The Dutch Minister of Health has informed the House of Representatives in a letter that there will be a (further) regulation for doctors for active termination of life in children aged 1-12. This extends the current existing regulation that applies to children up to the age of one and from the age of twelve. Research has shown that many paediatricians and parents of terminally ill children, who suffer hopelessly and unbearably and who will die in the foreseeable future, need this option. "We found out exactly how the death of children between the ages of 1 and 12 works. That turned out not to be very good on all fronts and clearly gave cause for improvement”, said professor of children’s palliative care Eduard Verhagen, who is also head of the Beatrix Children’s Hospital of the University Medical Center Groningen. Prof. Verhagen led the research and is part of the advisory committee for this regulation.
Professor Verhagen about reaching this milestone and the sequel:
"The arrangement is necessary because children under the age of twelve can never legally request euthanasia because they are not legally competent. This is an essential condition for euthanasia in the Netherlands. If there is a wish to end life, parents must ask for active termination of life. This is currently prohibited for children between the ages of one and twelve." Parents and doctors currently only have the option of choosing palliative sedation, refraining from medical treatment, or dying by stopping eating and drinking. "These options can hasten death, but a child's dying process can take days or even weeks."
Five to ten children a year
An estimated five to ten children per year are eligible for the new regulation. These are terminally ill children who suffer without hope and unbearable suffering and for whom all the possibilities of palliative care are not or no longer sufficient to alleviate their suffering. They are expected to die in the foreseeable future. Prof. Verhagen: "Often these children suffer from metabolic disorders, neurological disorders and brain tumors. The diseases are progressive and in some cases children suffer for a long time, without any prospect of improvement. Death can be accompanied by very unpleasant and unexpected symptoms, such as the threat of choking, becoming very short of breath or epileptic seizures that cannot be stopped. For many parents this is a specter, with the fear that they will not be there when their child dies."
Research into medical end-of-life decisions
Parents and paediatricians caring for these children rang the bell about five years ago. “They found it curious that we do have a regulation for newborns and children from the age of twelve, but not for the intermediate group.'' An initial inventory by the Dutch Paediatric Association (NVK) showed that there is a need for the option of life-ending treatment in this group. At that time, however, there was still insufficient insight into how care and decisions in the final phase of life are valued by those involved. Nor was it known how often parents of children in this age group ask for active termination of life. The University Medical Center Groningen, Erasmus Medical Center Rotterdam and the Academic Medical Center Amsterdam on behalf of the Dutch Association for Paediatrics (NVK) carried out four years of research into medical decisions regarding the end of life of children aged one to twelve, on behalf of the Ministry of Health.
Better quality and availability of pediatric palliative care
The research report published on September 28, 2019 and presented to the Minister of Health contains two groups of recommendations:
"The first group of recommendations concerns the need to make children’s palliative care more available and improve its quality. Parents experience bottlenecks in symptom management, communication with the child, planning palliative care and care for family members. The Dutch Association for Paediatrics (NVK) and the Center of Expertise in Children’s Palliative Care have a major role to play in removing these bottlenecks and making palliative care even more available. This should be done by increasing the knowledge and support and awareness of national Doctors Support Team for End of Life in Children, among other things through a leading and directing role of the Center of Expertise, which has been working on this since 2014.”
This will provide doctors with palliative expertise that helps the decision-making around the end of a child's life. Steps must also be taken in other areas. The distinction between palliative sedation and active termination of life is sometimes unclear to paediatricians and needs to be clarified. The Dutch Association for Paediatrics (NVK) is tackling this together with the Integrated Cancer Center of the Netherlands (IKNL) in the current revision of the guideline palliative care for children (from 2012) that will be completed in the first half of 2021. This guideline also indicates what role parents should and can play in end-of-life decision-making and how the doctor can fulfill this properly.
Life termination available and negotiable
The second part of the recommendations concerns the desire for clear regulations on termination of life in situations where doctors cannot remove unbearable and hopeless suffering and other options do not work sufficiently.
"Parents clearly state that the possibility of ending life must be negotiable in order to stop excessive suffering. An important conclusion from the research is that this conversation does not always take place. Sometimes the question of parents about termination of life is answered briefly with "no".
As a result, parents get the feeling that this subject is taboo in the consulting room and were afraid to mention it. Many paediatricians were shocked by this." The recommendations are sufficient reason for the Minister of Health to make these clear regulations possible. The regulation is intended to protect the interests of children in this age group and ensure that affected doctors are legally safeguarded.
Active termination of life when palliative care no longer works
Prof. Eduard Verhagen emphasizes that the regulation serves to help parents and doctors when all options for children who suffer unbearable have been exhausted.
"When palliative care no longer works, it is important that parents and therapists can opt for active termination of life. The condition is that all possibilities of palliative care must be discussed and that we do not take that step too easily. It is sometimes thought that if you provide optimal palliative care, active termination of life is not necessary to enable dying with dignity. But unfortunately that is not the case. We encounter exceptional situations in which optimal palliative care does not succeed in relieving suffering. That is why the regulation is necessary. I hope that we can also make palliative care even more available, so that the need for active termination of life in practice will become even less than it already is. Often the main thing is that parents can talk to doctors about it in time, even if they don't want to use it. We see that parents are sometimes better able to anticipate this than practitioners. They find it very difficult to discuss this because they are not allowed to do anything by law. I am pleased with the outcome because these conversations between doctors and parents can take place better and we are taking a step towards transparency and legal certainty."
There has also been criticism of the cabinet's choice in The Netherlands. It could be a precursor to active termination of life in other incapacitated and legally incompetent people, such as severely demented people. So says a Dutch medical ethicist: "I think it is an extremely unwise decision, because we have fought hard to end life in the Netherlands (euthanasia law) as being at the request of the person concerned. We have instilled confidence in this at home and abroad. That consensus - that you only do it with people who can explicitly ask for it - is crumbling."
Verhagen knows the fear and partly understands it: "I look at it differently because the research tells us exactly what the problems are and what to do about it. The syndromes that we encounter in children do not or hardly occur in adults. For me that means that you cannot say: what fits for this group, fits older people. And if you do not dare to take a well-thought-out and necessary step for fear of a sliding scale, you will disadvantage that group for which you are trying to do something. I would consider that the wrong signal. I do think that we should make that arrangement so good that it cannot be misused for applications for which it is not intended. I also hope that care providers will ask attention to do something for other incapacitated people who suffer unbearably."
Criticism from abroad
It is expected that other countries can also react critically, since we are the first and only country where this regulation will apply.
"I understand that it is criticizing, since we look at the end of life differently here than in other countries. In the Netherlands we find it important that the end of life takes place as optimally as possible. We collect a lot of knowledge about this. You can also see this in the euthanasia law and the regulation for newborns. In the past, we were rightly accused of being able to arrange this properly, but of providing too little palliative care to children. That accusation is no longer justified. We made up for that backlog very quickly. So the criticism that is coming now can no longer be about that, but about a different perspective. It would be nice if, as a result of this development, other countries would reconsider whether they have properly arranged end-of-life care for children. That is the best possible outcome."
The law will not be changed for this regulation. There will be a further elaboration of a ground for exclusion from punishment for doctors, which will extend the regulation for late termination of pregnancy and termination of life in newborns (2005, 2014). The ground for exclusion from punishment must mean that the doctor is not punishable. This elaboration is done together with the Public Prosecution Service (OM) and the Dutch Association for Paediatrics (NVK).
The Minister wants to complete the new regulation for children’s aged 1-12 by mid-May 2021.
"That's ambitious, but realistic. It will take quite some effort to get the regulation on paper and well thought out. We help to make the regulation so good that we achieve our goal. To this end, an important coordinating and facilitating role is reserved for our Dutch Center of Expertise in Children’s Palliative Care and the national Doctors Support Team for End of Life in Children. Together with these stakeholders, we will also continue with the improvement from the first recommendations."