PubMed · 14341527
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V K PILLAY. 1965. ECTRODACTYLY.. https://pubmed.ncbi.nlm.nih.gov/14341527/
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BACKGROUND: Improvements in diagnostics and treatment in perinatal medicine have enabled us to save more premature and critically ill infants and infants born with severe congenital anomalies. However, some of these children often develop complications with a poor prognosis both for survival and quality of life. An active decision to withdraw treatment is common practice in such cases. Little is known about the impact of this problem in neonatal care in Norway. MATERIAL AND METHODS: The records of 178 infants admitted as newborns and who died in our hospital during the period 1990-1999 were reviewed and analysed according to these groups: death in spite of full treatment, death because of active withdrawal of treatment, and death after palliative treatment. We also evaluated to what extent the parents were involved in the decision making process and how that process was documented in patient records. RESULTS: Death after withdrawal of treatment was identified in 65% of the cases and was mainly seen in critically ill immature and premature infants (74%). The parents were usually involved in the decision, though documentation in patient records of the decision making process was generally poor. The ethical, legal and practical implications of this state of affairs probably need to be reviewed.
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An intensive debate is ongoing in this journal concerning the most appropriate endpoint after assisted reproduction techniques. The endpoint suggested by the first authors was Birth Emphasizing a Successful Singleton at Term (BESST). We have evaluated the most appropriate endpoint from different perspectives: patients, public, health authorities, obstetric and IVF clinics. We find singleton live birth highly relevant as an outcome parameter as multiple pregnancies are the main factor responsible for the overall poorer obstetric and neonatal outcome in IVF pregnancies, and multiple pregnancies are mostly an avoidable iatrogenic complication. However, our proposal is that both preterm and term singletons should be included since the prematurity rate is an outcome that is largely uninfluenced by the IVF clinics. In conclusion, we propose singleton live birth per cycle initiated as the most appropriate main outcome after assisted reproduction. Prematurity should in addition be reported separately as a secondary outcome.