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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