Posted Wednesday 5 July 2023
A Kingston University study found several people with learning disabilities and autism in the Netherlands chose to die legally through euthanasia and assisted suicide due to feeling unable to cope with the world, changes around them or because they struggled to form friendships.
There were almost 60,000 cases of euthanasia and physician-assisted suicide between 2012 and 2021 in the Netherlands. More than 900 case reports were recorded on an online, searchable database. This form of dying is legal in the country provided six due care criteria are met, one of which is that the patient's suffering is unbearable, with no prospect of improvement.
Study lead and Professor of Intellectual Disability and Palliative Care at Kingston University Irene Tuffrey-Wijne and colleagues examined the database to understand the situations where people with learning disabilities or autism spectrum disorders had been granted requests for euthanasia or assisted suicide, and the main causes of suffering that led to the request.
They found 39 cases that involved people with either learning disabilities or autism spectrum disorder, or in some cases, both. Of these, 19 were male and 20 were female, with 18 of the 39 under the age of 50.
Published in the BJPsych Open Journal, the study found a majority, around two-thirds, chose that path solely, or mostly, due to characteristics associated with their condition, such as anxiety, loneliness and not feeling they had a place in society. In eight of the 39 cases the reasons for the individual's suffering were exclusively related to the learning disability or autism, with people feeling unable to cope with the world, changes around them and a struggle to make friendships and connections.
The research team said the findings highlighted a need for an international philosophical and ethical debate around criteria for euthanasia and assisted suicide and how to deal with such requests from vulnerable patient groups.
Within the study, a further eight said their autism or learning disability made it hard to cope with non-life-threatening physical illness or decline, while the same number stated their condition combined with psychiatric problems like anxiety and loneliness was their reason for wanting to die. Of the 39 cases, causes of suffering that led people to asked for help to die included loneliness (77 per cent of cases), a dependence on others (62 per cent), a lack of resilience or coping strategies (56 per cent) and a lack of flexibility and difficulty adapting to change (44 per cent).
Finally, in a third of the cases, doctors noted explicitly that the individual's learning disabilities or autism were not treatable and that this was a key consideration in their assessment that there was no prospect of improvement and therefore an assisted death was the only remaining option for the patient.
Commenting on the findings, Professor Tuffrey-Wijne said that alongside the need for a wider debate on the ethics of dealing with requests from vulnerable groups, the research also highlighted the importance of investing in highly individualised support services around the world. "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."
In addition to this work, Professor Tuffrey-Wijne gave oral evidence at a government health and social care select committee about an assisted dying and suicide inquiry earlier this month.