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'Let Our Dad Die' - One Family's Fight for Assisted Dying

Posted: 18/06/2012 09:14

Lauren and Beth Nicklinson are clearly much-loved daughters. Their father Tony has a photograph of them hugging that he keeps by his bed, and his eyes come alive when he sees them. The feeling is mutual and they talk fondly of the father who both insist they even liked during their teenage years.

'We were quite lucky, most teenagers don't want their friends round their dad but we were quite happy to bring friends home. Dad was loud and used to get involved and was a good laugh,' Lauren, 24, a public relations account manager, says with affection.

Beth, 23, who is studying for a degree in animal science, would give anything to hear one of his fatherly lectures again. She says sadly, 'I can't remember the sound of his voice. We used to hate his lectures when we were younger, but we kind of miss them now. He'd lecture us about working hard at school and warn us about boys, life preparing stuff.

'He was very involved in our lives and he always encouraged us with our school work. When we were kids, he always played with us or took us swimming. You couldn't fault him as a dad. He was brilliant.'

Their unconditional love is the reason they are supporting his brave court battle that will allow someone to kill him if he wins.

Tony Nicklinson, 58, is a relatively young man but has almost no quality of life. In June 2005, a massive stroke destroyed most of his brain stem leaving him paralysed but mentally alert suffering what is known as 'locked in syndrome'. He can do no more than move his eyes and head. He cannot talk, or feed himself and he communicates by blinking at a perspex letter board or via computer. His mouth hangs open and he dribbles constantly. Tony, who was always an active man, says: 'It's like being buried alive.'

The stroke happened while he was on a business trip to Athens. He had had a mini stroke 18 months earlier that had left him temporarily paralysed down one side. He had said then that he was afraid of not being able to live an active life and that he wouldn't want to live if he couldn't participate fully.

As he lay in intensive care in Athens, Tony's loved ones, wife Jane, a former nurse, and Lauren, told doctors that he wouldn't want to live in his condition, but medical staff made it clear that they could not stop giving him his life-saving medication. He was flown back to the UK in August but by December, the 6'4" former rugby playing, sky diving, engineer, was talking about suicide.

Beth says: 'As soon as he could communicate with us he decided this. The doctors thought he might adapt and he promised he would give it two years which he did, but he still felt the same.'

The family, who had been living in Dubai, moved into a specially adapted bungalow in Melksham, Wilts, in May 2006, and began a new way of life, accepting that the man they knew was gone. Tony however, found life unbearable and by 2007, was asking Jane if she could help him die.

Lauren remembers. 'I was 19 by that time and at university. I got a call from my mum, she was sobbing and she said that dad had asked her to help him die.

'When we were still in Athens, we spoke about it then and it was agreed that dad didn't want to live. He'd had a mini stroke 18 months earlier and had been paralysed down one side but he recovered. He said then that he was afraid of not being able to live an active life and he was frightened of that. He said then that he wouldn't want to live if he couldn't participate fully.
'We tried to get the doctors to take him off all his drugs to see if he would die, but they wouldn't take him off anything.' Tony himself began refusing all life saving medication back in 2007.

Both daughters are aware of the pro-life arguments and sympathise with the view that vulnerable people might be persuaded to end their lives not because they wanted to, but because it would suit relatives or carers. They find it endlessly frustrating that no one will listen to their father's point of view which is that that is not him.

Beth is adamant. 'Dad's of sound mind and he's lived like this for many years. He's a very intelligent man - he built us a computer. No one should be able to tell him that he should keep living if that's not what he wants.'

Lauren says. 'We understand the pro-life campaigners fears and concerns. We aren't campaigning for a massive change in the law that would mean all of a sudden anyone with a slight disability would be offered a lethal injection every time they went for a flu jab. People have said that that's what they think will happen and it's ridiculous, it's scaremongering.

'We're fighting for the right for Dad to die. Everything that we want we want to be regulated and to be strict, it shouldn't be easy. It should be really difficult to make sure that people aren't being coerced, that people are of sound mind and that it is what people want to do, but it should be possible.

'The people who voice those opinions are the ones who can still speak, they can push themselves round in a wheelchair, they have quality of life. That's not Dad. I don't think life should be forced on people if they don't want it.'

Tony himself couldn't be clearer. He says. 'My life has no meaning for me. I simply exist, kept alive because politicians are too cowardly to sort out the mess we have found ourselves in, mainly because of medicine's ability to make us live longer.

'The hearing will determine what sort of death awaits me. If I win, it means a pain free death. If I lose, I am faced with the choice of living until I die of natural causes or starving myself to death. Either option is not particularly inviting. So for me it is literally the difference between an unhappy life or a good death.

'Secondly, I want no one else to suffer the indignities I have had to suffer if they decide this sort of life is not for them.

'If I lose. my solicitor is prepared to take my case all the way to the European Court of Human Rights.'

So on Tuesday, with heavy hearts, the family will ask three judges at the High Court to allow any doctor helping Tony to die, to invoke the rarely used common law defence of 'necessity' against any murder charge. Necessity, was used by doctors seeking to separate conjoined twins Jodie and Mary who were joined at the abdomen. They knew the operation would result in the death of one twin and judges allowed it. The Ministry of Justice however say that in Mr Nicklinson's case, this would be 'crossing the rubicon.'

Currently, the law states that anyone assisting a suicide could receive a prison term of up to 14 years, murder carries a life sentence. The problem for Mr Nicklinson is that he has no terminal disease and although the courts have shown leniency in some assisted suicide cases in the past, they have involved people with terminal illnesses. Mr Nicklinson is also so severely disabled that no one would be able to assist his suicide, he would, to put it bluntly, have to be killed, which could amount to murder.

Lauren says, 'We have discussed mum taking dad to Dignitas or helping him to die here but they're not prepared to take the risk. Mum could face a life sentence in prison. Dad would rather spend 30 years locked in his own body than Mum spend 30 years in a jail cell. He would never let her do that, neither would I and neither would Beth.

'I could possibly cope with losing Dad but I couldn't cope with losing Mum as well.'

There have been cases of mercy killings where the courts have been lenient. Two years ago, Kay Gilderdale was cleared of attempting to murder her 31-year-old daughter Lynn, who had been disabled with ME from the age of 14 and simply wanted to die. Mr Justice Bean, the judge in the case, said the jury showed 'common sense and decency.'

Multiple sclerosis sufferer Debbie Purdy, won a victory in the House of Lords, after arguing that it was a breach of her human rights not to know whether her husband would be prosecuted if he helped her to end her life by taking her to Dignitas, the clinic in Switzerland that helps people to die.

The public are generally supportive and last week, the British Medical Journal published a poll that found 80% of the public support assisted dying.

On Monday, C4 will screen a special Dispatches programme at 8pm, called 'Let Our Dad Die,' in which Mr Nicklinson and his family take part. The programme looks intimately at the arguments from both sides. Most compelling is Mr Nicklinson himself, who allows us to see the full indignity of his life. He says. 'I would remind the judge that this shouldn't be about an arcane interpretation of the law, but it should be about the quality of life for a human, i.e. me.'
Mr Nicklinson's solicitor, Saimo Chahal, who also represented Debbie Purdy, says that they are not asking for legalised murder. 'We are asking that the courts look at this type of case on a case by case basis in the future. The courts would have to consider each case carefully and decide whether to make a declaration in that case.

'It's cruel to expect Mr Nicklinson to live in suspended animation for an indefinite period and the law is outdated and should be changed to accommodate cases like his.

'Modern medicine means that people can survive against all odds but they do not necessarily have any quality of life. It should be for them to decide whether they want to live or die.'
New evidence supporting Mr Nicklinson's plea will come from some surprising sources.

Dr Peter van Hasselt, a doctor from the Netherlands where euthanasia is legal will plead on his behalf, as will Alec Hutchins, a British father whose daughter had progressive multiple sclerosis and was forced to tip herself into a canal from her electric wheelchair to end her life. But most surprising is] Dr Stelios Doris, the Greek neurologist who helped save Mr Nicklinson's life. He now says: 'I wouldn't like for my worst enemy to stay alive in this condition. In a way we owe him. [To be allowed to die]. We made a mistake keeping him alive.'

Labour MP Lord Falconer, the Secretary of State for Justice, who chaired an independent commission on assisted dying disagrees. 'We want to protect people who could be over-persuaded to kill themselves.' Although confusingly he supports the case for assisted suicide but says legalised killing, 'is a step too far.'

Whatever the court's decision, which will take around a month to reach, the family will forever live with the consequences. Beth says. 'The end result will be bitter sweet. I'll either see my dad go when he chooses or I'll see him live like this for God knows how many years, which is also upsetting.'

Lauren adds. 'If he wins I'll be sad but I think I've grieved already. I've grieved for the fact that he wasn't able to drop me off at university, he couldn't come to my graduation, he never came to the pub with me to have a drink. He's never going to walk me down the aisle or teach my kids to play rugby.

'I'm more afraid of him living than dying. If he dies I will grieve but I will be OK after a few years. If we lose then he's going to be like this for the rest of his natural life. That's just too horrible to bear.'

 

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11:03 on 16/07/2012
My grandma was "saved" by doctors after she suffered a stroke, she was paralysed and bedridden for the last 10 long years of her life. She had no quality of life, and suffered depression, indiginities, boredom and bleakness. I don't fear death, but I have a huge fear of old age. In an aging society I think we need to responsibly address these issues. 1 in 4 children born today will live to be over 100 years old. Is this a blessing or a curse? We need to promote discussion of this uncomfortable issue - as this is the uncertain future we ALL face.
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MsBubblyBlonde
Sassy,brassy,kiss my assy.
05:20 on 20/06/2012
If we were to allow an animal to suffer in this way we would be breaking the law.After seeing family die from cancer all I can say it is inhumane and people should be allowed to end their loved one's misery.
14:14 on 19/06/2012
My thoughts a support go to Tony and his family all the way xox
21:52 on 18/06/2012
I refuse to believe that any person could possibly believe that this brave man has no right to have his life ended. Any individual who uses the argument that disabled people can live a full life do not know this man's pain, and never will. I'm sure given the choice none of these people would choose to live a life like Tony's. I wish him all the luck in the world with his fight and I hope one day he can have what he desires. Peace.
14:08 on 19/06/2012
Well said lemonfairydust - everyone is entitled to a dignified end and Mr Nicklinson seems to be completely lucid. Why should policitians or judges play god and say he must continue to 'live' like this, what right have they? I sincerely hope he gets the outcome he wants and obviously needs.
21:04 on 18/06/2012
The definition of 'quality of life' varies for each person granted, that's why each case should be considered carefully.

When it comes to severe disabilities such as this, counselling,drugs, and adjustment time should be part of the process to try every option for quality of life. In the end look who has to live with the condition, it should be the sufferer who decides, it's their life and they are the ones who have to live it.
Tony, if you're reading this I wish you all the luck in world for a peaceful release from your body. Keep fighting even if you hit a wall the first time. Someone has to make a stand for this cause in the Uk , you'll live on as the legend who will help many others in a similar position to you in the future. xx
16:00 on 18/06/2012
The argument against assisted suicide isn't an argument about "crossing a rubicon". It's an argument about the mental health of the person who wants to kill himself and the preceptions of what society thinks is quality of life. Because if Mr Nicklinson wasn't "trapped in his own body" and expressed a desire to kill himself, he would be referred to a mental health professional. People would actually be trying to save his life. But because he has a severe disability, people believe that he can't possible have any quality of life, and therefore he should die. If that is what we, as a society, think about disabled people, then so be it. But it's time we stopped labelling it as compassion.
Makalha
Opinions are not facts.
18:40 on 18/06/2012
It is not people saying he should die , it is him requiring the right . If he was not trapped in his body he wouldn't need to request this . It is he who is saying that the quality of his life is unbearable to him . Would you call it compassion to deny him this right ?
14:09 on 19/06/2012
hear hear Makalha
09:08 on 20/06/2012
You may well be able to cope with being in this condition. You obviously have a very strong mental state of mind. I could not begin to imagine the torment a condition like that would pose to me. I feel that you are failing to consider peoples feelings that differ from yours.The fact that he IS trapped in his own body is the whole point. It is not your brain enduring this horrendous torture day in day out,it is Mr Nicklinsons'. He has had to live this nightmare for years already and still wants the right to end his life. How dare anyone deny him what should be,without question, his right to have assistance to end his life. Anyone who does is, in my opinion, condoning torture.
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Uriella
In the midst of winter I found Invincible Summer
03:01 on 17/08/2012
Beautifully AND powerfully stated.... agree with you 100 percent on this!!
lastpost
see biography
15:36 on 18/06/2012
“No one should be able to tell him that he should keep living if that's not what he wants.”
For the “crime” of blamelessness, society sentences you to “life”.

"all of a sudden anyone with a slight disability would be offered a lethal injection every time they went for a flu jab. People have said that that's what they think will happen."
With such wisdom, let them devise the safeguards needed to prevent this abuse. Rather than inflict abuse on those who freely choose release.

"politicians are too cowardly to sort out the mess we have found ourselves in, mainly because of medicine's ability to make us live longer."
Never mind the quality. Experience the longevity.

"this would be 'crossing the rubicon.' "
If we are afraid of getting our feet wet, how on earth did we get this far? We have wars and famines in which countless are casualties. When we can save all those who wish to continue, incarcerating prisoners of our consciences will be more credible.

"Mr Nicklinson is also so severely disabled that no one would be able to assist his suicide, he would, to put it bluntly, have to be killed,"
mercifully. Rather than an inch at a time.

"the jury showed 'common sense and decency."
Isn’t that the essence of democracy? Why not have a regular multiple question referendum?
14:45 on 18/06/2012
I think in these type of cases, there should be three different doctors who should be allowed to make the decision that a patient should die if that's what they really want. That would stop patients being killed off just because they are old and a burden, or feel that it would be more convenient to everyone if they were dead. My mum died of motor neurone disease, she had no hope of a cure and she suffered the awful death she feared. Why should someone have the right to say that a very ill person should continue to suffer intolerably when that suffering could be put to a dignified end. You wouldn't, quite rightly, let an animal suffer that way.
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vividrick
I came, I saw...I had a cup of tea!
10:56 on 18/06/2012
Heart-wrenching, really feel for the family.