The Way We Die Now (20 page)

Marie Fleming, who died in December 2013, became famous in Ireland as a ‘right to die’ campaigner. She had, over many years, become progressively more incapacitated by multiple sclerosis (MS). She and her partner, Tom Curran, went to the High Court, and subsequently the Supreme Court, to establish her right to die, in particular for her partner to actively assist in killing her, without fear of prosecution. She lost her case, but became something of a national heroine. She died some months after the Supreme Court hearing. After her death, Tom Curran said: ‘She died peacefully at home, in her own bed, and that is what she was fighting for.’

It is difficult to write objectively about Marie Fleming without appearing to be disrespectful of the dead, and those who grieve for them, but had Marie Fleming succeeded, she would have altered forever the way in which I practise my profession. For that reason alone, I feel I have the right to comment on her case and its wider implications. But first this should be said: Marie Fleming did not need to ‘fight’ for the death which eventually took her. No law stopped her from dying ‘peacefully at home, in her own bed’. In her memoir,
An Act of Love
, Tom Curran writes in the Foreword:

Her fame spread around the world as she went to the highest court in Ireland in an attempt to establish her right to take control away from the MS in determining the time and manner in which she died. To her, this was the ultimate fight against the beast that had taken so much from her. She was determined that the MS would not control her death as it did much of her life – and her concern was not just for herself but for others in similar situations to us. And, while she had the assurance from me that she could be in control at the end, the court case was an attempt to protect those who were prepared to help her. While she may have lost the case, she ultimately won in the end.

One word dominates this paragraph: control. Marie Fleming’s memoir begins: ‘My last request on this earth is to be allowed to die at home in the arms of my partner, Tom, and with my two adult children, Corrinna and Simon, close by. I want to be held, hugged and whispered to as I pass on... I had to take the state to court.’

Fleming had several close encounters with death in the years running up to the court case. It appears that Nature offered Marie Fleming an exit on more than one occasion, but she declined this offer: ‘When I had pneumonia and nearly died, Tom asked me if I wanted to be saved or not. I chose to be saved. The time was not right.’ She wanted a death where she would expire in the arms of her partner, with her two children in attendance. This recalls Philippe Ariès’s description of the ‘Beautiful Death’ of the Romantic era: ‘an occasion for the most perfect union between the one leaving and those remaining behind’. Fleming and Curran initially had some naïve ideas about assisted suicide: ‘When I first told him that I wanted him to help me,
he hoped we could call on a doctor to administer an injection
[my italics], but this was not to be. It was going to be a difficult process both from a physical and a legal point of view.’

The couple considered going to the Dignitas clinic in Switzerland, but decided against it. Instead, they resolved to take on the state. Fleming was eager for such a stage: ‘I have never had a voice. As a child, when I was trying to be a mother to my siblings and my father, I tried shouting for help, but nobody heard me. When I was pregnant, I took an overdose but nobody listened. I hope the court will give me that voice I have always craved.’

On her first day at the High Court, one of her barristers posed the following question to her: ‘And what about palliative care? Have you thought of going into a hospice to die?’ Fleming replied: ‘That is not acceptable to me.’ The court was sympathetic; the president of the High Court of Ireland, Nicholas Kearns, remarked that Fleming was ‘in many ways the most remarkable witness which any member of this court has been privileged to encounter’. The judgment, however, went against her: ‘The court did not agree that my rights under the Constitution negated the ban on assisted suicide.’ The wording of the Court’s judgment read: ‘While a competent adult patient has the right to refuse medical treatment, even if this leads to death, the taking of active steps by a third party to bring about the death of another is an entirely different matter...’

The couple appealed to the Supreme Court, but lost. The judgment, however, seemed to suggest that some special arrangement might be found for Marie Fleming:

Justice Susan Denham did say, and I quote, that ‘nothing in the court’s judgment should be taken as necessarily implying it would not be open to the state, in the event the Oireachtas [the Irish Parliament] were satisfied that measures with appropriate safeguards could be introduced, to deal with a case such as that of Ms Fleming’s.’ I didn’t find much comfort in that.

Following the Supreme Court judgment at the end of April 2013, Tom Curran made an emotionally charged appearance on
The Late Late Show
, Ireland’s long-running television chat show. He read out a letter from Marie Fleming: ‘Thank you for listening to what I have to say. This is what was missing from the court. While I feel let down by the judgment, it is more upsetting that it feels I wasn’t listened to.’

Marie Fleming died at home in December 2013, seven months after the Supreme Court judgment. Tom Curran was the only one with her at the end: ‘Marie died exactly the way she wanted to die – peacefully at home in my arms.’ The Irish state paid most of the ‘substantial’ legal costs.

The Marie Fleming story is a curious one. At its heart, there is an obsession with control. Fleming, before the onset of MS, had a somewhat troubled life. Her mother abandoned the family when Marie was a child, and she had to become mother to her siblings. She became pregnant as a teenager. There was an overdose. Two marriages failed. She admitted that she hoped that her High Court appearance would give her ‘the voice she always craved’. And it did: she became famous, an Irish heroine. The media coverage was almost unanimously supportive of her case and she was described as brave, courageous, clear-minded and an inspiration. But, as I suspect the various judges who ruled on her case surmised, the law is also there to protect the cowardly, the stupid, the unloved and the uninspiring.

Marie Fleming was fighting not for the right to die, but for the right to die on her own, highly individualistic, terms. She did not want an unpredictable death, its timing and manner decided by nature, but instead a death entirely scripted and controlled by herself. What’s wrong with that? Nothing, if it concerns Marie Fleming only. But had she won her court case, the Irish Constitution would have had to be amended. Vulnerable, sick, old people, with little thought of a stage-managed demise, would have suddenly found themselves with a new ‘option’. Doctors would suddenly have been faced with a new ‘role’.

Her story is also instructive on another level. Media coverage, as I have said, was almost unanimously in her favour, and dissenting views were not heard. Suffering was conflated with moral infallibility; it became unacceptable to disagree with someone who was the victim of a progressive and incurable disease. Those who have suffered are regarded as having a special moral authority. We can acknowledge, and sympathize with, Marie Fleming’s suffering, but we cannot, as a society, alter our laws to indulge the fanciful notions, held by a single individual, of a special death.

Tony Nicklinson, like Marie Fleming, also went to the High Court (the English one) for the right to assisted suicide. Like Fleming, he lost his case. He died in August 2012, days after the High Court rejected his plea for a doctor to help end his life. After the verdict, he refused food. ‘The official cause was pneumonia,’ said his widow Jane, ‘but really it was a broken heart. He got the decision and deteriorated within a day or two. He just gave up.’ Clearly, she saw no irony in the situation: he died of frustration because a court had denied him the right to die. In a further bizarre twist, Jane Nicklinson continued to wage a legal battle on behalf of her husband – a dead man – for the right to die. Her appeals were rejected by both the Supreme Court and the European Court of Human Rights. Nicklinson, just like Marie Fleming, wanted the right to die according to
his
script. It wasn’t really about suffering, or death as such: it was again about control. Both Fleming and Nicklinson were left physically powerless by their diseases; was dictating the manner of death their only means of exerting any control?

Jeffrey Spector died at the Dignitas clinic in Switzerland in May 2015. He spent his last week being filmed by a television crew. He had been diagnosed with a spinal tumour six years before: the tumour was inoperable and would eventually have paralysed him. When he noticed some loss of sensation in his fingers, he decided, according to the
Guardian
, that ‘he wanted to be in control of the final stages of his life’. His family begged him to reconsider, but for Spector, a successful businessman, control was what really mattered. His tumour was slowly progressive – he had lived with it for six years – and it is possible that he might have enjoyed several more years of independent life. What would Jeffrey Spector say to Richard Ford?

The campaign in support of assisted dying seems to be founded on a rather naïve view of human nature, and supported by the views and experience of exceptional individuals. I have encountered enough dodgy families and, indeed, dodgy doctors (such as the proto-Harold Shipman I met back in 1980), to feel nothing but relief at the Marie Fleming verdict.

Suicide pacts, where the two participants ‘assist’ each other, usually without outside intervention, are also instructive. Sometimes, as in the case of the philosopher Seneca and his wife Paulina, things do not go to plan: the suicide was botched – he died, but she did not. Another example, which has always disturbed me, is the case of the Hungarian émigré writer Arthur Koestler and his wife, Cynthia. Koestler had written about death frequently, and resolved to take his own life in his seventies when he became ill with Parkinson’s disease and leukaemia. He wrote a suicide note, which ended − almost as an afterthought − with: ‘My wife decided that after thirty-four years of working together, she could not face life after my death.’ As far as we know, Cynthia was in good health and not suffering from any psychiatric disorder, when she and Koestler took a fatal combination of alcohol and barbiturates in 1983. It is not entirely surprising that Koestler, who had a particular view on the role of women (as well as a huge ego and a domineering, powerful personality), should write on behalf of his wife and allow her to end her life on the rather specious grounds that ‘she could not face life’ without him. After a suitable period of Geoffrey Gorer-type mourning, she might very well have changed her mind. She might have survived to reflect on her late husband’s monstrous egotism. Cynthia Koestler, alas, was not as fortunate as Paulina. Koestler needed not only to control the manner of his own death, but also to drag his wife with him, in a grotesque secular take on the Hindu practice of suttee.

Cicely Saunders observed that those asking for assisted suicide fall into three camps: (1) ‘Treat my pain’; (2) ‘Let me die’; and (3) ‘Kill me’ (now/later – usually later). Groups 1 and 2 are asking for a solution to a problem that is soluble by means other than killing them. This leaves a minority in Group 3. Many people in this group – Jeffrey Spector would be a good example − are used to being in control over most aspects of their lives, so it is understandable that they wish to exert the same degree of control over their deaths.

Nearly all the cases invoked in support of assisted suicide are of eloquent, intelligent people. But, as we have seen, the majority of dying patients placed on the Liverpool Care Pathway did not even know they were dying. ‘The life of the poor man’, observed Philippe Ariès, ‘has always been an ineluctable fate over which he has no control.’ But what might conceivably be right for Marie Fleming or Tony Nicklinson may not be good for society at large: normalizing killing coarsens society.

Baroness Mary Warnock is an eminent academic moral philosopher, and a fine exemplar of the British intellectual establishment. She holds refreshingly unfashionable views on people with dementia:

If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service... I’m absolutely fully in agreement with the argument that if pain is insufferable, then someone should be given help to die... I think that’s the way the future will go. Putting it rather brutally, you’d be licensing people to put others down.

Her comments, unsurprisingly, caused outrage, but Warnock is old enough, and patrician enough, to not give a damn. Although I admire her insouciance and élan, she is, of course, deluded. Warnock has spent most of her life in Oxford Common Rooms, far from the realities of nursing homes and geriatric wards. I worked in the NHS for many years, and never once did I encounter a patient who raised a concern that they might be wasting its finite resources. Feeling one is a burden to the state is something that the ancient Spartans may have known, but not modern Britons. Mary Warnock also fails to understand that dementia is a spectrum of illnesses: at the bad end, there are people who are mute, incontinent, suffering; at the other end, are people with some degree of memory loss, who need a little help, but whose quality of life is good.

I am worried about a future when doctors are licensed ‘to put others down’. I am worried about what some families would get up to if given formal powers as ‘advocates’. I am worried about what some biddable and obliging doctors would get up to if given such licences. Between Mary Warnock on one side of the argument, and the over-enthusiastic, anti-ageist doctors on the other side, lies a middle path for people with dementia. You don’t have to allow licensed doctor-executioners to euthanize them, but at the same time you don’t have to treat all acute illnesses, such as pneumonia. We can provide comfort and care without killing people and without overburdening the health service. Assisted suicide is not a ‘slippery slope’: it’s a paradigm shift.