An emerging consensus about treatment of the tiniest babies

Abstract

Over the past three decades, a broad consensus has emerged that decisions about life-sustaining treatment for extremely premature infants should be grounded in shared decision-making (SDM) between clinicians and parents. This consensus is endorsed by professional societies, bioethics commissions, and parents of babies in the neonatal intensive care unit. Despite this robust consensus, there is evidence that SDM is not always practiced. The evidence comes from observations of actual studies in which there is substantial practice variation that seems unlikely to reflect individualized decisions. In this paper, I examine the sources of that variation and argue that current SDM frameworks rest on an overly simplistic assumption that outcomes are stable, objective, unambiguous, and communicated clearly. In reality, prognostic data for survival and neurodevelopmental impairment are deeply contingent on treatment practices, prenatal management, institutional culture, and reporting conventions. These ambiguities complicate counseling, obscure value-laden judgments, and contribute to moral distress among clinicians. Moreover, parental preferences are heterogeneous and often reflect attitudes about disabilities that are different from the attitudes of health professionals. I propose a more dynamic model of SDM that acknowledges emotional complexity, evolving prognostic clarity, and the need for iterative decision-making over time. Rather than centering decisions on a single variable such as gestational age, this approach emphasizes individualized assessment, a trial of therapy when appropriate, and longitudinal conversations grounded in trust, empathy, and responsiveness to changing clinical realities. As neonatology continues to push the boundaries of viability—and as emerging technologies reshape the therapeutic landscape—ethical deliberation must keep pace. Clinicians and parents alike must navigate persistent uncertainty with humility, attentiveness to suffering, and a shared commitment to doing what is best for each infant and family.