A woman with mild intellectual disabilities couldn\u2019t live with her symptoms of tinnitus.
\nA man with autism couldn\u2019t live with his symptoms of \u2013 well, autism.
\nThey lived in the Netherlands. They asked for euthanasia. Their request was granted. They died.<\/p>\n
The woman with tinnitus was in her sixties and had (so her doctors said) \u201climited coping abilities\u201d. She had been plagued by all sorts of different and terrible noises for over a decade. She had gone through many treatments \u2013 including a number of wrong ones \u2013 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.<\/p>\n
She talked about euthanasia with her GP, but he didn\u2019t 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.<\/p>\n
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, \u201cwith her primitive thinking abilities\u201d (not my words \u2013 I\u2019m quoting the report of the Euthanasia Review Committee), was focused solely on eliminating the tinnitus completely. Once she realised \u201cI will never get rid of it\u201d, her suffering became unbearable and hopeless to her, and she was then only focused on euthanasia.<\/p>\n
According to the rules, the doctor asked an independent consultant for his opinion, who wasn\u2019t 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.<\/p>\n
A week after the second consultant\u2019s visit, the woman was given a lethal injection.<\/p>\n
The man with the autistic spectrum disorder was in his thirties. He did not have intellectual disabilities but Asperger\u2019s Syndrome. His is a sad story. He had endured neglect and abuse in childhood and suffered severe mental health problem.<\/p>\n
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?<\/p>\n
I would like to think that the answer is an emphatic NO<\/strong>, but this is how the man\u2019s \u2018unbearable suffering\u2019 is summarised in the report:<\/p>\n The psychiatrist thought that the patient\u2019s suffering was unbearable and with no prospect of improvement, caused by an autism spectrum disorder, and concluded that his euthanasia wish should be processed.<\/p>\n Rather puzzlingly, the report added that cure for his condition was \u201cno longer possible\u201d, and that \u201ctreatment was purely palliative in nature\u201d.<\/p>\n (I am trying, and failing, to see what palliative care for an autism spectrum disorder looks like.)<\/p>\n The Dutch are admirably straightforward about euthanasia. No euphemisms for them, no nice words like a Dignity in Dying Law<\/em><\/strong>. Their law does what it says on the tin: Termination of Life on Request and Assisted Suicide Act<\/strong>.<\/em><\/p>\n They are also admirably transparent about the practice of euthanasia. These two case reports were taken from the website of the Euthanasia Review Committee <\/a>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\u2019m afraid, so most of you won\u2019t be able to read them \u2013 but I could.<\/p>\n 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 \u201cintellectual disabilities\u201d and \u201cautism\u201d. 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 \u201cwithout prospect of improvement\u201d, 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.<\/p>\n 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.<\/p>\n 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 \u2013 no-one in my circle of family, friends and colleagues has escaped the euthanasia debate. At my book group, I\u00a0couldn’t help myself saying the E-word;\u00a0the novel we were discussing was left behind as emotions ran high.<\/p>\n It\u2019s 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.\u00a0People tend to\u00a0have a strong\u00a0opinion, 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.<\/p>\n 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\u2019d be in their shoes?<\/p>\n Because in order to agree to someone\u2019s euthanasia request, you have to agree that the person\u2019s 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.<\/p>\n 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\u2019s why we do not stock euthanasia drugs on the supermarket shelves. That\u2019s why there are laws, and attempts within those laws to protect vulnerable people.<\/p>\n I hope you will read our paper, so you can draw your own conclusions and join the debate.<\/p>\n Our paper on euthanasia, intellectual disability and autism spectrum disorder Here are two stories that have kept me awake at night. A woman with mild intellectual disabilities couldn\u2019t live with her symptoms of tinnitus. A man with autism couldn\u2019t live with his symptoms of \u2013 well, autism. They lived in the Netherlands. They asked for euthanasia. Their request was granted. They died. Tinnitus The woman […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-282","post","type-post","status-publish","format-standard","hentry","category-uncategorised"],"_links":{"self":[{"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=\/wp\/v2\/posts\/282","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=282"}],"version-history":[{"count":5,"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=\/wp\/v2\/posts\/282\/revisions"}],"predecessor-version":[{"id":292,"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=\/wp\/v2\/posts\/282\/revisions\/292"}],"wp:attachment":[{"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=282"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=282"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tuffrey-wijne.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=282"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\u201cThe patient suffered from the fact that he had a great need for closeness with others whilst he couldn\u2019t 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 \u2018forbidden\u2019 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.\u201d<\/em><\/h4>\n
Euthanasia in the Netherlands<\/h3>\n
Then we wrote a paper <\/a>about what we found, which has just been published in the journal BMC Medical Ethics. <\/em><\/h4>\n
But I cannot help feeling deeply uneasy about these cases.<\/h4>\n
Having scrutinised the nine Dutch cases, I am not convinced that vulnerable people are adequately protected.<\/h4>\n
<\/h4>\n
Links<\/h4>\n
\n<\/em><\/a>Woman with tinnitus (2015)<\/a>
\nMan with autism\u00a0(2014)<\/a>
\n<\/em>English version of the Euthanasia Review Committee website<\/a><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"