Some Dutch people who request euthanasia cite autism or an intellectual disability, researchers say
LONDON (AP) — Several people with autism and intellectual disabilities have been legally euthanized in the Netherlands in recent years for saying they couldn’t lead normal lives, researchers have found.
The cases include five people under the age of 30 who cited autism as either the sole reason or a major contributing factor for euthanasia, setting an uncomfortable precedent that some experts say pushes the boundaries of what the law originally intended.
In 2002, the Netherlands became the first country to allow doctors to kill patients at their request if they met strict requirements, including having an incurable disease that causes “unbearable” physical or mental distress.
According to the Dutch government’s euthanasia review committee, nearly 60,000 people were murdered at their own request between 2012 and 2021. To show how the rules are applied and interpreted, the commission released documents pertaining to more than 900 of those people, most of whom were elderly and had conditions such as cancer, Parkinson’s and ALS.
Irene Tuffrey-Wijne, a palliative care specialist at Kingston University in Britain, and her colleagues reviewed the documents to see how Dutch doctors handled euthanasia requests from people with autism or lifelong mental disabilities. She published their findings in BJPsych Open magazine in May.
Of the 900 people with publicly disclosed records, 39 were autistic and/or mentally disabled. A handful were elderly, but 18 of them were under 50.
Many of the patients cited various combinations of psychological problems, physical conditions, illnesses or age-related problems as reasons for seeking euthanasia. At thirty, loneliness was one of the causes of their excruciating pain. Eight said the only causes of their suffering were factors related to their intellectual disability or autism: social isolation, a lack of coping strategies, or an inability to adjust their thinking.
“I have no doubt that these people suffered,” said Tuffrey-Wijne. “But is society really okay with sending this message, that there’s no other way to help them and that it’s just better to be dead?”
Other countries, eg BelgiumCanada and Colombia have legal euthanasia, but the Netherlands is the only one to share detailed information about it potentially controversial deaths, provide the best insight into emerging trends in assisted dying. Still, the data is limited to what doctors reveal. So there may be other factors that have not been disclosed or cases where the patient’s autism or intellectual disability has not been noticed.
Because the commission only releases selected data, it is also impossible to know the true number of people with autism or intellectual disabilities who have been murdered at their own request.
Among the eight patients named by researchers was an autistic man in his 20s. His file stated that “the patient had been unhappy since childhood”, was regularly bullied, and “desire to socialize, but unable to connect with others”. The man, who was not named, opted for euthanasia after deciding that “having to live this way for years was an abomination”.
The data also included an autistic woman in her 30s who also had borderline personality disorder. She was offered a place in a residential care home, but her doctors said she couldn’t maintain relationships and found contact with others ‘too difficult’.
In a third of cases, Dutch doctors concluded that autism and intellectual disability were untreatable and that there was “no prospect of improvement,” the researchers wrote.
Simon Baron-Cohen, director of the University of Cambridge’s Autism Research Center, said it was “abhorrent” that people with autism were being euthanized without receiving further support.
He noted that many autistic people struggle with depression, which can compromise their ability to make a lawful request to die. He also said that an autistic person asking for death may not understand the complexity of the situation.
Dr. Bram Sizoo, a Dutch psychiatrist, was concerned that young people with autism saw euthanasia as a viable solution.
“Some of them are almost excited at the prospect of death,” Sizoo said. “They think this will be the end of their troubles and the end of their family’s troubles.”
A representative of the Royal Dutch Medical Association said it is up to doctors to determine whether someone meets the criteria for euthanasia. The group said many cases involving patients with autism were “very complex” and that “age itself is not a decisive factor in determining whether a person is suffering unbearably.”
Kasper Raus, an ethicist and professor of public health at Ghent University, said the types of people seeking euthanasia in both the Netherlands and Belgium have changed over the past two decades. When euthanasia was legalized, he said, the debate was about people with cancer, not people with autism.
Tim Stainton, director of the Canadian Institute for Inclusion and Citizenship at the University of British Columbia, wonders if the same is happening in Canada, which arguably has the the world’s most permissive euthanasia laws and who does not keep the kind of administration that the Netherlands does.
“Helping people with autism and intellectual disabilities die is essentially eugenics,” Stainton said.
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The Associated Press Health and Science division is supported by the Science and Educational Media Group of the Howard Hughes Medical Institute. The AP is solely responsible for all content.
