The modern acute hospital, where most of us are fated to end our days, is ill equipped to meet the needs of the dying. The culture, the ambience, the tone, is of haste, bustle, frayed tempers and a strange kind of giddiness. Big teaching hospitals have too many roles: these include dealing with the acutely ill, treating major (and minor) trauma, running out-patient clinics for the chronically ill, training medical students, doctors and nurses, carrying out clinical research, treating cancer, and so on and on. Care of the dying is not a priority. A Monday morning in such a hospital has the air of a chaotic small city. The needs of patients seem to come a poor second to those of the staff and the institution. Hierarchy, professional ‘turf’ and protocol are paramount, with different groups competing for the finite resources, such as beds, junior staff and theatre space. Such hospitals are self-perpetuating, loosely affiliated gatherings of rival professional groups.
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.
The first Francis Report (2010) contains hundreds of statements from patients and relatives. Here are some of the statements which made it into the newspapers:
‘Following a fall the patient was admitted to Stafford Hospital. When the patient requested a bedpan he was told by the nurse to soil himself as she was too busy to help...’
‘...his mother’s bed was left soaking in urine and she developed a number of bedsores. The emergency button was often left out of reach and her son had to leave work early to ensure someone was there to help feed her.’
The press did not report the fact that there were just as many complimentary comments from patients and relatives about the hospital:
‘On each of the six occasions when the patient attended Stafford Hospital, for hearing assessments and tests, he was dealt with in a “professional, courteous and timely manner” and has no complaints.’
‘Having contracted C.difficile [a bowel infection, usually caused by antibiotics] in the community, a male patient’s life was saved by two “brilliant young doctors at Stafford Hospital”. He also had several skin cancers removed, his left knee replaced and surgery on his ear. His wife had a hysterectomy and major surgery on her foot. They have always received excellent care at Stafford Hospital.’
All of these investigations concluded that care at the hospital was poor. The second Francis Report (2013) is a nuanced, detailed document, just slightly longer (at 783,710 words) than the King James Bible (783,137 words). Its conclusions, however, are predictably banal: ‘What is required now is a real change in culture, a refocusing and recommitment of all who work in the NHS – from top to bottom of the system – on putting the patient first.’ The report did, however, give some insight as to how care at Stafford got to be so bad. Staff numbers had been cut so the Trust could meet financial targets which would enable it to achieve Foundation Trust status; there were not enough Coronary Care, Intensive Care and High Dependency beds; relations between managers and consultants were poor. The report by the Healthcare Commission described how doctors were routinely diverted from sick patients on the wards to attending patients in the Emergency Department so that the hospital would not be in breach of a four-hour target. The politicians who expressed their shock and outrage over Stafford in parliament and in the media were often the very same politicians who had imposed this target culture on the NHS.
These accounts of unhappy experiences at Stafford Hospital bear an uncanny resemblance to George Orwell’s ‘How the Poor Die’ (1946), an essay recounting his spell in a Paris hospital, where he was admitted with pneumonia in 1929. In Orwell’s day, it was assumed that only poor people used public hospitals: ‘In the public wards of a hospital you see horrors that you don’t seem to meet with among people who manage to die in their own homes, as though certain diseases only attacked people at the lower income levels.’ Orwell had never been in the public ward of a hospital before, and his essay describes the daily horrors of such a place: ‘A hospital is a place of filth, torture and death, a sort of antechamber to the tomb.’
Although there was an understandable public outcry over these accounts of casual cruelty and neglect, what the media and the politicians got exercised about was the concept of ‘avoidable deaths’. The NHS used a statistical tool called the Hospital Standardized Mortality Ratio (HSMR) to calculate the number of expected deaths in any given hospital. This ratio is calculated by working out the risk of death associated with particular diagnoses; this risk, or ratio, is then ‘adjusted’, depending on the patient’s age, sex, social deprivation score and type of admission (emergency or elective). Using this ratio, it was calculated that more patients died at Stafford Hospital than the NHS average.
The HSMR statistical method was developed by the Dr Foster Intelligence Unit at the School of Public Health at Imperial College London, which founded a separate campus company to exploit its commercial potential. Many questioned the statistical methodology, including Paul Taylor, an expert in health informatics, who wrote an illuminating article, ‘Rigging the Death Rate’ for the London Review of Books. (The best information and analysis of medical issues is now found, not as one would expect, in the medical journals, but in literary magazines such as the LRB.) Taylor and several others demonstrated the crudity of this mortality ratio. It is subject to many biases and distortions, including in the accuracy of coding, the quality of local GP care, and access to hospice care. A commercial competitor of Dr Foster Intelligence, Caspe Healthcare Knowledge Systems (CHKS), advised another hospital – Medway – which also had a high HSMR. They advised the hospital trust that it had been ‘under-using’ the specific code for palliative care: by increasing the proportion of patients it coded as receiving palliative care, Medway lowered its HSMR dramatically.
The first Francis Report gave a summary of an independent assessment of the HSMR statistical method by two epidemiologists from the University of Birmingham, Professor Richard Lilford and Dr M. A. Mohammed: ‘our most crucial finding is that the methodology used to derive the Dr Foster SMR is riddled with the constant risk-adjustment fallacy and so is not fit for purpose.’ Even Roger Taylor, director of research at the Dr Foster Unit, lamented that the statistics had been ‘woefully poorly misunderstood’. He went on: ‘there is no figure for the actual number of people who might have died avoidably. It is impossible to put an actual figure on it.’
Although the public inquiries into Stafford Hospital were covered in some detail by the press, it was less widely reported that Dr Mike Laker of Newcastle University was asked by the Mid Staffordshire Trust to examine a number of cases where families felt that poor care had contributed to a relative’s death. He interviewed 120 families and examined 50 case-notes and concluded that poor care caused death in ‘perhaps one’.
Even Robert Francis, in his voluminous reports, concluded that no firm conclusions could be drawn from the hospital mortality figures. He acknowledged that unkindness, rather than a high death rate, was the main concern of those who had given evidence: ‘It was striking how many accounts I received related to basic elements of care and the quality of the patient experience, as opposed to concerns about clinical errors leading to death or injury.’ Yet the public, the media and the politicians now assume that any deaths above the national average must be the consequence of poor care, and thus, avoidable. The Guardian, in a piece by Denis Campbell headlined ‘Mid Staffs hospital scandal: the essential guide’, opens with the following statement: ‘An estimated 400–1,200 patients died as a result of poor care over the 50 months between January 2005 and March 2009 at Stafford Hospital.’ If the deaths were the result of poor care, somebody must be to blame, and there were calls for criminal prosecutions at Stafford. Peter Dominiczak in the Daily Telegraph reported in June 2013:
A review of deaths at Mid-Staffordshire NHS Foundation Trust by police and other officials has identified hundreds of cases between 2005 and 2009 where poor care could have led to deaths. Campaigners welcomed the announcement and warned that individuals ‘must be held to account’ to avoid another tragedy on a similar scale to Mid-Staffs... Politicians and campaigners have lamented the fact that no one involved in the scandal has so far faced any legal action.
So the Stafford Hospital scandal has now fixed an idea in the public consciousness of hospital death as a failure of medical care, on a par with an industrial accident, which automatically triggers an investigation by the Health and Safety Executive. This, combined with the demise of the Liverpool Care Pathway, has, at least temporarily, put into reverse the programme of enlightened care of the dying in acute hospitals in the UK.
The various Royal Colleges felt obliged to respond to the Francis Report. The response from the Royal College of Physicians, Putting Patients First: Realising Francis’ Vision, has the expected hand-wringing tone of such documents, with woolly aspirations about developing leadership among doctors, ‘helping to improve patient experience’, setting quality standards, improving training, and so on. There is a prevailing societal view that doctors and nurses must be more ‘accountable’ and (particularly in Britain) there are literally dozens of agencies, colleges and quangos charged with overseeing those who work in hospitals. The moral philosopher Onora O’Neill addressed this ‘accountability’ culture in her Reith Lectures in 2002, and observed that while in theory the new regulations make professionals more accountable, in practice they achieve little, except an increase in suspicion: ‘currently fashionable methods of accountability damage rather than repair trust’.
It is a curious statistic that, in Ireland, you are three times more likely to die in an Intensive Care Unit (ICU) than in a hospice. Death in an ICU is frequently held up as an example of the worst kind of ‘technological’ hospital death, but is this really true? The ICU, unlike the general ward, is above all else a controlled environment. Each patient has a designated nurse looking after them, and them alone. The consultant staff are on the ground. Any acute deterioration is detected quickly and acted upon. The squalor and chaos of the general ward is not in evidence: the ambience and ethos is different. The ICU in my hospital has a ‘quiet time’ between 12 noon and 2 p.m., when no ward rounds or procedures take place and the lights are dimmed. About one in five patients admitted to an ICU will die there, but in most such cases, ‘active’ treatment has been withdrawn in the days or hours leading up to death. ICU doctors are generally anaesthetists by training, and are thus particularly good at pain relief.
So dying in an ICU may not be the worst type of hospital death. This is not the case in the US, where elderly patients with dementia and metastatic cancer are routinely admitted to an ICU. One American ICU doctor, interviewed by Atul Gawande, remarked bitterly that she was running a ‘warehouse for the dying’:
Out of ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the ICU for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones... Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn’t want to die that way. But her children wouldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.
It has been said that in the US, only the very poor (and thus medically uninsured) manage to die with dignity. Intensive care is used much more sparingly in Britain and Ireland, but the inexorable trend is towards American-style ICU care. The average age of an ICU patient is sixty, but many patients in their eighties and even nineties are now admitted to ICUs, which would not have been the case when I trained in the 1980s. Doctors are also increasingly fearful of being labelled as ‘ageist’ by relatives and also by their geriatrician colleagues. Families, even those of the very old and frail, are increasingly demanding maximum intervention. This is exacerbated by media scare-stories about old people being denied ‘life-saving’ treatments.
Most hospital deaths, however, take place, not in the ICU, but in General Medical wards, which are sometimes chaotic, understaffed and overcrowded. These wards are occupied mainly by elderly, highly dependent patients, and often there are simply not enough nurses to look after them properly. Relatives complain bitterly of their loved ones not being fed, but would rarely entertain the idea of assisting the nurses in this task, as is common in other countries. And it’s a vicious circle: an overstretched nurse, lacking leadership, faced with very dependent elderly patients and complaining relatives, may quickly burn out and get through the shift doing the bare minimum. Many of the very nurses the system really needs – those with decades of ward experience – have left to pursue nine-to-five jobs as specialist and out-patient nurses, leaving the heavy lifting to the young and the inexperienced.
Patients in these general wards fall into the following three categories: first, the acutely ill; second, the ‘medically discharged’ (previously known, uncharitably, as ‘bed blockers’) – old folk who have recovered from their acute illness but who cannot go home and are awaiting ‘placement’ in a nursing home; and third, the dying. The acutely ill patients, understandably, are the priority for the nursing and medical staff. A single acutely unstable patient commonly distracts attention from the other patients: when staff and resources are limited, these other patients may be neglected.
There are different kinds of hospital death: the rapid, acute death, caused by some sudden catastrophe such as a heart attack or a stomach haemorrhage; the semi-acute death, which occurs over weeks, from a chronic illness such as liver cirrhosis; and the slow, lingering death, such as that which eventually overtakes patients with dementia or a stroke. Ideally, patients who are acutely unstable should be treated in the Intensive Care Unit or a High Dependency Unit (a sort of halfway house between an ICU and a general ward), but beds are too few to accommodate the growing demand, so the ICU doctors can only take the very sickest.
Without exception, the worst type of hospital death is the acute death on the general ward. The patient might not be recognized initially as being sick enough to require ICU admission, or there may simply be no ICU beds. The nurse may have several other sick patients to attend to, and the first port of call for medical help is often an inexperienced and terrified intern. There is inevitably, at the end, a gruesome scene at the bedside following the unsuccessful resuscitation attempt.
Most of the deaths I witness are semi-acute or chronic. By far the commonest cause of this kind of death in my practice is from liver cirrhosis. Death in this particular group of patients is particularly difficult for people to comprehend: most of the patients are young (under fifty); the disease is ‘not cancer’; there is a known ‘cure’ (liver transplantation). Unfortunately, most patients admitted to hospital with liver failure caused by alcoholic cirrhosis do not qualify for a transplant; you have to have demonstrated abstinence from alcohol for a minimum of six months, and (paradoxically) you have to be well enough to undergo the operation – so, for example, you have to overcome infection or kidney failure first. Liver transplantation is therefore for a very select few: if you survive the liver failure and stop drinking, you generally don’t need one; if you go back to drinking alcohol, you don’t qualify for it; if you’re too sick, you can’t have it. Thus liver transplantation is reserved for that minority who, despite giving up alcohol, develop recurrent liver failure, but recover sufficiently from these bouts to undergo the transplant operation. Most of my patients with alcoholic cirrhosis continue drinking, and die, sooner or later, of liver failure.
Over many years, I have become better at predicting those of my liver failure patients who will live, and those who will die. (I may be deluding myself in this regard, because several studies have shown that doctors are woefully inaccurate at predicting survival time in dying patients: they generally overestimate.) This art of prediction is a mixture of science (clinical risk scores), experience and intuition. It can be difficult, however, to persuade families that the overwhelmingly likely outcome is death. The family of the woman with liver failure I described in Chapter 1 never accepted my prognosis, a refusal which only added to the discomfort and distress of the dying woman. These patients rarely die in a hospice or at home. Most die on the acute ward, or in the ICU, after weeks, or even months, of uncomfortable and invasive treatment. Death from liver failure can be nasty and undignified, particularly if bleeding is the final insult. Luckily, most slip into a coma and are unconscious for several days before their death. I have witnessed the deaths of dozens of patients with liver cirrhosis; those who knew and understood what was happening, and who opted for a non-interventionist approach, were rare indeed.
The family of one patient of mine did however take my advice, and gave their son a peaceful death. He came under my care many years ago, when I worked in Yorkshire. He was only thirty-five, and had several admissions with liver failure. He had a degree of intellectual disability, and could not truly comprehend what was happening to him. The origins of his alcohol dependence were sad, and slightly comic. Education and work had passed him by, and the only environment where he felt truly accepted was the local pub. Although he had the mind of a child, he learned certain manly phrases, and was adopted by the hard-drinking pub regulars as a sort of mascot. He had neither the insight nor the motivation to stop drinking. During his last admission, it became clear that he would not recover. I spoke to his devoted father, and advised him that intensive care had little or nothing to offer and that we should aim for comfort. To my relief, the father agreed, and the family spent the last night at the bedside, praying. Many patients and families, however, cannot embrace what they regard as ‘giving up’. Liver cirrhosis is a perfect example of how the modern practice of pushing treatment to the limit can go wrong.
The American medical ethicist Daniel Callahan has defined the term ‘technological brinkmanship’ as:
A powerful clinical drive to push technology as far as possible to save life while, at the same time, preserving a decent quality of life. It is well recognized by now that, if medical technology is pushed too far, a person can be harmed, that there is a line that should not be crossed. I define “brinkmanship” as the gambling effort to go as close to that line as possible before the cessation or abatement of treatment.
This sounds good in theory, but Callahan identified the obvious limitation of this strategy:
In particular, brinkmanship fails to reckon with two potent realities, each of which conspires to make it hard to locate the point at which the brinkmanship should stop, and just as hard to work up the will to stop once this point has been identified. The two realities are the vanishing line between life and death, which makes it difficult to determine when to stop the use of technology, and the continuing profound public and medical ambivalence about what is wanted and valued in coping with illness and dying.
Callahan’s ‘vanishing line between life and death’ simply refers to the difficulty in being sure, in a patient with a chronic disease, when the process of dying has started. This vanishing line, this difficulty, contributed to the demise of the Liverpool Care Pathway in 2013. Medicine is, and always has been, messy, imprecise and uncertain. And nothing is as messy, imprecise and uncertain as predicting death.
The GP and writer Iona Heath asked: ‘Why is it that so few of our patients die what would be recognized or described as a good death?’ She goes on to recount a patient’s story:
Some years ago, an elderly patient on my list was admitted to hospital after she collapsed. She was in her late eighties, a widow and very frail. She was admitted to a coronary care unit and received the highest possible standard of care including fibrinolytic treatment [‘clot-busting’ drugs] delivered according to the latest evidence-based guidelines. She made a good recovery and was discharged home, apparently well, a week later. I went to see her and found her to be very grateful for the kindness she had been shown but profoundly shocked by a course of treatment that she perceived to be completely inappropriate. She explained to me that not only her husband but almost all her generation of friends and acquaintances were already dead, that her physical frailty prevented her from doing almost all the things that she had previously enjoyed and that she had no desire to live much longer. No one had asked her about any of this or attempted to discover whether the effective and therefore recommended treatment for her condition was appropriate in her particular case. She died three weeks later while asleep in bed.
Let us for a moment examine Heath’s assertion that someone should have carried out what can only be described as an existential assessment of this old lady before giving fibrinolytic treatment. The patient was almost certainly treated by a busy, shift-working junior doctor, and the old lady was one of perhaps dozens of acute patients seen on that shift. It is rather fanciful to imagine that in such circumstances, an assessment of the patient’s sense of herself and her situation would be a priority. Furthermore, a decision to deny such a patient ‘clot-busting’ treatment could easily be construed as ageist – even the normally sensible Raymond Tallis (geriatrician and philosopher) has labelled doctors who do not treat the old as actively as they treat the young as ‘scoundrels’. It is an absurd suggestion that an on-call junior doctor should take such a professional risk. Even if the old lady – after the detailed existential assessment suggested by Iona Heath – was happy to reject such treatment herself, it is not unknown for relatives to emerge after the patient’s death, demanding to know why their loved one was denied potentially life-saving procedures. One can imagine the scene at the inquest:
CORONER: Doctor, why did you not give this patient, with a known myocardial infarct, fibrinolytic therapy?’
DOCTOR: Well, I had a long chat with her, and it emerged that she had lost not only her husband but almost all her generation of friends and acquaintances were already dead, that her physical frailty prevented her from doing almost all the things she had previously enjoyed and that she had no desire to live much longer. That being the case, I decided that fibrinolytic therapy was inappropriate.
The Sun newspaper reports on the case: ‘Nan dies after doc denies her clot-buster’.
I admire Iona Heath: she has been an eloquent critic of the excesses of modern medicine, and her contribution to the debate on assisted suicide has been refreshing and challenging. She fails, however, to comprehend the reality of being a junior doctor on-call for a Coronary Care Unit in a busy general hospital. General practice has changed dramatically in the last twenty years or so. GPs no longer provide out-of-hours care for their own patients, as they did in the past. It is rather disingenuous of family doctors, therefore, to criticize the less than holistic care provided by hospitals when they have delegated their own out-of-hours responsibility to cooperatives and deputizing services. If Iona Heath was so concerned about her elderly patient, she could have exercised her right as the patient’s GP to resist her admission to hospital and simply have treated her at home, in her own familiar environment, without the clot-busting drugs and other nasty things doled out by the uncaring hospital. The Coronary Care Unit should not be expected to provide spiritual guidance.
Heath’s criticism of acute hospital care is symptomatic of a wider societal issue: acute hospitals are criticized, with some justification, for failing to care properly for the dying, yet society has handed over most of the responsibility for care of the dying to these very same hospitals. Nursing homes commonly send dying patients into emergency departments because it is much easier for them, administratively and legally, if the patient dies in hospital: no mess, no questions from troublesome relatives, no possibility of inspections by government agencies, no death certificate to fill in. Let somebody else take responsibility.
Acute hospitals have become a dustbin for all sorts of societal problems, not just dying. As a consultant on-call for acute ‘unselected’ General Medicine, I commonly admit elderly people whose only problem is that they can no longer live independently. I have admitted women whose only problem is a violent husband. I have even admitted an elderly man who simply wanted free accommodation while his house was being redecorated. If we, as a society, treat acute hospitals as dustbins for all sorts of non-medical problems, we should not complain if these hospitals begin to look and feel like, well, dustbins. The doctors and the hospitals did not ask for these problems – society was quite happy to hand them over, as long as the problems could be given a medical gloss. And the greatest of these problems is death. Ivan Illich assumed that ‘medicalization’ is something doctors actively seek, to enhance their power. But he was wrong. Medicalization does not empower doctors: they suffer.
Ireland has a long and unedifying tradition of medicalizing social problems. At one period in the mid twentieth century, the country had proportionately more people (2 per cent of the entire adult population) in long-term psychiatric care than Stalin’s Soviet Union. Many of these ‘patients’ had no psychiatric illness as such. Some were simply troublesome: spinster sisters who needed to be got rid of to make way for the new wife on the farm, delinquent teenagers, and so on. The Irish public was quite happy with this state of affairs, although there was much public hand-wringing when the late Mary Raftery made a television documentary on the subject.
Some relatives I have dealt with believe that acute hospitals should function almost as a branch of the prison service, and detain against their will all sorts of people – mainly the elderly, but also other groups, such as alcoholics and anorexics. I find myself constantly, and wearily, telling my juniors and ward nurses that we work in a hospital, not a prison. Some years ago, an alcoholic patient of mine was discharged after treatment for a chest infection. Her family phoned me up to express their outrage that I had willingly and knowingly sent home a woman who would start drinking again. I explained that this was regrettable, but the patient had made her choice, which I had to respect. They threatened to report me to the police, the Irish Medical Council and, most tellingly, to the Joe Duffy Radio Show. (This show affords the Irish public the opportunity to let off steam about any sort of perceived injustice.) I offered to give them the contact details for all three agencies, and never heard from them again.
A seventy-year-old woman was brought in to the Emergency Department one Sunday afternoon some years ago when I was on General Medical ‘take’. She lived alone, in conditions of absolute squalor, surviving somehow on a diet of cigarettes, strong tea and whiskey. The ambulance had been summoned by well-meaning, concerned neighbours and relatives. One of the ambulance crew told the medical staff in the Emergency Department that the woman lived in ‘the worst conditions he had seen in twenty years’. I talked to the old woman, and concluded that there was no medical problem as such and, more importantly, that she had the mental capacity to make her own decisions. After a day or two on the ward, when she was fed and cleaned up, she told me, clearly and pointedly, that she wanted to go home – to her own squalid house, not a care home. I explained to her that I was happy for her to go, but that her neighbours and relatives might not be so happy. Anticipating trouble, I made sure that one of my geriatrician colleagues assessed her mental capacity, and he agreed that this woman was compos mentis. She discharged herself from hospital: I made it clear to the nurses and junior doctors that she was not to be impeded in any way – she had made her own decision on the matter.
Her neighbours and relatives viewed the acute hospital as the correct sorting-house for this woman’s existential problem, or perceived problem. I reflected that they never entertained the option of going in to clean up her house themselves or cooking her a hot meal. Clearly, these were services that the state should provide. And the best way to grab the immediate attention of the state was to bundle this poor old woman into an ambulance and land her, on a Sunday afternoon, in the Emergency Department, where she would be accommodated, against her will, on a trolley. My role was that of jailer, not doctor. Inevitably, the neighbours and relatives prevailed: she was sent back into hospital by ambulance, and eventually agreed reluctantly to go from there to a nursing home.
What has all this to do with dying? My point is this: society has thrust onto doctors and hospitals the messy, intractable and insoluble aspects of life, such as old age and death. We are now also expected to police lifestyles that others disapprove of. After all my years of practice, I am still astounded that families expect me to solve the existential problem of being old and no longer independent. Many families, who know, deep in their hearts, that an elderly parent cannot continue to live independently, wait for some acute illness to occur, when this problem then becomes the hospital’s. The acute illness is generally overcome in days, yet the patient may languish in hospital for months, while the paperwork governing their existential dilemma is slowly worked through.
I obstinately cling to the notion that a doctor’s role is limited: our job should be the treatment of illness. When we go beyond that – when society forces us to go beyond that − we suffer. The general public, the media and politicians constantly complain about general hospitals. They would profit by looking at themselves, and by examining what they ask of such institutions.
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The medicalization of death was a gradual process. Philippe Ariès listed the various historical forces that led to it, one of which was the rise of the hospital. Most hospitals in Britain and Ireland began as infirmaries attached to workhouses. Hospitals were, as George Orwell observed, where the poor and the destitute went to die. St Finbarr’s Hospital in Cork began as such a workhouse: it is now a geriatric hospital. I can recall older patients begging me not to send them to ‘The Union’, as the old workhouse was called. Right up to the middle of the twentieth century, wealthy people were treated at home – operations such as appendicectomies were commonly performed by surgeons in private houses. Gradually, however, hospitals – particularly the ‘voluntary’ ones, which were outside the control of the municipal authorities – got better and the middle classes began to go there to get treated and, eventually, to die. Cutting out an appendix on the kitchen table was no longer the acceptable standard of care. Philippe Ariès described how the hospital began to take over the community’s role in the care of the dying: ‘the hospital has offered families a place where they can hide the unseemly invalid whom neither the world nor they can endure... The dying man’s bedroom has passed from the home to the hospital.’
Acute general hospitals provide a great critical mass, not only of doctors and nurses, but also of equipment, facilities and ancillary services. And no matter what happened at the Stafford Hospital, a large acute general hospital is still the safest place to be if you are acutely ill, especially if that illness is complex and life-threatening. GPs no longer deliver babies or set broken bones. Private hospitals, although they provide single en suite rooms, appetizing food and good parking, are no place for the acutely ill.
So: large acute general hospitals are the best place to be when you are very sick but not the ideal place in which to die. Yet that is where most of us are destined to spend our last days and hours. Is there a better option?