For seriously ill children aged 1 to 12 years, there must be a life support scheme

Both doctors and parents say that these children’s lives are sometimes unnecessarily stretched, making them suffer inhumanely.

These are only a few children a year, and yet Eduard Verhagen, head of the Pediatric Department at UMCG, has argued for years: Children who suffer hopelessly and unbearably must be able to end their lives by a doctor. For even the few children a year have the right to a dignified end to life.

Verhagen is certainly not alone in his position; Previous research conducted by him and researcher Marije Brouwer had already shown that most pediatricians in the Netherlands involved in the care of terminally ill children want ‘euthanasia’ to be possible for this group. Minister Kuipers of VWS is now proposing a regulation in a letter to the House of Representatives, especially for these extraordinary cases.

“Euthanasia is not the right word, because here the Euthanasia Act does not apply. This is based on the patient’s ability to ask for his or her own end to life. These children can not always do that. Active termination of life is the right term, “says Verhagen.” Although these children are not considered legally competent, it is inconceivable that the will of the child is not taken into account. The doctor must make an effort to contact the child in a way that suits the child’s level of understanding. ”

This new scheme is similar to the scheme already in place for children from 0 to 12 months. This is known as the ‘Groningen Protocol’ because it was also the pediatricians from UMCG led by Verhagen who made an effort there. The Death Aid Act applies to children from the age of 12.

This new regulation therefore concerns a very small group of terminally ill children between the ages of 1 and 12, usually with congenital abnormalities in, for example, brain, lung or heart or metabolic diseases. Both doctors and parents say that the lives of these children are sometimes stretched unnecessarily, making them suffer inhumanely. If that suffering cannot be removed even with the best (palliative) care, doctors and parents are now powerless. In those situations, they want active end of life to be possible. “The regulation that the Minister is now proposing obviously requires due care. For example, the intolerable and hopeless disorder cannot be solved in any other way (palliative treatment is therefore not sufficient) ”, says Verhagen. “The doctor and the parents discussed in depth the diagnosis, the prognosis and the end of life. And as far as possible, the doctor has also discussed this with the child. Both parents must, of course, give their consent, and who is consulted with euthanasia at least one independent doctor. ”

As with the newborn scheme, all cases must also be reported and tested subsequently. In addition, it is very important for doctors that the prosecution indicates that they will not prosecute doctors, provided that all due diligence criteria are met.

“As I said, it is probably about less than 5 children a year in the Netherlands. But the numbers are not the most important part of this scheme: every child who dies and suffers unbearably in the dying process is one too many. We must not do this to these children, nor to their parents and doctors. The strength of this scheme is that it allows for a conversation between doctors, parents and sometimes the child himself: what are the options, what choices may there be, what can we count on when all resources are really depleted. With this scheme we can say to the parents: hopeless and unbearable suffering is not to be accepted. It gives parents courage.

The scheme will not enter into force until it has been completed. In the coming months, the letter to the Folketing may inform Minister Kuipers that he will return to it in October.

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