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.