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Modeling Encephalopathy of Prematurity Using Prenatal Hypoxia-ischemia with Intra-amniotic Lipopolysaccharide in Rats
Published on: November 20, 2015
Disability, ableism, and decision-making at extreme prematurity
Anne Sullivan1, Jennifer Arnold2, Sheria Wilson3
1Division of Newborn Medicine, Boston Children's Hospital, Boston, MA, USA; Harvard Medical School, Boston, MA, USA.
Abstract:
Ableism plays a pervasive yet often unexamined role in decision-making at extreme prematurity. This review examines how ableist assumptions about quality of life, normalcy, and parental burden can shape clinical counseling and influence decisions regarding resuscitation and intensive care for extremely preterm infants. Drawing on literature from neonatology, disability studies, and bioethics, the article explores the historical and sociocultural roots of ableist thinking in medicine and its manifestations in prognostic framing, risk communication, and institutional norms. Strategies for recognizing and addressing ableism in clinical practice are reviewed, including approaches to anti-ableist communication, family-centered care, and medical education reform. The article argues that adopting an explicitly anti-ableist stance is essential for promoting ethical, inclusive, and genuinely shared decision-making in the neonatal intensive care unit (NICU) and calls for greater interdisciplinary collaboration to support systemic change.
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