Some Dutch people seeking euthanasia cite autism or intellectual disabilities, researchers say

June 28, 2023  -LONDON (AP) — Several people with autism and intellectual disabilities have been legally euthanized in the Netherlands in recent years because they said they could not lead normal lives, researchers have found.

The cases included five people younger than 30 who cited autism as either the only reason or a major contributing factor for euthanasia, setting an uneasy precedent that some experts say stretches the limits 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 illness causing “unbearable” physical or mental suffering.

Between 2012 and 2021, nearly 60,000 people were killed at their own request, according to the Dutch government’s euthanasia review committee. To show how the rules are being applied and interpreted, the committee has released documents related to more than 900 of those people, most of whom were older and had conditions including cancer, Parkinson’s and ALS.

Irene Tuffrey-Wijne, a palliative care specialist at Britain’s Kingston University, and her colleagues reviewed the documents to see how Dutch doctors were dealing with euthanasia requests from people with autism or with lifelong mental impairments. They published their findings in the journal BJPsych Open in May.

Among the 900 people with publicly posted case files, 39 of them were autistic and/or intellectually disabled. A handful were elderly, but 18 of them were younger than 50.

Many of the patients cited different combinations of mental problems, physical ailments, diseases or aging-related difficulties as reasons for seeking euthanasia. Thirty included being lonely as one the causes of their unbearable pain. Eight said the only causes of their suffering were factors linked to their intellectual disability or autism — social isolation, a lack of coping strategies or an inability to adjust their thinking.

“There’s no doubt in my mind these people were suffering,” Tuffrey-Wijne said. “But is society really OK with sending this message, that there’s no other way to help them and it’s just better to be dead?”

Other countries, including Belgium, Canada and Colombia, have legal euthanasia, but the Netherlands is the only one that shares detailed information about potentially controversial deaths, providing the best window into emerging trends in assisted dying. Still, its records are limited to what doctors disclose. So there could be other factors that weren’t released or cases where the patient’s autism or intellectual disabilities weren’t noted.

Because the committee releases only select records, it’s also impossible to know the true number of people with autism or intellectual disabilities killed at their own request.

Among the eight patients cited by researchers were an autistic man in his 20s. His record said “the patient had felt unhappy since childhood,” was regularly bullied and “longed for social contacts but was unable to connect with others.” The man, who was not named, chose euthanasia after deciding that “having to live on this way for years was an abomination.”

The records also included an autistic woman in her 30s who also had borderline personality disorder. She was offered a spot in a supported living center, but her doctors said she could not maintain relationships and deemed contact with others “too difficult.”

In one-third of cases, Dutch doctors concluded autism and intellectual disabilities were untreatable and that there was “no prospect of improvement,” the researchers wrote.

Simon Baron-Cohen, director of Cambridge University’s Autism Research Centre, said it was “abhorrent” that people with autism were being euthanized without being offered further support.

He noted that many autistic people struggle with depression, which could compromise their ability to make a lawful request to die. He also said an autistic person asking to die might not grasp the complexity of the situation.

Dr. Bram Sizoo, a Dutch psychiatrist, was disturbed that young people with autism viewed 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 problems and the end of their family’s problems.”

A representative of the Royal Dutch Medical Association said it was up to doctors to decide if someone meets the criteria for euthanasia. The group said many cases involving patients with autism were “highly complex” and that “age itself is not a decisive factor to determie whether a person suffers unbearably.”

Kasper Raus, an ethicist and public health professor at Belgium’s Ghent University, said the kinds of people seeking euthanasia in both the Netherlands and Belgium have shifted in 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 thing is happening in Canada, which arguably has the world’s most permissive euthanasia laws and which doesn’t keep the kinds of records that the Netherlands does.

“Helping people with autism and intellectual disabilities to die is essentially eugenics,” Stainton said.

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