At the boundaries of life: Suffering and decision-making in children with life-threatening conditions (1-12 years)

Abstract

Dying –or the possibility of death— is not a topic often addressed in modern medicine, especially in paediatrics. But when parents and children are faced with a life-threatening condition, difficult decisions may arise. How do parents and physicians navigate the field between care and end-of-life decisions? Knowledge about care and end-of-life decisions in children is very limited, especially for children between 1 and 12 years. In this thesis, various aspects of care, communication, suffering and decision-making for children (1-12y) with life-threatening conditions are explored. The need for knowledge was emphasized by developments in paediatric euthanasia. In 2014, the Belgian parliament amended their laws on euthanasia to include competent minors. This amendment sparked a debate in the Netherlands on paediatric euthanasia. In our study we found that some parents and physicians had witnessed unbearable suffering in children, and expressed a need for expanding regulations on active ending of life. In 2019, we reported our findings to the Dutch minister. Recently, the Minister announced to expand regulations on active life-ending to include children between the age of 1 and 12 in rare cases of unbearable suffering. However, active life-ending is merely a part of a larger context of care and decision-making. Parents and physicians express a need for clarity and guidance in all aspects of care and decision-making around the end of life. Care and decision-making can, and should be further developed to suit the needs of children with life-threatening conditions, in all stages of their illness.