Congenital malformations, palliative care and postnatal redirection to more intensive treatment – a review at a Swiss tertiary center

Abstract

Purpose: The so-called lethal malformations pose ethical challenges. Most affected fetuses die before or at birth. Live-born neonates commonly receive palliative care. If the postnatal course is better than expected, redirection towards more treatment may occur. We aimed to analyze this in a Swiss patient cohort.

Materials and methods: Over 6 years, fetal malformation was suspected in 1113 cases. We identified patients prenatally assigned to palliative care, assessed pre- and postnatal diagnoses, and outcomes.

Results: Fourteen neonates received palliative care. Eleven patients received palliative care following late termination of pregnancy, for three, palliative care was planned and the fetus died during delivery, for two, the outcome was unknown (incomplete documentation). Genetic testing was performed in 50%. The predominant diagnostic group was central nervous system malformations (33%), followed by chromosomal aberrations (20%) and renal anomalies (17%). One child assigned to palliative care was resuscitated. Antenatal findings were anhydramnios and pulmonary hypoplasia. Postnatally, respiration was better than expected. The neonate was admitted to intensive care, died on day one.

Conclusions: Nervous system malformations seem to be a major criterion for foregoing life-sustaining interventions. Redirection towards more treatment is rare. This may reflect precise prenatal prognostication; a degree of self-fulfilling prophecy cannot be excluded.

Keywords:

• Congenital malformations
• pediatric palliative care
• neonatal intensive care
• perinatology
• antenatal diagnostics

Consent for publication

Individual consent was waived by the responsible ethics committee, as the study concerned “further use of health-related personal data and/or biological material”. Publication does not compromise anonymity of the participants, as certified by a second decision of the responsible ethics committee.

Disclosure statement

The authors declare that they have no competing interests.