On 14 April 2014, the cabinet decision was taken that a regulation will be introduced for the termination of life of sick children aged 1 to 12 who are suffering seriously and with no prospect of improvement. This will make the Netherlands the first country in the world with a regulation like this. In this article, we explain how all those involved are working to be able to implement this scheme properly in the future.

The NVK and the Knowledge Center for Palliative Care for Children have been working with various stakeholders since 2015 to realize this scheme. 'During this period, the Ministry of Health, Welfare and Sport worked very carefully on the realization of this scheme, in close contact with the professional group and based on the experiences of parents and doctors. 'Most paediatricians and parents involved in pediatric palliative care are relieved that the scheme is finally being introduced,' says Meggi Schuiling-Otten, director of the Knowledge Centre. 'Gradually, I was often asked whether it wouldn't be too long before the scheme comes into effect. But such a complex regulation requires careful, ethical and legal considerations and that takes time. This issue is too complex for that. We are the first country in the world to introduce a regulation for mentally incompetent children.' Moreover, she says, 'this time has also been necessary to do proper research and to first optimize the palliative care these children need. In the run-up to this scheme, we have set up Children's Comfort Teams and Integrated Child Care Networks throughout the country. Knowledge and training is also much better and available as standard.

Unbearable suffering

Despite all the improvements and developments in pediatric palliative care, there remains a small group of children who suffer unbearably in the last weeks of life. Often children with very complex, rare diseases. 'Despite all efforts and the excellent care and resources that we have available for good palliative care, we fail to alleviate the suffering of this small group of children. These children are usually difficult to sedate, for example because they already receive such heavy medication during their lives. They also often have unbearable pain and other forms of discomfort. Care professionals and parents are then powerless, are desperate and wonder: why should this child suffer hopelessly and should it not die comfortably, where the end of life is already inevitable? Not all medical professions and patient representatives are positive about this regulation. For example, there are concerns from religious beliefs that are understandable. Or the Mental Disabled Doctors, they indicate that palliative care for children within the care for the disabled still needs to be improved. We share this insight. Pediatric palliative care deserves much more attention in care for the disabled, and at the same time we know that this would not solve anything for this small group of children. After all, these are situations in which palliative options fail to alleviate their suffering. At the end of life of this small group of children, we come to the limits of manufacturability in medicine. To stop suffering, some parents currently choose to let their child die by stopping fluids and nutrition. Practice shows that this process can take a long time in children, in the worst case up to several weeks. All those involved experience this as degrading and unbearable to watch. That is why it is important that this arrangement is made, that mortification is no longer the only option when the end-of-life suffering of seriously ill children has become unbearable. This arrangement is a form of mercy.”

Steps still to be taken

Based on an evaluation , it has now been decided to extend the current Late Pregnancy Termination and Newborn Termination scheme, which we already have in the Netherlands, to children aged 1 to 12 years. The draft scheme has now been developed. The date of entry into force and the regulation will be published in the Government Gazette. It is not yet known exactly when that will happen. This is expected to be January 1, 2024. According to Eduard Verhagen, pediatrician and professor of pediatric palliative care, who has worked for years on the arrival of this scheme, we are not there yet. 'Once the regulation enters into force, it is important that doctors and parents have confidence in and knowledge of the regulation, so that it can be used as intended. We still have to take a number of steps for that.' Together with the professional group and patient associations, the knowledge center is preparing the following matters:

• A communication strategy about the scheme is being developed so that the information becomes accessible to everyone, people become familiar with the scheme and know what it entails and what it does not. The scheme will also soon be visible on: www.lzalp.nl .
  
  
• Children's Comfort Teams are being trained about the scheme because we expect that they will receive many questions about this. Think of questions such as: 'which part of palliative care does this actually concern?', or: 'Where is the boundary between symptom control and active termination of life?' With training we want to ensure that they soon feel familiar with the material and can play a meaningful role in this for parents and other healthcare professionals.
  
  
• An important condition for using the scheme is that doctors who are considering active termination of life submit their case for advice. An advisory committee is set up consisting of physicians specialized in child palliative care and sedation, lawyers and ethicists, to which doctors submit whether they have actually done everything to alleviate the suffering and have taken all the necessary steps. This is necessary to demonstrate to the committee later that all due care criteria have been met. It is currently being examined whether the Doctors' Support Center of the knowledge center can be set up differently for this purpose.
  
  
• We are looking for cooperation and provide explanations to the Public Prosecution Service (OM) about the scheme. They are involved because the regulation concerns persons who are incapacitated and is therefore part of the Penal Code. After termination of life, a report is made to the Public Prosecution Service. They give their final assessment, based on the context in which the assessment of the multidisciplinary assessment committee carries a lot of weight. It is important that it can then be demonstrated that the termination took place in a situation of unbearable and hopeless suffering and not in a criminal context. Careful preliminary work by the advisory committee is therefore essential to prevent doctors from ending up in this area. That is a sore point for doctors. To ensure that the regulation is used in the future, we ask the Public Prosecution Service to share their vision of the regulation with the people involved in its application. With this we want to minimize the distance between doctors and the Public Prosecution Service, so that there are no misunderstandings and, due to the due care criteria that have been drawn up, minimize the risk of prosecution.

New regulations

It is expected that the scheme will apply to no more than five to ten children per year. The case description that will be added to the scheme and that results from research describes which children the scheme will apply to. How many and what situations we will encounter exactly is unknown and we have to experience. Eduard Verhagen: 'We must realize that we are making regulations for an action that has never happened before in practice. Once the regulation is in place, we shouldn't stop thinking about it either.' Based on findings, new additional criteria can be formulated and added. The evaluation of the legal procedure and aftercare is part of making this scheme a success. 'And success does not mean that we have been able to apply the scheme, but the times that we have succeeded in making good dying a topic of discussion. That the choice of active termination of life is open for discussion and that people have been able to consider it.'