Who should decide when we die?

Published by The i paper (28th September, 2020)

Yew Trees was called a hospital but sounds more like hell. It was supposed to be a sanctuary for women with learning disabilities but instead they were subjected to torture. Inspectors from the Care Quality Commission glimpsed life inside this grim place from CCTV footage after a tip-off from the owners. They saw “abusive, disrespectful, intimidating, aggressive and inappropriate” behaviour by staff that included kicking, slapping and dragging patients along the floor. People feared repercussions for speaking out because of a belief that managers did not take concerns seriously.Thankfully this 10-bed unit has been shut down. Eight staff were suspended, four sacked and details reported to Essex police.

But this is just the latest in a string of such scandals that expose a profoundly flawed system of so-called care for people with autism, learning disabilities and mental health problems. They reveal reliance on detention, sedation and violent restraint instead of respect for human beings in need of support. The watchdog had issued warnings on safety at Yew Trees. The owner, a firm called Cygnet, has been involved in other recent outrages including Whorlton Hall, closed last year after BBC revelations of grotesque cruelty. Yet it still bunged a £485,000 pay rise to its best-paid boss.

Every time these horror stories emerge there is talk of zero tolerance. Firms make hollow promises to learn lessons. Politicians, if they bother to say anything, spew out platitudes but take no action. Charities that claim to speak for victims and families issue press releases while profiting from the system. With depressing regularity we see how little society cares about people with learning disabilities. Note how they are largely ignored in the scandal over coronavirus deaths in care homes and swept aside in the debate over social care. And when are they ever mentioned in feverish discussions on diversity?

Now flip to another issue bubbling away in the political undercurrents: the difficult subject of assisted dying. There is growing backing at Westminster to reform the euthanasia laws. Relatives of terminally ill people who sued for the right to die have demanded an inquiry. Polling shows strong public support. Former cabinet minister Andrew Mitchell, chair of a new all-party group of MPs, predicts this parliament will back “limited proposals” that would allow people within six months of the end of their life to request an earlier death. “We are not looking here for a massive change – we are looking for very, very tight reform,” he told Sky News.

Who could argue against this tweak of the law to remove pain for people in intense suffering? Certainly as an atheist and a liberal, I have no moral or political qualms about allowing people to chose the timing of their own death in such circumstances, despite having seen the tender brilliance of our palliative care system. Yet I resist loosening of the law since this would be the start of a slippery slope – and I fear our society is so dismissive of people with autism, disabilities and mental health problems that it cannot be trusted to offer them protection.

This has been proved again with the pandemic, which hit people with disabilities so hard, just as it is shown by the awful failure of ministers to stop people being locked up in hellholes.

The proponents of euthanasia always talk of tight reform. But the reality is rather different. “Every time a line was drawn it was also pushed back,” wrote Bert Keizer recently in the Dutch Medical Association Journal. He confesses that critics of his nation’s pioneering legalisation of euthanasia at start of this century were correct in warning that if you embark on this path “you irrevocably slide down to the random killing of defenceless sick people.”

The reason is simple: if suffering of terminally ill patients is legal cause to end a life, then why not the chronic suffering of those with dementia, depression or elderly people who no longer want to live? Dr Keizer is one of his country’s most prominent practitioners of euthanasia and Holland, along with its neighbour and fellow pioneer Belgium, proves his point.

Assisted dying in The Netherlands accounts for one in 25 deaths, while activists want legal permission for older people to obtain drugs on demand to die. A court case ruled euthanasia can be carried out on people with dementia even if they no longer express clear desire to die. Belgium has extended the idea to children and mental health patients. Last year, I met a 21-year-old woman who had set out on the legal road to death because of depression, showing how this is such very tough terrain. Belgian courts recently cleared three doctors in a landmark case over the death of a 38-year-old woman whose sisters argued that she was simply depressed after a failed relationship.

Tine Nys had been diagnosed with autism and the court fight revolved around whether her mental distress was “a serious and incurable disorder”. A group of experts who reviewed other incidents of people with autism or learning disabilities permitted to die have shown how isolation and inability to participate in society were ruled to meet the legal rules for ending life as “unbearable suffering.”

Such deaths highlight the failures of society to embrace and support people who are different – just like all the needless deaths in Britain of people held in dismal institutions during the pandemic and the terrible distress of citizens wrongly locked in psychiatric cells. I have talked also with an autistic woman in Belgium given leave to die because of mental agonies suffered as a teenager when detained for five years in such conditions. Now think again of those women abused in Essex. Then ask if you really think a country that consistently shows so little respect for the human rights of its most excluded citizens can be trusted to open the door to euthanasia?

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