Fatally Flawed? A Review and Ethical Analysis of Lethal Congenital Malformations

Wilkinson, Diana; Thiele, P; Watkins, Andrew; Crespigny, Lachlan de

doi:10.1097/01.ogx.0000427614.96651.93

Cited by 14 publications

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“…McCaffrey [2011] and Wilkinson et al [2012] call for a shift from a lethal perspective to accepting ambiguity and treating each child on an individual basis. The parental perspective is shared in Locock [2005].…”

Section: Discussionmentioning

confidence: 99%

Nine children over the age of one year with full trisomy 13: A case series describing medical conditions

Bruns

Campbell

2014

American J of Med Genetics Pt A

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Trisomy 13 (Patau syndrome), identified by Patau and colleagues [1960; Lancet 1: 790-793] is the third most common autosomal condition. Population studies indicate less than one in 10 children reaches their first birthday. In the face of mixed findings and recommendations for treatment, additional research is needed to further determine what contributes to longevity and implications for treatment for presenting medical conditions. The purpose of the present study is to report on presenting medical conditions and the presence or absence of the specific conditions (age at survey completion). Data on nine survivors (seven female, two male) with trisomy 13 indicated mean gestational age of approximately 36 weeks, birth weight ranging from 1100 to 3290 g and mean length of 45.3 cm. Length of hospital stay after birth varied. The majority of infants presented with well-known physical characteristics. Medical conditions and their treatment varied at birth and at survey completion. Notably, several infants' cardiac anomalies resolved without surgical intervention. Surgeries were provided for a range of conditions including gastrostomy tube placement to address feeding issues and removal of intestinal blockage. There were no reports of holoprosencephaly. Implications and recommendations are provided.

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Section: Discussionmentioning

confidence: 99%

Nine children over the age of one year with full trisomy 13: A case series describing medical conditions

Bruns

Campbell

2014

American J of Med Genetics Pt A

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“…The definition of a lethal malformation and its limitations has been discussed in the medical literature. Wilkinson et al 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.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2018

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“…This does not mean that the savings from avoiding inappropriate treatment are not worth pursuing—simply that they are unlikely to yield large benefits for society. Third, the designation of conditions as lethal or terminal is far less clear cut than Camosy imagines 27. For one thing, six of the 16 conditions that Camosy lists (drawing on a paper by Steven Leuthner28) are associated with severe brain abnormalities, and low survival rates are heavily influenced by non-treatment decisions 29.…”

Section: Which Newborn Infants Are Too Expensive To Treat?mentioning

confidence: 99%

“…For one thing, six of the 16 conditions that Camosy lists (drawing on a paper by Steven Leuthner28) are associated with severe brain abnormalities, and low survival rates are heavily influenced by non-treatment decisions 29. Prolonged survival has been described in all but one of the abnormalities that Camosy lists 27. It is simply incorrect to state that a child with trisomy 18 or holoprosencephaly ‘cannot possibly benefit’ from treatment 30.…”

Section: Which Newborn Infants Are Too Expensive To Treat?mentioning

confidence: 99%

Which newborn infants are too expensive to treat? Camosy and rationing in intensive care

Wilkinson

2013

J Med Ethics

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Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the 'social quality of life (sQOL)' model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal 'quality of life' and Camosy's 'sQOL' should factor into these decisions, and I outline two practical proposals.

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Fatally Flawed? A Review and Ethical Analysis of Lethal Congenital Malformations

Cited by 14 publications

References 0 publications

Nine children over the age of one year with full trisomy 13: A case series describing medical conditions

Nine children over the age of one year with full trisomy 13: A case series describing medical conditions

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

Which newborn infants are too expensive to treat? Camosy and rationing in intensive care

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