Goodbye world, my time has come: 'Locked-in' man Tony Nicklinson refuses treatment for pneumonia and achieves the death the courts had denied him
- Police are not investigating death of 58-year-old
- Post on Mr Nicklinson's Twitter feed this morning read: 'Goodbye world the time has come, I had some fun'.'
- Death comes a week after High Court battle, in which he said he had been condemned by the law to 'a life of increasing indignity and misery'
- His wife Jayne said: 'I have lost the love of my life but he suffers no more.'
- Mr Nicklinson's daughter pays tribute to her father, tweeting: 'Couldn't have asked for a better dad, you're at peace now.'
- Daughters told how Mr Nicklinson had been 'stripped of his dignity'
- Mr Nicklinson had refused life-sustaining treatment since 2004, and also refused food from last week
Campaigner and victim of ‘locked-in’ syndrome Tony Nicklinson died at home yesterday only a week after losing a High Court battle to allow doctors to end his life without fear of prosecution.
The 58-year-old, who was left ‘heartbroken’ by the decision, died as a result of pneumonia compounded by the fact that he had refused to eat for several days.
His wife Jane and daughters Lauren and Beth were at his side, his family said.
Before he died, Mr Nicklinson had arranged for his family to post a final message on Twitter after he passed away which read: ‘Goodbye world, the time has come. I had some fun.’
His family had suggested that his defeat at the High Court last Thursday had left him with the ‘horrific’ option of starving himself to death.
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Mr Nicklinson, pictured last week after losing his High Court legal battle, died this morning at home in Wiltshire
Yesterday they confirmed he had been refusing to eat while suffering from pneumonia. It is believed the former businessman, who had been profoundly paralysed since 2005, had been diagnosed with pneumonia by a doctor last weekend but no steps were taken to treat him, in accordance with his own wishes made in a living will.
Shortly after Mr Nicklinson died at around 10am, police confirmed they were not investigating the circumstances surrounding the death, despite it coming so soon after his appeal for help to end his life.
It is understood a doctor known to the Nicklinson family visited their detached bungalow in Melksham, Wiltshire, and signed a death certificate describing the cause of death.
In such circumstances, if the coroner is satisfied with the doctor’s opinion then there is no requirement for the police to investigate.
Announcing their father’s death, one of Mr Nicklinson’s two daughters wrote on his Twitter page, which has almost 50,000 followers: ‘You may already know, my dad died peacefully this morning of natural causes.
‘Before he died he asked us to tweet, “Goodbye world, the time has come. I had some fun”.’
Final message: This poignant tweet was posted on Mr Nicklinson's profile this morning, hours before news of his death emerged
Support: Mr Nicklinson's family posted this message soon after the 58-year-old's death
Harrowing: The pain clear to see, Tony Nicklinson breaks down in tears last week after being told that he will not be granted the right to die
Heartache: Mr Nicklinson cries at the computer he used to speak through. He was once an active man but became incapable of even basic tasks after his stroke
THE RIGHT TO TURN DOWN MEDICAL HELP
The death of Tony Nicklinson raises fresh questions about the situations in which doctors can withhold treatment from those they know to be desperately ill.
If, as it is believed, a doctor had diagnosed Mr Nicklinson with pneumonia at the weekend he, as the patient, would have had the right to instruct that he did not want treatment.
He is also understood to have prepared an advance directive, or living will, which said he should not be given life-preserving treatment if for any reason he was incapacitated and unable to give instructions himself.
Doctors are obliged to follow the terms of advance directives under the 2005 Mental Capacity Act.
His death also raises concerns about the way deaths are registered. Police said they will not get involved because a doctor has signed a death certificate, and Wiltshire coroner David Ridley indicated he will not intervene or call for a post-mortem or an inquest for the same reason.
The system by which death certificates issued by GPs can go unchallenged is in the process of being reformed.
From 2014, specially appointed medical examiners will double check all death certificates issued by GPs and interview families about the circumstances.
Mr Nicklinson’s death may therefore go without public examination.
Jane Nicklinson, 56, a former nurse, added on her own Twitter site: ‘I have lost the love of my life but he suffers no more.’
The couple’s elder daughter Lauren, 24, posted: ‘Dad, you are finally at peace. Beth and I are so proud to be your daughters – we got our strength from you. I love you xxx.’
Her sister Beth, 22, wrote: ‘RIP @TonyNicklinson. Couldn’t have asked for a better dad, so strong. You are now at peace, we will be fine. I love you xxx.’
Lauren had said last week that the family would keep fighting to allow her father to die ‘a pain-free and peaceful death’.
‘The alternative is starvation,’ she said. ‘Why should he have to starve himself to death when he could go [to die] in a safe home with people that love him?
‘To think that he might have to waste away and starve himself to death is horrific and it makes me feel quite ill, to be honest.’
Mr Nicklinson’s refusal to eat is likely to have reduced his body’s ability to fight the effects of pneumonia, which is a common cause of death among those whose illnesses make them particularly fragile.
He may have also refused to accept medication for the illness.
Yesterday his lawyer, Saimo Chahal, said in a statement: ‘Jane told me that Tony went rapidly downhill over last weekend, having contracted pneumonia. He had made an Advance Directive in 2004 refusing any life-sustaining treatment and also refused food from last week.’
She added that Mrs Nicklinson had said that after the legal decision last week ‘the fight seemed to go out of him’. Her husband had announced afterwards: ‘So, we lost. In truth I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.’
Mr Nicklinson, who was paralysed after suffering a stroke during a business trip to Athens in 2005, had wept last Thursday when his High Court bid to win the right to be helped to die failed.
Tony Nicklinson, 'locked-in syndrome' sufferer at home in Melksham, Wiltshire, and right, with daughter Beth in 1989
Mr Nicklinson, with his wife Jane, at their adapted home. He had said he would appeal the ruling that doctors cannot help him to end his life
He described life as ‘dull, miserable, demeaning, undignified and intolerable’.
Yesterday a petition to change the
law in assisted dying, called ‘Tony Nicklinson’s Right to Die: Change
the Law’, had more than 22,000 signatures.
A spokesman for the Wiltshire coroner confirmed there would not be an inquest into his death because a doctor had already issued a death certificate with a cause of death.
A police spokesman said: ‘His death certificate has been signed by a doctor, so it is not a matter for Wiltshire Police or the coroner.’
Mr Nicklinson shares a rare moment of laughter with Jane. He wanted to die at home surrounded by his friends and family rather than thousands of miles away at a legal clinic
Campaign: Mr Nicklinson made legal history when his right to die case was the first to be given a full hearing in a British court
Last night lawyers representing another locked-in syndrome sufferer, who lost his High Court action on the same day as Mr Nicklinson, said they would appeal against the decision.
The 47-year-old, who cannot be identified for legal reasons but is referred to as ‘Martin’, had a massive stroke in 2008. He is unable to speak and virtually unable to move.
He said in statement: ‘I am relieved for Tony and offer my condolences to his family for the man they’ll miss. I hope that I too can be set free from this existence but I would like it to be in the manner of my choosing.’
He gave an elemental howl of pain...and the fight seemed to go out of him
BY TOM RAWSTORNE
Last week, for that one, fleeting moment, Tony Nicklinson’s inability to speak was no barrier to communication. For words alone could not do justice to the despair the 58-year-old felt when he learned on Thursday that he had lost his legal battle for the right to die.
Sitting at home, strapped in to a specially adapted wheelchair, he let out a howl of pain that was so elemental, it was almost unbearable to watch.
As his wife Jane dried the tears that coursed down his face, her observation that the decision had left him ‘absolutely heartbroken’ was, the world now knows, no empty cliche.
LOCKED-IN SYNDROME: THE FACTS
● People with locked-in syndrome are usually completely paralysed, and are unable to speak or move. However, sufferers can generally move their eyes.
Patients can communicate by blinking or using special eye movement
technology to interact using computers. Software converts his eye
movement into the letters of the alphabet and in turn into words and
● People with locked-in syndrome are conscious and can think and reason.
The disorder can follow a traumatic brain injury, such as a massive
stroke. It can also be caused by diseases of the circulatory system,
damage to nerve cells or medication overdose.
Although there is no cure, therapy such as functional neuromuscular
stimulation can sometimes benefit victims by activating some of the
● The biggest survey of people with the condition, published last year, found that the majority of them are happy.
The longer somebody has had locked-in syndrome, the more likely they
are to report happiness - suggesting they adapt to life with the
condition, according to the research based on members of the French
Association for Locked-in Syndrome.
● The data found that only 7% desired euthanasia and most (68%) of the total sample never had suicidal thoughts.
Ever since the day seven years ago that he suffered a catastrophic stroke that left him unable to speak or to move anything apart from his head and eyes, Mrs Nicklinson had tended to her husband’s every need.
So she instinctively knew that something, deep inside, changed when he learned that three judges at the High Court had rejected his plea to be able to end his life as and when he wished.
From that moment on, she would observe, ‘the fight seemed to go out of him’.
But even so, the end came far quicker than anyone could have imagined.
After the court’s ruling, his daughter Lauren told how her father would appeal and, if that failed, was considering starving himself to death.
Could she stand by and watch that happen, she was asked? ‘If that is what he wants I will do it and so will my sister and mum,’ she said. ‘He would rather have three months of the physical and mental anguish of starving himself than 30 years living locked-in.’
But, she was pressed, wouldn’t she rather have him alive than dead?
‘Not necessarily, no,’ she replied. ‘Because it is so unbelievably painful to see someone you love so much hurt every single day and be able to do nothing about it.
‘Without doubt it will be horrific but we will be OK. But for dad to face another 30 years like this – that is just not acceptable.’
What is clear now is that even as she spoke those words last Thursday night, her father had already begun to starve himself. Death, however, would take just one week to come.
Weakened, no doubt, by the lack of food, Tony succumbed to pneumonia.
In a ‘living will’ prepared in 2004, he had stated that he wanted to receive no life-sustaining medical treatment in such circumstances. So, at 10am yesterday, he passed away. Jane, Lauren, his other daughter Beth and his sister Ginny were by his side.
On the walls of the suburban bungalow in Melksham, Wiltshire, where he breathed his last, hang the pictures of Mr Nicklinson with his two daughters as toddlers, him tanned and bare-chested, a 6ft 4in tall, ruggedly handsome man grinning at the camera.
There are the photos of him from his rugby-playing days, aboard a quad bike, and sky-diving through the air.
All his life – pre-stroke – Mr Nicklinson had been something of an adrenaline junkie, a hands-on, fearless type of guy, attributes that defined him as both a husband and a father. They were also attributes whose absence would be all the harder to bear.
He and Jane, now 56, met on a blind date in Dubai in 1984. She was a nurse from Dorset and Tony, from Kent, was a civil engineer.
They went to a Dionne Warwick concert. ‘Sounds really corny, but it was quite literally love at first sight,’ Jane would recall. ‘He was tall, dark, handsome, very outgoing and a real laugh.’
The couple would spend their married life living as expats in the Middle East, Hong Kong and Malaysia.
Doting dad: Mr Nicklinson, pictured with his two daughters and wife on New Year's Eve 2004, was described as fit and healthy before his catastrophic stroke
In a sign of how active he once was, Mr Nicklinson rides a quad bike on holiday in Thailand in 2004 the year before his stoke. Right, with daughter Lauren on a holiday in France in 1991
But then, in 2005, on a business trip to Athens, Mr Nicklinson suffered a stroke.
Summoned to his bedside, his wife was
told that it had been so severe he would be left with locked-in
syndrome. When he eventually woke up, Mrs Nicklinson suggested they try
to communicate by him blinking.
‘A bit of me hoped he wouldn’t understand,’ she said. ‘I knew from the word go that he’d want to end his life.’
That is something Mr Nicklinson
himself only too readily admitted. His biggest regret, he said, was
summoning help at the hotel when he collapsed.
‘If I knew then what I know now, I
would have let nature take its course,’ he said. The family moved back
to Britain, settling in Wiltshire, and adopting a life that could hardly
have been more different from what went before.
Aided by carers, Mr Nicklinson’s day
would begin with him being lifted from his bed in a hoist and placed in a
wheelchair. There he would spend hours watching television.
Communication was via a computer, operated by blinking. He could also ‘speak’ with his wife, spelling out words letter by letter by winking at a letter board.
His daughters revealed that they now saw their father ‘as two different people’.
‘The dad before all this was amazing,’ Lauren said. ‘Really loud, really hands-on and he was a fantastic dad.
‘Now we don’t have a relationship with him. I can’t remember what my dad sounds like. I haven’t heard his voice in seven years.
‘Dad hasn’t got a life – his life consists of being washed by strangers, undignified moments watching the world go by around him. Life should be about quality and happiness, not just for the sake of it.’
And so it was that in 2010 he went to the High Court to argue that if and when he decided he wanted to die, any doctor that helped him should be immune from prosecution.
Family man: Mr Nicklinson with his wife and two daughters in the garden of his family home in the 1990s before the tragedy
QUESTIONS ABOUT CHANGE IN LAW
Professor Penney Lewis, professor of law at the Centre of Medical Law and Ethics at King's College London, said yesterday that Mr Nicklinson's plight would continue to raise questions about a change in the law, after being denied the right to die by High Court judges last week in a landmark ruling.
But she said Parliamentarians seemed 'disinclined' to address them.
Prof Lewis added: 'He was directly challenging the law. I think he has quite a significant role in the history of legal challenges in this context.
'There have been very high-profile (right-to-die) campaigns, and Parliament seems disinclined to resolve them.
'There is a lot of speculation about why that is, and I think one reason almost certainly is that it is a divisive issue.
'If you're a parliamentarian in the House of Commons you have to think about when you are going to be standing for re-election, and taking a stand on such a divisive issue might well cost some votes.'
Because of the extent of his disability, Mr Nicklinson would have not only been unable to procure the medication needed to kill himself, but would have needed someone to actually place it in his mouth.
He was arguing not just for the right
to die, but for the right for someone else to kill him. Last week the
High Court ruled that while Mr Nicklinson’s situation was ‘deeply
moving’, allowing his claim would have consequences far wider than his
Such a far-reaching decision should be taken by Parliament, the judges said.
Mr Nicklinson’s tearful reaction to the shattering news was caught by the cameras. Shortly after, he explained what it meant to him: ‘I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.’
And so, it seems, he decided to begin starving himself to death. Any other option would, he feared, mean anyone who helped him could be prosecuted.
As such he had ruled out going to the Dignitas clinic in Switzerland and had insisted his wife have no hand in it.
Even so, she has admitted it had often crossed her mind: ‘It would be fairly easy to do. I do admire people who have done it, but I’m too much of a coward. I’m really not prepared to spend the rest of my life behind bars.’
Instead she chose the legal route and
the plan was to appeal to the Supreme Court against last week’s
setback. But with Mr Nicklinson’s death yesterday that cannot now
No doubt the campaign to change the law will continue. But for now the Nicklinson family’s priority is to grieve for a husband and father who has twice been lost to them.
'TO SEE DAD BREAK DOWN LIKE THAT...WAS HEARTBREAKING'
In a magazine interview published this week, Mr Nicklinson's daughter Lauren, 23, said her father 'seriously considered' starving himself after the High Court verdict.
She told Grazia: 'If you dehydrate yourself, you might die in a few days. If you starve yourself - which is possibly a little more humane - it could take months.
'It's not fair on him to have to go through that, or the lasting memories that Beth and I have of our dad to be of him hallucinating and writhing in pain in his bed until be eventually slips into a comatose state and dies.
'It makes me angry that this is the reality he's now facing, but if we won, then he'd be at peace, able to die with his family around him.'
The landmark legal battle was the first time a right-to-die case had been granted a full hearing in a British court.
Last week following the legal ruling, Mr Nicklinson's wife, Jane - standing by her weeping husband's side - had described the decision as 'one-sided'.
She said: 'You can see from Tony's reaction he's absolutely heartbroken.'
They said they intended to appeal against the decision.
Describing the moment her father lost his High Court appeal, Lauren added: 'To see Dad break down like that when the judgement was announced - that a doctor won't be able to help him die without fear of prosecution - was heartbreaking.
'To look at his face, you might think he was having his legs sawn off. But it's the emotional pain he experiences every single day. It's excruciating - for him and for us.
'Initially, Dad said he just wanted to know that, when the time was right, he would be able to make the decision to die.
'He didn't want to leave us right away. Now, he says if he won tomorrow, he would want to die tomorrow.'
Lauren rejected the argument of pro-life campaigners, saying that her father had a life only in the biological sense of the word.
'Life should not be measured on the quantity, it should be the quality of life,' she said.
'Dad would rather live 51 years really happy than 90 years completely miserable.
'Dad hasn't got a life - his life consists of being washed by strangers, undignified moments watching the world go by around him.
'Life should be about quality and happiness, not just for the sake of it.'
Healthy: Mr Nicklinson before the devastating stroke he suffered in Athens in 2005 which has caused him to live a life of 'torture'
TIMELINE OF TRAGEDY: HOW TONY NICKLINSON'S LEGAL BATTLE UNFOLDED
June 24 2005 - Mr Nicklinson suffers a stroke while working for a Greek civil engineering company based in the United Arab Emirates (UAE). At the time he was vice-chairman of the Arabian Gulf Rugby Football Union and was described as an outgoing and confident person with a busy and active social and family life.
The stroke came as the result of an undiagnosed heart problem and left him in a critical condition in an Athens hospital for two months. He remains mentally sound but cannot speak and can only communicate through a perspex board or by blinking.
December 2007 - After two years spent in various hospitals across the country, Mr Nicklinson is finally reunited with his family.
February 2010 - Keir Starmer, director of public prosecutions, publishes new guidelines on assisted suicide. The new guidelines put greater emphasis on the motivation of the suspect; meaning cases against those who act with compassion are unlikely to be pursued
July 2010 - Mr Nicklinson's solicitor issues proceedings in the High Court seeking a Judicial Review from the Director of Public Prosecutions.
His legal team say they want guidance on whether it is always in the public interest to prosecute for murder in cases of 'consensual killing'.
March 2012 - In a landmark legal ruling, a High Court judge allows Mr Nicklinson's case to be heard in court, including medical evidence.
The judge had been asked to decide on a preliminary 'strike out' application in the case made by the Ministry of Justice.
June 15 2012 - A TV documentary shows Mr Nicklinson using eye movement technology to send his first ever Twitter message.
He wrote the message: "Hello world. I am tony nicklinson, I have locked-in syndrome and this is my first ever tweet. £tony."
After being on the website for less than 24 hours, he had almost 2,500 followers.
June 18 2012 - Days after joining the social network and having amassed thousands of followers already, an empassioned Twitter campaign begs Mr Nicklinson to change his mind ahead of his court appearance.
June 20 2012 - Mr Nicklinson has his case heard in the High Court, where he descibes his life as 'dull, miserable, demeaning, undignified and intolerable' in challenging the law on murder. He also tells the court he has wanted to end his life since 2007 and that it is no 'passing whim'.
June 21 - The High Court hears of the plight of a second locked-in syndrome sufferer, known only as 'Martin', who also wants to end his life but can only do it with the help of another.
August 12 2012 - Mr Nicklinson receives a draft version of the High Court judgment refusing his right to die, at which point, according to his solicitor, 'the fight seemed to go out of him'. Two days later he tells his barrister he is 'crestfallen, totally devastated and very frightened'.
August 16 - The High Court officially announce their decision. Mr Nicklinson tells how he 'could not understand how the legal argument on his behalf could not succeed.'
August 22 - Six days after the judgment and having refused food for a week, Mr Nicklinson dies at his home in Wiltshire after contracting pneumonia.
VIDEO: Nicklinson family solicitor speaks after the family announces Tony has died...
VIDEO: Tony's reaction to the High Court ruling...