The ethics of end-of-life decisions in newborns and children

: Beatrix Children’s Hospital, UMCGEthics life-end

Supervisor:  Marije A. Brouwer, MA

In medicine, few things are as difficult as the realisation that a child’s illness is incurable. It becomes even more difficult when doctors and parents have to face decisions regarding children who have no hope for improvement and lead a life of severe suffering that cannot be alleviated. Should it be possible to make end-of-life decisions for these children? In the Netherlands, the position seems to be that under circumstances of hopeless and unbearable suffering it may be justifiable to make an end-of-life decision for a child.

These end-of-life decisions form a part of the daily reality with which the medical and nursing staff, but also of the parents and children who live with an incurable illness, see themselves confronted.

With the much-debated 2005 ‘Groningen protocol’ on active ending of life in infants (newborn-euthanasia), and the regulations on euthanasia for patients older than 12, the Netherlands has positioned itself as a country that is open about end-of-life decisions and euthanasia. Very recently further reflection upon this position ensued with a national debate on euthanasia for children between 1 and 12.

This workshop will introduce the participants to the Dutch practice of end-of-life decisions that are made within the context of Dutch neonatal and paediatric care. We zoom in on the medical, ethical and legal aspects of the decisions that physicians and parents face together. In the workshop we will encounter the experiences of parents and physicians who have faced end-of-life decisions in children. What motivated them in the decision-making process and how can we learn from their experiences?

Many of you may have heard of the practice of end-of-life decisions in the Netherlands, but what are they really about? Find out what it is, what it isn’t and form your own opinion about it and let’s discuss it!

The objectives of the workshop are:

  • To understand the Dutch position regarding end-of-life decisions for children, and the current developments in this field within the context of palliative care.
  • To understand the different types of end-of-life decisions in newborns and children.
  • To have an understanding of ethical and legal principles that are relevant to end-of life decisions.
  • To understand the background and use of the Groningen protocol and current developments in paediatric euthanasia.
  • To use the understanding of the decision making process in discussions on paediatric palliative care.