Navigating end-of-life decision-making on ECLS discontinuation in children: insights from the international ENSURE survey.

Healthcare professionals face significant challenges when deciding whether to continue or withdraw Extracorporeal Life Support (ECLS) in pediatric patients, which may cause moral distress. The ENd-of-life deciSion-making dURing ECLS (ENSURE) survey investigates the perspectives of European healthcare professionals on ECLS discontinuation in pediatric patients considering the potential impact of cultural, religious, and regional factors. A 23-item mixed-method questionnaire survey was conducted across 21 European countries in different languages, assessing respondent demographics, ethical viewpoints, and institutional practices. The analysis focused on differences in decision-making based on geographic region, profession, and religion. A total of 192 healthcare professionals participated, with 68% from ELSO centers. Most respondents (77%) agreed that ethics consultations would benefit patients and families when ECLS fails to meet treatment goals. Preferences for discontinuing ECLS varied regionally, with practitioners from Northern and Western Europe more likely to favor the discontinuation of ECLS with comfort care (62-68%) compared to those from Southern and Eastern Europe (34-50%). Religious beliefs might influence decisions, with Christian and agnostic/atheist participants more likely to support ECLS discontinuation. CONCLUSION: Decision-making surrounding ECLS discontinuation in pediatric patients is influenced by regional, cultural, and possibly religious factors. There is a need for standardized guidelines and expanded access to ethics consultations to support healthcare professionals and reduce moral distress in these complex cases. Addressing discordance in clinical teams and enhancing palliative care access may improve the decision-making process and patient care outcomes. WHAT IS KNOWN: •Decisions about ECLS withdrawal in pediatric patients are ordinarily made in close consultation with families, who are particularly influenced by emotional factors. •There is a scarcity of literature related to the ethics of ECLS initiation, continuation, and termination in children, providing minimal, specific ethical recommendations. WHAT IS NEW: •The ENSURE study evaluates current viewpoints of ECLS professionals across Europe and investigates influencing respondent or institutional characteristics. •Guidelines for managing ECLS patients considering regional, religious, and cultural factors could reduce variability in treatment and mental distress in decision-making.