Janet Tracey and her family might have saved themselves, their doctors and the English legal system a lot of grief had they watched Dr Volandes’s video on CPR. In 2011, Mrs Tracey, aged sixty-three, was diagnosed with advanced and incurable lung cancer. Two weeks later, on 19 February 2011, she was involved in a road traffic accident and sustained serious injuries, including a broken neck. She was taken to Addenbrooke’s Hospital in Cambridge, where she was admitted to the ICU. In a 2014 paper published in the journal Clinical Medicine, Zoë Fritz et al. summarized the subsequent events:
She had metastatic lung cancer and chronic lung disease with an estimated prognosis of 9 months. She was intubated and ventilated, and had two failed extubations. The family were informed that, if the third extubation failed, Mrs Tracey would be ‘allowed to slip away’, but there was no documentation of a discussion with Mrs Tracey.
A DNACPR form was written, and Mrs Tracey was successfully extubated and moved to the ward. The family subsequently discovered the DNACPR form and asked that it be removed, which was done. Unfortunately, Mrs Tracey deteriorated further and, after discussions with the family (Mrs Tracey was clear at this point that she did not want to discuss resuscitation herself), a second DNACPR form was completed: Mrs Tracey died on 7 March 2011 without attempted CPR.
The family subsequently instituted legal proceedings against the hospital, alleging that Mrs Tracey had two DNACPR orders imposed on her without being informed or consulted. The doctors at Addenbrooke’s insisted that they had discussed this matter with both the patient and her family. However, because this discussion was not documented in the hospital notes, the High Court Judge Nicola Davies ruled that this conversation had not taken place. Judge Davies, however, declined to hear legal arguments about a breach of human rights, and the family took their case to the Court of Appeal in 2014. Lord Dyson, the Master of the Rolls, said this: ‘since a DNACPR decision is one which will potentially deprive the patient of a life-saving treatment, there should be a presumption in favour of patient involvement. There need to be convincing reasons not to involve the patient.’ Addressing the issue of doctors not involving patients in these decisions because it would cause distress, Dyson made sure that doctors are damned if they do, and damned if they don’t: ‘Whether it is appropriate to consult will depend on a difficult judgement to be made by the clinicians... There can be little doubt that it is inappropriate... to involve the patient in the process if the clinician considers that to do so is likely to cause her to suffer physical or psychological harm.’ He threw in a lawyerly get-out clause, however: ‘doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them.’
What worries me about this case is the lack of understanding, on the part of both the Tracey family and the judiciary, of what cardio-pulmonary resuscitation is about. Any doctor would immediately conclude that resuscitation of a patient with Janet Tracey’s combination of diseases and injuries was pointless, but Lord Dyson, and the Tracey family, clearly thought it was a potentially ‘life-saving treatment’. Where the doctors and nurses at Addenbrooke’s Hospital saw only futility and indignity, the Tracey family saw euthanasia. The final judgment was a sub-Beckettian farce: doctors were ruled to have breached the human rights of a patient by not having a conversation she explicitly did not want to have.
The Tracey judgment will have a profound effect on medical practice in Britain. Stories about DNACPR orders had been appearing regularly in the press even before the Tracey ruling. The usual theme of these stories was of families finding out that their elderly relatives had been subject to a DNACPR order without their knowledge, with the implication that this was a form of back-door euthanasia. These stories fed the same hysteria that led to the end of the Liverpool Care Pathway. I suspect the Tracey family was familiar with these stories, but what such families fail to understand is that when a doctor raises the resuscitation issue, it is usually because that doctor believes that such treatment would be ineffective. (I have witnessed this at close range when my father died.) Not offering resuscitation doesn’t mean giving up on all treatment: it simply means not offering one particular treatment which is not going to work. It is possible that communication between the Tracey family and the doctors was poor. ‘Poor communication’ is usually blamed for this kind of stand-off, but I wonder.
In the wake of the Tracey case, all of the professional bodies with a stake in resuscitation (the Resuscitation Council, the British Medical Association, the Royal College of Nursing) made pious obeisance to the importance of ‘communication’. My own experience has taught me that all the communication in the world is sometimes to no avail. Many with power over public opinion (the media, the judiciary) operate far from the messy realities of hospital life, and don’t have to live with the consequences of their actions. Lord Dyson’s ruling seems to be based on an assumption that all patients and families are like him – educated, informed and reasonable. ‘Informed consent’, as I have written, is a legalistic fantasy, as well as a convenient trump-card in negligence proceedings. Luckily – and remarkably − most families are indeed reasonable, but a significant minority are not. And these families, inflamed by the newspapers and the abstract notion of their ‘rights’, will demand treatments, no matter how unreasonable or futile they are. Hospital doctors, already exhausted and demoralized, will acquiesce, and full resuscitation will be the default setting. The Tracey ruling, I predict, will result in many more dying people undergoing CPR as their final experience on this earth.
The Tracey family are quietly satisfied that ‘some good’ has come out of Janet’s death. Her husband David said this after the Court of Appeal judgment: ‘It feels as though the wrong done to Janet has been recognized by the court and the fact that her death has led to greater clarity in the law gives us all some small comfort.’ Maurice Saatchi, too, fervently hoped that ‘some good’ would emerge from his bereavement. Saatchi’s attempt to ‘find some good’ thankfully failed, but the Traceys’ equally wrong-headed campaign was successful.
As for the judiciary, I am reminded of a lawyer friend who advised me: ‘If you go to court, don’t expect justice, or common sense, expect law.’ Decisions that doctors used to routinely make themselves are now being made by the courts, and judges are likely to become increasingly involved in medical decisions relating to end-of-life care. An eighteen-year-old boy had been treated for many years at an English hospital for a brain tumour, but his doctors eventually concluded in 2015 that further treatment, in particular chemotherapy, would be pointless. His parents were unwilling to accept this, and went to the High Court in an attempt to overturn their decision. The Court, on this occasion, supported the doctors, and the boy died shortly after. But in another case, in June 2015, the Court of Protection in London ruled that St George’s Hospital must continue to treat, fully and actively, a ‘deeply religious’ Muslim man left severely brain-damaged after a cardiac arrest. I could list many more: such cases now appear regularly in the newspapers. Are we facing a future where families who disagree with doctors will routinely go to court to get their own way? I must correct myself: that ‘future’ is already here. Julia Neuberger’s warning about doctors and nurses becoming ‘the whipping boys for our inadequate understanding of how we die’ is not, as she imagined, a ‘risk’, something that might happen in the future: it is a neat summary of what is happening now.
Matt Cooper, the Irish journalist and broadcaster, wrote about how difficult it was – particularly as an only child − to discuss resuscitation with doctors when his parents were dying. If someone as articulate and knowledgeable as Cooper finds this hard, for many families it will be impossible, even intolerable. And I’m not sure that we, as doctors, should dump these decisions on relatives: in most cases, it is a discussion that doesn’t need to happen. In England, however, the Tracey ruling has ensured that this discussion is now compulsory.
KILL ME
Philippe Ariès wrote in The
Hour of our Death about the temptation of suicide, ‘one of the last temptations in the artes moriendi: “Go ahead and kill yourself” suggests the devil to the sick man who is already lifting his dagger’. Ariès quoted the French social scientist Claudine Herzlich, who asked: ‘Are people going to demand to die when they are ready to die?’ Herzlich’s dystopian future has arrived.
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 o
f 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.
The Way We Die Now Page 15