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.

Obstetricians' views on the ethics of cardiac surgery for newborns with common aneuploidies

“…Wilkinson therefore suggests that as opposed to using words with multiple meanings, specific questions to help the family understand the prognosis should be answered including the diagnosis, the chances of neonatal and long-term survival, longterm impairment, and the burden of treatment. 23,24 These same ques- Once a diagnosis of trisomy 18 or 13 was made, the goals of the parents in the survey mentioned above were to meet their baby alive, take their baby home, and give the baby a "good life." 26 In general, parents defined a good life one where the child was happy and loved, but Our respondents seemed most passionate responding to whether insurance companies to be legally required to pay for cardiac surgery for babies who have trisomy 18 or trisomy 13.…”

“…The definition of a lethal malformation and its limitations has been discussed in the medical literature. Wilkinson et al23,24 summarized four possibilities, including a condition that leads to death in utero, a condition that leads to death in utero or in the newborn period regardless of treatment, a condition that leads to death in utero or in the newborn period in most cases, or a condition that leads to fetal or neonatal death in some cases. These multiple definitions can lead to ambiguity when counseling patients.…”

An assessment of the general public's knowledge of fatal fetal anomalies

“…7 Wilkinson et al discussed the "language of lethality" and referred to the potential reasons that health care professionals use fatal and related terminology. 8 It was suggested that these reasons included health care professionals' "discomfort with uncertainty", their attempts to aid the decision-making for either TOP or PPC with the information of no Oral Poster at the ISPD Conference July 9th 2018 survival, or the potential attitudes of professionals believing that a fetus with such a condition will have no quality of life. 8 In addition, Wilkinson et al argues that once professionals are clear in their communication, the terminology used may not be of importance.…”

“…8 It was suggested that these reasons included health care professionals' "discomfort with uncertainty", their attempts to aid the decision-making for either TOP or PPC with the information of no Oral Poster at the ISPD Conference July 9th 2018 survival, or the potential attitudes of professionals believing that a fetus with such a condition will have no quality of life. 8 In addition, Wilkinson et al argues that once professionals are clear in their communication, the terminology used may not be of importance. 8 However, they do suggest that the fatal language may not be clear or reflective of conditions associated with such terms, as there is no agreement on a definition or a list of conditions for fatal fetal anomaly (FFA).…”

Association of gestational age with the option of pregnancy termination for fetal abnormalities incompatible with neonatal survival

“…Lethal fetal diseases, also described as nonviable or incompatible with neonatal survival, invariably lead to intrauterine fetal death or death in the neonatal period, regardless of attempting supportive measures or treatment. (5,9) …”