Between hope and disillusionment

Abstract Background Using extracorporeal membrane oxygenation (ECMO) in paediatric and neonatal intensive care units (PICU/NICU) creates ethical challenges and carries a high risk for moral distress, burn out and team conflicts. Aim The study aimed to gain a more comprehensive understanding of the underlying factors affecting moral distress when using ECMO for infants and children by examining the attitudes of ECMO nurses. Methods Four focus groups discussions were conducted with 21 critical care nurses working in a Swiss University Children's Hospital. Purposive sampling was adopted to identify research participants. The data were analysed using reflexive thematic analysis. Results Unlike “miracle machine” stories in online media reports, specialized nurses working in PICU/NICU expressed both their hopes and fears towards this technology. Their accounts also contained references to events and factors that triggered experiences of moral distress: the unspeakable nature of the death of a child or infant; the seemingly lack of honest and transparent communication with parents; the apparent loss of situational awareness among doctors; the perceived lack of recognition for the role of nurses and the variability in end‐of‐life decision‐making; the length of time it takes doctors to take important treatment decisions; and the resource intensity of an ECMO treatment. Conclusion The creation of a multidisciplinary moral community with transparent information among all involved health care professionals and the definition of clear treatment goals as well as the implementation of paediatric palliative care for all paediatric ECMO patients should become a priority if we want to alleviate situations of moral distress. Relevance for Clinical Practice The creation of a multidisciplinary moral community, clear treatment goals and the implementation of palliative care for all paediatric ECMO patients are crucial to alleviate situations of moral distress for nurses, and thus to improve provider well‐being and the quality of patient care in PICU/NICU.