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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"We repealed, then forgot": the long shadow of Section 28 homophobia

Why are deeply conservative views about the "promotion" of homosexuality still being reiterated to Scottish school pupils? 

Grim stories of LGBTI children being bullied in school are all too common. But one which emerged over the weekend garnered particular attention - because of the echoes of the infamous Section 28, nearly two decades after it was scrapped.

A 16-year-old pupil of a West Lothian school, who does not wish to be named, told Pink News that staff asked him to remove his small rainbow pride badge because, though they had "no problem" with his sexuality, it was not appropriate to "promote it" in school. It's a blast from the past - the rules against "promoting" homosexuality were repealed in 2000 in Scotland, but the long legacy of Section 28 seems hard to shake off. 

The local authority responsible said in a statement that non-school related badges are not permitted on uniforms, and says it is "committed to equal rights for LGBT people". 

The small badge depicted a rainbow-striped heart, which the pupil said he had brought back from the Edinburgh Pride march the previous weekend. He reportedly "no longer feels comfortable going to school", and said homophobia from staff members felt "much more scar[y] than when I encountered the same from other pupils". 

At a time when four Scottish party leaders are gay, and the new Westminster parliament included a record number of LGBTQ MPs, the political world is making progress in promoting equality. But education, it seems, has not kept up. According to research from LGBT rights campaigners Stonewall, 40 per cent of LGBT pupils across the UK reported being taught nothing about LGBT issues at school. Among trans students, 44 per cent said school staff didn’t know what "trans" even means.

The need for teacher training and curriculum reform is at the top of campaigners' agendas. "We're disappointed but not surprised by this example," says Jordan Daly, the co-founder of Time for Inclusive Education [TIE]. His grassroots campaign focuses on making politicians and wider society aware of the reality LGBTI school students in Scotland face. "We're in schools on a monthly basis, so we know this is by no means an isolated incident." 

Studies have repeatedly shown a startling level of self-harm and mental illness reported by LGBTI school students. Trans students are particularly at risk. In 2015, Daly and colleagues began a tour of schools. Shocking stories included one in which a teacher singled out a trans pupils for ridicule in front of the class. More commonly, though, staff told them the same story: we just don't know what we're allowed to say about gay relationships. 

This is the point, according to Daly - retraining, or rather the lack of it. For some of those teachers trained during the 1980s and 1990s, when Section 28 prevented local authorities from "promoting homosexuality", confusion still reigns about what they can and cannot teach - or even mention in front of their pupils. 

The infamous clause was specific in its homophobia: the "acceptability of homosexuality as a pretended family relationship" could not be mentioned in schools. But it's been 17 years since the clause was repealed in Scotland - indeed, it was one of the very first acts of the new Scottish Parliament (the rest of the UK followed suit three years later). Why are we still hearing this archaic language? 

"We repealed, we clapped and cheered, and then we just forgot," Daly says. After the bitter campaign in Scotland, in which an alliance of churches led by millionaire businessman Brian Souter poured money into "Keeping the Clause", the government was pleased with its victory, which seemed to establish Holyrood as a progressive political space early on in the life of the parliament. But without updating the curriculum or retraining teaching staff, Daly argues, it left a "massive vacuum" of uncertainty. 

The Stonewall research suggests a similar confusion is likely across the UK. Daly doesn't believe the situation in Scotland is notably worse than in England, and disputes the oft-cited allegation that the issue is somehow worse in Scotland's denominational schools. Homophobia may be "wrapped up in the language of religious belief" in certain schools, he says, but it's "just as much of a problem elsewhere. The TIE campaign doesn't have different strategies for different schools." 

After initial disappointments - their thousands-strong petition to change the curriculum was thrown out by parliament in 2016 - the campaign has won the support of leaders such as Nicola Sturgeon and Kezia Dugdale, and recently, the backing of a majority of MSPs. The Scottish government has set up a working group, and promised a national strategy. 

But for Daly, who himself struggled at a young age with his sexuality and society's failure to accept it, the matter remains an urgent one.  At just 21, he can reel off countless painful stories of young LGBTI students - some of which end in tragedy. One of the saddest elements of the story from St Kentigern's is that the pupil claimed his school was the safest place he had to express his identity, because he was not out at home. Perhaps for a gay pupil in ten years time, that will be a guarantee. 

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