The Way We Die Now (10 page)

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.