End-of-life decisions in fetuses older than 22 weeks, neonates and infants: a population based study in Flanders, Belgium

In the past decades there has been an increase in medical and technical solutions for ill neonates and infants, giving rise to discussion whether these should be used in all circumstances. Terminations of late pregnancy and end-of-life decisions (ELDs) with possible or certain life shortening effect in neonates or infants have become subject of debate worldwide. Neonatologists from all neonatal ICUs in Flanders have expressed a need for current data on the prevalence of ELD practices and related characteristics.

Using a mixed-methods approach combining survey methods that have been proven reliable with qualitative research this project will:
1) examine end-of-life practices and decisions in fetuses older than 22 weeks, in neonates and infants
2) describe attitudes of medical professionals towards ELD-making in the perinatal period (up to one year) and evaluate the influence of attitudes on actual decision-making
3) explore views and experiences on the ELD-making process in the perinatal period of involved clinicians and bereaved parents

The three objectives will be addressed using 1) a population-based survey of physicians certifying all deaths in fetuses older than 22 weeks, neonates and infants, 2) a representative survey of medical practitioners caring for these patients and 3) a qualitative study with medical practitioners and parents. The study can contribute to the development of guidelines for uniform practice regarding these difficult decisions in perinatal care.