Terminal Decannulation: Developing a Framework for the Discontinuation of Extracorporeal Life Support for Children
Saturday, October 14, 2023
7:30 AM – 8:45 AM ET
Location: Waterview CD (Lobby Level)
Extracorporeal life support (ECLS) is used in newborn and pediatric intensive care units for refractory cardiopulmonary failure. Although it is a quintessential example of a heroic intervention, nearly 40% of children ill enough to require ECLS (also called extracorporeal membrane oxygenation, or ECMO) will die prior to hospital discharge. ECLS is a supportive but not a curative therapy. It provides maximal, invasive cardiopulmonary support as a bridge to improvement of a reversible illness or more definitive life-sustaining intervention. Thus, children supported with ECLS are sometimes terminally decannulated—separated from the ECLS circuit even when death is the expected result—due to insufficient recovery from the underlying illness to liberate them from ECLS, complications of the therapy, or progression of the primary insult.
We will explore the moral dimensions of terminal decannulation to lay the foundations for the development of accessible, action-guiding resources for families and clinicians. Such resources would aid in identifying patients for whom terminal decannulation may be appropriate, employing ethical decision-making strategies and appropriate clinician directiveness, building effective parent and family engagement, and establishing methods of conflict resolution. We will delineate the empirical knowledge gaps that hinder the development of these resources, including prognostic uncertainty due to absent or conflicting clinical outcomes, insufficient understanding of contemporary practices and practice variation, and minimal knowledge of stakeholder perspectives beyond physicians. Finally, we will explore existing normative analyses to evaluate how they may inform a nuanced, multidimensional ethical framework to support clinicians and families through terminal decannulation decisions.