In the October 2014 Seminars in Neonatal and Fetal Medicine, Dominic Wilkinson and colleagues discuss some of the language that is used (misused) in the context of some severe congenital malformations: “Ethical language and decision-making for prenatally diagnosed lethal malformations.”
These conditions (e.g. Trisomy 18, anencephaly, and renal agenesis) are sometimes described as “lethal malformations” or “incompatible with life.” But, as Janvier and colleagues similarly argued, babies with these conditions can and do survive. Wilkinson et al. argue that “active obstetric and neonatal management, if desired, may also sometimes be appropriate.”
As with the term “futility” value laden judgments are often disguised behind a seemingly scientific and objective prognosis. But the prognosis is really a judgment about what is worthwhile and not about what is physiologically survivable. Therefore, the use of this language destroys trust, deprives choice, and pressures parents.
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