Exploring critical care nursing perspectives on end-of-life care in the pediatric icu

Introduction: Providing quality end of life (EOL) care for patients is an integral part of pediatric critical care medicine. Pediatric critical care (PCC) nurses are at the forefront of this care. To date, there is limited knowledge on PCC nursing perspectives and the potential for moral distress providing EOL care. The purpose of this study is to describe PCC nursing perceptions on EOL care within a single center pediatric intensive care unit (PICU). We also seek to explore the potential for moral distress based on nursing experience while providing EOL care. Methods: A mixed methods study was conducted utilizing an anonymous survey distributed to PCC nurses in the 44-unit PICU at a tertiary academic center. Quantitative data was analyzed and comparisons between related elements was assessed using non-parametric statistics. Qualitative data was analyzed using inductive thematic analysis by three independent coders. Coders met for a series of iterative conversations led by individuals experienced in qualitative analysis with attention to investigator reflexivity, during which themes were refined into a final list. Results: A total of 150 nurses were surveyed with a response rate of 49% (n = 74/150). The majority of respondents were at a proficient or expert nursing level (59%, n = 44/74). These advanced level nurses were more likely to report that they had made a positive impact after providing EOL care compared to novice nurses (p = 0.03). Additionally, more experienced nurses were less discouraged when assigned an EOL care patient (p = 0.02) and more likely to report fewer negative attitudes towards their family following EOL patient care (p = 0.03). Qualitative analysis exploring experiences of PCC nurses while providing EOL care generated themes including but not limited to lack of prior experiences in EOL and moral distress with EOL. Conclusions: Our study highlights the impact nursing experience can have on providing EOL care. Our findings show stressors from providing EOL care are more likely to arise in less experienced PCC nurses. Future studies investigating resilient skills for PCC nurses while caring for patients at EOL are warranted and can foster quality EOL care in the PICU.