The Way We Die Now (11 page)

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:

C
ORONER
: Doctor, why did you not give this patient, with a known myocardial infarct, fibrinolytic therapy?’

D
OCTOR
: 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.