Critical care decisions in fetal and neonatal medicine: ethical issues
Monitoring and research
43 Not enough is known about variation in current practice, experience and views on critical care decision making in fetal and neonatal medicine, to provide an evidence base for identifying and applying changes to guidelines for practice, and assist with the more effective resolution of differences of opinion. The Working Party recommends to the RCOG, the RCPCH, the RCN, the NNA and the RCM that objective, systematic data, rigorously analysed, are needed on how the different parties interact when making critical care decisions for the newborn. This information will further understanding, provide an evidence base for identifying and applying changes to guidelines for practice, and assist with the more effective resolution of differences of opinion. Sociological research is also needed to identify how wider personal, familial, social and cultural factors carry weight as individuals interact during the decision-making process (paragraphs 3.12–3.14, 3.21, 6.26 and 9.48).
44 It is crucial that accurate and up-to-date evidence from research is available to doctors and parents about the risks and likely outcomes for babies in whom a birth abnormality or genetic disorder is present, as well as for extremely premature babies. Follow up is needed not only for groups of children diagnosed with health difficulties before or around the time of birth, but also for children who have minor symptoms at birth but are at risk of late-onset problems. In the view of the Working Party, data linkage with longer-term events in later stages of a child’s life, through adolescence to adulthood, captured through NHS health records and educational records, will provide crucial information on outcomes. Although the necessary electronic NHS systems are not yet in place, it is timely to consider the health-related questions that should be posed and corresponding requirements for data collection (paragraphs 5.11 and 9.49).
45 Useful information can be gained from autopsy examinations for fetuses and babies who do not survive. Insights may be gained into the cause of death which may help parents in planning future pregnancies and doctors to gain a better understanding of the causes underlying clinical conditions. In turn, other parents can be given more accurate information when making decisions, and research efforts can be directed towards obtaining more precise diagnoses. The Working Party encourages doctors to recommend and parents to consider autopsy in order to add to knowledge about causes of death (paragraph 9.50).