Health Professionals’ Perceptions of End-of-Life Care in the PICU: Single-Center Survey in Spain

OBJECTIVES: To explore healthcare professionals' perceptions of end-of-life care in the PICU and identify unmet needs and modifiable barriers. DESIGN: Post hoc analysis of quality of care staff surveys. SETTING: Tertiary university hospital PICU in Spain. SUBJECTS: Survey data from physicians and nurses directly involved in the care of children who died in the PICU, from January 2017 to February 2023. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The primary outcome was based on the PICU Quality of Dying and Death (PICU-QODD) instrument. A total of 73 surveys were completed following 80 deaths (91.3% response rate) by 68 physicians and five nurses. The median (interquartile range) age at death was 7.5 months (2-84 mo). Death following limitation or withdrawal of life-sustaining treatment occurred in 33 of 73 cases (45.2%). Overall, median PICU-QODD scores were high across domains of symptom control, communication, emotional support, and decision-making. Anticipated deaths (42/73) were associated with higher ratings in areas including communication (p = 0.002), shared decision-making (p = 0.007), and emotional support (p = 0.024), compared with unanticipated deaths. Qualitative survey comments identified positive practices such as respectful communication and coordinated team efforts, but also highlighted deficiencies including a lack of private spaces, emotional isolation, and insufficient institutional support. Respondents recommended improved bereavement follow-up, architectural enhancements, and routine debriefings. During the study period, 63% (95% CI, 51-73%) reported significant personal emotional impact, yet few had access to formal psychological support. CONCLUSIONS: Our review of surveys from healthcare professionals involved in pediatric deaths between 2017 and 2023 showed that end-of-life care was generally good but was limited by insufficient staff emotional support and shortcomings in the unit and hospital environment at that time. As part of an ongoing quality improvement process, these insights have led to the introduction of structured debriefings and initiatives to improve family spaces within our unit.