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We need to make sure people with learning disabilities are not granted euthanasia requests too easily
What would you do if someone told you their life was so full of suffering that they preferred to die? What if they asked their doctor or even you for help to die? In the UK, assisted dying is not currently a legal possibility, so you may think this question is not relevant to you as a practising nurse. You may think that, even if assisted dying were legalised, surely this would not affect people with a learning disability? But it affects everyone and it is relevant to us all.
Learning Disability Practice. 27, 1, 18-19. doi: 10.7748/ldp.27.1.18.s8
Published: 08 February 2024
There are ongoing debates in countries and governments around the world, including in the UK, with growing numbers of people supporting assisted dying legislation.
It is not my intention to argue for or against assisted dying but to consider the implications of assisted dying legislation for people with a learning disability.
The topic of assisted dying is not easy. Views differ widely and are often strongly held.
Nurses want to do their best for the people they support, to relieve any suffering and to allow people to have the best possible quality of life.
At the heart of the debate lies a tension between several important cornerstones of medical ethics:
» Respect for patient autonomy.
» Beneficence – acting with kindness.
» Non-maleficence – doing no harm.
Proponents of assisted dying argue that people should have autonomy over their own lives and deaths, and that death relieves suffering, while opponents say assisted dying is incompatible with duties of doing no harm.
Assisted dying is possible in the Netherlands, provided six due care criteria are met. One of those is that the patient’s suffering is unbearable, with no prospect of improvement. Another is that the request needs to be well-considered and voluntary.
There is no requirement for the patient’s prognosis to be limited. This means that young, physically healthy people can be granted a euthanasia request if doctors agree that their suffering, which may include mental suffering, is severe and cannot be relieved.
After the death, the doctor writes a report for a review committee, which scrutinises whether the legal criteria had been met. What did the suffering consist of? What made it unbearable? Was there really no prospect of improvement? Another point is whether the request was well-considered, which touches on questions of mental capacity.
‘He could not adapt to the constantly changing people in his environment and felt powerless in his inability to function in society’
I looked at case reports of people with a learning disability and/or autism in the Netherlands who died through euthanasia (where a doctor ends a patient’s life at the patient’s request) or physician-assisted suicide (where a doctor helps a patient to end their own life).
‘If assisted dying were a realistic option, it may become too easy for people to request it and for their death to be a way out of painfully difficult circumstances’
There were detailed reports of 39 people with a learning disability and/or autism who requested and received an assisted death between 2012 and 2021.
Half of the people were younger than 50 when they died. About two thirds asked for an assisted death solely, or mostly, due to characteristics associated with their learning disability and/or autism, such as anxiety, loneliness and not feeling they had a place in society.
People felt unable to cope with the world, could not cope with changes around them and struggled to make friendships and connections.
In some cases doctors said that the person’s learning disability and/or autism made it hard to cope with non-life-threatening physical illness or decline. One woman had undergone surgery for curable stomach cancer, but could not adapt to the new eating pattern it required and preferred to die.
In one third of the cases, doctors noted explicitly that the person’s learning disabilities and/or autism were not treatable and that this was a key consideration in their assessment. There was no prospect of improvement, therefore an assisted death was seen to be the only remaining option for the patient.
I found these reports distressing to read. There was no doubt in my mind that these people had suffered profoundly. However, it seemed to me that much of their suffering stemmed from an inability of society to provide people who are different with a place of belonging and welcome, as well as a lack of adequate opportunities and support.
What about an autistic man with mild learning disabilities, for example, who was suffering due to an increased dependence on carers after his parents died?
The report said that he could not adapt to the constantly changing people in his environment, had lost the overview of his daily life and felt powerless in his inability to function in today’s society.
A psychiatrist concluded that his suffering stemmed from his autism, which could not be treated. His doctor agreed that his suffering was unbearable. He was in his fifties when he died. The death of his parents should have been anticipated and planned for, with a process of building up stable support and help for this man to transition to a safe place in the world outside the family home.
As learning disability nurses we know that people experience severe inequalities in opportunities and in health and social care provision. We know that society is not a level playing field where everyone has a full range of life choices and can make autonomous choices about them. We also know the risk of unconscious bias from healthcare professionals when it comes to assessing the quality of life of people with disabilities.
To what extent did all this play a role in people’s lack of ‘prospect of improvement’? If assisted dying were a realistic option, it may become too easy for people to request it and for it to be granted as a way out of painfully difficult circumstances, rather than addressing underlying issues of inequality and a lack of adequate support for people with complex needs.
What people with a learning disability need is a society where they feel they belong, with people around them who not just accept and accommodate but welcome their unique ways of being.
Tuffrey-Wijne I, Curfs L, Hollins S et al (2023) Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: an investigation of 39 Dutch case reports (2012-2021). BJPsych Open. 9, 3, e87. doi:10.1192/bjo.2023.69
Euthanasia requests of people with intellectual disability or autism in the Netherlands youtu.be/p2ntVD4mP2w?si=SCMPreyPQtI_TTW9