Special Lecture: “Extreme Prematurity: Truth, Justice, and the Tyranny of Language”

Event date: Wednesday 8 July 2009

Venue: Seminar room 1, Old Indian Institute, James Martin 21st Century School, 34 Broad Street, OX1 3BD

Bio: Dr Geoffrey Miller is the Clinical Director of Pediatric Neurology at the Yale – New Haven Hospital, and Professor of Pediatrics and Neurology at Yale University. He is a member of the Yale Bioethics Center and the Child Neurology Society Bioethics Committee. He is the author of the book “Extreme Prematurity. Practices, Bioethics, and the Law” and editor of the books: “Static Encephalopathies of Infancy and Childhood” and “Cerebral Palsies. Causes, and Consequences,” and the soon to be published “Pediatric Bioethics.”

Abstract: In the English speaking world there appears to be a widely held ethical (but not necessarily legal) view that the active management of the extremely preterm infant (EPTI) born less than 25 weeks gestation should be allowed at the discretion of the parents and that their decision ought to be honoured by involved health professionals. This is based on the belief that mortality is so high and morbidity is so unacceptable for these infants that non active management, resulting in death, is a reasonable alternative and a justifiable preferred consequence. This decision is made by parents whom it is assumed have the noblest intentions and a clear understanding of the clinical picture and the facts which influence prognostic consequences. I will argue that because knowledge of prognosis depends on several unpredictable variables and sufficiently accurate gestational age assessment, which is usually not available, the decision makers may act without clear understanding. There is also ignorance concerning resuscitation of the EPTI and knowledge of outcome. Furthermore this selective approach is unjust as the management of more mature infants and older children with conditions that have comparable outcomes occurs without the scrutiny given to extreme prematurity. In addition, the approach to management, the counselling of caregivers, and the attitudes of health professionals, are shaped by the language and presentation of academic publications concerning the fate of the EPTI. Presentation and language that suggests a more unfavourable outcome than is necessarily correct. This, and the history of infanticide, might suggest that the allegedly reasoned approach to the ethical management of the EPTI is a rationalization which masks moral qualms and an atavistic urge to protect a community.

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