The Way We Die Now (9 page)

Medical students throng the overcrowded wards. Frail, sick, elderly people lie on trolleys, in full public view, in the main corridor of the emergency department. These pilgrims are seen and assessed by harassed, sleep-deprived, junior doctors. The doctors, from different teams and departments, sometimes argue bitterly over who is going to ‘take’ such patients.

Public hospitals are plagued and fettered by bogus notions of egalitarianism, which ultimately does a disservice to patients. The overwhelming impression from the various reports into the Stafford Hospital scandal in Britain was that nobody was in charge. The Francis Report on the Stafford scandal observed of the Trust board at that hospital: ‘It was necessary for directors to roll up their sleeves and see for themselves what was actually happening.’ There is much talk in state-funded health systems of ‘clinical governance’ and ‘accountability’, but on the wards leadership is conspicuously lacking.

The idea of ‘death with dignity’ in this sort of milieu is almost laughable. Peace and decorum are hard to find. Even locating a quiet room to talk to the patient and their family can be impossible; the day-room occupied by medical students, the sister’s office used for the nursing handover. I have sometimes been disturbed, while at a key moment of the difficult conversation with dying patients and their families, by cleaners and porters, oblivious to the situation, intent only on completing the task at hand. Television sets and radios are set at maximum volume. Meals are often left uneaten, the patients too weak to sit up, the nurses too busy with more pressing demands to feed them.

Perhaps this lack of decorum reflects the age profile of those working there: many nurses, and most junior doctors, are young – often less than thirty. Decorum does not come naturally to the young. Young undertakers always look slightly out of place, like a bad actor in an amateur production. When I was a boy, young priests were common in Ireland. I always found them slightly absurd: being called ‘Father’ by old ladies, looking solemn and wise at the altar. Now I know that most of them felt anything but wise. The young too easily forget that a hospital is a place for the sick and the dying. And hospitals, no matter what American television comedy shows would have us believe, are not environments bursting with humorous possibilities. Kieran Sweeney, while dying of cancer, attacked the culture of jokiness in hospitals:

Please can we avoid crass attempts at humour? There is nothing funny about clutching a plastic bag with all your clothes in, except your pants, socks and shoes – just stop and think what that must be like – while trying to secure a hospital gown around you, and following, like some faithful gun dog, a radiology attendant who without introduction commands you, with a broad grin to acknowledge his witty lack of grammar, to ‘follow I!’

Christmas is excruciating in this regard: for two weeks, many hospital staff behave like five-year-olds who have had too many fizzy drinks.

There has been an attempt in recent years to apply hospice principles to the treatment of patients dying in acute general hospitals, to make them ‘hospice-friendly’. In Ireland, a glossy policy document,
Quality Standards for End-of-Life Care in Hospitals
has a foreword by former President Mary McAleese, who writes: ‘the end of life is something deeply profound’. The programme lists various standards, the first and most important being ‘that end-of-life-care is central to the mission of the hospital and is organized around the needs of patients’. The glossary helpfully defines death for us: ‘the state or condition of being without life, animation or activity’. Various celebrities have supported the campaign, and branding has been important, with a vaguely Celtic logo, which, when displayed on the ward, indicates a recent or impending death. The intention is that the presence of this symbol, placed on a table outside the room, should alert staff and visitors to be quiet, to behave with decorum. ‘But’, said a very experienced ward sister to me, ‘isn’t that how you’re supposed to behave
anyway
?’ The programme, despite its celebrity endorsements and ‘brand’, has not greatly altered the quotidian realities of hospital life. ‘Well-intentioned but ineffective’ is the withering assessment from those on the front line. Reading this document reminded me of a priest who was a curate in my local parish when I was a boy. He had great difficulty with sermons, finding it almost impossible to conjure something original on a weekly basis. Sometimes he would become tongue-tied and couldn’t think of anything to say. On these not infrequent occasions he would fill the embarrassing silence with this phrase: ‘God wants ye to be as good and as kind as ye possibly can be.’

The Liverpool Care Pathway (LCP) was introduced in the NHS with the best of intentions. This ‘Pathway’ was so-called because it was developed by palliative care physicians in that city. The idea was to apply hospice principles to the care of the dying in acute hospitals, to recognize that the process of dying had started, and to protect the patient from futile and uncomfortable medical interventions. The Pathway is, like much medical care in the NHS, guided by a detailed and proscriptive protocol, an ‘algorithm’, which dictates precisely what to do in any given situation. Although the Pathway did not explicitly advise the withdrawal of food and drink, there was a common perception that it did, with the inevitable accusation that the patients were being ‘starved to death’ or ‘dying of thirst’. The Pathway simply recommended ‘daily assessment of the need for clinical hydration and nutrition’. Some doctors and relatives were genuinely concerned that patients were put on the Pathway inappropriately – they weren’t actually dying. Once on the Pathway, it was difficult to take a patient off it: the doctor looked vaguely ridiculous. A study found that 3 per cent of patients actually improved when they were put on the LCP. Paradoxically, this phenomenon, in some cases, could be the result of the withdrawal of intravenous fluids and nutrition in patients who, before being placed on the Pathway, had been given too much intravenous fluids and food by tube-feeding.

Nutrition has become a cause of ethical difficulty in acute hospitals. Doctors and nurses are bombarded with exhortations to screen for, and treat, malnutrition in hospital patients, particularly the elderly. All quite laudable, but very often such enthusiasm spills over into hysteria, with old, frail, sometimes dying patients subjected to tube-feeding, when a more hands-off approach is appropriate. Speech and language therapists (whose remit, as well as speech and language problems, includes difficulties with swallowing) constantly scrutinize these patients for any signs of ‘unsafe swallowing’, which places even greater pressure on doctors to tube-feed. The general public, not surprisingly, has become somewhat puzzled by all this: a patient might have been pressured initially into having tube-feeding, and then, if placed on the Liverpool Care Pathway, this form of nutritional support was immediately stopped. Modern hospital care seems to swing from one violent extreme to another: in a matter of days, a patient may be switched from PEG feeding to ‘Nil by Mouth’. Despite all this concern about nutrition, food is often neglected. The NHS now spends more money on artificially produced ‘nutritional supplements’ than it does on food. Dieticians and speech and language therapists tend to focus solely on one aspect of a patient’s treatment (nutrition and swallowing, respectively), and thus do not always see the bigger picture.

The doctor and broadcaster Michael O’Donnell wrote about his wife’s death in the
British Medical Journal
: ‘Having watched my wife, whom I loved dearly, endure attenuated “ethical” death by starvation and dehydration, I find it difficult to see the moral distinction between starving people to death and helping them end their own lives.’

I accept that the dying no longer need much in the way of food and drink, but the authors of the Pathway grievously underestimated the symbolic importance of feeding. Giving a dying man a little water or a spoonful of yoghurt achieves little from a nutritional perspective, but for the dying themselves and those attending them, it gives comfort and intimacy. A patient of mine, a man aged ninety, was approaching death after a series of acute events, including bleeding and infection. I found, to my dismay, that he had been assessed by a speech and language therapist and found to have an ‘unsafe swallow’, and was therefore, inevitably, put on ‘nil orally’. I tried to explain, as gently as I could, to the nursing staff that the man was dying, and that any putative risk of aspiration was irrelevant. This obsession with ‘unsafe swallowing’ is symptomatic of the safety culture that is pervasive in acute hospitals: eliminating risk, no matter how remote, is more important than humane care, even of the dying, for whom ‘risk’, self-evidently, is no longer relevant.

For most dying people, however, the Pathway seems to have worked well: it completely altered the approach to their care, protecting them from futile treatment, and ensured that pain and other distressing symptoms were properly treated. Two large audits of the Pathway, however, showed that the Lie is alive and well: most patients on the Pathway did not know they were dying, and only around half knew the details of their diagnosis.

Genuine concerns about a small minority of patients inappropriately put on the Pathway were cynically seized on by the press, who accused hospitals and doctors of carrying out involuntary euthanasia, incentivized by cash bonuses. (In the target-driven NHS, hospitals were actually given bonuses for reaching specific targets on palliative care; one such target was the percentage of dying patients placed on the LCP.) Professor Mike Richards, the NHS’s National Clinical Director for Cancer and End of Life Care, tried to allay public concerns: ‘There is one over-arching message which the National End of Life Programme wants to emphasize to clinicians and to those with a relative who might be placed on the Pathway: the LCP has improved and continues to improve care of the patient in the last days or hours of life.’

Professor Richards’s memo failed to reassure the press and the politicians, and a hastily convened parliamentary inquiry, chaired by Rabbi Julia Neuberger, recommended the scrapping of the Pathway. Neuberger’s report,
More Care, Less Pathway
, is commendably brief and well-written. She concluded that when the Pathway was operated by well-trained and well-resourced clinical teams, it worked well. Where care was already poor, the LCP had been used as a tick-box exercise. Neuberger observed that the word ‘pathway’ is misleading, as it suggests a road going somewhere. She sensibly suggested dropping the word ‘pathway’ in favour of the more neutral term ‘end of life care plan’. Some relatives clearly believed that the Pathway represented a decision by doctors to kill their dying patients. Rather bravely, Neuberger concluded that if we don’t have a proper national conversation about dying, doctors and nurses will become ‘the whipping boys for an inadequate understanding of how we face our final days’.

The relatively few failures of the Pathway had fatally contaminated the ‘brand’ in the mind of the public. Why did it fail? Most people nowadays die after a long illness. It can be difficult, therefore, to be sure when a patient has moved from having a chronic illness to dying, or ‘actively dying’, as the oxymoronic term has it. Some patients were probably put on the Pathway too early; others should never have been put on the Pathway at all. The vast majority of patients, however, were put on the Pathway correctly, and had an easier death because of it.

Poor communication was at the root of virtually all complaints about the LCP. The tick-boxy forms which had to be filled in on a daily basis once the patient was placed on the Pathway gave the impression of a one-size-fits-all exercise. A palliative care physician told me: ‘the Pathway looks like it was designed by a doctor with the mind of an engineer.’ Before palliative care emerged as a speciality, symptom control for dying patients was haphazard and unstandardized, with many mavericks creating their own set of rules. When evidence-based palliative care emerged, it brought in an era of protocols, guidelines and audits, along with forms – lots of forms. But dying people did benefit. The mistake was to prescribe for populations, not individuals.

The history of the Pathway shows the difficulties faced by doctors working in acute general hospitals. We are simultaneously accused of being too interventionist and invasive in our treatment of the dying, and too hasty in putting patients on a palliative pathway and the syringe-driver. The media – particularly the newspapers – managed to reduce a difficult and complex debate to shouty, hysterical headlines.

Perhaps the greatest quantity of misinformation relating to death in acute hospitals emerged from the Stafford Hospital scandal. This episode is only one of a long line of NHS scandals dating right back to Ely Hospital in Cardiff in 1967, through to Bristol and Alder Hay Hospital in Liverpool. I worked in the NHS for fourteen years; I am, on the whole, proud to have done so. But it seems to me that the NHS, every decade or so, requires a ritual blood sacrifice. These scandals allow politicians to grandstand about patients being ‘at the centre of the NHS’, and after the inevitable prolonged and expensive public inquiries, and much worthy and contrite admissions of failure, it’s back to business as usual.

The Stafford story unfolded slowly and innocuously. In September 2007, Julie Bailey complained about the care received by her eighty-six-year-old mother who had died at the hospital. Dissatisfied with the hospital’s response, Bailey set up a local protest group called ‘Cure the NHS’. Many other relatives of patients who had died at Stafford Hospital came forward, and the group met at a local café, which set up a wall with photographs of the dead. The group – and others – raised concerns about mortality rates at the hospital.

There is no doubt that care at Stafford Hospital was poor, that cruelty and neglect were common. I suspect, however, that this hospital was no better or worse than many NHS hospitals; it was probably just the dog that got a bad name. In total, there were five official investigations into care at Stafford: the first, in 2009, was carried out by the Healthcare Commission. The Department of Health commissioned two inquiries: one by the national director for acute care, and one by the national director for primary care. Sir Robert Francis, an eminent medico-legal barrister, chaired an independent inquiry, which reported in 2010. The families of patients who had died at Stafford complained that the hearings of this inquiry should have been in public. The then Labour government responded to this pressure by commissioning Francis to undertake another – public – inquiry, which sat for two and a half years, and published its final report in 2013.