Ethical language and decision-making for prenatally diagnosed lethal malformations

Area of Science:

• Medical Ethics
• Clinical Genetics
• Perinatal Medicine

Background:

• Severe congenital malformations are often termed 'lethal' or 'incompatible with life' in clinical practice and literature.
• There is a lack of consensus on the definition and classification of lethal malformations.
• Review of outcomes indicates that prolonged survival can occur, even rarely, in conditions commonly designated as lethal.

Purpose of the Study:

• To analyze the concept of lethal malformations.
• To compare the concept of lethal malformations with the concept of futility in medical care.
• To provide recommendations for clinical practice regarding the terminology and management of severe congenital malformations.

Main Methods:

• Literature review and conceptual analysis of 'lethal malformations' and 'futility'.
• Examination of outcomes for malformations frequently labeled as 'lethal'.
• Comparison of ethical considerations for different management approaches.

Main Results:

• The term 'lethal malformation' lacks a clear definition and consistent application.
• Prolonged survival is documented in cases of malformations typically considered 'lethal'.
• The concept of 'futility' shares problematic aspects with the designation of 'lethal' malformations.

Conclusions:

• Avoid using the term 'lethal' for malformations.
• Counseling should emphasize salient prognostic features rather than definitive labels.
• Perinatal and neonatal palliative care are ethical options for conditions with high mortality or severe impairment, while active management may also be appropriate if desired.