‘I wish to find peace... I want the dignity of dying at home with loved ones around’

After two decades in chronic pain, Paul Lamb has just one last request. He wants help to die with dignity. Sarah Freeman reports.
Debbie Purdy with her husband Omar, below.Debbie Purdy with her husband Omar, below.
Debbie Purdy with her husband Omar, below.

Paul Lamb remembers little of the car crash which 23 years ago left him paralysed and in need of round-the-clock care. However, for the Leeds father-of-two every day since has been a stark reminder of how his life changed in an instant. Suffering from constant and chronic pain, Mr Lamb has tried countless different medications to ease his distress. Nothing has worked and even morphine and ketamine only provide temporary relief. He now spends his days sitting in a wheelchair in front of the television. Films play on the screen, but Mr Lamb doesn’t really watch and while he has a Kindle he no longer enjoys reading.

Most things, he says, feel pointless. So much so, that he now has just one last request. He wants the right to die.

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“I am 58 years of age and I am fed up of going through the motions of life rather than living it,” said the former builder. “In the past I have always looked at life and weighed up the positives and the negatives and thought that life was worth living. However, there are now too many negatives and the balance sheet is far outweighed by the negatives than the positives.”

Mr Lamb’s condition is so severe that he would not be able to end his own life without the help of a doctor. With assisted suicide illegal in this country, he has now been forced to take his case to the Court of Appeal.

“I wish I could end my own life but cannot. I wish to find peace. I genuinely feel this way and it is not because I am feeling sorry for myself. I want the dignity of dying with loved ones around me and at home. I want to be able to say, ‘I love you to bits, have a good life and think well of me’. I feel genuinely terrified by the fact of not having any choices left.

“I do not wish to go to [the Dignitas clinic in] Switzerland. Why should I go to a foreign alien country to die?”

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It was the same question asked by Tony Nicklinson who was paralysed from the neck down following a stroke in 2005 and suffered from locked-in syndrome. He died from pneumonia last summer, but his wife Jane has won the right to continue his challenge against a High Court ruling against doctor assisted death and she is being joined in that battle by Mr Lamb. The case is due to be heard next month and the pair are being represented Saimo Chahal, a partner at Bindmans LLP and the same lawyer who represented Debbie Purdy, perhaps the country’s most high profile campaigner on assisted dying.

It’s almost 20 years since the 50-year-old was diagnosed with multiple sclerosis and in 2010 she won a landmark judgement, which showed even in the darkest moments hope can spring from the most unlikely sources.

Determined to know what would happen to her husband Omar if he accompanied her to the Dignitas clinic in Switzerland and held her hand as she received a lethal dose of barbiturates and slipped into unconsciousness, the Bradford campaigner demanded the law be clarified.

Like Mr Lamb, she saw herself very much as David taking on the Goliath of the British legal system. When the Law Lords agreed and new guidelines, which suggested it would not be in the public interest for someone like Omar acting out of compassion to be arrested, were issued, Debbie was as much shocked as she was overjoyed.

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“When the verdict came I was halfway through organising to go to Dignitas. I was so adamant that Omar was not going to be punished for something which was my decision I honestly wouldn’t have hesitated. So these last few years have been a gift. The only reason I am still alive is because we won that case.”

Since then, the severity of Debbie’s multiple sclerosis has worsened. She hasn’t been out of the house since last August and often spends 22 hours a day in bed. From there she has continued campaigning in the hope that the continued pressure of people like her and Mr Lamb will result in a change in the law.

“Five years ago I would never have thought it possible, but then I never thought the Law Lords would listen to someone like me. We have to keep trying and we have to keep on making our case heard because this isn’t an issue which is going to go away.”

While groups like Dignity in Dying have long argued for mentally competent, terminally ill adults to be given the option of an assisted death, if Mr Lamb’s case succeeds it would go further. Because he is so severely paralysed and could not take the final steps to kill himself, he would require the help of a doctor.

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“Paul Lamb is proposing a far-reaching legal change which would remove legal protection form a large number of vulnerable elderly, disabled and sick people,” says a spokesman for the anti-euthanasia group Care Not Killing. “How many of these could feel pressured, whether real or imagined, to end their lives so as not be a financial or emotional burden on others? The so called right to die can so easily become the duty to die.

“There are also many people who already stand to gain financially or emotionally from the death of a particular elderly or disabled family member and they do not need encouragement. This is why the law is necessary. Through the penalties it holds in reserve, it provides the best balance and does not need changing.

“Furthermore, a time of economic recession, when many families are already under pressure from rising costs and when unemployment and benefit cuts are being squeezed, is the very worst time to be considering such a change.”

Dignity in Dying insists such fears are unfounded and that in states like Oregon and Washington, where assisted suicide has been legal for a number of years, the numbers taking advantage of the change in the law have remained fairly static. “When some one like Paul Lamb waives their anonymity it does really help to draw attention to the issue,” says Jo Cartwright, from the charity. “In Oregon cases of assisted dying account for just 0.2 per cent of all deaths and that has remained pretty constant over the last 15 years. Interestingly the Oregon Hospice Association, which originally campaigned against the move, has now changed it position because none of its concerns have been realised.

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“Of course there are issues that need to be debated and that’s really the next step. The Government needs to talk honestly and openly about the law as it stands.”

While previous attempts to introduce a debate in parliament have been sidelined, in the next few months leading campaigner Lord Falconer QC will table a Private Members Bill on the issue in the House of Lords.

The move is likely to occur at the same time a similar Bill is put before the French parliament and while there is no guarantee either will affect a change in the law, many believe that it is now only a question of time.

“Eighty per cent of people in this country believe that assisted dying should be made legal for those with a terminal disease,” says Debbie Purdy. “It’s a no brainer and while it wouldn’t help someone like me, whose condition is degenerative, but not terminal, it would open up the conversation to debate.

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“Unfortunately we have politicians who care far too much about opinion polls and who are worried about losing three and a half votes rather than representing the majority of the British public. I would never have voted for Mrs Thatcher and I despised everything she stood for, but at least she had the courage of her convictions. Unfortunately, there is a real lack of strong-minded politicians and that means we will all suffer.”

The wheels of justice often turn incredibly slowly, but after suffering for 23 years Mr Lamb is determined he won’t go without a fight. “I have always been an extremely strong character and when I believe in someone I can take on the world,” he said. “So for the sake of everyone in this country who deserves the right to a have a dignified death, I hope that we can make this happen.”

THE LEGAL FIGHT GOES ON

Paul Lamb is taking up the legal challenge which was first mounted by Tony Nicklinson.

After suffering a stroke, he became a prisoner in his own body and took his fight to be allowed to die with the help of a doctor to the High Court.

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On August 16 last year, his request was turned down and on learning of the outcome of his appeal, the father-of-two began refusing food and fluids. He deteriorated rapidly and a week later, after contracting pneumonia, he died aged 58.

His wife Jane is continuing his fight
and her husband’s and the challenge put forwarded by Mr Lamb will now be heard in the Court of Appeal on May 14 and 15.