Here are two stories that have kept me awake at night.
A woman with mild intellectual disabilities couldn’t live with her symptoms of tinnitus.
A man with autism couldn’t live with his symptoms of – well, autism.
They lived in the Netherlands. They asked for euthanasia. Their request was granted. They died.
The woman with tinnitus was in her sixties and had (so her doctors said) “limited coping abilities”. She had been plagued by all sorts of different and terrible noises for over a decade. She had gone through many treatments – including a number of wrong ones – but she was not keen on them and often wanted to abandon them, and the people who treated her had not encouraged her to try and persevere.
She talked about euthanasia with her GP, but he didn’t want to meet her request, so she registered with the End-of-Life Clinic (set up in 2012 to help people whose own doctors, for whatever reason, were unable to go down the euthanasia road with them). A doctor and nurse from the clinic went to see her at home. They could see immediately that the woman was indeed suffering terribly from the slightest noise. Even water being boiled in a kettle was too much.
The doctor tried to explain to the woman that there are many people with tinnitus, and that most of them can manage to cope with it. But the patient, “with her primitive thinking abilities” (not my words – I’m quoting the report of the Euthanasia Review Committee), was focused solely on eliminating the tinnitus completely. Once she realised “I will never get rid of it”, her suffering became unbearable and hopeless to her, and she was then only focused on euthanasia.
According to the rules, the doctor asked an independent consultant for his opinion, who wasn’t sure whether the situation was without hope. A second independent consultant was found, who visited two weeks later. The second consultant agreed with the doctor that they had run out of options. The woman would not cooperate with any further treatments. The doctors worried that she might kill herself.
A week after the second consultant’s visit, the woman was given a lethal injection.
The man with the autistic spectrum disorder was in his thirties. He did not have intellectual disabilities but Asperger’s Syndrome. His is a sad story. He had endured neglect and abuse in childhood and suffered severe mental health problem.
What was the nature of the unbearable suffering that led the doctors to agree to his euthanasia request? According to the Dutch rules, the suffering must be caused by a medical condition. This has been interpreted widely, and has included psychiatric conditions (from which this man clearly suffered). But does it include life-long disability? Does it include autism?
I would like to think that the answer is an emphatic NO, but this is how the man’s ‘unbearable suffering’ is summarised in the report:
“The patient suffered from the fact that he had a great need for closeness with others whilst he couldn’t maintain long-lasting social contacts. This was because he misjudged interactions and was inclined to behaviour that crossed boundaries. He could react to things in a spontaneous and intense, sometimes extreme, manner. This often led to problems. However, the patient could not learn from these experiences. He was frustrated by his ‘forbidden’ feelings, such as longing for sexual intimacy. He suffered from his continuous yearning for meaningful relationships and his repeated frustrations in this area, because of his inability to deal adequately with closeness and social contacts.”
The psychiatrist thought that the patient’s suffering was unbearable and with no prospect of improvement, caused by an autism spectrum disorder, and concluded that his euthanasia wish should be processed.
Rather puzzlingly, the report added that cure for his condition was “no longer possible”, and that “treatment was purely palliative in nature”.
(I am trying, and failing, to see what palliative care for an autism spectrum disorder looks like.)
Euthanasia in the Netherlands
The Dutch are admirably straightforward about euthanasia. No euphemisms for them, no nice words like a Dignity in Dying Law. Their law does what it says on the tin: Termination of Life on Request and Assisted Suicide Act.
They are also admirably transparent about the practice of euthanasia. These two case reports were taken from the website of the Euthanasia Review Committee to which doctors must report every single case of euthanasia or assisted suicide (after the event). Each case report is reviewed; an annual report is written; and a selection of cases is put onto that website. In Dutch only, I’m afraid, so most of you won’t be able to read them – but I could.
I discovered a search box on their page of case reports. There were 416 of them, starting in 2012. I typed in variations on the words for “intellectual disabilities” and “autism”. Nine cases popped up. Nine people who had intellectual disabilities, or autism, or both; who had asked for euthanasia; and whose request had been granted. The reports describe why their suffering was unbearable, why it was “without prospect of improvement”, when and how they had asked for euthanasia, and how their request had been assessed by doctors. Was it a voluntary request? Was it well-considered? All these are criteria that must be met.
I translated these nine case reports into English and gathered three colleagues from the Netherlands and the UK. We read and discussed the case reports. We looked carefully at how Dutch doctors applied the criteria for euthanasia to people with intellectual disabilities and people with autism spectrum disorders.
Then we wrote a paper about what we found, which has just been published in the journal BMC Medical Ethics.
Having spent the past two years scrutinising the Dutch euthanasia system, and translating the reports of the Euthanasia Review Committees for the benefit of my UK colleagues, there is a lot I can say about euthanasia. Indeed I have – no-one in my circle of family, friends and colleagues has escaped the euthanasia debate. At my book group, I couldn’t help myself saying the E-word; the novel we were discussing was left behind as emotions ran high.
It’s a riskier conversation topic even than Brexit. At least with Brexit, most of the people I know are on the same side of the fence. Not so with euthanasia. People tend to have a strong opinion, which they hold on to with passion. Before you know it, you’re caught up in a campaign rather than a clear-headed discussion about the issues. I can understand both sides of the campaign. Branding pro-euthanasia campaigners as evil murderers and anti-euthanasia campaigners as evil torturers doesn’t help anyone. No-one involved in these complex situation is in the business of either torturing or murdering.
There is absolutely no doubt in my mind that the woman with tinnitus and the man with autism suffered terribly. Unbearably, even. There is also no doubt in my mind that the doctors who gave them euthanasia did so out of true compassion and a desire to do the best for their patients. We all want what is best. Individual stories of people who are seeking help to die are almost always unbearably sad and difficult. Who’d be in their shoes?
But I cannot help feeling deeply uneasy about these cases.
Because in order to agree to someone’s euthanasia request, you have to agree that the person’s suffering is terrible enough, and that it can never improve. You have to agree that for that person, being dead is better than being alive.
Of course there is only one person who can truly judge this, and that is the person him- or herself. But if someone says she wants to die, she may have a right to ask for help, but do we have a duty to give it? As a society, we agree that self-determination and autonomy is not limitless, and that there must be adequate protection for those who are vulnerable. That’s why we do not stock euthanasia drugs on the supermarket shelves. That’s why there are laws, and attempts within those laws to protect vulnerable people.
Having scrutinised the nine Dutch cases, I am not convinced that vulnerable people are adequately protected.
I hope you will read our paper, so you can draw your own conclusions and join the debate.
Our paper on euthanasia, intellectual disability and autism spectrum disorder
Woman with tinnitus (2015)
Man with autism (2014)
English version of the Euthanasia Review Committee website
Looking forward to reading the full paper. Even more interesting taken in conjunction with another paper also posted on FB today about the politics of prognosis. I will work out how to send it to uou without Social media. Only you could have written this cross language, cross cultural paper. I can see why it kept you awake at night though. It was great to spend two days with you and to meet Clare. I think she is terrific.
Had to read a few times as honestly thought it was a joke … in regards to definition of euthanasia my understanding it’s to end a persons suffering and have learnt each country has different euthanasia laws which I presume is were issues arise … i
Does this author deny cases where autism is severe and debilitating? There exists people such as this who have spend decades in and out of therapy and are crippled by this condition. These people should not have to spend the rest of their lives like this, potentially institutionalized for life or spending every year with months of bouncing in and out of one.
For this reason I support euthanasia. If someone is mentally competent to consent to assisted-dying, they are not “vulnerable.” To paint all these people as “vulnerable” is not only wrong, but frankly insulting and contributes to the stigma.
Here is a good study which addresses claims such as this: https://link.springer.com/article/10.1007/s10728-017-0344-8
“Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.” – CS Lewis
thank you for service
Complicated, isn’t it? The paper on which this blog is based is important if you are interested in disability rights, euthanasia or both, because it contains data as well as ethical debate.
If euthanasia forms a valued part of a nations health service, and is used to relieve intolerable and irreversible suffering, it is surely wrong to exclude disabled citizens who have the capacity to choose, restricting their autonomy. The problem is that disabled people still face substantial discrimination. They do not always enjoy the same access as other citizens to curative and palliative treatment, which may limit the choices available to them and could push them towards euthanasia. Autonomy can be limited in more than one way, not all of them are obvious. Even in countries where euthanasia is not an option, people with intellectual disabilities, people with autism, and people with severe mental illness are more likely than other citizens to die prematurely. This reflects inequitable access to health care, poverty, exclusion, and biological differences. There are those who believe that many, or even most, people with certain impairments lead lives of intolerable suffering. In the Netherlands it is clear that the legislation only allows voluntary euthanasia, but the context in which disabled people live may limit their freedom of choice. The paper raises questions about how voluntary some of the requests for euthanasia were, given the wider social context.
It also raises the issue of how rigorously capacity is assessed. For at least one person in the study, the full criteria for decision-making capacity were not met, but the request for euthanasia was granted. Was that a reasonable adjustment to allow a disabled person access to the service that they were requesting; or depriving that person of the protection the law is supposed to give to vulnerable people? Capacity Legislation, rightly in my view, demands that the weightier the decision, the more certain the assessor must be that the person has capacity. The decision to end life is arguably the weightiest of all, so surely the assessment of capacity must be at its most rigorous.
The authors are frank about the limitations of the study. The methods they used, the structured examination of the meticulous records kept in the Netherlands on completed euthanasia, do not allow them or us to consider the disabled people who may have applied for euthanasia and been turned down. As the authors point out, the records do not always contain the details that would enable them to know what the decision makers may have taken into account. Disabled people are concerned both about their autonomy, of paternalistic decisions made on their behalf in good faith; and of being harmed, even killed, by disabling attitudes.
Finally we are are all, especially in Northern Europe, still haunted by the shadow of the Third Reich when disabled children and adults were judged to have “Lives not worthy of life” and were the first group to be sent to the death camps for an entirely different kind of euthanasia that was neither voluntary or escapable. I stress again that euthanasia legislation in the Netherlands is for the Termination of Life on Request and Assisted Suicide; but that relatively recent history informs all debates on this subject, even when it is not made explicit.
This paper is an important and courageous attempt to bring some factual data into what often seems a question of abstract morality. It opens up a conversation that is as important as it is uncomfortable.
I correlate with that Autism case so much apart from being younger, I really wish the UK allowed euthanasia. I have no idea how I will cope of my mother dies before me.
There is no “palliative care for an autism spectrum disorder”. It is a life long condition hence there is no plan to the end. Interventions made at other points would probably help. But in reality such interventions doesn’t exist.
I just wanna die and don’t have the confidence for suicide 🙁 It’s been a logical cost-benefit analysis viewpoint since I was around 11, and nothing has changed since (I am now 20).
Dear Benjamin. I’m 49 and diagnosed with autism at the age of 47. All my life I have known that I was different, despite not knowing why. So I had no problem to accept my diagnosis. In fact, I selfdiagnosed myself when I was 30. There are plenty of autist in my family going back at least fourt generations above me. Some of them extremely disable. But they have all have a pretty full life considering the circumstances. I learnt to survive being different and, more important, I learnt from my experiences how to deal with people. As I have no intuitive knowledge of non-verbal language and relationships, I can only learn from experience, reading, etc. As an autist, I have failed a lot of times in my life: got fired from work a lot of times because of my caracther, broken relationships (had very very few), broken friendships (also a few), etc. and I have suffered from that, but that is just part of living. Sometimes you win and sometimes you lose. As a middle age man now I work and I make my living pretty decently. My serotonine levels are geneticaly low, and I take a daily small amounts of 5HTP and L-Thyrosine to keep them at average level and avoid depresion. I also try to keep a healthy lifestile to avoid depression. By being alert about it, I have managed to avoid depresion for many years. All things considered, am I unhappy? I have been lucky to have caring parents (also well off), good doctors, a caracther that keeps me learning and fighting and a few friends thathave helped. I have learnt to be flexible, avoid conflict and control my caracther and wrath as much as I can. I no longer try to impose my views nor I distrust people. I would not want to end my days like Tine Nys. No. I am aware of my limits, I accept then and learnt to live with them. I am convince that it is the lack care that make autistic people suffer and that the solution is providing such care, not euthanasia. In fact, euthanasia will only relieve the pressure of carers. Read and learn. Bear in mind that many autistic people have been important in History (Einstein, Darwin, Bill Gates, Daryl Hanna, Stanley Kubrick or recently Greta Thumberg). You can have a full life being autistic if you selfpbserve yourself, learn and read a lot about autism. And you can be happy being autistic if you find things that you enjoy doing and motivate yourself. In my case, as I have no family and very few froiends, my professional success is now one of the things that keep on motivating me and making me happy. Good luck!
Sorry our desire for release from ‘unbearable suffering’ makes you ‘uneasy’
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