385 - Informed Consent in Pediatric ECLS Decannulation: Variability and Implications for Withdrawal of Life-Sustaining Therapy

Publication Number: 4377.385

Daniel Fu, University of Chicago Division of the Biological Sciences The Pritzker School of Medicine, Chicago, IL, United States; Baddr A. Shakhsheer, University of Chicago, Chicago, IL, United States; Sean C. Wightman, Keck School of Medicine of the University of Southern California, Los Angeles, CA, United States

Background: Informed consent (IC) is central to medical ethics, yet its use during withdrawal of pediatric extracorporeal life support (ECLS) is inconsistent. Guidance on when IC is required, particularly in non-therapeutic scenarios, is limited.

Objective: To characterize current practices, beliefs, and experiences surrounding IC during ECMO decannulation among pediatric ECMO leaders and highlight variability in clinical approaches.

Design/Methods: In August 2025, a confidential electronic survey was sent to pediatric ECMO leaders. Respondents reported institutional IC practices, personal beliefs regarding consent, prior experiences with refusal of consent, and scenarios involving non-therapeutic ECMO continuation. Three clinical scenarios assessed willingness to delay or proceed with decannulation against family wishes and the frequency with which discussions about non-therapeutic decannulation were understood by families.

Results: Thirty-four complete responses were analyzed. Respondents varied in age, gender, institution type, and geography; 29/34 programs were ELSO Centers of Excellence. 16 respondents reported no formal IC process, 17 reported a process, and 1 was unsure. Opinions on whether IC should be required were split (16 no, 15 yes, 3 unsure). 8 respondents had encountered refusal of consent and 28 reported maintaining ECMO for non-therapeutic reasons. In the scenario responses, 27/34 would not delay decannulation at family request, while 16/34 would decannulate against family wishes when therapy was no longer beneficial. Discussions about potential non-therapeutic decannulation were initiated by 32/34 respondents at time of cannulation but was perceived to be understood by families only 36% ± 27% of the time. Among programs with formal IC processes, 5/17 would still decannulate against family wishes, highlighting discordance between policy and practice.

Conclusion(s): Practices and beliefs regarding IC for pediatric ECMO decannulation are highly variable. Even among programs with formal consent processes, discrepancies exist between policy and clinical decision-making, especially in non-therapeutic contexts. These findings underscore the need for clearer guidance to standardize IC and preserve patient and family autonomy during ECMO withdrawal.

Figure 1: Demographics and Institution Characteristics


Figure 2: Institutional Characteristics and Beliefs