According to a new regulation from the cabinet, doctors are allowed to end the lives of terminally ill children between the ages of 1 and 12 who suffer hopelessly and unbearably.
Eduard Verhagen, head of the Beatrix Children’s Hospital UMCG, has been arguing for this for years: “I am very grateful that the minister has now come to a good arrangement on this emotional and very complex subject,” says Verhagen.
There was already an arrangement for terminally ill children in their first year of life, which became known as the Groningen Protocol. This concerns a very small group of children who are terminally ill and for whom palliative care options are not enough to alleviate their suffering. A team of doctors can then decide in consultation with the parents. It is not called euthanasia for such young children, because the children cannot decide for themselves.
‘Only reasonable alternative’
Minister Ernst Kuipers of Public Health expects the new regulation to come into force in the course of the year, he said after the cabinet. The current scheme will be adjusted for this. The treating physician must be convinced on the basis of prevailing medical opinion that termination of life is “the only reasonable alternative to remove the child’s hopeless and unbearable suffering,” says Kuipers.
The subject has been discussed for more than ten years and the UMC Groningen and Eduard Verhagen have played a major role in it all that time. Earlier research by the UMCG already showed that most paediatricians in the Netherlands who are involved in the care of terminally ill children want active termination of life to be possible for this group of young children.
“The fact that this was not possible until now was a real problem,” says Verhagen. “There was already an arrangement for children up to the age of 1, and from the age of 12 children fall under the euthanasia law. Although this only concerns a small group of children, about 5 to 10 children per year, it is extremely important that active termination of life is now also possible for them. This arrangement is an important support for all parents and children and certainly also for the practitioners who have to deal with this.”
‘Terrible Situations’
Minister Kuipers calls it a complex decision. “These are terrible situations,” he says. “It is about a child with a serious condition of whom you know that he or she will die and suffer unbearably. You have to do that very carefully.”
The reason for the change is an evaluation of the Late Pregnancy Termination and Life Termination Scheme for Newborns (LZA/LP). This revealed, among other things, that doctors are sometimes uncertain about the termination of life of the youngest patients. Kuipers then held talks and the cabinet decided to adjust this scheme and expand it to include terminally ill children aged 1 to 12 without prospects.
It will soon be possible for the child’s treatment team, together with the parents, to conclude with all due care that there are no other options than to end life in order to alleviate suffering. Subsequently, there is an assessment committee and the Public Prosecution Service who subsequently assess whether the process of termination of life has been carried out carefully. Active termination of life is punishable by law. “But emergency still requires action in this situation,” says Kuipers.
The amendment is contained in a ministerial regulation that does not need to be approved by both Houses. Within the coalition, medical-ethical issues are sensitive.