Tony Nicklinson RIP

We were on holiday with our family this past week in the Brecon Beacons. We weren't far from where we used to enjoy many an Easter break with them as children, in the Black Mountains. It's a seriously beautiful part of the world. In the old days, we had great enjoyment scrambling up the hills in the area, walking Offa's Dyke Path, exploring the streams and woods, making fires and barbecuing marshmallows - and, once, disastrously, a pair of trousers.... It was in the Beacons that I had my second big seizure - many years before, unconnectedly, I was diagnosed with ALS/MND. Now my holiday activity is largely of a passive nature from my wheelchair. No more hill-walking or exploring the woods and moorlands. No more extricating feet from boot-sucking bogs, or hastily throwing on a kagoule as the rain catches up with you, or manoeuvring the map around to align various landmarks and work out just where you are. No more rising the crest of a slope and discovering a breathtaking view bathed in sunlight....

And yet it's been a lovely week. Not really because of the views, though the view up to the Pen y Fan ridge from our barn conversion was great, sometimes shrouded in cloud, sometimes made bright by the sun, sometimes with sharp shadows of the morning or evening. Not really because of the change, though it was nice to see Jane not having to think about meals, since the younger generation took turns in preparing a main meal as they did in keeping an eye on me. What I most enjoyed was being in that environment of mutual respect and affection, which included me. That's what made it a love-ly week.

On Wednesday afternoon there was a gentleness when two of them broke the news to me, "Dad, Tony Nicklinson has died." I was lowered into my seat, as they told me more: "Of natural causes. Pneumonia. He hadn't been eating." I was sad, in one way, to hear it. He was a man whom I'd met and talked with of important matters, and with whom I shared a similar predicament, a fellow-dribbler and with a remarkable wife called Jane. I had admired his stubbornness. But I also reflected that God had granted him his two great wishes: first, to have his day in court; and second, to have his suffering cut short by death. Tony, of course, would not have looked at it like that. The idea of "God" was one of the things that made him angry. He would probably have preferred me to say that he achieved his day in court and that he precipitated his own end. I'm not greatly fussed by the language you use, but I am truly grateful that his suffering and deep unhappiness is over, that the fever of his life is over and his work is done.

Meeting the late Tony Nicklinson

The Times, which campaigns vigorously for euthanasia, covered Tony's death extensively on Thursday. Its use of loaded terminology in news coverage left much to be desired: "Six days after the High Court condemned him to live...". Later the article quoted his wife, Jane: "To all those religious groups, all the pro-life advocates who advised the family to cherish the gift of life, she had the same response: come down and look Tony in the eye, while you say it. Watch him dribble, hear him howl, and ask yourself again whether this is a life worth preserving?" At least one opponent of euthanasia was given that privilege, thanks to the BBC: BBC Inside Out Tony Nicklinson & me. I watched him and heard him. I saw his wistful misery as we gazed into each other's eyes. And actually, Jane, despite his frustration and his feeling of indignity (though I didn't see an undignified person), despite his incapacity and his anger, I think his was, or could have been, a life worth preserving. I saw a man of extraordinary determination. They say courage is not never being afraid, but carrying on even through the fear. So determination is not never feeling weary, but carrying on even through the exhaustion. Tony had bags of fighting spirit. That's what, I suspect, kept him going. Fighting for the idea that we should all have the right to choose how and when we die - because I think for him it was something more than that he should be in charge of his own dying, although he did feel that he was the object of unfair discrimination, being physically unable to commit suicide. Part of his argument was based on the inequality his condition subjected him to. Personally I think making it legal to take anyone's life is a bad principle. Tony's was a hard case, without doubt, but hard exceptional cases make bad law.

The tragic thing in my view is that Tony's fighting spirit was so directed to a negative and self-destructive end, his own death. We're about to see paralympic athletes who by sheer determination have overcome "impossible" handicaps to achieve heights beyond most of the fittest of us. In no way am I suggesting that Tony could have escaped his locked-in prison to achieve such physical feats, but he proved that he could win what The Times termed "victory" in other ways than physical - as indeed others with locked-in syndrome are doing like Gary Parkinson (Radio 5 Live report) or Bram Harrison (Independent report: Britain's bravest DJ). Their aims and interests are positive, and are not just about themselves getting better. I've no doubt they get fed up and weary with life, from time to time. It goes against the grain, as I know, to be constantly depending on others to survive.

And yet, here's the magic, which is so priceless to receive, to be loved by those around us actually makes life worth living. I love the BBC's Mark Clemmit's account of Deborah Parkinson, wife of footballer, Gary: "His wife is the most extraordinary woman I have ever, ever met. There was never a down moment. She keeps going and her dedication to her man is beyond belief. It says 'better and for worse' when you sign up and that's her attitude.

"They nearly lost him several times and Deborah was given options to turn off the life-support machine, but she wouldn't entertain the notion. She will keep supporting him."

In the end, it doesn't matter what we can achieve; it matters what we can receive. That's what makes life worth preserving. It is what makes life worth living. That's why I've had a good holiday. That's why, as my abilities decline still further, I hope I'll still be grateful for every day of life. I'm immensely sad that that wasn't enough for Tony, for without doubt he was cherished and loved amazingly by Jane, and Lauren and Beth, beyond what's "reasonable" to expect. Tragically for him the darkness blotted out the light. Ultimately humanity makes a choice and takes its chance. However I dare to pray that darkness has not had the last word. RIP.

A mixed news story

I was going to entitle this "A sad news story", but I can't honestly do that, although I'm sure that the protagonists, Tony Nicklinson and "Martin", would bitterly disagree. In fact their view would be that they've been the victims of an egregious miscarriage of justice - as today the High Court ruled against their application to allow a professional to end their lives of Locked-in Syndrome. As readers of this blog will be aware, Jane and I spent a morning with Tony and his wife, Jane, in their home last June for a BBC programme. As I don't know "Martin", I'll just talk about Tony's case.

What's good about this story? you might ask. Primarily, it's good that a precedent to legalise killing has been resisted. Dress it up how you will, in whatever humanitarian, compassionate terms, deliberately to end life is killing. The three judges, who said the court had been “deeply moved” by both men’s circumstances, ruled that such matters were for Parliament to decide. Since English law is case-law, one ruling in favour of assisted suicide would open the door for others - with all the adverse implications for the disabled, senile and terminally ill that could usher in, as I've rehearsed elsewhere. For three appointed judges to change the law so radically, making deliberate killing legitimate on occasions, is patently ultra vires, beyond their powers. 

I was sorry to read in The Independent, briefed, no doubt, by Tony's solicitors, that his "physical condition has deteriorated in recent weeks leaving him in constant pain and discomfort", which was a reason for seeking an expedited appeal. When I met him last year, he told me that I was better off than him in that I had a degenerative condition and he didn't. I was, and am, certainly able to do more than he is, but such comparisons are odious, and otiose. At some point in today's reporting of the case a forecast of 25 years of further locked-in state was cited. It seems that might not be the case.

I pointed out to Tony last year that he was legally entitled to refuse treatment. If, for example, he contracted an infection, he could refuse antibiotics and ask just to be kept comfortable with painkillers and sedation. Presumably, Bindmans, his expensive London solicitors, will have advised him about living wills and have the know-how to produce one in his situation. He's not actually condemned to live. And so, on the Channel 4 News, when his wife had just been told that an anonymous "benefactor" had offered to pay for him to travel to Dignitas to end it all, she havered and hesitated and concluded that he'd probably not want to accept because he didn't see why he should travel to an industrial estate in Switzerland. He'd rather fight for the right to be killed here. I think that's very much the point; Tony's personal crusade to control his own death has become his reason for living. And that seems to me very sad. It's such a depressing and life-denying purpose. Although he says he wants to die, he doesn't. He wants to live to assert the ultimate statement of control, suicide. Maybe for it to be in the public eye is just the intention of his advisers.

When I talked to him I asked Tony whether there was nothing good about his life. He understandably said, "No." "Not even the love of your wife and your daughters?" I think his reply was, "That's beside the point. It's a matter of equality." Well, in my view, love trumps equality, and to be loved, no matter what the cost, makes life worth living, no matter what the limitations. Even the prisoner locked in windowless solitary confinement survives on the knowledge he is loved; indeed that alone gives his life value. Not to enjoy that makes for bitterness and despair. I listened to Tony's sobs while Jane talked to reporters, and thought, "How tragic to pin such hope on such an outcome and to miss the blessing of knowing the Ultimate in love!" 

Little things...

Before I vent my spleen on Michael Gove (if I ever get round to it) or Ed (aka Cain) Miliband, let me dwell on more cheerful things. I can't say it does much good to get too upset about politicians, as the most ambitious of them seem very similar to each other. So instead I'll post about some of the jollier aspects of my week - trivial perhaps, but actually such things are the stuff of life.

For example, Lynne gave Jane a bird-feeder earlier this year and she stuck it on the kitchen window. "That'll never work," I told her. "They'll never come that near the house, especially to the kitchen window with you and the dog in there." How wrong I was! As I sat in my chair in the conservatory, I had a grandstand view of a sparrow mother feeding her rather demanding, rather obese fledgling brood. My own Springwatch! They've grown and flown away now - but they weren't bad substitutes for chickens (to watch, not eat, I hasten to add).

Then there was planning for an MNDA Bake History coffee morning we thought we'd hold at home a week today. I have a Facebook friend in Kelso whose husband has a similar degenerative disease. Susan saw my entry about it. Clearly she can't come but she did offer to send a few "sock monkeys" for selling or raffling. I was intrigued. They arrived yesterday. I must say they are rather wonderful works of craftsmanship. The sewing is incredibly neat to the point of being invisible. They are quite appealing. Not surprisingly demand looks set to exceed supply. The best thing about them, though, is Susan's generosity in donating and sending them. Another bright thing to enjoy.

 Talking of bright things, life isn't all light. It's light and dark. Yet I was thinking as I looked out at my usual breakfast view, there's beauty in the darkness as well. Without the dark, of course, there'd be no light. But I love the mysterious shadow beneath the dark crimson leaves of the Cotinus, the "Smoke Tree". It's like a warm cave framed by the bright green leaves of the apple and hazel. Without it my view would be much duller. And of course the view is constantly changing in different seasons and conditions. 

For me it is sad that there are folk like Tony Nicklinson who has chosen not to enjoy the small joys of his dreadfully limited life but rather to campaign for euthanasia both for himself and also for others. No one would wish Locked-in syndrome on anyone, but it need not be the death sentence he takes it to be, if people like Jean-Dominique Bauby (author of The Diving Bell and the Butterfly) and Michelle Wheatley, Bram Harrison and Martin Pistorius are to be believed (Bram Harrison's story). 

June is the MND Association's Month of Optimism. That's not a month of whistling in the dark. No one's pretending ALS/MND is any fun, though some of my MND friends have, or had, great senses of humour. However it is a month where we focus on hope - the hope to be found in the developments of research, the hope we find in being cared about and the hope to be found in the small joys of life, which somehow seem to show up all the more brightly because of the mysterious darkness against which they're set.

"Untold possibilities"

Last time I wrote about Bram Harrison, the DJ with Locked-in Syndrome. A bit of the I article I omitted was this: "Harrison is cognitively sharp, funny and mischievous; a technology geek who holds faith in medical progress, stem cell advances in particular, to perhaps unlock him one day." 
Browsing the MND Association website this afternoon I came across this article: Association-funded stem cell research achieves milestone. I remember talking to Tom Isaacs, with Parkinson's, who walked 4500 miles round the British coast raising funds for research into that disease, about ten years ago. He had great faith that research would see a cure even within his lifetime. He founded The Cure Parkinson's Trust, whose watchword is "Hope". Neither he nor I could have foreseen the exponential acceleration of research into neurological conditions over that time. What particularly excites me about the research described below is that it doesn't use embryonic stem cells (i.e. obtained from fertility-treatment excess embryos) but induced pluripotent stem cells (iPS cells) obtained from adult skin cells. For me it poses less of an ethical problem. Predictably this news didn't hit the national headlines, in contrast to embryonic stem cells - which seems to with strange regularity.


However, this is a really good news story for the reasons the article explains.

A cutting-edge stem cell research programme funded by the MND Association has produced a key development that could have a powerful impact on the search for treatments for MND.

The international research team, led by world-class scientists from the University of Edinburgh, King’s College London and Columbia University (New York), has for the first time used stem cells derived from adult skin to generate living human motor neurones that display key characteristics of MND.

These diseased neurones offer huge potential. As a uniquely realistic laboratory model of the disease they could allow for rapid screening of thousands of drugs, as well as furthering understanding of underlying disease mechanisms.

What did the researchers do?

Researchers started with skin cells donated by a 56 year old man with the rare, inherited form of MND caused by mistakes in the TDP-43 gene. Although abnormalities in this gene are uncommon, the protein produced by the TDP-43 gene has been implicated as a pivotal player in the majority of cases of MND.

Scientists used a special cocktail of chemicals to ‘reprogramme’ the donated skin cells, turning them first into stem cells similar to those derived from embryos and then into motor neurones.

Compared to motor neurones generated from the skin cells of healthy individuals, the neurones with the abnormal TDP-43 demonstrated decreased survival and increased vulnerability to damage.

The TDP-43 protein also displayed a greater tendency towards clumping together, or aggregating. This is a recognised hallmark of diseased neurones in MND and for the first time provides scientists with the opportunity to see the direct effect of abnormal TDP-43 on living human cells.

“Untold possibilities”

The team’s results, published as a ‘free to access’ article in the journal PNAS, provide proof of principle that skin cells can be successfully turned into diseased motor neurones.

At the same time they represent significant progress towards the key aim of this groundbreaking £800,000 programme: to develop and characterise a robust human cell model of MND that can be made available to scientists across the world.

Dr Brian Dickie, director of research development at the MND Association, said: “This advance is a significant milestone on the road to developing a laboratory model of MND that faithfully reflects the cellular events happening in the patient. It is also a testament to the importance of international collaboration, with eminent scientists from leading institutions around the world focused on the common goal of understanding and, ultimately, defeating this devastating disease”.

Prof Siddharthan Chandran of the University of Edinburgh, who is leading the programme, said: “Using patient stem cells to model MND in a dish offers untold possibilities for how we study the cause of this terrible disease as well as accelerating drug discovery by providing a cost effective way to test many thousands of potential treatments.”

How much better is it to cherish hope than to abandon it. Wasn't it Dante's Hell that had the sign over it, "Abandon Hope, all ye who enter here"? Well, here's a reason for hope, maybe not for my generation, or just maybe so....

Why can't we have more of this in the media?

We really like the i newspaper. For one thing it doesn't cost an arm and a leg (20p weekdays, 30p Saturdays); for another it doesn't weigh a ton or represent a small forest, just a small tabloid format; for a third, its editorial approach is "independent"; for a fourth, it has a good page of puzzles, like crosswords, sodukos, codewords to keep our minds active. I don't think it makes a profit for its owner. It deserves to, and deserves to be better known. After all, the other newspapers from The Times downwards are increasingly full of rubbish.

Anyway, on Saturday, Jane pointed out a major article to me:

Bram Harrison, with i journalist Nina Lakhani (Independent photo)

Locked in but still lost in music: UK's bravest DJ. It's about Bram Harrison, a chap who had a mountain bike accident 14 years ago, suffering a severe head injury which left him "locked in", able only to communicate by eye-movement. He is known as DJ Eye Tech on his own radio show, Eye Life Radio. Here's part of the article: "Several years ago a doctor asked him what they should do if, for whatever reason, his heart stopped. In other words, would he want to be resuscitated or should they let him die? He looked up immediately. He wanted to live then, just as he wants to live now.

His desire for a long, healthy, meaningful life may strike some as surprising. Another man with locked-in syndrome, Tony Nicklinson, 57 – stricken since a 2005 stroke – has made headlines in recent weeks as he took his fight for the right to die to the High Court.

Nicklinson's plight has attracted a lot of empathy as many people assume they would feel the same way: that a locked-in life is not worth living.

This makes Harrison angry. 'In the early days two nurses that I overheard talking said that I would not last long and that I would kill myself, but I knew that would never happen.'

In an email a few days before we meet, Harrison said: 'I've definitely not got the same view as Tony Nicklinson. I don't want people to think that locked-in syndrome is unbearable. I enjoy my rather limited life.'" The article ends: "There have been many low points but he has never felt hopeless. 'I don't want my relatives to see Tony Nicklinson and think that's how I feel,' he says."

The article is worth reading, because it isn't the picture projected by most of the media. About a year ago, BBC's Radio 5 broadcast the whole of the Victoria Derbyshire programme from Tony Nicklinson's home. And the Beeb have been back several times since, including with me. No one would want to be in his situation and I don't in the least blame him for his desire to die. Admittedly he's gone to the High Court since then to ask if someone can be allowed to end his life without it being murder. But that wasn't in the news a year ago.

My question is where was, and is, the national coverage of Michelle Wheatley, the young mum whom I mentioned in I Choose Everything, and Gary Parkinson, who scouts for Middlesborough FC, and now Bram Harrison, all of whom have locked-in syndrome and want to live. I don't have the resources of the BBC, but I've come across them and written about them. Why do we not hear from the national broadcaster about them? As a friend of mine commented, "Hope other news sources run this too - to prove they're not biased!" I don't think they have - as yet. I've found three positives to one negative. Even the worst of disabilities can be, and is, lived positively. So I say, good for The i! And for goodness' sake prove your independence, BBC! Let's hear about them. Let's see them.

Watch out!

Watch out! It appears that Dignity in Dying (formerly the Voluntary Euthanasia Society) is rolling out its overdue autumn offensive, with a little help from its friends. It must seem a shame that there's been so much important news hogging the headlines, such as the euro-crisis, the Leveson Inquiry, the Chancellor's autumn statement, the public sector strike, Egyptian and DRC elections, Pakistan border incidents.... But the Falconer "Commission" promised to report late November. Maybe, like the government's prediction for balancing the books, it had to be moved on a bit in the light of events.

BBC filming at Cornerstone

Well, yesterday afternoon I received a message from a friend saying was I going to be on the BBC later on. She thought she'd heard me on Radio Oxford. "Not that I know of," I replied. However in due course an item about a chap with locked-in syndrome accompanied by a picture of Tony Nicklinson, whom I'd met in the summer, was trailed for Inside Out South. And lo and behold, at 7.45 or so on came the piece which had been produced for Bristol. Listening to it again, there's one misleading piece of commentary near the end which says something like, "Now both Tony and Michael are awaiting the report of the 'commission' to see its recommendations...". No, I'm not. I'm aware that it's a done deal, and that the 'commission' was fatally compromised from its inception. I would be interested in what a Royal Commission had to say.

The significance of the item dawned on me today when my son pointed out to me the first item on the BBC website's News England page, headlined, "'Right to die' man seeks ruling" which linked to the "debate" I had with Tony. The article is about Tony Nicklinson applying to the High Court to grant permission for a doctor to end his life. As I've said before, he's a brave chap. I couldn't help but be moved and sympathetic when we met. I can understand why he felt his frustration unbearable, but I agree with someone who watched it (herself suffering from a painful degenerative disease); she said, "Sad he felt there was nothing to live for, not even his misguided but loving wife. Sad that people think their lives are their own to choose." 

I imagine the case will get a lot of media coverage. I can't imagine that his advisers have held out great hope of success, since the taking of life is still illegal in this country. But of course there'll be a lot of discussion of inequality/discrimination and choice. And justifiable public sympathy and less justifiable indignation.

Next will come the "Commission" with a great hullabaloo and media circus - with an appearance of being official, and carefully researched, and balanced, and no mention of the the fact that nine of the 12-strong panel had previously declared in favour of assisted dying and none had declared against it. I imagine it will be presented to MPs as the definitive exploration of the issue and conclude that with tight safeguards doctors be allowed deliberately to take the life of someone so inclined.

In Canada, as I said yesterday, there's been a similar exercise. One response came from my friend Alison Davis, who has multiple disabilities and what many would call an unbearable "quality of life", who described her experience of asking for death to the Calgary Herald.

Alison Davis

Re: "No right to be killed; Doctor assisted suicide should not be allowed," Editorial, Nov. 20. 

I was glad to see your excellent editorial stating the case against euthanasia. If it had been available to me some years ago, I wouldn't now be writing to you. I have several severe disabling conditions. I use a wheelchair full time and a vent at night. I have severe pain, which even morphine can't control. 

I wanted to die for more than 10 years, at a time when doctors thought my life expectancy was very short. I attempted suicide seriously several times, and was saved, only because friends found me in time and took me to the emergency room, where I was treated. 

At first, I was angry with them for thwarting my wishes. Now, I'm eternally grateful. I want to live now, even though my pain is worse than it was when I wanted to die. What changed my mind is friends who refused to accept my view that my life had no value, and a group of very poor children, who loved me wonderfully and overwhelmingly. I found a reason to live in reaching out to help others, rather than turning the negativity on myself. If assisted suicide had been available then, no one would ever have known the doctors' prognosis was wrong, or that I'd be missing the best years of my life.

Alison Davis, Blandford Forum, U.K.

Counsel of hope

This week there have been two stories which have leaped to my attention. One, I have to confess, I first heard on the Breakfast Show on 5 Live (Well done, the BBC!). The other appeared in The Guardian and The Telegraph. What they had in common is that they are about men confounding the realists and the scaremongers.

The Bolton News

The first is the story of Gary Parkinson: Paralysed former professional footballer Gary Parkinson has been given a role scouting for his home town club — despite only being able to communicate with a system of blinks. Gary Parkinson once played for Middlesborough and was coach for Blackpool Youth Team. He had a brain-stem stroke which has left him with Locked-in Syndrome (like Tony Nicklinson whom Jane and I met in the early summer, you may remember, for BBC West's Inside Out programme). It doesn't sound as though he has the same fancy computer, but he communicates with his wife, Deborah, through blinking his eye. He once played with Tony Mowbray, Middlesborough's manager; and he's now sent the many DVDs of youngsters hoping to get a contract with the club, whom he rates by blinking: from once, no, to four times, sign him!

I was really impressed by the determination of his friends and family (and presumably himself) not to give up on him. At the end of the Bolton News article, I read:
"The 43-year-old was initially confined to his bed following a stroke in his brain stem.

But there have been improvements.

"He has been for day visits to his home, while there are hopes he will get his speech back after an operation on his vocal chords.

"Mr Mowbray, speaking in Middlesbrough’s match-day programme on Saturday, said: 'We were determined to give Gary a role, where he could feel involved. Not only that, I genuinely value his opinions about the game.'"

The second story was from Belgium and concerned Rom Houben who had been in a "coma" for 23 years. He had been a martial arts enthusiast and almost killed in a car crash in 1983. He was regularly diagnosed as being in a permanent vegetative state. "For 23 years Rom Houben was ­imprisoned in his own body. He saw his doctors and nurses as they visited him during their daily rounds; he listened to the conversations of his carers; he heard his mother deliver the news to him that his father had died. But he could do nothing. He was unable to communicate with his doctors or family. He could not move his head or weep, he could only listen" until a neurologist from the University of Liege took another look. "Using a state-of-the-art scanning system, Laureys found to his amazement that his brain was functioning almost normally." With intensive physio, he now has some movement and is able to communicate using a touch screen with one finger.

From The Guardian

"The moment it was discovered he was not in a vegetative state, said Houben, was like being born again. 'I'll never forget the day that they discovered me,' he said. 'It was my second birth'." 

One wonders if in the brave new world of euthanasia, which some organisations are pressing towards, Rom Houben would have survived to see his second birth - or whether his "quality of life" would have been written off as negligible, his care withdrawn and his death engineered. The preservation of life is a paramount principle in human and humane society. 

"Dum spiro, spero" - while I breath, I hope - the old saying goes. What a shame that so many now utter counsels of despair! "You're disabled: you'll not be much use." "You're old and going senile: you're just becoming a burden." "You have a terminal illness: you've got nothing to live for." That's all diabolical nonsense. Every life is great gift.  

The law of the jungle

Here I am sitting in Cornerstone (my favourite coffee shop), enjoying a peaceful cup of coffee. I've just put up on its Facebook page pictures taken at Tuesday's friendly AGM. And now I've noticed on Peter Saunders' blog that the BBC is putting out another programme this coming Tuesday about patients in a permanent vegetative state, and my heart sank, especially when I read how it's billed: "There are thought to be as many as 5000 such people in the UK. The working party will look at concerns that assessment and diagnosis of patients is not consistent across the country and will ask whether the cost of long term care is affordable to the NHS. Ann Alexander examines calls for a reform of the process to end the life of such patients where their families believe their loved one would no longer wish to be alive. The programme reveals how some hospitals appear unaware of the law and hears how the process can be lengthy and costly, putting families under further strain"(Peter's italics). As Peter comments, the old specious euphemisms. (There was rather a witty Mac cartoon in The Telegraph on the subject.)


You can see the way the argument's running. This Monday it was, "Individuals should be allowed to choose when they die (only when their lives are unbearable, of course)." Next Tuesday it will be, "Oh yes, and did we forget to mention those who can't choose? Can we afford them? No. They're very expensive to keep. So let's put them down." The argument flows from choice to non-choice so easily, from patient's decision to family's wish so seductively. "Surely they have no quality of life?" You may remember this was something I touched on in Chapter 21 of I Choose Everything, "Compassion costs":


"With the discovery that we can have some form of communication with some patients in a persistent vegetative state (deep and long-lasting unconsciousness), one of the first questions journalists asked was whether that meant one could get an answer to the question, ‘Do you want to go on living?’ They expected, I think, to be told No, and that this would solve the dilemma of keeping comatose patients expensively alive, but the surprising truth they heard was that the vast majority of ‘locked-in’ patients (perhaps the nearest one can get to a conscious vegetative state) want to stay alive. Contrary to the account in the film, Jean-Dominique Bauby, who authored The Diving Bell and the Butterfly merely by a movement of an eyelid, did not ask for his life to be ended. Just down the road from where we once lived, in Stepping Hill Hospital is a 26-year old mother locked in her body, Michelle Wheatley, who steadfastly wants to live. There is, it seems, a deep-seated instinct to stay alive, and actually to keep alive. We don’t naturally stand and do nothing when someone tries to jump under a train. Something tells us that life is precious. We know it’s good to be alive, even when it’s hard. We value life, rightly."

Who's next? I wonder. The senile who can no longer express themselves at all? Can we afford their care costs? "No doubt they'd rather be dead." I'm sure the Radio 4 programme will have people claiming that ending the lives of deeply comatose patients is only compassionate. But I'm afraid it's not compassion. It's economics, and it's the law of the jungle, the survival of the fittest.  


I reflected on Monday on the irony of Choosing to Die immediately following Springwatch. The latter is presented by jolly, jocular personalities, full of the joys of spring and new life; the former by the saturnine Mr Pratchett, presiding with melancholy solemnity over death. Where's the link? I thought. Then I remembered the pictures of the young buzzards and barn owls who consumed their weaker siblings. "It's the way of things," Chris Packham explains in lugubrious tones. "They have to survive, when their normal food runs short or when the owls can't hunt because of the rain." It's the law of the jungle, but not the law of community. We don't live in the jungle - do we? Individualism brings death; community brings life. And the law of community is love.  

Compassion isn't feeling sorry for someone or yourself;
it's staying with them through their suffering to the very end.

'Happy' in a diving bell

Or "How to diss research for ideological reasons"

Michelle Wheatley in hospital

Yesterday I was interviewed by Edward, a local sixth-former, about my views on euthanasia and terminal illness. It so happened that the morning news had carried an item about research based in Belgium and France about Locked-In Syndrome, that terrible condition often caused by a massive stroke. I wrote about one sufferer in I Choose Everything, young mother of two, Michelle Wheatley, who lived in Offerton, next to Hazel Grove, where we lived for three years. She was in Stepping Hill Hospital for a year, and is now in a nursing home. On her website LIS is explained with clinical detachment: "Locked-in syndrome usually results in quadriplegia and the inability to speak in otherwise cognitively intact individuals. Those with locked-in syndrome may be able to communicate with others through coded messages by blinking or moving their eyes, which are often not affected by the paralysis."Michelle Wheatley's website She is utterly dependent on others for everything. She has just last month convinced Stockport NHS Chief to let her try an intensive course of rehab physiotherapy - but it was a struggle. 


I suppose the most famous example of it was Jean-Dominique Bauby, editor of Elle and author of The Diving Bell and the Butterfly. The other sufferer who's hit the headlines is Tony Nicklinson, who wants the legal right to assisted suicide. He's been like it for 20 years, and understandably tired of the whole thing. He once said to me that while I had a death sentence, he didn't even have that. He was interviewed on the 'Today' Programme about the British Medical Journal Open article on the research. The research was carried out among members of the LIS association of France. It was not commissioned (i.e. by an interested party), and, as all good academic research, it was submitted to external review. If you read the article, you will find it very objective and statistically sound. Its astonishing conclusion was that the majority of the 65 respondents (72%) described themselves as "happy" while the minority (28%) counted themselves "unhappy". They were asked about end of life issues. While 12 of the 16 (75%) "unhappy" had envisaged euthanasia, only 19 (44%)  of the "happy" had ever thought of it, and of the whole sample, both happy and unhappy, only 8% often had suicidal thoughts. In other words, the over-all attitude of people with LIS is much more positive than from the outside we would have imagined.


So how do you dismiss research like that? Well, as far as I could tell, Tony Nicklinson's main criticism was that it was carried out in France, "which is a Catholic country" where they must fear eternal damnation if they commit suicide. I have a feeling that France became a secular state after the Revolution. But even in the research project the proportion who described themselves as religious (which of course covers a multitude of sins!) was a remarkably high 70%. (I wonder why in that group, by the way. Churchgoing isn't 70% in France, from what I've seen.) More remarkably the proportion among the "unhappy"was 81%. In other words "religion" was hardly an escape. As the article puts it: "The happy and unhappy groups did not differ regarding socio-demographic, physical and functional variables including religion, living at home or with a partner, income, education, physical care and feeling comfortable in the company of others. Depression, suicidal ideas, consideration or wish for euthanasia and the wish not to be resuscitated in case of cardiac arrest were significantly more frequent in the unhappy group." I suspect Dignity in Dying (formerly the Voluntary Euthanasia Society), or whoever briefed Mr Nicklinson, conveniently forgot those sentences.


The conclusion the researchers drew was: "Our data stress the need for extra palliative efforts directed at mobility and recreational activities in LIS and the importance of anxiolytic (anxiety relieving) therapy. Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life. End-of-life decisions, including euthanasia, should not be avoided, but a moratorium to allow a steady state to be reached should be proposed." BMJ Open article Locked-In Syndrome


My friend, Louise, who works with a charity for the elderly commented: "Yes: three news items in a very interesting juxtaposition today. One was the thousands of days spent needlessly in hospital by the elderly because of lack of care available outside; the second was the proposal by the regional NHS Chief that patients be given the choice as how they could die, and the third was that even the most severely disabled people would not want to choose to die because most of them were happy." And she asked the disturbing question, "If they were in hospital, would they feel obliged to choose how they should die?"


It's easy to make assumptions that people like Michelle Wheatley are exceptions to the rule. In fact now we know they're not.