When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians (...) and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions. (shrink)

This article examines the ethical validity of using viability as the cutoff point for abortion in the Netherlands, in view of potential changes to the Dutch perinatal care guideline. According to the Dutch Penal Code, abortion is permitted until viability: the point at which a fetus can survive outside the womb with technological assistance. Since the law was enacted in 1984, viability has been set at 24 weeks gestational age. Currently, in the Netherlands, the treatment limit for extreme prematurity is (...) also set at 24 weeks. The potential revision of the guideline could lower this threshold. Such a change could have implications for abortion in the Netherlands. We critically evaluate the use of viability within the Dutch context and offer recommendations for modifying the legal framework concerning abortion. We conclude that relying on any interpretation of viability is morally problematic for abortion regulation, as it is too indeterminate a concept to establish a threshold in a morally relevant way. (shrink)

For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention to why (...) clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (shrink)