Sharing the burden of deciding: How physicians and parents make end-of-life decisions

End-of-life decisions are among the most difficult decisions to make. They confront us with the limits of our medical knowledge, with moral dilemmas without best answers, and with feelings of powerlessness, injustice and grief. Making end-of-life decisions on behalf of a child is an even more burdensome process. There is growing consensus that physicians should tailor their decision-making approach to the preferences and needs of the child’s parents. But how can physicians best do this? Should they ask parents to what extent they wish to be involved in the decision-making process? How extensively should they inform them about all concerns and remaining options? Can parents be asked what they think is best to do? Will they not always favor treatment to be continued for their child? And what to do if parents and physicians start to have conflicting points of view? These questions were the starting point for the research project ‘Sharing the burden of deciding. How physicians and parents make end-of-life decisions’. It consisted of four successive studies: an interview-study among Dutch neonatologists; a survey among Dutch pediatric intensivists, oncologists, neurologists, neurosurgeons and metabolic pediatricians by means of a questionnaire; an integrative review of international empirical studies among parents; and an observational study of end-of-life conversations between parents and physicians in two University Medical Centers. By integrating the outcomes of these individual studies, this thesis formulates overall answers to the questions presented above. It ends with practical recommendations to improve a shared process of end-of-life decision-making in children.