Look for good palliative care instead of active end of life for seriously ill children, argue Elise van Hoek and Yvonne Geuze, sociologist and health researcher at NPV Care for Life.
Situations for seriously ill children can be so disturbing that the desire arises to end a child’s life. Politicians have been working for a long time on a life support scheme for children aged 1 to 12 years. Due to their age, they do not fall under the regulation for newborns and the euthanasia law. An exciting case that has been discussed very little.
Fortunately, this request for active cessation of life is rare. Thanks to palliative care, the pain and suffering of seriously ill children can often be adequately controlled and their relatives supported. At the same time, reports point to gaps in this concern. These require investments, such as resolving bottlenecks in symptom relief, lack of pediatric nurses and the need for better communication in the field. This signal interferes with the idea of developing a life support scheme for children.
Doctor legally protected
“It can be five to ten cases a year,” wrote Minister Hugo de Jonge when he announced the scheme in October 2020. The lives of these terminally ill children who suffer hopelessly and unbearably and for whom palliative care is insufficient could actively completed. The new rules will legally protect doctors who do so from prosecution. And some hope so: Active end to life among children will become a more accessible route in the Netherlands.
But the scheme is unsuitable for that purpose. The Attorney General recently handed down a sharp verdict on the concept and rejected it. According to the Institute, the current proposed regulation will only make a small contribution to the existing ground of criminal exclusion in the law with regard to legal protection. The public prosecutors also do not see much reason to believe that the fear of prosecution among doctors will diminish.
In addition, the Institute writes that it is not yet possible to make a general scheme, because there is still a lot of discussion about it within the subject. Sensitivity to the interpretation of a child’s disorder and the role that future suffering may play in a request for termination of life are justified.
Questions of principle
In the midst of an unruly practice, we should not expect to have the problem under the control of a legal framework. In fact, a legal framework creates a new situation with new dilemmas.
Even with rules, there will still be suffering children and children who just do not fall within the legal framework. Then we come to the question: what does the availability of a legal framework do with the expectations parents have of a doctor?
This regulation touches on the whole view of (self) chosen death and how we as a society view life and suffering. Where the autonomous issue in the current Euthanasia Act is the starting point, it is a significantly different way to end the incapacitated. A path that we must not take, because it does not fit in with the government’s task of protecting the vulnerable.
This route leads to new issues that put incapacitated people in an extremely vulnerable position. For why can the life of a child suffering severely be terminated, but not the life of an incompetent, suffering elderly person without a prior directive?
NPT Care for Life believes that we should stay away from active end of life because having life and death is too big for humans. But even for those who do not share this basic belief, the above shows that there are many more factors that give reason to stop drafting the scheme.
There is an urgent need for a life-ending protocol for critically ill children
Forty years ago, GP Wim Graafland ended the lives of two critically ill children in consultation with them and their parents. It is no longer possible to need a protocol, he writes.
Paula van Driesten made a photo book about palliative care for her son: ‘Everyone wants their child to live. But what does it cost? ‘
Medical treatment is aimed at making people better. But if recovery is not possible, how do you let your child die in a loving way? Paula van Driesten made a photo book about the search that she and her husband Magnus went on prior to the death of their son Tycho and found a solution with the Kinder Comfort Team.