End-of-life decisions for extremely preterm infants in Switzerland

Each year in Switzerland approximately 200 to 250 extremely preterm infants (less than 28 weeks gestation) are born. Many of these infants die in the delivery room (about 20 per cent) or later in the neonatal in-tensive care unit (about 25 per cent). In connection with these deaths, it has been discussed whether life-sustaining treatment is appropriate or whether palliative care in the delivery room would be preferable. Retro-spective studies suggest that relevant factors for these decisions are weighted differently at the different perinatal care centres in Switzerland. Centre-specific characteristics probably have a considerable influence on the survival rates of extremely preterm infants.

In this study the research team aims to analyse how end-of-life decisions for extremely preterm infants are made. For a study period of two years, all deaths of extremely preterm infants will be captured. In addition to demographic data - including identification of the perinatal care centre that cared for the infant - the patients' physiological stability and the extent of intensive care measures applied will be collected. The team will also gather information on how decisions to withhold intensive care measures or to discontinue measures were made and on what role the parents of the infant had in the decision.

There are considerable centre-to-centre differences in survival rates of extremely preterm infants at Switzerland’s nine perinatal care centres. It is important to gain a better understanding of these differences, so that quality improvement measures can be developed. Life support treatment decisions for extremely preterm infants must be based primarily on recognised ethical fundamental principles and, regarding prognostic considerations, must be as evidence-based as possible. In these decisions, the location (centre) where care is given should not play a significant role.

End-of-life decision-making in extremely low birth weight infants in Switzerland