Occurrence and characteristics of end-of-life decisions in stillbirths, neonates and infants in Flanders, Belgium
In past decades there has been an enormous increase in medical and technical intervention possibilities for critically ill neonates and infants. However, a substantial number of surviving children are still confronted with serious morbidity of which a large group does not survive. The ethical dilemma in some of these situations between saving the infant’s life and not knowing what the burden of suffering will be needs thoughtful and professional deliberation of all parties involved in the decision-making process.
The general focus of this proposal is end-of-life decision making in stillbirths, neonates and infants on a population level (across centres and patients). The research has two research objectives:
Specific research aims are:
We will perform a post mortem survey in Flanders over an 18-month period (2016-2017) based on death certificates. Every death or stillbirth from 26 weeks gestation onwards is registered via a death certificate in Belgium. Stillbirths after 22 weeks are also registered, but this is not obligatory. Death certificates in Flanders are sent to the central administration authority, i.e. the Flemish Agency for Care and Health. Certifying physicians of all deaths, based on both certificates of stillbirths, and certificates of newborns up to the age of one year, will be asked to fill in a questionnaire about each specific case on a continuing basis. Based on information from the Flemish Agency (2007-2008) approximately 845 deaths (500 stillbirths and 345 neonates and infants) are expected.
The questionnaire will contain following items and questions:
A rigorous procedure will be implemented to guarantee that no completed questionnaire can be linked to a particular patient or physician and that both patients and physicians remain anonymous. To guarantee anonymity, the different stages of the survey i.e. the mailing, receiving and processing of the questionnaires will be spatially separated and performed by different persons.
Promotor: Luc Deliens
Promotor: Joachim Cohen
Promotor: Kenneth Chambaere
Promotor: Kim Beernaert
Neonatologists: Filip Cools (UZ Brussel), Linde Goossens (UZ Gent), Gunnar Naulaers (UZ Leuven)
Promotor: Kristien Roelens
Promotor: Luc Deliens
Supervisor: Kim Beernaert
Senior Researcher: Kenneth Chambaere