Medical End-of-Life Decisions in Children in Flanders, Belgium A Population-Based Postmortem Survey

Objectives: To estimate the prevalence of end-of-life decisions and to describe their characteristics and the preceding decision-making process in minors in Belgium. Design: Population-based postmortem anonymous physician survey. Setting: Flanders, Belgium. Participants: All physicians signing the death certificates of all patients (N=250) aged 1 to 17 years who died between June 2007 and November 2008 in Flanders, Belgium. Outcome Measures: Prevalence and characteristics of end-of-life decisions and the preceding decision-making process. Results: For 165 of the 250 deaths, a physician questionnaire was returned (70.5%). In 36.4%, death was preceded by an end-of-life decision. Drugs were administered to alleviate pain and symptoms with a possible life-shortening effect in 18.2% of all deaths, nontreatment decisions were made in 10.3%, and lethal drugs without the patient's explicit request were used in 7.9%. No cases of euthanasia, ie, the use of drugs with the explicit intention to hasten death at the patient's explicit request, were reported. Poor clinical prospects (84.6%) and low quality of life expectations (61.5%) were important reasons for the physicians to engage in end-of-life decisions. Parents were involved in decision making in 85.2% of these decisions, patients in 15.4%. Conclusions: Medical end-of-life decisions are frequent in minors in Flanders, Belgium. Whereas parents were involved in most end-of-life decisions, the patients themselves were involved much less frequently, even when the ending of their lives was intended. At the time of decision making, patients were often comatose or the physicians deemed them incompetent or too young to be involved.