Our survey of 192 healthcare professionals across Europe revealed that most favored discontinuing ECLS and providing comfort care when treatment goals were unmet, with preferences varying by region and religious affiliation. A patient-centered model emphasizing autonomy and family involvement is increasingly prominent in Europe [14].

However, regional variations persist, with Western and Northern Europe favoring ECLS and LST discontinuation, while Southern and Eastern Europe lean toward treatment continuation [15, 16]. These differences likely reflect cultural, religious, and case-mix variations, as well as disparities in end-of-life legislation and societal attitudes [7].

In Western tradition, discontinuation and withholding of LST are ethically equivalent, yet discontinuation poses unique emotional and logistical challenges [17]. Some perceive it as a choice between preserving life and allowing death [8]. A no-escalation strategy offers a potential solution. Our findings indicate that many respondents favor non-escalation of treatment, highlighting significant variability in end-of-life practices. Religious beliefs can influence end-of-life decisions in the ICU [18,19,20,21]. Although one study found physicians’ religious affiliations are not the main factor in these practices [14], the results suggest that religion may play a role in certain cases. Our findings indicate that Christian and agnostic/atheist respondents more often de-escalate therapy and redirect to comfort care when ECLS fails. This reflects differing views on life and death boundaries, impacting decisions [22]. The small number of non-Christian/agnostic respondents calls for cautious interpretation and further research.

Integrating ethics consultation into ECLS care is crucial when treatment goals are unmet. Ethics consultations are less common in pediatric ECLS than in adult ECLS [23], primarily addressing ECLS discontinuation. Most respondents agreed that ethics consultations benefit patients, families, and healthcare professionals. Limited access to Clinical Ethics Committees and ethicists highlights the need for better access. While evidence for effectiveness remains limited [24], institutional policies promoting ethics consultation can enhance patient-centered care and shared decision-making, while reducing moral distress. Decision-making is often hindered by disagreements among healthcare providers and families. Institutions may develop policies and protocols to address these challenges, including clear guidelines for managing conflicts.

Open communication and collaboration between healthcare providers and families are crucial. A structured conversation guide for ECLS [5] may alleviate distress for families and clinicians by discussing when ECLS is no longer beneficial, facilitating end-of-life planning, and improving communication and bereavement support. While most respondents had access to palliative care, referrals were inconsistent, with only 32% occurring on a case-by-case basis and only 11% systematically (Suppl. Tab. 2). Although palliative care is recommended for all terminally ill patients [25], standardized guidelines for concurrent referrals are lacking. While higher palliative care visit frequency is associated with prognostic uncertainty, medical complexity, and run duration [26], the impact of palliative care on pediatric outcomes remains unknown [4]. To improve care, access to advanced care planning and timely palliative care upon ECLS discontinuation should be ensured. Future research should focus on developing referral triggers and evaluating the impact of these interventions on outcomes.

Case 1 highlights the impact of neurological injuries on decisions to withdraw ECLS. Neurologic injury is a poor prognostic factor for ECLS patients, contributing to high morbidity and mortality [27]. Less than half of pediatric ECLS survivors have favorable neurologic outcomes at discharge [28]. However, data on neurologic injury’s role in discontinuation decisions is scarce [29]. According to the Society of Critical Care Medicine, care is deemed inappropriate if there is no reasonable expectation of neurologic improvement [30]. Neurologic injuries influence early discontinuation decisions in adult ECPR [31].

Most respondents in this study would withdraw ECLS and discontinue other LST in such circumstances, reflecting the importance clinicians place on neurologic injury and its potential impact on quality of life when making ECLS discontinuation decisions.

Case 2 involves a patient with severe respiratory and cardiovascular complications. Many respondents opposed ECLS discontinuation, believing the lungs might need more time to heal, consistent with ELSO pediatric respiratory ECLS guidelines, which recommend extended ECLS support for lung recovery [32].

Case 3 examines a trisomy 21 patient with severe ECLS complications. Historically, ECLS use in trisomy 21 patients was approached with caution due to the increased morbidity and mortality risks [33, 34]. However, studies show similar ECLS mortality rates for trisomy 21 patients and those without genetic conditions [35, 36]. Respondents were divided on continuing or withdrawing ECLS, citing either perceived futility or the need for more time to become transplant candidates. Notably, trisomy 21 was not cited as a reason for ECLS discontinuation, suggesting that it may no longer be considered a significant obstacle for ECLS in children.

There are established definitions of futile and ineffective interventions, along with consensus statements on end-of-life care for critically ill patients [25, 30]. However, these resources are often broad and lack the detail needed for specific patient cases, complicating their application. Developing clear, consistent guidelines for managing ECLS patients in various scenarios could reduce variability in treatment approaches and aid decision-making. These guidelines should consider regional, religious, and cultural factors that influence patient care. Recognizing the role of personal beliefs and values in decision-making processes can help healthcare providers and families navigate complex situations with greater clarity. Future research could explore ways to better understand and incorporate these factors into clinical decision-making, such as developing tools or resources to aid in this process.

This study has several limitations. The lack of a defined sample size prevents estimating the response rate, introducing potential response bias. Due to the survey’s distribution via the EuroELSO mailing list, social media, the EuroELSO website, and the 10th EuroELSO Congress app, we could not track how many people were exposed to the survey. While this limits response rate calculations, broad outreach was made to minimize selection bias and ensure sample representativeness. The survey did not capture institutional affiliations, limiting regional or institutional analysis. We also could not control for multiple submissions due to its anonymous nature. Optional religious background declaration led to inconsistent abstention rates among different groups, limiting the depth of the analysis on cultural or religious influences. Uneven response distribution across professions and regions, particularly in smaller groups, limited robust statistical analysis.

Additionally, while the survey captured respondents’ reported clinical practices, these self-reports may not fully reflect real-world actions due to institutional, legal, or resource constraints not assessed here. Most respondents cared for a mix of patients rather than exclusively pediatrics, which may influence the results, particularly given that prognostication uncertainty is a predominant issue in pediatric care.

The free text comments were few in number and were not categorized using specialized software. Our study aims to explore the healthcare professionals’ perspectives on practical, clinical aspects of ECLS discontinuation. There are individual reports suggesting that decision-making can result in moral distress, so one is led to wonder naturally. An attempt to ascertain if the respondent or their team members had personally experienced moral distress because of their/others’ decision-making was not included in the survey. A full ethical analysis was beyond the scope of the manuscript and would require a different research approach.

The availability and organization of ECLS centers may vary within different European regions [37], which may further influence attitudes toward withdrawal of support. However, owing to the anonymous nature of the respondent answering, this may be challenging to ascertain among respondents. Countries like Switzerland, Germany, the UK, Scandinavia, and some others typically have high ECLS availability, with established ECLS centers, referral systems, and specialized transport teams. These regions often adhere to standardized guidelines and have capacity for prolonged support and multidisciplinary decision-making whereas in other regions, protocols may be less standardized, leaving decisions more influenced by local norms, individual clinicians, or family wishes. These variations suggest that decisions about withdrawal of ECLS support might be shaped not only by cultural and religious factors, but also by structural and economic realities of healthcare delivery in different parts of Europe, which may further influence attitudes toward withdrawal of support.