Stefaan van Gool has treated brain tumors in children for almost 20 years. None of his young patients has asked for help to die. The Belgian doctor is now bracing for that possibility under a controversial law that’s the first to end age limits for the young.
Terminally ill children may request euthanasia from doctors starting this month. To qualify, they must be in unbearable pain and be assessed by two doctors and a psychiatrist or psychologist. Their legal representatives must also consent.
The law makes Belgium, which legalized euthanasia for adults in 2002, the only country to extend such a right to all children. The Netherlands has permitted euthanasia in children 12 years or older since 2002. The law, which passed Belgium’s lower house of Parliament on Feb. 13 and was signed by King Philippe this month, capped a months-long debate within the country and prompted worldwide reaction.
“It was one of those take-your-breath-away moral moments,” Arthur Caplan, who heads the division of medical ethics at New York University’s Langone Medical Center, said in a telephone interview. “When you’re under 16, most parents don’t let children decide what to watch on television.”
Van Gool, the clinical head of pediatric neuro-oncology at University Hospital Leuven and a father of four, says the new law is “very, very dangerous.” He was one of about 200 pediatricians who signed a petition opposing it. Doctors have medical solutions to relieve the pain of terminally ill children, he says.
“We can take care of their symptoms,” he said in a telephone interview. A euthanasia request “has never happened to me,” he said. “I don’t know how I will react” if it does.
He wouldn’t be forced to carry out euthanasia under the new law, according to Jean-Jacques De Gucht, an Open Flemish Liberals and Democrats senator from Aalst and a co-sponsor of the measure.
The measure was motivated by a desire to lift the arbitrary cutoff at age 18, De Gucht said in a telephone interview. “There is no age limit on suffering,” he said. “We have to look at the maturity of the people, and if they’re completely able to make the choice, not their age.”
His proposal met with street protests in Brussels and opposition from the country’s three biggest religious communities. Spanish activists presented Belgium’s king with an international petition signed by more than 200,000 Europeans asking him not to sign the bill.
The debate has raised questions about when children develop the capacity to understand the consequences of an irreversible act and to consent to it, and whether the requirements in place are sufficient to protect against misuse.
Opponents of the bill have also challenged whether “terminal” illness and “unbearable” pain can be objectively defined and worry that a sick child may be manipulated into an early death, especially in divided families.
Van Gool and Caplan are among those who argue that teenagers, much less children younger than 12, don’t understand euthanasia and its implications well enough to be granted it. The age at which children can consent to sex in Belgium is 16.
“Insurance companies will give a higher rate for 18- to 22-year-olds because young adults are more impulsive and have less control,” van Gool said. “Only for killing yourself Belgium accepts you have full control over your impulses.”
Jan Bernheim, a retired Belgian oncologist and part-time professor at the Free University of Brussels who says he has helped about 30 adult patients who have requested euthanasia, says the law recognizes that some children are exceptionally mature -- more than some adults.
“They have gone through several years of intensive treatment,” Bernheim said. “They have been under existential threat for years, they have seen young people their age in the wards and they have seen them go downhill and sometimes even die.”
He compares the mature children to Anne Frank, the teenager who hid in an Amsterdam attic during World War II and who chronicled her experience in “The Diary of a Young Girl.”
“No one would dispute that Anne Frank was a mature person at 13 or 14,” Bernheim said. “Not all children are like this but there are some who are.”
There have been no requests to use the law so far, according to the group that tracks euthanasia cases in Belgium. In practice, Belgium probably won’t allow euthanasia for children under 12 if their ability to grasp consequences and consent is taken into account, says Nancy Berlinger, a research scholar at bioethics institute the Hastings Center in Garrison, New York.
That capacity begins to emerge at about seven or eight years and develops through childhood into the third decade of life, according to Berlinger. Doctors and scientists tend to recognize that older adolescents may have the capacity to make medical decisions, especially concerning reproductive health and contraception.
“In practical terms, that rules out most people below the age of younger adolescents, or seven to 12 years,” Berlinger says. She predicts that children requesting euthanasia will be “extremely rare” in Belgium. In the 12 years since the Netherlands allowed euthanasia for children from age 12, five have been granted it, according to Nicole Visee, general secretary of the regional review committees, which keep records of deaths that occur under the law.
Under the new Belgian law, two doctors must certify the child is suffering “unbearably” from a physical condition and a psychiatrist or psychologist must attest that he or she is mentally sound. The doctors must assess the child’s capacity to “discern” what the procedure involves, a test defined in Belgium’s civil code.
Penney Lewis, a law professor at King’s College London, said the Belgian provision defines terminal illnesses as those in which death is expected within “days, weeks, months,” or probably less than one year. In the U.S. state of Oregon, adult euthanasia law specifies a time period of six months.
“It’s never perfect, there’s always uncertainty,” said Lewis, who is co-director of the college’s Centre for Medical Law and Ethics. “We know there are patients who received a prescription in Oregon and are still alive six months later.”