Dad died of broken heart because judges wouldn't let him die with dignity: He was the 'locked-in' victim whose right to die battle divided Britain. Now his family talk for the first time
Tony Nicklinson was denied permission to ask a doctor to end his life
Within a week he passed away following a debilitating bout of pneumoniaWidow Jane, 56 and daughters Lauren, 25, and Beth, 23, remember his fight
10:35 GMT, 12 September 2012
Agonised: Locked-in victim Tony Nicklinson's heart rending reaction to the court ruling that he could not die by assisted suicide
After months of trying to shield her younger sister from the truth, Lauren Nicklinson knew the time had come to be honest. She sat Beth down and quietly said: ‘You know Dad is going to want to die, don’t you’
They were, of course, difficult words for Beth — then a teenager — to hear. But she understood exactly what Lauren was saying.
In fact, their father Tony, who’d been paralysed by a stroke so severe it left him ‘locked’ inside his own body and able to communicate only by blinking, was so desperate to die he eventually applied to the courts to let that happen.
Quite simply, their dad could not bear what his life had become.
Tony was memorably denied the right to die with dignity by the High Court last month — who can forget his agonised howl on hearing the news
But within a week, aged 58, he had passed away from natural causes. A debilitating bout of pneumonia provided the end the law would not.
His death, on August 22, has left his widow Jane, 56, Lauren, 25, and student Beth, 23, with desperately bittersweet emotions.
There is relief that the man who had
been begging to die for years finally got what he wanted, if not in the
way he wanted it; that his torment — in their opinion, there is no other
word for it — is over.
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So proud: Daughters Beth, left, and Lauren, centre, and Widow Jane Nicklinson, right, are proud of the way their father never stopped fighting
there is, of course, enormous grief for the father and husband they
have lost — both the vital, handsome man who showed them the world, and
the physically-broken but courageous campaigner he became after his
feel relief that he’s not suffering any more,’ says Lauren. ‘That he’s
at peace. But, of course, part of us still wants him here.’
Beth, alongside her, agrees. ‘We all miss him,’ she says. ‘But we all know it would have been selfish to ask him to stay.’
sentiment is typical of the Nicklinson family, a close-knit clan whose
pragmatism and complete lack of self-pity are astounding.
feel relief that he’s not suffering any more. That he’s
at peace. But, of course, part of us still wants him here.’
are not prone to sentimentality. As Beth explains, they’re not the sort
of family who had to spell out their affections.
‘Dad knew how we felt
about him; we didn’t have to tell him every day,’ she says.
Yet the reality is that the dad they adored will now never see them marry and start a family. They are milestones, both say, that they can hardly bear to think about.
‘Beth and I had to come to terms with Dad not walking us down the aisle after he got ill, but, of course, it does catch you from time to time when you’re reminded that will never happen,’ says Lauren. ‘For now, we are very much taking one day at a time.’
The father they remember before the stroke was a vital man, a rugby-playing daredevil who was fun to be around but no-nonsense in his parenting.
‘He believed that you had to make your own mistakes, so he let us get on with it,’ says Lauren. ‘But if he thought we’d gone too far, he’d come down on us like a ton of bricks.’
Family man: Beth and Lauren with the father they adored
Most of all, though, he was fun. ‘He
loved telling stupid jokes, particularly ones that would embarrass us in
front of prospective boyfriends. That was just his sense of humour,’
and I talk about him as two different people really. We’ll say: “Dad
would have loved that”, and by that we mean the old Dad. We don’t do it
intentionally, but there was the man before and the man he became.’
doctors were up-front from the start, that he was locked-in and would
never get better. My first thought was: “Let him die. He
wouldn’t want to live like this.”'
The events that led the Nicklinsons here have been well-documented, but are no less harrowing for it.
In June 2005, Tony, suffered a catastrophic stroke while on a business trip to Athens. He was 51. He’d been a fit, adventurous man whose job as a civil engineering consultant had taken his family around the world and finally to Dubai, where they’d settled happily into expat life.
In an instant, that changed: the stroke left Tony entirely paralysed, yet with full brain function, effectively buried alive in his own body, marking the end of life as he and his family knew it.
In the wake of her husband’s stroke, Jane left Dubai for Greece with a small overnight bag and never went back. Lauren followed within days to support her, while Beth, then 16, stayed at home in the
Middle East in the care of family, unaware of the true nature of the tragedy. ‘Mum and Lauren were trying to protect me,’ she says.
Happy couple: Tony with bride Jane on their wedding day in Gillingham, North Dorset in 1986
From the first devastating moment she saw her husband on a ventilator, Jane knew what he would be thinking.
doctors were up-front from the start, that he was locked-in and would
never get better,’ she says. ‘My first thought was: “Let him die. He
wouldn’t want to live like this.”
‘At the same time I understood that they couldn’t.’
Lauren, only 18, and traumatised, nonetheless tried to focus on the positive. ‘I noticed Dad was blinking on demand for the nurses, so I suggested we ask him to blink once for yes and twice for no,’ she recalls.
‘I churned it over in my mind for a while before I asked, though. I worried he would understand, but wouldn’t be able to do it and it would make him even more upset. When he could, it was a funny feeling. It meant we could talk to him, but also that he understood what had happened.’
The blinking quickly evolved into a full, if painstaking, communication system: using an alphabet board, on which Tony could rest his gaze on individual letters, he could soon blink out full sentences.
‘The first thing he blinked out was “I want a beer”,’ says Jane. ‘Typical of Dad,’ smiles Lauren. Yet both knew instinctively his life now was anathema to him. ‘We used to talk for hours to him, sitting in the hospital,’ says Lauren. ‘But still we felt utterly helpless.’
Jane believes it had taken a while for her husband to understand the reality of his plight, especially since, early on, he had asked her to write a letter to his boss telling him he would be back once he’d recovered.
But by December 2005, six months after the stroke, and by now hospitalised in the UK, Tony fully understood the life he would be facing.
Fed through a tube into his stomach, and able to move only his head and eyes, his long days were spent in bed or, on occasion, a specially adapted wheelchair.
‘Dad hated it,’ says Lauren. ‘He didn’t see the point of being taken out into a world he felt he didn’t belong to.’
It is against this backdrop that, six months after his stroke, Tony first asked to die. ‘We were about to have our monthly meeting with his consultant and before I went in he blinked out “I want you to help me to die”,’ recalls Jane.
The family together on New Years Eve 2004. In June 2005, Tony suffered a catastrophic stroke while on a business trip to Athens
‘I wasn’t surprised, but it was upsetting, knowing how trapped he felt. I had to tell the doctors and they said it was important he gave himself time to work out how he felt. So we sat down as a family and he agreed that he would give it two years.’
Beth had had time to come to terms with her father’s plight, having stayed in Dubai for the first two months after the stroke. Lauren had visited her in Dubai to explain that although their father had returned to the UK, he was not the man they remembered — and never would be again.
Having shielded Beth from the full truth for several weeks, she knew she had to be gentle with her before they flew home to rejoin their parents.
‘I felt protective, but she needed to know the truth,’ says Lauren. ‘It was hard to take in,’ Beth says quietly. ‘You don’t want him to suffer, but you don’t want to lose him.’
Both say they understood instinctively their father would not want the life he had, but they wanted to be sure there was no chance he could improve, or learn to adapt.
‘And he did what we asked of him,’ says Lauren. ‘After that first conversation, he didn’t mention dying again.’ Her eyes fill with tears. ‘He really did try.’
/09/11/article-2201872-14B834EC000005DC-126_634x423.jpg” width=”634″ height=”423″ alt=”Tony being cared for by Jane at their home in Melksham. He was fed through a tube into his stomach, and able to move only his head and eyes, his long days were spent in bed or, on occasion, a specially adapted wheelchair” class=”blkBorder” />
Tony being cared for by Jane at their home in Melksham. He was fed through a tube into his stomach, and able to move only his head and eyes, his long days were spent in bed or, on occasion, a specially adapted wheelchair
'The worst thing for Tony was not being able to talk. He always said that if he could have talked, things might have been different.’
Once settled at their specially adapted bungalow in Melksham, Wiltshire, Tony and Jane started to look into options — which were, they quickly discovered, limited.
‘It was basically go to Dignitas, or starve himself,’ says Jane. ‘Neither appealed. He didn’t see why he should have to die in the middle of a Swiss industrial estate, and he didn’t want to starve to death, which would have been incredibly painful for him and painful for us to watch.’
It was his simple, but ethically fraught belief that he should be able to choose to die at home, surrounded by his family, that took Tony to court in 2010 to argue for a change in the law. A doctor should be allowed to kill him, without fear of prosecution, he said.
His daughters fully supported him.
‘Dad wasn’t a man to cling to “what-ifs”. He was a man of facts,’ says Lauren. ‘He knew he wasn’t going to get better, and he wasn’t prepared to hang around for years to see if technology would progress, and we completely understood that.’
Of course, not everyone shared their views. But the Nicklinsons’ response to the pro-life lobby was — and remains — unwavering. ‘Most people couldn’t live an hour like Dad. But that was his entire life, day in, day out,’ says Lauren.
‘It did use to make me angry. I would think: “Who are you to say what his life should be like” ’
Her mother’s frustrations are
reserved for those who would write to her and suggest that, had Tony’s
palliative care been better, he wouldn’t have wished himself away.
would say: “Why don’t you take him on a trip, or to the pub” But we
tried all that and he hated it,’ she says. ‘He hated going out, he got
no pleasure from doing the things he used to do. It was a reminder of
everything he’d lost.
‘To him, what he had wasn’t a life. Other people in his position might feel differently. But he didn’t.’
Anger: Tony Nicklinson communicates with Jane using a letter board after the High Court decision not to allow him to ask a doctor to end his life
Distress: According to Lauren the decision left her father feeling ignored, fobbed off and abandoned
Tony’s illness also meant the most enormous loss of freedom for Jane, his main carer. ‘Beth and I still got to live our lives — I went to university, Beth has been at college,’ says Lauren. ‘But Mum was just here. She was as trapped as Dad was.’
In recent months Tony’s condition worsened. ‘He could see a point where he would have to be fed by a tube again. Although he didn’t enjoy eating much, it was his last connection to a normal life,’ says Lauren.
Against this backdrop, the High Court judgment took on an even greater urgency. Yet when it was handed down, the message from the presiding judges was stark: medical professionals could not help Tony Nicklinson end his life because such a far-reaching ruling was a matter for Parliament, not a court of law.
The Nicklinsons’ anger remains palpable. ‘He already felt like a second-class citizen, and the judgment just reinforced that,’ says Lauren. ‘He felt utterly ignored, fobbed off, abandoned.’
‘I think the depth of his feeling surprised even him,’ says Jane.
Pursuing the case to the Supreme Court, his last recourse, would take 18 months — a battle he simply couldn’t face.
‘He was very down,’ she recalls. ‘He said to me: “The fight’s gone, there’s no more fight left.” I chivvied him on, but by the Saturday I noticed his breathing had become more laboured.’
On the Monday, she called the
doctor. ‘When he listened to Tony’s lungs, he couldn’t hear one of them
at all. He made it clear that Tony needed antibiotics, that without
them, he would die.’
pauses. ‘I think Tony saw his chance. He said: “That’s it, no more.” He
didn’t want to take the drugs. Later that day he said: “I am already
dead, don’t mourn for me.”’
Too much: Pursuing the case to the Supreme Court, his last recourse, would take 18 months – a battle Tony simply couldn't face
The end, when it came, was relatively swift: by Tuesday lunchtime, Tony was unconscious. It was during this time that they all said their goodbyes, although Beth, the quieter daughter, was unable to face it.
‘I had to get Lauren to say my goodbye for me. I couldn’t do it,’ she says, her voice catching.
Tony ‘slipped away’, surrounded by family, as he wanted. However, his family also believe that, whatever it may say on his death certificate, grief not pneumonia killed him.
‘He died of a broken heart,’ says Jane. ‘What happened with the court judgment broke both his body and his spirit.’
The funeral, held just over a week ago at a local crematorium, was a simple and non-religious affair.
‘We’d never planned his funeral, which is funny in a way — the focus was on his actual death, not what would happen afterwards,’ says Jane. ‘But his view was always that “once you’re dead, you’re dead” — he was totally unsentimental about it.
‘So it was a celebration of his life, with a big party afterwards, which Tony would have loved.’
Now, of course, the Nicklinsons must live with his permanent absence, something they try not to contemplate. They haven’t been able to face clearing out his room.
‘When Tony had the stroke, we grieved for him then,’ says Jane. ‘In some ways that was harder. But the emotions are still raw.’
Most of all, though, they are proud of him. ‘He never stopped fighting, even though it took all he had,’ says Lauren.
Tony on his 50th birthday: 'He loved telling stupid jokes, particularly ones that would embarrass us in front of prospective boyfriends. That was just his sense of humour,' said Lauren
VIDEO: Tony's widow Jane tells Daybreak about what a struggle it has been for the family