vendredi 30 août 2013

Fatally flawed? A review and ethical analysis of lethal congenital malformations

Abstract:
Prenatally diagnosed abnormalities that are associated with death in the newborn period are often referred to as 'lethal malformations'. Yet, for many of the commonly described lethal malformations long-term survival is possible if supportive interventions are provided. In this paper we analyse and review fetal or congenital lethal abnormalities. The designation 'lethal' overlaps with the concept of 'medical futility'. The term is used for a heterogenous group of conditions, and hinders clear communication and counselling. We argue that the term should be avoided, and propose in its place a set of key questions that should be addressed by counselling.

Extracts:
"None of the malformations that are most commonly described as being lethal are actually lethal in the strict sense. Prolonged survival has been described in all of the conditions listed, with the exeption of bilateral renal agenesis."

"Why is the term [lethal malformations] used? One reason is that practitioners may mistakenly believe that conditions like those listed in Tables 1 and 2 are not compatible with survival beyond the newborn period. A second potential reason is a discomfort with uncertainty, or a desire to make decision-making simpler. It is potentially easier for women to come to terms with termination of pregnancy or with palliative care if they are told that survival is impossible, and it may be easier for professionals to make and rationalise such decisions. A third possibility is that practitioners are aware that death is not inevitable but believe that the survivors will not have a life that is worth living. Finally, it may be that the term ‘lethal’ is believed to be an effective way of communicating the
grave nature of the fetus’ prognosis."

"But the problem is that 'lethal malformation' is not clear, and the way it is used hampers, rather than helps, communication. ... the term lethal is dangerous, as it contains concealed judgements about the quality of life of affected infants, and risks taking decisions out of the hand of women."


Journal Reference:
Wilkinson D, Thiele P, Watkins A, De Crespigny L. Fatally flawed? A review and ethical analysis of lethal congenital malformations. BJOG 2012; DOI: 10.1111/j.1471-0528.2012.03450.x.

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