The Cabinet is working on a life termination scheme for children up to the age of 12 who suffer unbearably and without hope

Editorial Medicalfacts/ Janine Budding April 17, 2023 – 8:05 AM

The current Scheme for Termination of Pregnancy and Termination of Life for Newborns (LZA/LP) will be amended and expanded to include termination of life in children aged 1-12. This concerns a small group of terminally ill children who suffer hopelessly and unbearably, whose palliative care options are not sufficient to relieve their suffering and who are expected to die in the foreseeable future. For that group, termination of life is the only reasonable alternative to end the hopeless and unbearable suffering of the child. Every year this concerns about 5 to 10 children.

This is what Minister Kuipers of Health, Welfare and Sport writes in the government’s response to the evaluation of the LZA/LP Regulation from March 2022, which was sent to the House of Representatives. The evaluation shows that the LZA/LP Scheme is not yet functioning properly. Doctors feel reluctance to perform late termination of pregnancy or termination of life in newborns. The Cabinet has decided to amend the current LZA/LP Scheme in line with the recommendations from the evaluation, in order to remove this reticence as much as possible and to improve the functioning of the scheme in practice. The scheme will also be expanded to include the assessment of termination of life in children aged 1-12 (L1-12). The research report Case description of the end of life of children aged 1-12 that was previously sent to the House of Representatives gives an idea of ​​the group of children to whom this regulation could possibly apply.

Minister Kuipers: “This is a particularly complex subject that deals with very harrowing situations. Situations you wouldn’t wish on anyone. I am pleased that, after intensive consultation with all parties involved, we have come to a solution that allows us to help these terminally ill children, their parents and also their practitioners.”

Procedure

Doctors must report the performance of LZA or LP to the LZA/LP assessment committee. Based on the due care criteria included in the LZA/LP Regulations, the latter assesses whether the doctor has acted with due care and sends its opinion to the Public Prosecution Service. The Public Prosecution Service gives the opinion of the assessment committee a heavy weight in the decision whether or not to initiate a criminal investigation and whether or not to prosecute. To meet the reluctance experienced by doctors to perform an LZA or LP and possibly also an L1-12 and then report it, the cabinet wants to change the procedure: There will be one assessment committee for both LZA/LP and L1-12 . The expertise of the committee members must be in line with both the problems of LZA and the problems of LP and L1-12, and also with the role that the assessment committee has in relation to the criminal assessment by the Public Prosecution Service. The assessment committee sends its opinion on a case to the Public Prosecution Service without the underlying medical file. In principle, therefore, the Public Prosecution Service bases its decision exclusively on the judgment of the assessment committee.

L1-12

The revised regulation does not formulate separate due care requirements with regard to termination of life in children aged 1-12. The professional group is asked to formulate the due care requirements on the basis of case studies and further development of standards. This means that a doctor must come to the conviction, based on prevailing medical opinion, that termination of life is the only reasonable alternative to remove the child’s hopeless and unbearable suffering.

Information provision

In addition, it is very important for a well-functioning scheme that there is good information for parents and doctors and that attention is paid to training and support for doctors if, in extreme cases, they want to end their lives. The government is responsible for providing good information together with the professional groups and the Knowledge Center for Palliative Care for Children. An impulse is also being given to the Physician Support Center for Children’s End of Life, which is part of the Knowledge Center for Pediatric Palliative Care. Doctors can go here for advice and support (also in advance).

The government expects that the scheme will function better in practice as a result of all the changes and tightening. The revision of the scheme is now being worked out in more detail. The regulation is expected to be published this year. An evaluation of the new regulation will take place within a number of years after its entry into force.

Source: Central government

Editorial Medicalfacts/ Janine Budding

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