Will legalized euthanasia and assisted suicide lead to unnecessary deaths because of an able-ist bias against intellectual disability and autism? The records of Dutch euthanasia review committees (Regionale Toetsingscommissies Euthanasie, RTE) provide a rich source of data for answering questions like this.
After examining some of them, four UK and Dutch researchers believe that the answer may be Yes. They conclude, in an article in BJPsych Open that “Examination of societal support for suffering associated with lifelong disability, and debates around the acceptability of these factors as reasons for granting EAS, are of international importance.”
Between 2012 and 2021, the Dutch RTEs received 59,996 euthanasia reports from doctors. Of these, 927 case summaries are in an open database to show how doctors and the committees made their decisions.
From this slender number, the researchers studied 39 case reports: 15 people with intellectual disability, 20 with autism spectrum disorder and 4 with both intellectual disability and ASD. The reports are not easy reading – these were people whose lives were complicated and difficult. But was their suffering unbearable and was there no prospect of improvement?
In their EAS reports, Dutch doctors must explain what the suffering consisted of, why they were convinced it was unbearable and how they came to the conclusion that there was no prospect of improvement. By studying these 39 cases carefully, the researchers reached some disturbing conclusions.
- Family connections of these people were weak or non-existent. Over three-quarters of patients described being lonely or socially isolated as a major cause of suffering.
- For more than half of patients, difficulty in coping with life or with the world (often described as a lack of resilience) was a major contributor to their EAS request.
- Rigid coping strategies, a need to stick to routines, difficulties in considering alternatives, and compulsive behaviours were a major cause of suffering.
- Oversensitivity to stimuli was noted in about a quarter of the patients.
The researchers concluded: “The acceptance of these as criteria for ending life could reflect a tacit endorsement of society’s failure of inclusion of people with ASD/intellectual disability and a failure to ensure that resources and competencies are available to assist people to cope with the challenges society and daily living present.”
They go on to say: “Dutch law requires that EAS is permitted only in cases where the suffering has a medical basis. This raises real questions about accepting factors such as ‘difficulty in coping with changing circumstances’ as reasons for EAS, as these are associated with lifelong disability rather than an acquired medical condition. The implicit message communicated to patients in granting EAS requests on the basis of intellectual disability or ASD-related suffering is that such conditions are indeed hopeless. This is of concern, as is the risk that the option of EAS hampers investment in appropriate treatments and societal changes.”
One interesting feature of these cases is that the patient’s family doctor often refused their request for euthanasia. So, in 69% of cases, a doctor from the Expertisecentrum Euthanasie (Euthanasia Expertise Centre) did the job. This is a private group whose doctors take a very broad view of eligibility for euthanasia. It began as a project of the NVVE, the Dutch Right to Die Society.