Permitted assisted dying could increase protection for vulnerable people

The only person who can decide if a life is worth living is the one living it.

Tony Nicklinson may not have achieved his wish for doctors to be allowed to terminate his life at a place and time of his choosing, but he did manage to push the subject of assisted dying higher up the public agenda than it has been for a long time. And while he didn't convince the judges at the High Court, public opinion would seem to be firmly on his side. A YouGov poll conducted on behalf of the British Humanist Association last week found that a massive 81 per cent of adults (and two thirds of Roman Catholics) would support the right of "mentally competent individuals with incurable or terminal diseases" to access medical support to end their lives. Only 6 per cent were "strongly opposed". 

Support, too, has come from some leading politicians, such as the newly-appointed health minister Anna Soubry, who called the present state of the law "ridiculous and appalling".

Even so, opposition to any change remains entrenched and seemingly unmovable. Many MPs, almost all religious leaders and the official policy of the BMA are implacably opposed to legalising voluntary euthanasia, which the current BMA president has described as "a journey I just don't want us to even start out on".

For some, the question is forever out of bounds because life is sacred and can properly be terminated only by God. But there are more pragmatic arguments, too, that convince many that assisted dying is inherently dangerous. It's said that if the law were changed, vulnerable people would feel under pressure to end their lives in order to spare their families (or the taxpayer) the "burden" of their continued existence. That a system of planned death, timetabled according to personal or medical convenience, would cheapen life itself, would enshrine in law the idea that some lives were not worth living, and could potentially lead to a eugenic society in which the chronically sick, the elderly and the disabled were seen as disposable, by themselves or by others.

Such an argument may sound plausible. But can we be sure that we don't live in such a society already? Today we learned of the case of an unnamed man, aged 51, with Down's Syndrome and other disabilities, who spent some time in hospital last year. After "AWA" was discharged it emerged that without the knowledge of his family or carers doctors had placed a "do not resuscitate" (DNR) order on his file. The sole reason given for the notice - which would have resulted in his inevitable death had he suffered a cardiac arrest or encountered serious breathing difficulties - was apparently his disability. He does not seem to have been terminally ill.

We must, of course, be careful. It is only one case. The NHS trust concerned has declined to comment on the ongoing legal action and there may be significant facts that haven't been reported. AWA's solicitor, Merry Varney however, described it as "one of the most extreme cases we have seen" and declared that "to use Down's Syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant prejudice."

"Extreme" this case may be, but problems relating to DNR notices are far from unheard of. In another case currently before the courts, David Tracey is suing Addenbrooke's hospital in Cambridge over a DNR issued in respect of his wife who died there last year, and which was apparently discussed neither with her nor with him. He was also being represented by Merry Varney, who argued that "a competent patient must surely know when a decision to withhold potentially life sustaining treatment has been made."

A survey of 100 hospitals carried out last year by the Care Quality Commission found that at least five were in breach of medical guidance regarding consultation with families before issuing a DNR notice. On one ward, as many as a third of such orders were issued without consultation. The charity Action on Elder Abuse described such practices as "euthanasia by the backdoor".

Even if such cases are not the norm, they might be seen as evidence of a callously utilitarian approach to questions of life and death even without legalised euthanasia. AWA's case in particular suggests that vulnerable patients might be especially, well, vulnerable to such an attitude. Yet others tell a different story, of elderly and vulnerable or terminally-ill people, sometimes in pain, past all hope of full recovery and who in an earlier age would have died peacefully, being artificially kept alive by well-meaning doctors and by the death-cheating power of modern medicine.

In today's legal and medical regime, it would appear, some people are allowed to die who would rather live, while others are unwillingly kept alive when they want to die.

These two undesirable situations in fact represent different sides of the same coin: the paternalist attitude that sees medical professionals, rather than individual patients, as the people best placed to make the decision about whether he lives or dies. Tony Nicklinson, intellectually fully competent and certain in his own mind, is not allowed to determine the manner of his death. Nor is the more obviously vulnerable AWA. A system supposedly concerned with protecting the vulnerable only succeeds in reinforcing the godlike power of doctors.

For that reason, I suspect legislation that permitted assisted dying would actually increase the protection currently afforded to vulnerable people, and increase respect for the value of life. There's no contradiction between saying that all lives are valuable and that some have become intolerably burdensome. Rather, knowledge that they would not be condemned, in extremis, to a lingering agony at the hands of modern medicine would free some patients to live. And those who chose for reasons of faith or optimism to cling to every last painful moment of life could do so without causing others to feel guilt for their plight, which is the real "burden" which people with severe disabilities or who are in the last stages of terminal illness impose on their loved-ones.

The only person capable of deciding whether a life is or is not worth living, ultimately, is the one who is living it.

There are fears that hospitals could be practising "euthanasia by the backdoor". Photograph: Getty Images
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Meet Anne Marie Waters - the Ukip politician too extreme for Nigel Farage

In January 2016, Waters launched Pegida UK with former EDL frontman Steven Yaxley-Lennon (aka Tommy Robinson). 

There are few people in British political life who can be attacked from the left by Nigel Farage. Yet that is where Anne Marie Waters has found herself. And by the end of September she could well be the new leader of Ukip, a party almost synonymous with its beer-swilling, chain-smoking former leader.

Waters’s political journey is a curious one. She started out on the political left, but like Oswald Mosley before her, has since veered dramatically to the right. That, however, is where the similarities end. Waters is Irish, agnostic, a lesbian and a self-proclaimed feminist.

But it is her politics – rather than who she is – that have caused a stir among Ukip’s old guard. Former leader Paul Nuttall has said that her views make him “uncomfortable” while Farage has claimed Ukip is “finished” if, under her leadership, it becomes an anti-Islam party.

In her rhetoric, Waters echoes groups such as the English Defence League (EDL) and Britain First. She has called Islam “evil” and her leadership manifesto claims that the religion has turned Britain into a “fearful and censorious society”. Waters wants the banning of the burqa, the closure of all sharia councils and a temporary freeze on all immigration.

She started life in Dublin before moving to Germany in her teens to work as an au pair. Waters also lived in the Netherlands before returning to Britain to study journalism at Nottingham Trent University, graduating in 2003. She subsequently gained a second degree in law. It was then, she says, that she first learnt about Islam, which she claims treats women “like absolute dirt”. Now 39, Waters is a full-time campaigner who lives in Essex with her two dogs and her partner who is an accountant.

Waters’s first spell of serious activism was with the campaign group One Law for All, a secularist organisation fronted by the Iranian feminist and human rights activist Maryam Namazie. Waters resigned in November 2013 after four years with the organisation. According to Namazie, Waters left due to political disagreements over whether the group should collaborate with members of far-right groups.

In April 2014, Waters founded Sharia Watch UK and, in January 2016, she launched Pegida UK with former EDL frontman Steven Yaxley-Lennon (aka Tommy Robinson). The group was established as a British chapter of the German-based organisation and was set up to counter what it called the “Islamisation of our countries”. By the summer of 2016, it had petered out.

Waters twice stood unsuccessfully to become a Labour parliamentary candidate. Today, she says she could not back Labour due to its “betrayal of women” and “betrayal of the country” over Islam. After joining Ukip in 2014, she first ran for political office in the Lambeth council election, where she finished in ninth place. At the 2015 general election, Waters stood as the party’s candidate in Lewisham East, finishing third with 9.1 per cent of the vote. She was chosen to stand again in the 2016 London Assembly elections but was deselected after her role in Pegida UK became public. Waters was also prevented from standing in Lewisham East at the 2017 general election after Ukip’s then-leader Nuttall publicly intervened.

The current favourite of the 11 candidates standing to succeed Nuttall is deputy leader Peter Whittle, with Waters in second. Some had hoped the party’s top brass would ban her from standing but last week its national executive approved her campaign.

Due to an expected low turnout, the leadership contest is unpredictable. Last November, Nuttall was elected with just 9,622 votes. More than 1,000 new members reportedly joined Ukip in a two-week period earlier this year, prompting fears of far-right entryism.

Mike Hookem MEP has resigned as Ukip’s deputy whip over Waters’ candidacy, saying he would not “turn a blind eye” to extremism. By contrast, chief whip, MEP Stuart Agnew, is a supporter and has likened her to Joan of Arc. Waters is also working closely on her campaign with Jack Buckby, a former BNP activist and one of the few candidates to run against Labour in the by-election for Jo Cox’s former seat of Batley and Spen. Robinson is another backer.

Peculiarly for someone running to be the leader of a party, Waters does not appear to relish public attention. “I’m not a limelight person,” she recently told the Times. “I don’t like being phoned all the time.”

The journalist Jamie Bartlett, who was invited to the initial launch of Pegida UK in Luton in 2015, said of Waters: “She failed to remember the date of the demo. Her head lolled, her words were slurred, and she appeared to almost fall asleep while Tommy [Robinson] was speaking. After 10 minutes it all ground to an uneasy halt.”

In an age when authenticity is everything, it would be a mistake to underestimate yet another unconventional politician. But perhaps British Muslims shouldn’t panic about Anne Marie Waters just yet.

James Bloodworth is editor of Left Foot Forward

This article first appeared in the 17 August 2017 issue of the New Statesman, Trump goes nuclear