Doctors have been advocating for the regulation for years, but now the cabinet has finally agreed: there will be a regulation for life termination of seriously ill and untreatable children aged one to twelve. Currently, there is only regulation for babies up to one year old and children over twelve. Martin Buijsen, Professor of Health Law at Erasmus School of Law, explains the current regulations regarding active termination of life and shares his expectations about the new regulation.
Doctors can only treat incurably ill children who are hopelessly and unbearably suffering with palliative sedation (pain treatment). In addition, doctors and parents can either refrain from further treatment or decide to perform mortification; stopping the administration of food and drink. These interventions can cause a child to die more quickly, but the process can also be painful and lengthy.
Current regulations
There are several regulations on active termination of life. First, there is the Euthanasia Act, which applies to competent patients aged twelve years and older. There is also the Late Termination of Pregnancy and Termination of Life in Seriously Suffering Newborns Regulations, which allows active termination of life for children up to one year old.
"So for one-to-twelve-year-olds, there was nothing", Buijsen says. "Of course, there were rules; the criminal prohibitions on murder, manslaughter and life termination on demand, and the possibility of a cry of force majeure in the sense of emergency (conflict of duties). But paediatricians have always had problems with these rules. In their view, they offered insufficient legal certainty. Paediatricians, but by no means all, have worked for years to close this 'gap'."
New regulation
The regulation the government wants to introduce focuses on a small group of incurably ill children who are suffering hopelessly and unbearably. "Hopelessly is the so-called objective component of suffering: measured by objective medical standards, the suffering should no longer be able to be removed," Buijsen explains. "Unbearably is then the subjective component of suffering; the patient must experience his or her suffering as unbearable."
Whether a child aged one to twelve suffers unbearably is difficult to determine. "The problem with these patients is that it is much harder for them to articulate the severeness", Buijsen says. "With these patients, the unbearably of suffering has to be 'derived' from outward behaviour."
Buijsen expects the existing regulation of zero-to-one-year-olds to be extended to zero-to-twelve-year-olds. "It is not that the age limit of the Euthanasia Act will be lowered," the health law professor says. "The new regulation will also include due diligence requirements, a reporting obligation for doctors who actively end a child's life, and reports will be reviewed by a national expert committee, based on those requirements."
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