Tony Nicklinson
Assisted dying: whither next?
Wednesday afternoon
Here I am in a lecture theatre in Bristo Square. Outside the Fringe is in full giddy flight; inside faces are serious, the mood expectant. This is the debate organised by the Mason Institute for Medicine, Life Sciences and the Law, in conjunction with Sparkle and Dark Theatre Company, to which I was invited a while back, and I’m feeling devoutly thankful I’m on the listening side of the room with about 60 other folk, not in one of the hot seats on the other side of the table.
As regular visitors to this blog know, I wrote a book on this subject, called Right to Die. I even appeared at the Edinburgh International Book Festival to talk about it. But I still agonise over the issues. The arguments and counter-arguments are so complex and emotive, the issues so finely nuanced, and every time I listen to them I feel huge sympathy for each side. As preparation for today I’ve been reading relevant papers – eg Margot MacDonald’s draft Assisted Suicide (Scotland) Bill, and a position statement from The Scottish Council for Human Bioethics – and I don’t envy anyone having to hold all this stuff in their heads. I went crazy with a highlighter, and even so only just stayed abreast of the pros and cons.
So who are these folk who’re putting their heads above the parapet? Patrick Harvey, MSP, Professor Graeme Laurie (Professor of Medical Jurisprudence at the University of Edinburgh), Professor Calum McKellar (Scottish Council for Human Bioethics) and Lawrence Illsley (Sparkle and Dark Theatre Company). In the chair, broadcaster Sheena McDonald.
We hear the usual stuff: the present legal position; how Margot McDonald’s proposed new bill differs from the last one; the experience of assisted death in Oregon, Belgium and Switzerland; the pros and cons of assisting deaths. Words like dignity, respect, autonomy are used frequently, everyone wanting us to believe they respect dignity and autonomy totally.
The politician reminds us that parliament debates many moral issues, (sexual, reproductive etc), but how to help the dying – a condition we must all face – has taken the longest to resolve. Sobering thought. But the defeat of successive proposed bills has shown us how reluctant our friends in both Westminster and Holyrood are to grasp this nettle. Margot MacDonald has limited her new bill to those who are terminally ill, facing imminent death, in order to overcome some of the resistance. It’s no earthly use to folk like Tony Nicklinson and Diane Pretty, trapped in disintegrating bodies, facing appallingly protracted dying – and these are the ones I agonise over the most.
The poet/musician on the panel homes in on society’s reluctance to talk about death; the importance of thinking and talking about these issues while we’re conscious and sentient and able to articulate our choices. Good man.
The audience give Professor McKellar a rough passage (he’s opposed to assisting death). They really don’t like his insistence that all human life is equally valuable, society is about dependence and care of each other, and an assisted dying bill would mean that some lives were deemed less worthy than others. From all sides come protests – the cruelty of keeping people alive in appalling conditions; the right to choose either way; the iniquity of autonomy limited by the moral qualms of others; the limitations of hospital, hospice and palliative care; the wrongness of assuming other people’s reactions; the wrongness of imposing theoretical notions of respect onto others.
The house having shown a clear preference for some way out for those facing horrible undignified or painful deaths, the experts and experienced then pitch in with facts and details about the patchy nature of palliative care provision, the lack of hospice beds, the effect of just knowing there’s a way out, the position of minors. I’ve heard it all before, but I’m still glad I’m not on the panel – there’s a limit to the number of times you can simply agree with the challengers.
This whole debate was sparked off by Sparkle and Dark’s play, Killing Roger, which I reviewed on Monday, so it’s fitting to let Lawrence have the last word. The arts – plays, novels etc – allow conversations to happen. They stimulate and engage people. They inspire them to explore the issues that bit more, and encourage reasoned thinking, he says. I agree. This is precisely why I write novels on these issues; not to impose my ideas and opinions, but to encourage others to form their own.
Timing
It’s five years now since my novel Right to Die was published. In the run up to publication day I fretted when news stories related to this issue appeared. Would they steal my thunder and make it look as if I was jumping on someone else’s bandwagon?
How absurd. Here we are in 2013 and the subject continues to grab the attention of reporters and the public. Only this week the case of Paul Lamb, a 57-year-old man who’s been paralysed for the past 23 years after a road accident, hit the headlines. He’s taken up the campaign (initiated by Tony Nicklinson and discussed here) to legalise assisted death. He too is unable to do the act himself but wants any doctor who helps him to be immune from prosecution.This issue isn’t going away any time soon and Right to Die is as relevant today as it was in 2008.
Whenever and wherever one contemplates slow deterioration and indignity, pain and suffering, the prospect is horrific. It doesn’t take much imagination to see why a swift end to it all might seem preferable. How to live through the process and achieve a good death is the question.
But speaking of death, I was hugely impressed by best selling novelist Iain Banks‘ recent wry announcement about his own impending demise. As he stated on his website: ‘I am officially Very Poorly.’ He is. He has inoperable gall bladder cancer with numerous secondaries and doesn’t expect to live beyond a few months. His current novel will be his last and his publishers are rushing it through to give him a sporting chance of seeing it hit the shelves. He adds with the sort of ghoulish humour which is helping him deal with this tough situation, ‘I’ve asked my partner Adele if she will do me the honour of becoming my widow.’ The style and language of a brave man and a truly accomplished writer.
My own mark will be infinitessimal compared with his but I still worry about the impact of my books and the timing of their publication: the subjects I deal with do have their moment in the headlights. I couldn’t believe it when last week the press picked up on the fact that organ donation rates had risen significantly. and splashed it everywhere in capital letters. And blow me, the topic even came up in fiction in BBC1’s medical drama Holby City, with the death of a young doctor during brain surgery. She’d requested her organs be used and there was a dispute in the family. Hey, that should all have come after Over My Dead Body was published, not while it’s in the starting blocks!
But supply is still falling way below demand when it comes to human organs so all is not lost yet. Indeed, I doubt it will ever be too late to publish a book about transplantation in my life time.
Locked in to a fate worse than death
Tony Nicklinson is 58. He’s paralysed from the neck down, can’t speak, and his only means of communication is by moving his eyes on a screen linked to a special computer. And yet his brain is so alive and intelligent that he can hold his own in arguments with twitters and QCs alike.
Prior to the stroke, Mr Nicklinson was a handsome, successful, fun-loving man, keen on extreme sports. He was in Greece on a business trip, when he suffered a catastrophic stroke in 2005. Now he is in a locked-in state, dependent on carers for his every need, with no hope of recovery. He considers his life as ‘miserable, demeaning and undignified‘. He ‘has no privacy or dignity left‘, and he rates it a state worse than death. He’s held that view since 2007; it’s no passing whim. It’s what’s described as a ‘voluntary, clear, settled and informed wish’ in legal parlance. Watching him on The Channel 4 documentary, Let Our Dad Die, surely no one could help but sympathise with his viewpoint. Even the Greek doctor who saved his life is appalled by the consequences of his actions, although no blame attaches to him.
In March Mr Nicklinson won the right to have his case heard by the High Court. The hearing took place last week (starting 19 June). There was considerable media interest in the run up to it. Lord Falconer visited the family at home. BBC’s Fergus Walsh went to see for himself what kind of a life a locked-in patient has. Channel 4 aired its documentary. Though he could communicate with these people in his own home, Mr Nicklinson was unable to attend the hearing in person, so he stated his arguments through emails and lawyers.
His case? Simply put, he is incapable of taking his own life, so he wants the judges to rule that, when he decides he wants to die, a doctor will be immune from prosecution if he/she helps him. Mr Nicklinson fully realises that the law as it stands prohibits anyone else taking his life; that would be murder. His defence rests on the view that he is being discriminated against, because of his disability. He is looking for assistance to do what he would do for himself were he able. Furthermore he adds poignantly, why should other people be allowed to condemn him to a life of increasing misery?
His barrister described it in more ponderous legal terms: ‘a serious interference of his common law and Convention rights of autonomy and dignity’.
It’s important to note that Mr Nicklinson is not seeking a change in the law. He is seeking two declarations from the court.
1. That in the circumstances of his case – and where an order has been sought from the court in advance – ‘the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die‘.
2. That the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .
The QC acting for this family argues that a prior sanction by a court ‘would provide the strongest possible safeguard against abuse’. And furthermore ‘it would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people’s attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a “burden”.’
But any loosening of the limits frightens the legal fraternity. Speaking directly to Mr Nicklinson, Lord Falconer made it perfectly clear that in his judgement, modifying the law to accommodate such an act would be ‘crossing the Rubicon’. He was himself sympathetic to assisted suicide in cases of terrible disability with no prospect of improvement, where the patient expressed a sustained wish to put an end to their misery, but ending someone else’s life is murder and that must always be unacceptable.
Pause here for a moment and ask yourself: What answer would I give to Tony Nicklinson?
Watching the documentary I wanted to weep with this man. His chagrin, his pain, were palpable. But there again, as Christina Petterson put it in The Independent,
‘… the law isn’t about how we feel. The law isn’t about how you feel if you were once healthy and fit and happy, and now aren’t. The law, as Lord Falconer said on that Dispatches, is the same for everybody. “If people want to kill themselves,” he said, it’s an “entirely private matter”, but “they can’t kill somebody else”. The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. “When you develop a society where some people judge that other people’s lives are not worth living,” he said, “that’s the Rubicon.”‘
There can be no happy ending for the Nicklinsons, neither Tony, nor his wife, nor his daughters. But each time a tragic case like this comes to court, and I watch the family being forced to parade their lives in front of others, to expend dwindling energy on fighting their cause, I feel there has to be an alternative.
I can, of course, see the dangers inherent in a change to the law against taking life. The consequences could be inconceivably horrible. I accept too that these extreme cases make bad laws. But the fact remains, that these exceptional circumstances do present from time to time. And they seem to cry out for special judgements.
Would it be so terrible to openly acknowledge this fact, and to relieve these families of the necessity of taking their cases to the courts? Why not constitute a sort of Ombudscommittee – a gathering of carefully selected, experienced and wise folk, representing law, medicine, religion, ethics, patients – who could quietly, rationally, compassionately, debate the very few cases which fall into this terrible legal limbo, taking guidance from others as and when they need it? Not in such a way as to drive the debate underground, not to sweep the anomalies under the carpet, but to take individual cases away from the heat and distortion of media coverage, protecting and supporting those for whom this dilemma is a lived reality not a theoretical argument.
I haven’t ever seen this idea promoted, and it’s the first time I’ve aired my own view on this. So what do you think? Would you be in favour? Or can you see some glaring reason why this would not be an acceptable way forward?
What would your solution be?