Illustration: Jennifer Dionisio

OPINION

How do you define dignity in death?

As another fight for the right to die reached the High Court last week, Zoë Beaty considers what the battle really stands for

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By Zoë Beaty on

“Do not go gentle into that good night / Old age should burn and rage at close of day; / Rage, rage against the dying of the light. / Though wise men at their end know dark is right.” 

In 1947, Dylan Thomas finished this poem and, four years later, sent it to a magazine. The words acted as a plea, speaking to his old, ill father, who was going blind. His father, he asserted, in his famous lines, should face dying, in a “blaze”. Die if you must, Thomas said, but do it well; cry “fierce tears”. The only person he couldn’t show the poem to, he allegedly remarked to the magazine editor in a note, was his father. But behind the scenes, as he watched a life succumb to illness, he rallied for a man he loved – and for other “wise men at their end” who “know” their own death to be “right” – to meet death as they did life: with defiance and resolve. He wanted him to die with dignity. 

Almost 70 years later, national headlines are conveying a similar plea. Noel Conway, who was diagnosed with ALS, a form of motor neurone disease, in 2014, brought his case to London’s High Court last week, and public interest piqued around the case. Rather than being forced to let his illness – which medics say will “entomb” him in his own body, before killing him, in less than one year – he wants the right to die with dignity; to choose his own end in strength, than succumb to his body’s weakness. Though he was denied the right to directly challenge the law, he is seeking a declaration that being unable to end his life is a breach of his human rights. Another, now globally infamous case, saw terminally ill Charlie Gard’s parents, after being denied the right to take their son to the US for experimental treatment fight one last cause this week – for him die at home, with them, and with dignity. 

The subject of death in any context is invariably emotive, and perhaps the reason that these cases infiltrate the public consciousness so deeply. Consequently, the discussion around these high-profile battles, which crawl high up on the news agenda, is polarised. Noel Conway is the latest in a long list of people who, in facing death, or a life they feel is unliveable, have attempted to challenge UK law to allow them to control their own death. There has not yet been one successful case – and since the courts are now in recession for summer, the outcome of Conway’s claim that current stance on assisted dying in the UK breaches our human rights is not expected until the autumn.  

But what would the outcome be if the law were to be changed, or amended? Are there dangers? And could the very act of affording this pivotal concept – dignity in death – to some, in turn make others more vulnerable? 

Currently, under UK law, assisted suicide is illegal and has been since the act was introduced in 1961. With an exception of “passive euthanasia” – turning off a life support or withdrawing treatment that is keeping someone alive, for instance – being party to the act can result in 14 years in jail. Terminally ill people in the UK have a choice to accept palliative hospice care, or to refuse treatment. Many choose neither, instead opting to travel abroad to clinics like Dignitas in Switzerland, where assisted suicide is legal, at a cost of £3,380.  

Challengers argue that the 56-year-old law is outdated and no longer reflects the liberal, progressive society that we live in. As such, Conway wishes to amend the law to afford people in his position to gain back in death some of the control lost in their lives. His case is asking the High Court to consider the restrictions regarding his death in the terms of our living rights, and supporting calls for a law providing citizens in very specific circumstances the right to terminate their lives. The assisted dying law would only apply to those with terminal illness, and only when the person has six months or less to live. The person must be mentally competent to make the decision for a doctor to help them die. His is a “fight for choice”, so say the headlines. 

'We see this as a law only for people who are dying... It’s the right for those dying, to die well'

“We see this as a law only for people who are dying,” explains Ellie Ball, media and campaigns officer for Dignity in Dying, which is supporting Conway’s case. “It’s for people whose choice about life has already been taken away by illness. It’s the right for those dying, to die well. 

“There is some excellent palliative care in this country, but it just doesn’t work for everyone. And knowing that this option is there, that they can have control, can actually help them live their final few months, rather than existing within the anxiety of wondering when they are going to die.

“The proposed law has very narrow criteria and that would apply to people suffering diseases like motor neurone disease or cancer, or any other disease which has a terminal phase.”

Ball explains that the proposal is based on legislation that has been in place in Oregon in the USA for the last 20 years. She says, since the law was implemented in 1997, “there have been no known cases of abuse – it’s been operating very safely and effectively”, adding that hospices there “admitted that all the things they had worried about happening hadn’t come true”. The law has since been extended to six other states. 

There does appear to be overwhelming public support for a change in the law. According to campaign group Dignity in Dying, 82 per cent of the surveyed UK public say they would support legalising assisted dying for terminally ill, mentally competent adults. Fifty-four per cent of GPs are also supportive or neutral to a law change. And globally there has been traction on legislation regarding assisted dying. In 2015, Canada’s Supreme Court passed a bill legalising assisted suicide, which came into practice in summer last year. Under the law, which is similar to the one proposed by Dignity in Dying and Noel Conway, to qualify for the right to die a patient must have a serious and incurable illness, disease or disability; be in an advanced state of irreversible decline in capacity; endure physical and psychological suffering that is intolerable to them; and prove that their natural death has become reasonably foreseeable.

In Switzerland, where the not-for-profit Dignitas clinic for suicide and assisted suicide was founded in 1998, there are now so many foreign visitors to the centre that they have been accused of inciting “suicide tourism”. “To live with dignity, to die with dignity” is their strapline. 

Tony Nicklinson's high-profile campaign for the right to die ended in 2012. Pictured with his daughter, Lauren, as a baby
 

And there’s that word again: dignity. But if being in control of your death – choosing where, and when, and how – is dignified, then what is an undignified death? The extreme end we hear deemed suitable for someone seen as immoral, or evil – those society say should "rot in jail", or worse? Do we mean dying on a hospital trolley, in a corridor, in an under-funded, flailing NHS, when we say undignified? Do we mean being alone? Or do we mean, more simply, being forced into a position where we are unable to care for ourselves? It’s no coincidence that we hear people, usually those far from death, vowing never to let themselves be incapacitated – “shoot me if I get like that,” shouts the bravado, “I’ll just take myself off somewhere,” the assurances go. Is it as innocent as it sounds?

According to some campaigners, those flippant comments can be intensely damaging. Groups who call for assisted dying or suicide to stay illegal say that some of society’s most vulnerable could be at even more risk under more lenient laws. Not only that, but they argue having the option to die could mean people don’t try to live with disability – which sends out a damning message about the community. Attitudes, more often from completely able-bodied, healthy people, which are strongly opposed to the idea of living with any ailment – of losing dignity, as it is often described – wrongly assert that disabled people are living in an “undignified” way. Amid constant cuts to services and budgets, and in an increasingly money-poor NHS, how does this impact on the disabled community?

“We talk about dignity a lot when we talk about death,” explains Liz Carr, a disabled activist and author of Assisted Suicide The Musical. “Many of the things the public considers ‘undignified’, I live with everyday. I can’t go to the loo on my own. I can’t wipe my own bum. If I have a period, I can’t deal with that on my own, because I don’t have the capability in movement. I have a carer 24 hours per day. It’s not at the forefront of my life, it’s just … something that happens.”

Carr has been opposing changes to the law for years, as well as being active in disability politics. She’s eloquent, albeit slightly defensive at times (“I’m not religious at all, and I do believe in personal autonomy” she says), and well rehearsed. Carr believes that supporting assisted dying would take away important protections for the disabled and old and ill. With an option to die, she says, there’s a chance that people will be less likely to be persuaded to carry on in the face of adversity. And those already the subject of misguided pity, will be even further from getting the help or support that they need.

She explains. “Ultimately, when someone who looks like me – I look quite frail and I look like I’ve been ill, because I have been ill – says they want to die, people understand that. If I said I wanted to die, people would be sympathetic and support my fight against the state.

“If my partner, who is a non-disabled woman, said the same thing, I think there would be more of an outcry, and people would think it’s awful, and people would try to everything they could to stop her. She has something to live for, I don’t, according to the status quo. As long as we see those two situations as different, we’re not ready to introduce legalised assisted suicide.

There’s also the issue of having enough safeguards in place – Carr says that there will never be enough measure we can take to protect absolutely everyone from coercion, or from becoming a victim of abuse of an assisted dying law. No To Assisted Suicide, an active campaigning group, agree with her that there could be difficulties in determining an accurate prognosis or life expectancy for an individual, and that it’s too hard to assess who has the mental capacity to end their own life, as proposed legislation calls for. Suicidal people are often depressed, they argue – and it is a moral issue masquerading as medical. 

In seeing someone else battle with their own mortality, we are forced to consider our own

Yet, according to a 2015 YouGov poll, 86 per cent of the surveyed disabled community support assisted dying. And what about for those like Conway – or patients with other terminal diseases – for whom life is imminently ending? Does that make a difference to Carr’s stance?  “No,” she says. “My argument has always been, why six months, specifically then? Why not make it six weeks? Or one month? Doctors have told me that you cannot make a properly accurate prognosis on someone’s death until around two weeks before they die.

“However I’m not against assisted dying per se. I’m against it in the context of the world we live in right now. These stories are all very emotive, of course. No one wants suffering. I don’t want people to suffer. But all lives are not yet viewed as equal. Until they are, we’re not ready to have that conversation yet.”

For Lauren Nicklinson, daughter of Tony Nicklinson, that’s not acceptable. Her dad died in August 2012 after his high-profile right-to-die case was lost. Instead of being afforded the controlled death he wished, after determining his life with locked-in syndrome following a stroke to be insufferable, he passed away after refusing food for days, and eventually contracting fatal pneumonia. For him and his family, it was a long and overwhelmingly painful time.

“I find it hard to believe that this country – despite being one of the most advanced countries in the world – not only can’t figure out how to make assisted suicide a reality, but can’t even be bothered to try,” says Nicklinson.

“Reading the case of Noel Conway brings back painful memories for us,” Nicklinson explains. “His case is markedly different to Dad’s – he is basically asking for half of the extent of law changes that we did – but it could, if it goes the right way, be a good step in the right direction. And Conway will eventually be locked-in like dad. He’ll be in pain, waiting for his faculties to shut down. Then one day he will probably just suffocate. Why are we allowing people to die that way?

“The detail of the way my dad died – the undignified way he died – could have been prevented. Death is never going to be pleasant, that I understand. But it could have been less painful for him and it could have been less harrowing for us.”

Nicklinson adds that the right-to-die debate is now in a frustrating cycle, wherein public support remains constantly high but their message isn’t being translated or communicated into politics. “How many times does history have to repeat itself before our government will even review the legislation?” she says. “These cases going through the courts are all slightly different – Conway’s case wouldn’t have helped my dad, for instance – but they all point to the same thing: that people still want the law to change, and for people to stop suffering.

“Until you’ve seen it yourself, like we did with dad, you can’t know what it’s like. I wouldn’t wish it on anyone.”

And perhaps that’s exactly why these debates and cases, like Conway’s, resonate so deeply, and profoundly – because, in seeing someone else battle with their own mortality, we are forced to consider our own. And that of our loved ones. We want to be “dignified”, and good, and we want to do death well, because an undignified death – the humiliation of it and absolute removal of control – is so terrifying. We want a death to reflect the life we lived in order to subside our biggest fear – of dying itself. 

@zoe_beaty

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Illustration: Jennifer Dionisio
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