The Way We Die Now (19 page)

But it’s not as simple as Dr Volandes suggests. It is interesting, and instructive, to read about the US experience. Doctors there – usually in collusion with families – commonly ignore advance directives. Very often, the slow course of a long illness makes it difficult to know when to invoke the provisions of the directive. When there is any uncertainty, doctors and families generally opt for full intervention.

Intriguingly, decisions about end-of-life care may be influenced by the way the options are presented, or ‘framed’. Using ideas well known to behavioural economists, Dr Scott Halpern of the University of Pennsylvania showed that the ‘default setting’ of advance directive documents strongly influenced patients’ choices. If the default setting was ‘comfort’, patients were more likely to opt for this, whereas if the default setting was full CPR, more chose this. Changing the language from ‘do not resuscitate’ to ‘allow a natural death’ also changed patients’ choices. Halpern calls this ‘nudging’. If I were to choose one core skill for doctors treating the dying and their families, it would be the ability to ‘nudge’ people to make choices that will best help them.

Americans appear to be ambivalent about advance directives. In 2009, when President Obama’s Affordable Care Act proposed that doctors should be paid for having a discussion about end-of-life care with their patients, Sarah Palin and others claimed that this would introduce ‘death panels’. Although the accusation was absurd, the proposal was dropped.

Advance directives perpetuate an illusion that we can control, in minute detail, our treatment of an unpredictable illness at some unknown time in the future. This ignores the contingent nature of life and death. Nevertheless, many doctors, including Atul Gawande, are enthusiastic supporters of advance directives. They point to the studies which show that employment of these directives dramatically reduces admission of nursing-home patients to acute hospitals at the end of life. Enthusiasm for advance directives, along with the campaign for assisted suicide, is fuelled by the perception that old people need protection from modern medicine. Even if this is only partly true, it should be a cause of collective shame. We have, as a profession, come to a pretty pass when our patients stop trusting their doctors, and see us as an obstacle to a peaceful death. Perhaps we will have to accept advance directives as a necessary evil, and an admission of our failure to treat the elderly and the dying with compassion and common sense.

The success rate of cardio-pulmonary resuscitation (defined as the resumption of a spontaneous circulation) is 18 per cent; the perception of the general public is that it is closer to 50 per cent. This perception may be due to television: a study published in the
New England Journal of Medicine
in 1996 analysed the depiction of CPR in two popular medical television dramas –
ER
and
Chicago Hope
, and one ‘reality-based’ show,
Rescue 911.
In the 60 occurrences of CPR in 97 television episodes, 75 per cent of the ‘patients’ were successfully resuscitated.

In the 82 per cent in whom CPR is unsuccessful, death is preceded by a period – usually lasting about twenty minutes – of ‘bagging’ (filling the lungs with air via an endo- tracheal tube using a manually powered ‘bag’) and cardiac massage. Drugs such as adrenaline are injected, sometimes directly into the heart, with a long needle (rather like the one John Travolta uses to revive Uma Thurman in
Pulp Fiction
). Rib fractures are very common. Doctors do the bagging and cardiac massage in relays. The most senior member of the arrest team eventually calls ‘time’. Remember that most of these resuscitation attempts take place in general wards, in close proximity to other patients, who will hear everything from the other side of the curtain. Thankfully, most people dying in hospital don’t undergo CPR, but 20 per cent do: so, for one in five people, their last experience on this earth is bloody, violent and futile.

In those 18 per cent in whom CPR is successful, the vast majority spend a prolonged period in intensive care. Many are left with permanent brain damage. I recall the case of the father of a school friend. He had a cardiac arrest at his workplace. The ambulance crew managed to resuscitate him, and he was admitted to the Intensive Care Unit. When he woke up, he was raving. And he stayed raving for the remaining two years of his life.

Twenty years ago, a distant relative of mine, a man in his late sixties, had a coronary angiogram; the purpose of this procedure is to obtain X-rays of the coronary arteries, and it is commonly performed as part of the work-up for bypass surgery. The cardiologist performing the procedure gains access to the vascular system by puncturing the femoral artery in the groin, and through that a catheter is advanced up to the heart. The puncture in my relative’s femoral artery bled profusely the night after the procedure. He bled so much that his heart stopped beating and his brain was deprived of oxygen for many minutes. He was ‘successfully’ resuscitated, and the puncture was repaired. When he woke, he was raving. He survived for another twelve years, raving.

One of our hospital chaplains told me how he was called to give the last rites to a ninety-five-year-old man brought to the emergency room by ambulance. He had dementia, and was a resident of a nursing home twenty miles away. He had become acutely unwell in the nursing home; when he stopped breathing in the ambulance, the paramedics administered CPR, because they were afraid not to. He arrived at the emergency room, a bruised corpse.

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.

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.