When pain becomes a matter of life and death

Published on Saturday 2 January 2010 18:55

MARGO MacDonald's bill to legalise assisted suicide is due to come before the Scottish Parliament this month, but opinion on the subject is still sharply polarised, writes Eddie Barnes

NICKY Dalladay, 47, has had MS for 26 years. Every once in a while, another part of her body effectively shuts down. "I have to go through a grieving process, so I liken it to a form of bereavement," she notes. One day, she says, she wants to take control over her wasted body. She wants to know she can end her life at her choosing. When she first told her husband, he disagreed. She told her Catholic sister-in-law, who disagreed too. Her MP opposed the idea as well. All three, she says now, have come round. They all eventually understood, she says, her life from the inside. The true difficulty of her life comes late at night, she says. "In the evening, it is time to go to bed and my husband's day is not over. He is tired but he still has to undress me, wash me, put me on and off the lavatory, wash my hands, clean my teeth, put me into bed and finally he is allowed some time off and can obtain a much needed rest from having to deal with me. Then ... it all starts again the next morning." She adds: "In our society we will put an animal to sleep to end their pain and suffering, we need to show the same compassion to those people who are suffering at the end of their lives, and give them a choice to be allowed to die should their suffering become unbearable to them."

Alison Davis, who suffers from spina bifida, emphysema and osteoporosis, would once have agreed. Seventeen years ago, she decided she too wanted to die. The pain she still suffers is constant. "When the pain is at its worst I cannot think or speak, and this can go on for hours, with no prospect of relief. Taking morphine often makes me feel sick, and severe nausea is an added burden," she declares. She tried cutting her wrists and taking overdoses of painkillers. Had assisted suicide been legal she would now be dead. But then she changed her mind. A visit to a disabled children's project in India, where she saw the suffering of dozens of uncared-for youngsters convinced her to set up a charity helping them. "Euthanasia would have robbed me of the last 17 years of my life, and it would have robbed my Indian children of the chance in life they now have," she declares.

Two women, both facing intense physical suffering, but with two very different stories. This month, the ethical and moral questions over the right to die in Scotland are set to take centre stage in the Scottish Parliament. A bill on legalising assisted suicide is likely to be put before MSPs for consideration. The arguments raging in the debate are well-rehearsed: on the one hand there is the question of a patient's autonomy – his or her right to bring an end to suffering that has no hope of abating. On the other is the question of whether, in condoning suicide, society would be committing the ultimate act of hopelessness, and pressure hundreds of vulnerable people into killing themselves.

So should the wishes of women like Nicky be adhered to, giving her the prospect of a peaceful death at a time of her choosing? Or should they listen instead to Alison Davis? Who is right?

Margo MacDonald has fought many battles in a long political career, but none have been quite so personal as this one. In 2002, the independent MSP for the Lothians revealed she was suffering from Parkinson's disease. In 2008, she told fellow MSPs in an emotional speech that, should it ever come to it, she would not want her husband – the former MP Jim Sillars – to be prosecuted for helping her to die. Like Dalladay, should it ever come to it, she wants to have the option to exercise autonomy over her illness. MacDonald is as far removed from a morbid woman as could be imagined: despite her illness, last week she was continuing to keep a hectic schedule, running various campaigns on topics as varied as sports facilities and prostitution. But later this month, she aims to publish a private members' bill on legalising assisted suicide. One day, it could become a law which she may herself decide to use.

We have been here before. Five years ago, Lib Dem MSP Jeremy Purvis attempted to lodge a similar bill, but saw his own plans thrown out. Many predict the same will happen to MacDonald's efforts. But there is a growing sense that, this time round, things could be different. MacDonald has already secured the signatures of 21 of the parliament's 129 MSPs (private members must collect a minimum of 18 if they are to bring a bill to parliament). And what is more, a welter of high-profile cases in recent months and years has, claims MacDonald, begun to change public opinion.

First there was Daniel James, the 23-year-old rugby player from Nuneaton who was paralysed after dislocating his spine when a scrum collapsed during a game in 2007. Unable to face life in a wheelchair, he had already attempted to take his life when he contacted the Dignitas clinic in Switzerland. More recently, it emerged that the BBC conductor Sir Edward Downes and his wife had died at the same clinic in Switzerland after deciding they wanted to end their lives together, having struggled with serious health problems. But the case that has really opened up the debate in the last year is that of Debbie Purdy. Suffering from multiple sclerosis, she went to the High Court in July and won her case to have the law clarified on when someone would or would not be prosecuted for helping someone to die. Purdy said she wanted to know that, if her husband took her to a suicide clinic, he would not then face prosecution. The ruling led England's Director of Public Prosecutions, Keir Starmer, to make clear that he is now unlikely to prosecute those motivated by compassion who help a relative or close friend with a "clear, settled and informed" wish to die. It has led to claims Starmer has usurped parliament.

The case has ignited the debate about euthanasia. Campaigners in favour of assisted suicide in Scotland are now complaining that, compared with England, there is a lack of clarity in the law here. Lord Advocate Elish Angiolini responded to the Purdy case in September by declaring there was no need for any new guidelines, pointing out simply that helping someone to end their life may amount to homicide. The law, she noted, "was properly a matter for the Scottish Parliament." Hence, in Scotland, all the focus now turns to MacDonald's bill.

The bill is currently being studied by the parliament's Presiding Officer, Alex Fergusson who must decide whether or not it is within Holyrood's powers. Pro-life campaigners have written to Fergusson to argue that it should be struck down, on the grounds it breaks the European Human Rights Act. But assuming it is passed, MacDonald believes she has a fighting chance of winning the day. "It was always my assumption (that it would fall]. I thought the likelihood of it passing was not all that high. I thought it would be an incremental campaign to change the law and the law would change after a few stabs at it," she says. "But it is possible that the tipping point has already been reached." She cites a recent poll which asked people whether the law should be changed in Scotland to allow doctors to help people with chronic illness, who want to die, to end their lives. It found that 68 per cent said Yes, 8 per cent said No and 24 per cent said they did not know. MacDonald says the bill is specifically aimed at people with degenerative conditions – such as Huntingdon's, Parkinson's or MS, or those in the final stages of terminal illness. "We are talking about people who have to face having a very, very bad end-of-life experience and they are the ones who I am concerned about. It is a very small percentage of deaths every year," she declares.

But she faces considerable opposition from the many people who fear that the bill, if passed, would leave the most vulnerable in society in real danger. The Alzheimer's Society has already warned that the unintended consequence of such a law would be to endorse discrimination against anyone who found themselves terminally ill, or facing a hopeless degenerative illness. Such people may end up feeling that society wanted them to die. Other groups warn that, if assisted suicide is legalised, investment in palliative care would inevitably be diverted. Gordon MacDonald, of Care not Killing, says: "The arguments are still the same about public safety and palliative care. What is happening is that we are placing a minority of articulate people who want autonomy over their lives above the majority of people out there. We shouldn't be going down the road of having more people commit suicide. Their lives are valuable and we need to help them to deal with their illness, rather than allow them to believe there is no hope, so they get depressed and commit suicide."

"Why can't the people who have the power open up their own minds to give people like me the choice of when to terminate my own life and end my pain and suffering, in my own country? asks Dalladay. Davis retorts: "I still have the same disabilities and my spinal pain is equally as severe as it was when I wanted to die. What changed was my outlook on life."

With such polarised views over assisted suicide still in place, it remains unlikely that MacDonald's bill will result in a change of the law over the coming months. But it could still come to be seen as the moment when the debate over legalising assisted suicide in this country began in earnest. Quite where it ends, having started, is anybody's guess.