Newswise — A study conducted at Kingston University in London discovered that numerous individuals with learning disabilities and autism residing in the Netherlands opted for lawful euthanasia and assisted suicide. They made this choice because they felt incapable of handling the world, adapting to alterations, or establishing social connections.
Between 2012 and 2021, approximately 60,000 instances of euthanasia and physician-assisted suicide were documented in the Netherlands. Over 900 reports of these cases were logged in an accessible online database. The legality of this end-of-life option hinges on fulfilling six specific criteria, including the condition that the patient must be enduring unbearable suffering without any hope of improvement.
Irene Tuffrey-Wijne, the study lead and Professor of Intellectual Disability and Palliative Care at Kingston University, along with her colleagues, analyzed the database to gain insights into the circumstances in which individuals with learning disabilities or autism spectrum disorders were given permission for euthanasia or assisted suicide. Their objective was to identify the primary sources of suffering that prompted such requests.
The researchers discovered a total of 39 instances in which individuals with either learning disabilities or autism spectrum disorder, and in some cases, both, were involved. Out of these cases, 19 were males and 20 were females, with 18 out of the 39 individuals being under the age of 50.
The study, which was published in the BJPsych Open Journal, revealed that a significant majority, accounting for approximately two-thirds of the cases, opted for euthanasia or assisted suicide primarily due to factors linked to their condition. These factors included feelings of anxiety, loneliness, and a sense of not belonging in society. In eight out of the 39 cases, the sources of suffering were solely attributed to the individuals' learning disabilities or autism, as they struggled to cope with their surroundings, adapt to changes, and establish meaningful relationships.
According to the research team, the findings underscored the importance of initiating a global discourse on the philosophical and ethical aspects of euthanasia and assisted suicide. They emphasized the need to address criteria for such end-of-life choices and determine appropriate approaches when faced with requests from vulnerable patient groups. The study's results serve as a call for a broader discussion aimed at developing guidelines and frameworks that account for the unique circumstances and challenges faced by these individuals.
Within the study, an additional eight individuals expressed that their autism or learning disability made it challenging for them to cope with non-life-threatening physical illnesses or decline. Similarly, the same number of participants cited their condition, coupled with psychiatric issues such as anxiety and loneliness, as the primary reason behind their desire for assisted death. Among the 39 cases examined, the causes of suffering that led these individuals to seek assistance in ending their lives included feelings of loneliness (reported in 77% of cases), a sense of dependence on others (62%), a lack of resilience or coping strategies (56%), and difficulties with flexibility and adapting to change (44%). These factors collectively contributed to their decision to pursue euthanasia or assisted suicide.
Ultimately, in approximately one-third of instances, physicians explicitly observed that the person's learning disabilities or autism were untreatable. They regarded this as a crucial factor in evaluating the absence of potential improvement and consequently determining that an assisted death remained the sole available choice for the patient.
Professor Tuffrey-Wijne, commenting on the results, emphasized the necessity of a broader discussion regarding the ethical handling of requests from vulnerable populations. The research also underscored the significance of dedicating resources to tailored support services globally. "These individuals required a society that fostered a sense of belonging, with individuals who not only embrace and adapt, but embrace their distinctive ways of existence," she stated.
"Undoubtedly, certain individuals experience a profound sense of helplessness and suffer deeply, and addressing their support needs is a complex task. However, it is our hope that a cultural transformation can take place, accompanied by substantial investments in services that are currently severely lacking resources."
Furthermore, Professor Tuffrey-Wijne provided oral testimony to a government health and social care select committee regarding an inquiry into assisted dying and suicide earlier this month.
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