Characteristics of autism, learning disabilities behind many euthanasia requests: study

Many requests for euthanasia or assisted suicide in the Netherlands were sparked by characteristics associated with learning disabilities and autism, according to a study by Kingston University in England.

The researchers, led by Irene Tuffey-Wijne, a professor of intellectual disability and palliative care, looked at 900 case reports of euthanasia and physician-assisted suicide between 2012 and 2021 in the Netherlands. These cases were in a public database. They found 39 cases that involved people with either learning disabilities or autism spectrum disorder, or both.

According to the researchers, about two-thirds of this group chose euthanasia “solely, or mostly, due to characteristics associated with their condition,” like anxiety or feeling out of place in society. In eight of the 39 cases, the reasons for the people’s unbearable suffering were “exclusively related” to autism or learning disabilities. They felt “unable to cope with the world, changes around them, and struggle to make friendships and connections.”

Another eight cases involved people who said that their learning disability or autism made it hard for them to cope with other non-life-threatening physical conditions. The same number said that their condition, combined with mental health problems, was why they wanted to die. In a third of the cases, the doctors explicitly noted that the individuals’ autism or learning disability were not treatable, which was a crucial consideration in determining that there was no prospect of improvement.

Of the people in the 39 cases, 77 percent listed loneliness as one of the causes of their suffering that made them ask for help in dying. 62 percent listed dependence on others, 56 percent a lack of resilience or coping strategies, and 44 percent a lack of flexibility and difficulty adapting to change.

According to Professor Tuffrey-Wijne, their findings show the need for an international philosophical and ethical debate on the criteria for euthanasia and how to handle such requests from vulnerable patient groups. She said it also highlighted the importance of individualized support services worldwide.

“What these individuals needed was a society where they felt they belonged, with people around them who not just accept and accommodate but welcome their unique ways of being,” she said. “There is no doubt some people feel helpless, suffer deeply and profoundly, and the support needed is complex, but hopefully there can be a culture shift and a big investment in services that are significantly under-resourced.”