Active end of life possible for children under 12

The cabinet decided to implement a system to end the life of seriously ill and incurable children aged 1 to 12, which pediatricians have been campaigning for for years. So far only something has been offered for children over 12 and babies up to one year old.

It is a small group of terminally ill children who suffer desperately and unbearably and whose palliative care options are not sufficient to alleviate their suffering. Children who are expected to die of their disease in the foreseeable future.

Diseases such as congenital malformations or metabolic disorders of the brain, lungs or heart. Doctors and parents alike believe these children’s lifespans are sometimes unnecessarily prolonged.

end of human life

The issue is politically sensitive as it concerns mentally handicapped children. It is precisely this inadequacy that has caused controversy among the elderly with dementia in recent years.

The Government stressed that ending life is possible only if the doctor and parents are the only reasonable alternative to ending the child’s hopeless and unbearable suffering. “It will affect children with a serious illness or illness where death is inevitable and these children are expected to die in the foreseeable future,” the Cabinet wrote in its letter to Parliament.

It only affects a few children, possibly less than five children a year. Eduard Verhagen, head of pediatrics at UMCG Groningen, who has been an advocate for the program for many years, believes these children too have the right to a dignified end of life.

In 2019, Nieuwsuur spoke to doctors and parents who were faced with a situation where a child was suffering so much but was not actively allowed to take his life:

Most pediatricians caring for terminally ill children in the Netherlands want this group to be able to end their lives. A doctor can currently only treat pain with palliative sedation, in which a sleeping pill is given to the patient by injection or intravenous infusion. This happens most often. Doctors and parents may also forego other treatments, such as medication. Or worse: to die, that is, to stop giving food and drink.

All these processes can hasten death, but it can take days or even weeks for a child to die. The Euthanasia Act does not apply to these children. It is based on mental competence – the patient can demand the end of his or her life – but these young to very young sick children are not always able to do so.

The decree states that unbearable and hopeless suffering cannot be resolved otherwise. The government wants it to formulate additional due diligence requirements based on professional experience.

gentle death

It is important for doctors to state that no prosecution will take place if all due diligence criteria are met. All reports are handled by a committee with appropriate medical expertise, chaired by a criminal defense attorney. The cabinet writes that the prosecution is getting farther and farther away.

Suzanne van de Vathorst, who has been appointed professor of “quality in the final stages of life and death” at the University of Amsterdam, does not see this new arrangement as good news. “Because doctors are afraid of justice. Euthanasia law is designed in such a way that a euthanasia commission makes the final decision. And if he thinks you’re being careful, it’s over. With this arrangement, it’s less clear and “Doctors find it very, very exciting.”

Van de Vathorst said, “The question is, how does the child die?” says. “So I’m in favor of doctors finding a way to ensure a gentle death. But I don’t think that will happen with this order.”

experiencing time pressure

The Dutch system is unique and the most comprehensive in the world. In Belgium there is an option to end the lives of seriously ill, severely suffering, incurable children for years, but there the only option is for the child to have a say.

Ilse Zaal-Schuller from the Dutch Association of Mentally Handicapped Physicians, who has her doctorate on end-of-life decision-making in children with severe multiple disabilities, also has difficulties with the regulation, especially with the last age of 12. Also, the Euthanasia Act applies.

“The fact that doctors and parents are under time pressure around the age of twelve cannot be ignored. And I think this is very undesirable. Of course, when it comes to an irreversible decision.

It also finds that doctors are not making enough use of palliative care. “I think parents are feeling lonely right now because these conversations aren’t being held on time anyway. Or that they don’t always have enough time. Much remains to be done to improve palliative care for this group. And then the question is whether there is still such a need for this system.”

The Ministry of Health announced that more importance is given to this care in the pediatric palliative care guide and discussions are held with all relevant parties.

Source: NOS

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