In two-thirds of the cases studied, the characteristics of autism or intellectual disability were the sole or major contributing cause of suffering.
A new study of the reasons some people in Holland have asked for physician-assisted suicide and euthanasia reveals heart-wrenching suffering in their lives. But the scientists involved in the research ask whether there might be ways to alleviate that suffering other than ending their lives.
Researchers at Britain’s Kingston University poured through publicly available records in The Netherlands in cases dealing with the assisted suicide or euthanasia of people with intellectual disabilities and/or autism.
“Factors directly associated with intellectual disability and/or ASD [Autism Spectrum Disorder] were the sole cause of suffering described in 21% of cases and a major contributing factor in a further 42% of cases,” the team found. “Reasons for the EAS [euthanasia or assisted suicide] request included social isolation and loneliness (77%), lack of resilience or coping strategies (56%), lack of flexibility (rigid thinking or difficulty adapting to change) (44%) and oversensitivity to stimuli (26%). In one-third of cases, physicians noted there was ‘no prospect of improvement’ as ASD and intellectual disability are not treatable.”
“There’s no doubt in my mind these people were suffering,” said Irene Tuffrey-Wijne, a palliative care specialist at Kingston University. “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?”
The authors of the paper are experts in the fields of intellectual disability and palliative care, and come from The Netherlands and the UK.
Lonely and isolated
Between 2012 and 2021, Dutch euthanasia review committees (known as Regionale Toetsingscommissie Euthanasie, or RTE) received 59,996 notifications of assisted suicide or euthanasia requests.
The study looked at 39 case reports. Of those, 15 people had intellectual disability, 20 had autism and four had both intellectual disability and autism.
An autistic man in his 20s, for example, “had felt unhappy since childhood and was persistently bullied because he was just a bit different from others,” the study said. “He longed for social contacts but was unable to connect with others. This reinforced his sense of loneliness. The consequences of his autism were unbearable for him. … The prospect of having to live on in this way for years was an abomination to him and he could not bear it.”
The 39 reports contained the physician’s written reports of the nature of the patient’s suffering, possible alternatives to EAS, discussions between physicians and patient, the EAS request, the consultations with other physicians (including second independent opinion), how the EAS was carried out, any further verbal explanations requested from the physician by the RTE, and the considerations and verdict of the RTE.
Of the 39 cases, 19 patients (49%) had intellectual disability and 24 (62%) had ASD; of these, 4 (10%) had both intellectual disability and ASD. All age groups were represented, … Cancer (the predominant cause of suffering in 61% of all EAS cases in The Netherlands) was mentioned for 3 patients (8%). Psychiatric conditions were mentioned for 25 patients (64%). Of these, depression was the most common (31% of patients), followed by obsessive–compulsive disorder, borderline personality disorder and psychosis (26%, 21% and 21% respectively). Other notable characteristics included suicidal thoughts or suicide attempts (44%), childhood trauma, including abuse and neglect (18%), adult trauma, including life events such as bereavements (21%), and substance misuse (13%).
In eight cases (21%), the only causes of suffering described were factors directly associated with intellectual disability or ASD. Typically, these people were unable to live with the characteristics of ASD/intellectual disability and could not cope with the world.
Over three-quarters of patients described being lonely or socially isolated as a major cause of suffering. This often stemmed from feeling rejected and different from others.
Dutch law requires that a number of due care criteria be considered before a request for euthanasia or assisted suicide be granted. One of the criteria is that “the patient’s suffering is unbearable, with no prospect of improvement.” In their report, physicians 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.
The law requires the unbearable suffering to have a medical basis, but this can be either somatic or psychiatric. It permits euthanasia or assisted suicide for unbearable suffering caused by psychiatric conditions, dementia, various geriatric syndromes, chronic pain syndromes or genetic conditions. The number of euthanasias/assisted suicides “for reasons other than terminal illness is increasing and not insignificant,” the study noted.
In two-thirds of the cases studied (62%), the characteristics of autism or intellectual disability were the sole or major contributing cause of suffering, and these were assumed to be severe enough to approve assisted suicide/ euthanasia.
“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,” the study concluded.