Edward Turner: A real choice at the end of life for people who are desperate

As stories of assisted suicide dominate the news, our writer explains why some have a right to die

Sunday 14 December 2008 01:00

If the rule is still "thou shalt not kill", it's time to change the rule. Last week saw three deaths thrust into the public eye – all of them highlighting how our laws on assisting suicide are no longer fit for purpose.

Craig Ewert's death in 2006 at the Dignitas clinic in Zurich was beautifully portrayed in a documentary on Wednesday. It was particularly moving for me, as it so closely resembled the journey of my mother, Anne, to the same clinic earlier in the same year. She had been diagnosed with progressive supranuclear palsy, a degenerative neurological illness that, in its worst manifestations, can leave sufferers trapped in their own bodies. She had cared for my father during the years that he suffered from a similar condition, and, as a strong-willed individual, was resolved to avoid the same fate. She made the same journey to the same room, drank the same prescription and, like Ewert, slipped easily into sleep and faded away imperceptibly.

Some opponents of assisted dying, both inside and outside parliament, condemned the programme as a piece of voyeuristic ratings-chasing by Sky Real Lives, a TV channel few of us had previously heard of. I have no doubt that the programme was carefully chosen and promoted for maximum publicity – and with astonishing success – but this doesn't detract from the enormous public interest that was served by broadcasting it.

If we can watch birth, open-heart surgery and every other aspect of health care, why would we choose to ignore the process of death? Are opponents of assisted dying worried that we'll see it for what it is – swift, painless and timely? Most of us won't have open-heart surgery, but we will all die. Sadly, we're usually too scared of death to plan for a good one, whether for ourselves or our family members.

My parents, both doctors, encouraged open discussion about all the facts of life and death around the family dinner table, which helped prepare my two sisters and me for the inevitable consequences of their illnesses. My father always described death as being "your final friend" and, as he wasted away in his nursing home, becoming a stinking, breathing corpse, I wished for this friend of his to visit him soon.

Ewert, suffering from motor neurone disease, calmly and rationally explained: "If I don't go through with it, my choice is essentially to suffer [...] and then die – possibly in a way that is considerably more stressful and painful than this way." While physical pain can generally be made bearable with good palliative care, the gradual inability of some terminally ill patients to enjoy the things that previously made life worth living can not.

It was also announced last week that the parents of Daniel James, the 23-year-old rugby player left paralysed after an accident on the pitch, are not to be prosecuted under the 1961 Suicide Act for accompanying him to the Dignitas clinic, where he died on 12 September. Despite his loving parents' every entreaty and commitment to make his life as bearable as possible, Daniel was unshakable and consistent in his determination to end his life. Daniel wasn't terminally ill, but severely disabled, and wouldn't therefore have qualified for an assisted death under the legislation being proposed for the UK. However, it cannot possibly serve any useful purpose to add to his family's suffering by criminalising his parents.

My own experience is that family loyalties will always trump any threat of prosecution, regardless of the consequences; no one is better placed to determine what's right for each family than the family members themselves. The announcement by the Director of Public Prosecutions was common sense, yet what will have surprised many people was the statement that there was sufficient evidence to mount a prosecution at all. A prosecution was "not in the public interest" because, according to the DPP, an absolute discharge or nominal fine was the most likely outcome. However, it should never be in the public interest to prosecute loving family members acting selflessly and at great personal emotional cost. The mere threat of investigation and prosecution is a burden these families do not deserve.

I contrast this with the tragic case of Shaun Dykes, the Derby teenager who jumped to his death from the top of a multi-storey car park on 28 September, after being goaded by a baying crowd beneath him. No one has been arrested, and no charges brought against the people who willed him on for their cheap amusement. What Shaun desperately needed was help, not to be taunted to his death. Yet this behaviour evidently doesn't constitute "aiding, abetting, counselling or procuring" a suicide under the Suicide Act, when it so clearly fails the most basic test of human compassion.

Some religious opponents of assisted dying warn of the so-called slippery slope, the feared inexorable slide from assisted dying limited to the terminally ill to death on demand for anyone who wants it, no matter what their circumstances. We already accept that we don't artificially intervene to extend life to the maximum extent possible. Doctors, patients and families make informed choices not to extend treatment, where that treatment is deemed not to be beneficial to the wellbeing of the patient, even if this means that death comes sooner.

In these circumstances, the costs and benefits to the patient of the additional days or hours of life that could be achieved have been weighed up, and the personal cost of continued life deemed too high. In this respect, we are already on the slippery slope, having taken our first steps many decades ago. I think it's more helpful to see the debate in terms of a sliding scale between the presumption that life has an intrinsic value (or, in religious terms, that life is "sacred") and must therefore be protected, and the presumption that we should always respect the choices made by mentally competent adults over their own lives. It does not follow that just because you do not choose to set the sliding scale at one end, that it must inevitably gravitate towards the other.

The distinction I make is between assisting dying once the process of dying has started, and assisting suicide in circumstances where a patient's suffering is not inescapable. We need to legislate for the former and deter the latter.

The third case to make the news this week was that of Kay Gilderdale, who was arrested on suspicion of murder following the death of her 31-year-old daughter, Lynn, who had suffered from a severe form of Myalgic Encephalomyelitis (ME) for more than 17 years and had tried to commit suicide twice before. Cases like these are yet another symptom of the same problem that there is with the current law. If assisted dying were legalised, it would provide real choices at the end of life for people who are desperate. Relatives wouldn't face the torment of making difficult choices simply because no other options exist.

I would like to see the reform of the Suicide Act, as well as the introduction of assisted dying legislation, limited to the terminally ill. We know from research conducted by Professor Clive Seale at Brunel University in 2004 that about 900 deaths per year in the UK are directly assisted by doctors acting outside the law.

In Oregon, where assisted dying is legal, the rate of medically assisted death outside the law is a quarter that in neighbouring states. The number of patients opting for an assisted death has also remained constant over the past 10 years; in UK terms it would equate to around 600 deaths per year. When assisted dying is legalised in this country, the rate of medically assisted death will fall – the difference is that patients will make that choice for themselves.

Although my mother benefited from the Swiss law that does not make assisting a suicide unlawful, except when acting for personal gain, I do not want to see Swiss legislation enacted here. The practical effect of the law is that people who are not terminally ill and not close to the end of life can be helped to die, when what we should be doing as a society is helping these people to live. Assisted dying legislation must substitute a good death for a bad death, not death for life.

Edward Turner is a trustee of Dignity in Dying

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