A Communication Guide for Pediatric Extracorporeal Membrane Oxygenation

Abstract

Decision-making surrounding extracorporeal membrane oxygenation initiation and decannulation has become a key challenge in critical care. Nuanced communication skills and transparent discussions about prognosis are imperative during this lifesaving, yet high-risk and burdensome intervention. Serious illness conversation guides are proving beneficial for patients, families and staff to communicate uncertainty and facilitate shared decision-making toward goal-concordant care. While the literature emphasizes the imperative to provide guidance for clinicians, no practical guide exists for communicating serious illness and prognostic uncertainty when managing children supported with extracorporeal membrane oxygenation and their families. To address this gap, we propose a structured conversation guide for critical early timepoints during pediatric extracorporeal membrane oxygenation support relevant for all cannulations and subsequent iterative discussions toward decannulation. The overarching approach defines extracorporeal membrane oxygenation as a bridge or temporary support device, part of a larger therapeutic effort toward a specific goal or goals. The Day 0 talk at extracorporeal membrane oxygenation initiation is brief, disclosing the serious nature of needing this level of support, and sets clear expectations toward a goal. The Day 1 talk provides further details about benefits and burdens of extracorporeal membrane oxygenation, cultivates prognostic awareness about potential outcomes and elicits families’ goals of care with iterative discussions about how extracorporeal membrane oxygenation may promote these goals. If extracorporeal membrane oxygenation is no longer effective to achieve the intended goal, recommendations are provided for discontinuation of support. When death is anticipated or possible, end-of-life planning, contingencies, and escalation limits should be discussed. The communication framework presented can be adapted to unique institutional and clinical settings. Future research is required to investigate utility and potential barriers to implementation. We anticipate that structured conversations during extracorporeal membrane oxygenation support will facilitate clear expectations toward a common treatment goal, foster therapeutic relationships, ensure clinician alignment and consistent language, mitigate communication gaps, support bereavement, and minimize conflict.

Precision decisions: tailoring decision-sharing in contemporary paediatric healthcare

“…While it seems logical that ‘the only way to truly know what matters most and how they prefer to make decisions is to ask the patients and families’, evidence is also emerging for personalised communication strategies to promote goal-concordant care in adult medicine 8–10. Serious illness communication guides and decisional aids also tend to subscribe to this approach, although there is a paucity of paediatric literature 11–13…”

Communication challenges: perioperative risks and care directives

“…Serious illness conversation guides are proving beneficial for communicating uncertainty and facilitating shared decision-making among patients, families, and the medical team [8]. Moynihan et al [9] proposed a structured conversation guide for critical time points during pediatric extracorporeal membrane oxygenation support, including iterative discussions toward decannulation even when the outcome is unclear.…”

Extracorporeal Membrane Oxygenation Outcomes in Children With Preexisting Neurologic Disorders or Neurofunctional Disability*

“…We found that not to be the case and the lack of association indicates that, in this analysis, children with neurologic disorders or disability were not at significantly higher risk of unfavorable outcomes compared with children without disabilities prior to ECMO. However, the high morbidity and mortality in both cohorts highlight that the decision to initiate ECMO support requires an approach with high-quality communication based on an ethical framework that incorporates family values and shared decision making for all patients (38).…”