When facts are not fixed: rethinking shared decision making at the margins of neonatal viability

Parents and doctors face difficult decisions when a baby is born at the borderline of viability. Somehow, they must voice their values, shared concerns, and disagreements in a way that allows an initial decision about life-sustaining treatment to be made quickly, under conditions of profound uncertainty and emotional stress. In the United States, the favored approach to such decisions has been labeled "shared decision making" (SDM).This article argues that prevailing models of SDM rely on several underexamined assumptions: that the facts relevant to decision-making-such as survival probabilities, disability outcomes, and treatment burdens-are stable, objective, and available at the time decisions must be made; that parents and clinicians generally favor an egalitarian sharing of decisional authority; and that law, economics, culture, and emotional distress impose only limited constraints on deliberation. At the margins of viability, these assumptions are often false. Prognostic facts are frequently intervention-dependent and path-dependent: early clinical and institutional decisions shape both outcomes and the data later used to justify those decisions, generating self-fulfilling dynamics. Moreover, both parents and clinicians often prefer alternative decision-making arrangements, and the constraints under which decisions are made may contribute to moral distress. Drawing on neonatal ethics, intensive care medicine, and philosophy of medicine, this paper shows that treating contingent outcomes as fixed facts risks premature decisional closure and ethical misrepresentation. It argues that SDM in neonatology should be reconceived as a temporally extended, revisable practice grounded in epistemic humility-one that acknowledges uncertainty, supports provisional decisions and time-limited trials of therapy, and remains responsive to evolving clinical realities. Neonatal decision-making thus offers a paradigmatic case for rethinking SDM in contexts where clinical decisions help constitute the facts on which later decisions depend.