23%). Over half of studies (25/44; 57%) were conducted in academic centers and 30% in children’s hospitals (13/44). Most interventions aimed to improve clinician knowledge (25/44; 57%), augment clinical structures and processes (11/44; 25%), or enhance communication (N=8/44; 18%). Common delivery methods included clinical practice changes (N=25/44; 57%; e.g. protocols [N=12]) and educational sessions (N=20/44; 45%). Common outcomes included clinician knowledge (N=17/44; 39%), qualitative feedback (N=18/44; 41%), feasibility/acceptability (N=12/44; 27%), or treatment utilization (N=11/44; 25%). Few examined family mental health (N=3; 7%) or bereavement (N=2; 5%). Studies rarely reported implementation facilitators or barriers.


Conclusions: Forty-four studies empirically evaluated pediatric EOL care interventions in the ICU, often targeting clinician outcomes through education. Designing, testing, and implementing interventions that improve family outcomes is a critical next step.