Allow death with dignity

The tragic case of Lynn Gilderdale touched my heart, as it did so many others. Devoted mother Kay who discovered her desperately ill daughter in the midst of a suicide attempt spent 28 hours administering a cocktail of lethal drugs to her after failing to convince her to go on living. From the middle of the night, through the whole of the next day and into the following morning, Kay Gilderdale, 55, helped her daughter Lynn, 31, to end the pain of the "unimaginably wretched" form of ME (myalgic encephalopathy) she suffered. Gilderdale handed her daughter two syringes of morphine to administer to herself. Over the following hours when that failed to kill her she gave her crushed-up antidepressants and sleeping pills, injected morphine directly into her daughter's intravenous line, and passed air bubbles via a syringe into her vein to try to cause a fatal clot on the lung. At one point in the early hours of the next day, when she saw Lynn was still breathing, her mother telephoned Exit, the assisted dying charity, for advice. Shortly afterwards Lynn Gilderdale, died, 30 hours after she had called her mother to her bedside in the midst of a failed suicide attempt, to plead: "I want the pain to go. I don't want to go on."

But the story didn't end on the morning of December 3th 2008; Kay Gilderdale was arrested for murder and the case dragged humiliatingly through court, though the charges against her were dropped. The jury was told Gilderdale, a "loving, caring" mother, who is supported "unconditionally" by her family, admits assisting her daughter's suicide in December 2008. But Sally Howes, QC, prosecuting, said their task was to judge whether her actions after her daughter had called for help amounted to attempted murder. "Instead of assisting, she then set about … in performing actions which were designed with one intention only, that of terminating her daughter's life," said Howes. "It was not done to make her better. It was done to make sure that she died." The charge was attempted murder because nobody could be sure whether Gilderdale had administered the fatal dose or doses - Gilderdale denies the charge. Until the age of 14 Lynn was a bright and healthy schoolgirl, who lived with her family in Stonegate, east Sussex. But after a BCG vaccination at school she was struck down by ME and within four months was unable to move from the waist down. As the illness progressed she became bedridden, lost her ability to swallow and was fed through a nasogastric tube. Her drugs were given to her via an intravenous catheter, known as a Hickman line, and she communicated through sign language, which she developed with her parents, Kay and Richard, a former police officer.

Increasingly mistrustful of the medical profession, she came to rely almost totally on her mother, who had been trained to administer all the drugs she needed at home, including extra morphine on top of her 100mg daily dose. In the year before she died Gilderdale had made enquiries about travelling to Switzerland to the Dignitas assisted dying clinic, the court heard. In April 2008 she wrote a living will, stating she did not want medics to do anything more to prolong her life. "I fear degeneration and indignity far more than I fear death," she wrote. Her final hours began at about 1am on 3 December 2008, when Lynn tried to kill herself by injecting morphine into her blood. Realising she did not have enough, she called her mother to beg for help. For an hour Gilderdale tried to persuade her daughter not to end her life, but she gave in when her daughter was insistent she wanted the pain to end. Over the next 28 hours Gilderdale neither ate nor slept as she helped Lynn die.

Exporting difficult issues does not seem the most effective or humane way of making policy. But, in the case of Lord Falconer's amendment to the coroners and justice bill, it is better than prosecuting innocent people who are supporting loved ones in the most difficult of circumstances. Just as infertile people increasingly travel abroad to more liberal jurisdictions to secure the fertility treatment they need to create life, so people in the final stages of terminal illness are forced to travel abroad to win the right to die with dignity – specifically, to access assisted suicide at the hands of Dignitas, the Swiss group that facilitates control for people who wish to manage the timing, means and manner of their death. Since 2002, at least 115 people have travelled from Britain to have an assisted suicide. This is not a progressive or humane state of affairs. First, because partners or friends who travel to support dying people are at risk of prosecution once they return, a problem that Debbie Purdy's campaign has highlighted. Second, because organisations like Dignitas appear indiscriminate about whom they help to die. Available information suggests that at least five of the British people whom Dignitas has assisted did not have a terminal illness, but conditions such as spinal injury and diabetes.The director of public prosecutions has indicated that the current practice of not prosecuting relatives is out of step with the law, which makes assisting suicide illegal in all circumstances.

But the real answer is to bring in effective assisted dying legislation in Britain, designed for mentally competent adults in the later stages of terminal illness, and with suitable safeguards to protect vulnerable people from abuse. Across Europe, laws are being introduced to give access to assisted dying in terminal illness: the Netherlands led the way, but Belgium and Luxemburg have now introduced similar legislation, while Spain and France are now actively contemplating legal measures to help people at the end of life. As a supporter of disability rights, I back the right of disabled people to have control over the time and manner of their death, so they can avoid unbearable suffering and achieve dignity in dying. Being disabled in itself is no reason to die, but for many of those who have terminal illness, controlling the circumstances of their death becomes very important. Activists like Jane Campbell, who have achieved so much in terms of independent living for disabled people, are inconsistent in now campaigning to deny disabled people a choice at the end of life. While the disability community, like the wider public, is split on this issue, surveys consistently demonstrate that a majority support liberalisation. Now is the time to introduce a well-designed law to permit properly regulated assisted dying in limited circumstances for terminally ill people.

Debbie Purdy did not ask the law lords for the right to die, nor did she ask that her husband be allowed to help her die. Those are intensely private permissions that no one readily devolves to a court. Ms Purdy, who suffers from multiple sclerosis, asked for clarity over whether her husband would face prosecution should he help her take her life in Switzerland.   The law lords could not give her that clarity but ruled last August that she was entitled to it. Thus a significant blow has been dealt to the 1961 act that makes an offence of "complicity" in suicide and so criminalises deeds that might otherwise be judged merciful. The law must now recognise that mercy. Parliament last debated the issue in 2006 when Baron Joffe's bill on assisted dying was defeated, partly by religious lobbying. Bishops in the Lords called on the supremacy of God's will in deciding when life ends. For Man to arrogate that power, goes this argument, is an act of terrible blasphemy.  A secular democracy should respect the passions that religious faith animates on moral dilemmas, but it should not have its law dictated by them. Believers have the right to abstain from practices they consider sinful, but not a right of veto over others. But the religious argument contains the kernel of a compelling secular argument against assisted dying: it is inherently dangerous for the law to sanction premeditated killing, even within a highly specified set of circumstances. What would such a list of circumstances look like? Could there ever be enough safeguards to prevent abuse?

The basic outline of criteria where assisted dying might be allowed has been widely discussed. The mental fitness of the patient would have to be assessed, as would clarity of intent and freedom from duress. Ulterior motive in the helper would have to be excluded. But then, who gains the new entitlement? Does it extend only to the terminally ill or does it include those whose health might endure for many years but consider that prospect intolerable? Must it be a physical illness that makes life unbearable or is mental anguish sufficient grounds? Would the state withhold the right to die while it enforced counselling in the hope of teasing out remnants of a will to live? Once the process of legislation is embarked upon, there is the danger that the big moral questions, far from being resolved, will be dispersed through a multitude of procedural questions; that the difference between mercy and murder will be lost in an ostensibly civilised bureaucracy of clinical killing. There then follows a new danger. Death becomes an item on the menu of options presented on diagnosis of a fatal illness. The awful fear of being a "burden" on loved ones is amplified by the newly legitimate means to ease that burden. Subtly, society nudges the terminally sick towards the exit.

Those are strong arguments, adding up to the view that the current situation, with all its ambiguities, does less harm than would be the case if the law sought clarity. But what that view misses, what the Purdy case clearly shows, is that ambiguity is the source of most anguish. Nobody takes the decision to end their life lightly. The law is no more capable of encouraging suicide than it is currently able to proscribe it. But the law does heap needless torment on those who make that choice: fear of prosecution for loved ones; fear of being too ill to travel; sadness at being unable to die at home. There is no secret appetite for casual death that would somehow be released by new legislation. Instead, a process that already goes on clandestinely, shrouded in fear or shame, outsourced to foreign clinics, could be brought in from the shadows. Such was the case with abortion in the 1960s; society had made up its mind that the practice was tolerable, but the law made it needlessly dangerous and cruel. A new law is required. It would not create or promote the idea of assisted dying. It would simply acknowledge that people already choose that path and so render the journey more humane for them and their loved ones.