The End of the Journey

Abstract

The NICU is a setting where decisions have to be made on a permanent basis. Some are directly or indirectly related to the quality of the life of the child and/or the parents. These moral decisions, however, do not form a separate category, next to factual or medical decisions. In theory morality applies to the good life and how to act properly. In the cases addressed in this book a standard ethical approach would focus on the relation between ethical principles and the child’s specific situation. Through deductive reasoning, ethical principles can be applied to a child’s situation. But, as my argument has revealed, this deductive model is not used in the NICU when it comes to making moral decisions. In this context, these decisions do not involve the application of general ethical rules to a unique situation, but call for another activity. Significantly, morality has to be custom-made, tailored to fit in the NICU practice. In fact, morality mainly appears to involve the fixing of a moral turning point: the boundary that cannot be crossed. Here morality means demarcation. This demarcation is construed on the basis of a range of divergent activities by several actors in various sites and at different moments. Custom-made morality requires testing the robustness of facts and the elasticity of moral categories, exploring the room for medical action, searching the right words, creating a sense of shared concern, exploring disciplinary boundaries and distributing responsibility, and learning to deal with the consequences of decisions.