Up until his death in August 2012, Jane Nicklinson had been her husband’s advocate in his unsuccessful right-to-die battle with the High Court. Resolving to continue his legacy, she is now back in court appealing the decision. I interviewed Jane about her continuing fight and her life with Tony.

JUST months after losing her husband, Jane Nicklinson  is slowly adjusting to  the shock of being alone for the first time, and also a freedom of sorts. A loving, devoted wife, she had cared full  time for Tony after he suffered a massive stroke ten years ago which left him paralysed and unable to speak.

Finally, relieved with the knowledge that he is  no longer suffering she is tentatively discovering what it is like to live life for herself again. Following the stroke, Tony’s existence had became an unending loop of mind-numbing boredom and frustration, which Jane has shared the burden of.

“Carers would arrive at 8.30am to shower, dress, shave him. They would put him on an exercise bike for 20 minutes. I would then go in and set his computer up for him. He would stay on the computer till 4pm when carers would come to move him from his wheelchair to an armchair. 6pm I would give him his tea.

“He would then watch TV till 10.30 when a carer would come.  I would put Tony to bed with the night carer and Tony would watch TV till about midnight.  A carer would stay all night to answer his pager when he needed anything like an arm moving, dribble drying, an itch scratching etc.

At 7am I would get up, check on Tony, and the carer would leave.  I would give Tony a drink and at 8.30 the carers would arrive again and the same old routine would start all over again.”

Tony had a condition called  locked-in syndrome, which paralyses almost all voluntary muscles in the body.  90 per cent of patients die within the first few months, and only in rare cases is there a full recovery.  Tony was told he may live for 30 years like this; to a voracious talker with a passion for playing rugby and thrill-seeking outdoor pursuits this was a frightening prognosis.  It also meant moving back to the UK.

Tony had been a successful  businessman, a civil engineer who had travelled the world and built a comfortable life for his wife and two daughters in Dubai, where he had first met Jane.

His predicament was captured in the affecting Channel 4 Dispatches documentary -”Please, Let My Dad Die”.  Tony could only  communicate with his eyes which he would  direct towards letters on a board, painstakingly spelling out words for Jane to interpret.  He also relied on his eyes to use a computer, installed with sophisticated Eyegaze software, his sole leisure pursuit.

Tony’s Twitter page, still live and managed by his family reveal him to have been a tenacious,  charismatic man with  a sharp sense of humour.   Over time, the paralysis whittled away Tony’s  spirit, dramatically affecting  his personality.

“After the stroke Tony was a very different person. He rarely joked or even laughed at jokes. Pre-stroke he was very sociable but following the stroke he would not see friends. He found it too painful not to be able to interact.”

This must have had an impact on the couple. “Our relationship was very different after the stroke. There was little intimacy any more. I changed from being a loving wife into being a carer. I had to do things to Tony that no man would want his wife to have to do for him. He was the love of my life and I would do anything for him but it was very hard for us both.”

Choosing to end one’s life prematurely might seem like a bleak prospect, but for Tony it promised only relief from  physical discomfort, boredom and despair, in spite of the love and support  of his wife and daughters. He could escape the mental anguish of his life and die with dignity, on his terms.

The only hitch was he needed someone to help him to die, since he would not be able to administer lethal drugs himself e.g. by ingestion or injection.  Jane, understandably did not want to be the one to do this. Tony needed a doctor.

Voluntary euthanasia, as it is known, is currently legal in the Netherlands, Switzerland and Luxemburg, but it is not legal in the UK.   Tony had no choice but to go to court to ask permission to die.  He  sought two declarations from the court: that current UK law prohibiting him from ending his life was an infringement of his rights according to Article Eight of the European Human Rights Charter, which guarantees the right to private and family life; and the assurance that the doctor who helped him to die would not be prosecuted.

It was the  first case of its kind to be heard in England and Wales by the High Court because it challenged the law for murder, going further than preceding right-to-die legal cases. The High Court inevitably ruled against Tony, with three judges deciding that no human rights laws were being breached and it was a matter for Parliament, not court.  Though Tony died before he could appeal, Jane made the brave decision to  continue the case.

“My first reaction was to say no, I have had enough, but the more I thought about it the more I realised that I had to try to continue.  So much work had gone into the case. It was never just about Tony but about others who find themselves in a similar situation so I agreed to carry on if I was able.  Also, I know that Tony would want me to carry on.”

There’s no doubt that public support for Tony’s plight was overwhelming. He had almost 45,000 Twitter followers.”

Paul Lamb, 58, a paraplegic, has recently come forward and  joined the legal case to ask for the right to die, taking over from Tony.

So what can people can do to support the case?

“We started the petition and I have kept it going. It continues to gather signatures. Once the case hots up again I am sure it will gather more. Writing to MPs may also help.”

The most contentious aspect of the case is that if won, it would bring about a change in the law  that would make it legal to help people with certain disabilities to die.  Arguably this is already happening.  Doctors remove life support from patients who are physically alive, but not conscious – without their consent.

The Nicklinson case, in contrast is asking that a person be allowed to be helped to die, with their full consent. The British Humanists Association has come forward to offer support, however Jane tells me she faces some formidable opposition from religious groups, some doctors and disabled rights groups. Detractors  warn of a future where vulnerable disabled people might be persuaded to commit suicide.

“Abortion was a taboo subject once. I think that if euthanasia was legalised under strict guidelines in time it will be accepted just as abortion has. Abortion, euthanasia, assisted suicide will never be acceptable for some. Just because they do not agree with it does not mean that everyone should be denied the right.”

 

Tony and Jane before he suffered his stroke.

Jane now faces the daunting  prospect of starting life over again:  “The thought of life now is frightening as I need to get out there and get a life. I have not had a paying job for about 25 years so this fills me with dread.”

Jane has had a remarkable journey and the extraordinary legal case of a man fighting for control over his own death is a story many would be interested to read.

“Tony has written a book and we are looking into getting it published. It is about our life overseas. We do not have a publisher and have no idea if we ever will. They are all more interested in post-stroke which Tony did not want to write about. I have thought about writing about my experiences. We will have to wait and see.”

•The Channel 4 documentary “Please Let Our Dad Die” is available to watch on 4onDemand.

•The petition to support Jane’s appeal can be found on:  www.change.org/en-GB/petitions/tony-nicklinson-s-right-to-die-change-the-law or via Jane’s Twitter page.

    

   By Sarita Sikka