It is largely accepted in the modern democratic world that people have the right to do as they determine with their bodies and their lives. We permit competent adults to make many important choices such as sleeping with whom they want, altering their appearance with cosmetic surgery, having an abortion or changing gender. Many things that were once taboo have rapidly become normalised.
So should we let individuals make the ultimate decision: to control the timing and nature of their own death when they have debilitating and terminal health conditions?
This question cuts to the heart of our humanity and rights. Several places in North America and Europe already permit death-on-demand in different forms. Now, as pressure grows for reform in the UK, often driven by powerful testimonies from terminally-ill people, the influential Royal College of Physicians is polling its 35,000 members on whether the law should be changed. The body has said it will ditch its opposition to any change unless six in 10 doctors are opposed.
For Britain to follow Belgium, Canada and the Netherlands down the path towards euthanasia, would be significant. Our nation is seen as a pioneer in the creation of the hospice movement and development of palliative care thanks to the late and very great Dame Cicely Saunders. But surveys indicate there is strong public support for change. I am, as an atheist and unashamed liberal, philosophically sympathetic to those seeking legalisation of assisted dying.
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Yet, ultimately, I am concerned about any proposed change. Putting aside my admiration for our palliative care system, which I have seen at first hand within my own family, this is for two key reasons. The first was driven home to me two months ago when I spent a few days investigating the impact of this issue in Belgium.
This was the world’s second nation to legalise euthanasia and almost 15,000 people have officially ended their lives this way since 2002. It was impressive to see how assisted dying had become entwined within health and palliative systems. Beyond those with strong religious beliefs, I found few concerns over people with late-stage cancer or the cruellest physical conditions opting to terminate their lives. Some doctors remained uneasy about killing patients themselves with fatal doses of drugs, yet were content to assist people who had made rational choices to end their own lives. Other medics were more sanguine, such as the activist doctor I met who had personally despatched 140 people including two of his own friends.
Yet there is no doubt that in Belgium there is a slippery slope: as euthanasia becomes normalised in medicine and society, the number of cases surges and the scope widens. Look also at the Netherlands, where assisted dying now accounts for one in 25 deaths and right-to-die activists are pushing for ‘tired of life’ legislation that would permit any elderly person over a certain age to obtain drugs to kill themselves on demand.
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“The process of bringing in euthanasia legislation began with a desire to deal with the most heartbreaking cases – really terrible forms of death,” the ethicist Theo Boer, a member of a Dutch regional euthanasia board for nine years, was quoted as saying in The Guardian last month. “But there have been important changes in the way the law is applied. We have put in motion something that we have now discovered has more consequences than we ever imagined.”
Belgium, for example, now permits euthanasia for children. It has allowed at least three minors – two of whom were children under 12 – to receive lethal injections since the law was changed five years ago. It also allowed a pair of deaf adult twins who feared turning blind to kill themselves. And it is available for those with ‘unbearable’ psychiatric pain. If we accept people have the right to death as relief from intense suffering, then this makes ethical sense, since there should not then be distinction between physical and mental agony. Yet such distress is harder to detect and more open to subjective interpretation.
It can also be highly complex. One woman scientist told me she felt more comfortable and in control of her life once she had been permitted to choose her own time of death, and experts pointed out that euthanasia is kinder on a patient and their family than the grisly alternative of suicide. Yet it is hard not to be unsettled when you hear, as I did, the tale of a depressed woman aged only 21 going through a legal process that will end in death. I also heard concerns from psychiatrists over elderly people facing pressure to kill themselves; in at least one case, simply to enrich their family.
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It is, therefore, no coincidence that both Belgium and the Netherlands face landmark court cases over controversial deaths following this surge in numbers. One involves the diagnosis with autism of a 38-year-old woman, the other concerns the disturbing incident of an older woman with dementia who had to be held down by her family as she struggled during her final injection.
Which leads me to my second cause for concern: how do we protect vulnerable people once the state starts sliding inevitably down that slippery slope towards the place where euthanasia becomes routine?
It seemed incredible that an autism diagnosis could trigger a euthanasia decision. I discovered a quartet of British and Dutch professors who also had serious concerns, having reviewed cases of people with autism spectrum disorders or learning disabilities who were granted euthanasia. As these experts pointed out, feelings of isolation and an inability to participate in society had come to be deemed as ‘unbearable suffering’, the legal requirement for ending a life. “Suffering was described in terms of characteristics of living with an autism spectrum disorder,” according to one of their papers, “rather than an acquired medical condition.”
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This is a terrifying glimpse of how society fails such people – something that chills me to the core as father of a young woman with profound learning disabilities. Surely the real cause of their suffering was the lack of support that might enable them to live contentedly with their conditions, compounded by the woeful lack of acceptance of people who view the world differently which still stains so many societies.
Back in Britain, I have been investigating how hundreds of people with autism and learning disabilities are locked up in horrific and unsuitable psychiatric units. This barbarism includes being slammed in solitary confinement, fed like animals through hatches and on the floor, forcibly injected with powerful drug cocktails, and even children violently restrained by teams of adults. Remember that Belgian scientist I spoke to who was in such mental pain she was granted euthanasia? Her troubles, she told me, went back to when she was held in similar conditions as a teenage girl – yet still we incarcerate scores of teenagers today in the same way, wrecking their lives.
Private operators have moved in like vultures in Britain to exploit this trade in incarcerating human beings, while politicians make empty pledges to end such disgusting abuse. Health secretary Matt Hancock is only the latest to express horror and then kick the issue into the long grass. Sadly, this symbolises again how citizens with autism and learning disabilities are seen as lesser people – along with all the continuing abuse, the hate crimes, the bullying in residential homes, the school exclusions, the dearth of jobs and far too many early deaths in the health system.
So, yes, I remain sympathetic to the concept of assisted dying for those with chronic conditions. But as I have seen in Belgium, once the door is opened, it does not take long for a nation to normalise death on demand. And while I’m not anxious on moral grounds, I do fear for the safety of the most excluded people in society. Until our country shows it respects the human rights of all its inhabitants, then we simply cannot be trusted to handle such a potentially lethal reform.