Ethical language and decision-making for prenatally diagnosed lethal malformations

Abstract

SummaryIn clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as ‘lethal’ or as ‘incompatible with life’. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated ‘lethal’ reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the problematic concept of ‘futility’. We recommend avoiding the term ‘lethal’ and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate.

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

“…Yet around 75% of respondents thought that at least 5% of infants would survive to one year of age if treatment is provided. 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, long‐term impairment, and the burden of treatment . These same questions may assist health‐care professionals to better understand and counsel patients about rare genetic diseases.…”

Medical and ethical challenges in the case of a prenatally undiagnosed massive congenital brain tumor

“…As outlined by Wilkinson et al, 12 'lethality' is difficult to define and the question of 'futility' of care may be more relevant. [13][14][15] Guidance on withdrawal of care in situations requiring stabilization and transport is limited and only Dulkerian et al 16 discussed these issues in the context of neonatal transport.…”

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong?

“…The term "lethal" is very imprecise. 13 However, a common understanding is that a "lethal" diagnosis implies an irresistible progression of a disease that inevitably leads to death in the near future. 14 Such understanding and usage of the terminology "lethal" unavoidably implicates that treatment of such a condition is futile or even detrimental.…”