'BEING LIKE THIS IS NO LIFE'

[antiquity]

'BEING LIKE THIS IS NO LIFE'


17:00 - 15 January 2003

Motor neurone disease sufferer George Faulkner wants to die. His life has become so unbearable that he wants the law to be changed to allow a doctor to put an end to his suffering. George - using a special machine - and his wife, Susan, tell LYNETTE PINCHESS their heartbreaking story. Main picture by MARK LEE

Slowly but surely George Faulkner spells out the words on his special machine. It takes ten minutes...but he's ready and the computerised voice speaks for him: "I would like to die because there is no life living like this."

While his body is being ravaged by motor neurone disease, George's mind is as sharp as ever.

That is one of the great tragedies which make this cruel disease so unbearable.

Like fellow MND sufferer Diane Pretty, George supports the controversial right-to-die argument.

Last year Mrs Pretty, 43, lost her challenge at the European Court of Human Rights for her husband to help her commit suicide without facing prosecution.

The Faulkner family were among the 50,000 people who backed Mrs Pretty's petition calling for the law to be changed.

George, who is not fighting the cause legally, was disappointed when Mrs Pretty lost her case.

The 53-year-old grandfather, longs to be free from suffering. He is in constant pain and it gets worse each day.

He knows he will never get better from this incurable disease and wants to have medical assistance to die with dignity and avoid, what he believes, will be a distressing death.

While his wife, Susan, respects his wishes, she says she could not help him end his life. "He knows I wouldn't want to do it," she says.

But if a doctor could give George a lethal injection, he's in no doubt - he would have it today and Susan wouldn't argue.

However, so far, he has refused to ask his doctors to help him die.

As well as reducing his speech to a barely understandable gabble, the disease has also robbed George of much of his ability to move.

He communicates with a special machine, which has the alphabet on a screen, and a device strapped to his head which selects the letters when he presses it against the back of his chair.

It is a slow process, so Susan takes up the story of how the disease struck and changed both their lives forever.

"You wouldn't let a dog suffer like this," she says at their home in Meredith Close, The Meadows. George interrupts but I can't make out what he is saying. Susan, however, recognises the familiar saying: "...just wasting away. I am not going to get better and it's the knowing I'm not going to get better."

The couple, who have a son, Jeff, and two daughters, Mandy and Julie, used to lead a normal happy existence.

George worked as a cleaner up the road at County Hall.

He enjoyed a pint and a smoke while having a game of darts or pool - but all that changed in June 2001.

Walking back home from the club with Susan, he complained of pins and needles in his leg. The sensation was so bad that he couldn't move but eventually got home by dragging his leg.

Weeks passed and George suddenly started falling over. Four months later, hospital tests revealed he had motor neurone disease.

Since the diagnosis, his family have been shocked by his rapid decline. He can barely lift his stick-like arms and has lost the use of his legs.

He spends every day confined to his downstairs bedroom, the monotony broken only by hospital visits or a rare trip out.

And little is left of his sense of dignity - he needs to be fed, washed, shaved, and helped to use the toilet. Sometimes he struggles to swallow water or tea which he drinks through a straw.

His wife of 35 years has to do almost everything for him - right down to scratching him if he feels an itch.

"He is in pain," she says. "When we lift him up we hurt him. Every day it's getting worse. He can talk a little bit but it's difficult to understand and he gets flustered. He gets depressed and fed up. It's depressing to see him go like this so quick. It's hard for us to see him suffer."

Fortunately for Susan, their 34-year-old son, Jeff, lives at home and is able to help get his dad from his wheelchair into the reclining seat where he spends most of his day,

in front of the television or watching his tropical fish.

One of his few remaining pleasures is having a cigarette, which Susan lights for him and holds to his mouth while he takes a drag.

"He used to be active," says Susan. "He was always doing something. If somebody needed a bit of plumbing or anything, he'd do it."

George takes daily doses of tablets to try to slow down the disease and ease the pain and wears special pads to help straighten his cramped fingers. Doctors cannot give a long-term prognosis as life expectancy in MND varies.

But both George his family are dreading what the future holds.

The Motor Neurone Disease Association says the average life expectancy after diagnosis is 14 months. But one of the most well-known sufferers of the disease, scientific genius Prof Stephen Hawking has had symptoms of the disease for about 40 years.

Before I leave, George has one last message for me on his machine: "I wouldn't wish this on the devil."

Suicide in England is legal but helping someone to kill themselves is a crime under the 1961 Suicide Act and punishable by up to 14 years in prison.

In Holland, people whose suffering has become "unbearable" can choose to end their life under strict guidelines with the say-so of two doctors.

But Nottingham British Medical Association spokesman Dr Paddy Keavney believes this country is unlikely to follow suit. He believes it would be a dangerous route to take and could be abused.

"Ours is a very traditional response. A doctor's job is not to assist to kill anyone," he said. "We do our best to make the quality of life, and, if necessary, the quality of dying, as comfortable as possible."

He added: "Motor neurone disease is extremely distressing. I am extremely sympathetic."

Dr Alan Whiteley, George's consultant neurologist at the QMC, said it was down to society to decide which path to take, not just doctors.

"It is very difficult for people in his predicament as it is with a lot of other people who have illnesses that can be terminal.

"We are hampered by the law and, yes, doctors generally feel they would like to help people to have a peaceful end to their life.

"It is a very complicated issue whether we should allow assisted deaths."

After Mrs Pretty died last May, her husband Brian has continued to pursue the right-to-die campaign through ukActNow.org whose members are calling on MPs to support a change in the law.

Mr Pretty said: "For people in that position to be denied the basic human right of saying goodbye to their family and friends at home, at a time of their choosing, and leave in a way they feel dignified, is a disgrace. Diane was incensed by her lack of rights as I'm sure Mr Faulkner is.

"At the end Diane went through everything she had dreaded and there was nothing I could do to help, so I do feel bitter that she had to suffer after all she'd already gone through."

The ukActNow.org website has the support of people who are ill themselves or have seen a relative suffer. They include Katie, from Notts, a multiple sclerosis sufferer in her early fifties who says: "I believe the law should be changed to allow people, like myself, to benefit from medical assistance to die with dignity when our condition gets unbearable.

"I have the right to refuse treatment but also need the comfort of knowing that I could choose to end my suffering earlier rather than later."

Nigel, also of Notts, says: "My mother had cancer and suffered a long and painful death. She spent her last weeks in a hospice and asked me to help her to die."

The Motor Neurone Disease Association is open-minded on the subject.

A spokeswoman said: "We neither support nor oppose any attempt to change the law regarding euthanasia or assisted suicide because we believe it is a matter of individual conscience and it is not for the association to make judgements."

Diane Pretty

Diane Pretty hit the headlines when she mounted a legal battle to let her to die with dignity after fighting motor neurone disease for two years.

In 2001, the human rights organisation Liberty wrote to the Director of Public Prosecutions asking for an assurance that Mrs Pretty's husband, Brian, would not be prosecuted if he helped his wife take her own life.

When no such assurance was forthcoming, 43-year-old Mrs Pretty, from Luton, took her case to the High Court in London and then the European Court of Human Rights in Strasbourg.

Her website, entitled Justice4Diane, calls for a compassionate law for the UK that allows a doctor to end the life of a terminally ill adult at that person's request. A list of strict safeguards are proposed.

These include a doctor being satisfied that the patient is competent and suffering unbearably from an incurable illness with no prospect of improvement.

Before her death, Mrs Pretty said: "The law needs changing so that I, and people like me, can choose how and when we die and not be forced to endure untold suffering for no reason."

Motor neurone disease is a progressive disease that can affect any adult at any time. The cause is unknown and there is no cure. Three people a day die from the disease in the UK and it affects over 5,000 people in this country at any one time.

It kills off nerve cells in the brain and spinal cord which cause muscles to stop working, leaving a sufferer unable to walk, talk or feed themselves. But the intellect and senses are unaffected.

Death from respiratory failure and pneumonia is imminent when the breathing muscles become affected.

Most sufferers are aged 50 to 70. Famous people who have died of MND include actor David Niven, footballer Don Revie and journalist Jill Tweedie.

The MND Association can be contacted on 08457 626262.

How laws works in Holland

Euthanasia in Holland, which has been commonplace since 1984, became legal last year.

Patients must have made a voluntary, well-considered and lasting request to die, must be faced with a future of unbearable suffering and there must be no reasonable alternative. As second doctor has to be consulted.

Euthanasia, or assisted suicide, was used discreetly for decades in Dutch hospitals and homes without fear of prosecution, despite being illegal. Around 2,000 to 3,000 patients a year have had the lethal injection that kills in minutes.

Once the risk of prosecution was removed, fears were raised about the system being abused.

One study published in the British Medical Journal in 1995 found that almost two-thirds of cases had gone unreported and in some cases alternative treatment was available in contravention of the guidelines drawn up by the courts and Royal Dutch Medical Association.

Opponents also claimed euthanasia had been offered to people suffering from depression or even as a convenience.


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