Thursday, July 13, 2023

Death by loneliness: Study of euthanasia in neurodiverse people

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Louise Kinross wrote an excellent blog article about Dutch adults with autism and/or intellectual disabilities who died by euthanasia.

According to a recent study, loneliness was the main reason for 30 of 39 Dutch adults with autism and/or intellectual disabilities to die by euthanasia, according to a study published in the British Journal of Psychiatry.

Kinross writes:
Physician reports revealed many despaired at being rejected by society. For an autistic man in his 50s with intellectual disability, "panic and despair were constant companions. The patient felt powerless to function in today's society and could not be the person he wanted to be, with a job and a family." An autistic man in his 20s "had felt unhappy since childhood and was persistently bullied because he was just a bit different.. [He] longed for social contacts but was unable to connect with others." A woman in her 80s with intellectual disability "suffered from the social isolation that her behaviour had led to... People thought her repulsive and nobody wanted to be near her."
Kinross explains that of the 39 people who died by euthanasia, 20 were women, 19 were men and almost half were under the age of 50. 15 of the 39 had an intellectual disability, 20 had autism, 4 had both. The deaths took place between 2012 and 2021. Kinross wrote:
Researchers at Kingston University in London analyzed doctors' reports that described the person's suffering, possible alternatives, discussions with the patient and other doctors, and how the suicide was carried out.

The aim was to identify what made pain "unbearable, with no prospect of improvement," which is one of six criteria that must be met.

About two-thirds of participants chose assisted suicide due to aspects of their disability, the scientists said, such as anxiety, loneliness and not feeling accepted. Of course, these states resulted more from the interplay between their way of being in the world and rigid social expectations.

For some, it was a combination of these factors and coping with physical illness or decline, or mental illness.

In addition to loneliness, being dependent on others, difficulty coping with life, and a lack of flexibility were factors.

Many physician comments located the problem in the person, as opposed to asking why society couldn't change to better accommodate them. "His intellectual disability and affective neglect in childhood had led to insufficient resilience to cope with suffering," one wrote of a man in his 50s. "...the patient was unable to build a normal life," explained a doctor of an autistic man in his 40s.

In one-third of cases, doctors specifically wrote that autism or intellectual disability were not treatable. For example: "Autism is incurable and treatment is purely symptomatic," wrote one in regards to an autistic woman in her 30s.

"The implicit message communicated to patients in granting [assisted suicide] requests on the basis of intellectual disability or autism-related suffering is that such conditions are indeed hopeless," the researchers wrote. "This is of concern, as is the risk that the option of [assisted suicide] hampers investment in appropriate treatments and societal changes."

In two-thirds of cases, doctors' reports didn't mention the patient's family or other important people in their life. Presumably this would have provided a more complete social picture, and perhaps been a source of alternative solutions.
Kinross concludes her article by stating:
"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," said lead investigator Irene Tuffrey-Wijne, a professsor of intellectual disability and palliative care at Kingston University.
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