In our own post-Christian society, we have come to believe in a similar doctrine. But the sins are not those I learned about in my catechism as a child; the sins that cause death are not old-fashioned ones, such as avarice, sloth, gluttony, anger, lust and so on, but newer ones, such as smoking (now also an official Catholic sin), low fibre intake, lack of regular exercise, failure to take advantage of preventive measures against ill-health and ‘internalizing’ anger. Healthiness has become the new godliness.
TOO MUCH MEDICINE?
Many within medicine view with alarm the direction modern health care has taken. Much of what Ivan Illich predicted in the 1970s (and which was dismissed at the time) has come to pass. Many health economists believe that spending on medicine in countries like the US has passed the tipping point where it causes more harm than good. We have seen the rise in the concept of disease ‘awareness’, promoted, not infrequently, by pharmaceutical companies. Genetics has the potential to turn us all into patients, by identifying our predisposition to various diseases. Guidelines from the European Society of Cardiology on treatment of blood pressure and high cholesterol levels identified 76 per cent of the entire adult population of Norway as being ‘at increased risk’. This ruse of ‘disease mongering’ (driven mainly by the pharmaceutical industry) has identified the worried well, rather than the sick, as their market.
A growing resistance movement has taken root, with various strands to it, such as the Slow Medicine movement, founded in Italy in 1989, inspired by the Slow Food movement. At a meeting of the movement in Bologna in 2013, Gianfranco Domenighetti listed the characteristics of health systems as follows: ‘complexity, uncertainty, opacity, poor measurement, variability in decision-making, asymmetry of information, conflict of interest, and corruption’. The British Medical Association has backed a ‘Too Much Medicine’ campaign, which shares some of the aims of the Slow Medicine movement. The ‘Choosing Wisely’ campaign in the US has created an evidence-based list of medical interventions that are frequently futile and unnecessary.
The founders of the NHS naïvely believed that a free health-care system would result in a healthier society, and thus less demand for its services. Enoch Powell, who held office as a health minister, was among the first to point out the fallacy of this argument. Ivan Illich coined the term ‘Sisyphus syndrome’, meaning the more health care given to a population, the greater its demand for care: ‘I invite all to shift their gaze, their thoughts, from worrying about health care to cultivating the art of living. And, today, with equal importance, to the art of suffering, the art of dying.’
We cannot, like misers, hoard health; living uses it up. Nor should we lose it like spendthrifts. Health, like money, is not an end in itself; like money, it is a prerequisite for a decent, fulfilling life. The obsessive pursuit of health is a form of consumerism and impoverishes us not just spiritually, but also financially. Rising spending on health care inevitably means that we spend less on other societal needs, such as education, housing and transport. Medicine should give up the quest to conquer nature, and retreat to a core function of providing comfort and succour.
Julian Barnes’s 1989 novel, A History of the World in 10½ Chapters, concludes with a parable about immortality. The narrator wakes: ‘I dreamt that I woke up.’ He is attended by a woman, ‘like a stewardess on some airline you’ve never heard of’, who brings him the most delicious breakfast he’s ever eaten. It gradually transpires that he is in some form of paradisical afterlife, which will last for eternity. Every fantasy he has ever had comes true, and he indulges every desire he has ever had. He meets all the famous people he has ever admired, and even gets to have sex with them. (Barnes’s paradise echoes the afterlife promised to Islamist suicide-bombers.) He completes every round of golf with eighteen shots. Eventually, he runs out of new experiences. He discovers, to his dismay, that most of his fellow occupants of this paradise (‘Heaveners’) tend to choose a second death – oblivion. ‘It seems to me’, the narrator remarks, ‘that Heaven’s a very good idea, it’s a perfect idea you could say, but not for us. Not given the way we are.’
CHAPTER 10
Creatureliness
In our health, we have grand notions about how we shall face death, but it’s rarely as we imagine, or plan. Daniel Callahan listed the components of a peaceful death: ‘a death marked by self-possession, by a sense that one is ending one’s days awake, alert [my italics], and physically independent... a time when friends and family draw near, when leave can be taken...’ Christopher Hitchens, too, anticipated being conscious: ‘Before I was diagnosed with esophageal cancer a year and a half ago, I rather jauntily told the readers of my memoirs that when faced with extinction I wanted to be fully conscious and awake, in order to “do” death in the active and not the passive sense.’ Having witnessed the deaths of patients ‘fully conscious and awake’ (such as the man at Bradford Royal Infirmary, described in Chapter 1), I would not wish such an end on my worst enemy. When the end came, however, Hitchens had the modern cancer death, comatose for the last day or so. There were no Jamesian profundities or Voltairean bon mots.
‘The painful riddle of death’, wrote Freud, ‘against which no medicine has yet been found, nor probably will be... With these forces nature rises up against us, majestic, cruel and inexorable; she brings to our mind once more our weakness and helplessness.’ Perhaps the only sensible way of dealing with death is to accept this weakness and helplessness: what the philosopher Simon Critchley calls our ‘creatureliness’.
TO DIE LIKE A DOG
One autumn evening, some years ago, I found a dying fox in my garage. He barely acknowledged my presence, and made no attempt at fight or flight. I left a bowl of milk for him. When I returned the next morning, he was dead. I buried him in the garden. To ‘die like a dog’ is shorthand for a kind of death which is stripped of ‘dignity’, ‘spirituality’ and ‘meaning’, but animals – if left alone – die better than humans. They find a quiet corner, turn their face to the wall, and wait.
Somerset Maugham, during his years as a medical student, saw many people die: ‘And never have I seen in their last moments anything to suggest that their spirit was everlasting. They die as a dog dies.’ To ‘die like a dog’? I should be so lucky. I have observed that, compared to humans, the medical treatment of sick animals is characterized by common sense, humanity and realism.
Just a few months before he was diagnosed with cancer, Christopher Hitchens wrote an alternative Ten Commandments. His sixth commandment was: ‘Be aware that you are an animal and dependent on the web of nature, and think and act accordingly.’ I found this very poignant, not only because it is so true, but also because Hitchens forgot it when he became ill himself.
As a young man, Montaigne believed that the key to dealing with death was to study the Stoic philosophers of antiquity, and be guided by their teachings and example. He saw, however, that the local peasants, who were illiterate and knew no philosophy, died just as well as Socrates, and better than Seneca. Nature took care of them: ‘I never saw one of my peasant neighbours cogitating over the countenance and assurance with which he would pass his last hour.’ Tolstoy also observed that unlettered Russian peasant folk, the narod, accepted death as the will of God:
These people accept sickness and grief without question or resistance but calmly, in full certainty that this had to happen and could not be otherwise, it was all for the good... these people live, suffer and approach death with a tranquil spirit, more often than not with joy... a difficult, complaining and unhappy death is the ultimate rarity among the common people.
WHAT’S A LITTLE TROUBLE?
‘I don’t want to be a burden’ is a sentiment often expressed by people with worries about dying, but seldom, I have observed, by the dying themselves. Yet being a burden is what our creatureliness is all about, it’s what makes us human. Being a burden is the antithesis of contemporary atomization and aggressive individualism. We should want to be a burden to those who love us, and t
hey should want to bear that burden.
In Tolstoy’s The Death of Ivan Ilyich, the dying man becomes isolated from his immediate family, who maintain the pretence, almost to the end, that he will recover, that he is not dying. This loneliness compounds his suffering. Only Gerasim, Ilyich’s peasant servant, is willing to attend to his master’s bodily functions and suffering. He is not offended by the notion of cleaning his master; he understands creatureliness:
Gerasim alone did not lie; everything showed clearly that he alone understood what it meant, and saw no necessity to disguise it, and simply felt sorry for his sick, wasting master. He even said this once straight out, when Ivan Ilyich was sending him away.
‘We shall all die. So what’s a little trouble?’ he said, meaning by this to express that he did not complain of the trouble just because he was taking this trouble for a dying man, and he hoped that for him too someone would be willing to take the same trouble when his time came.
Philippe Ariès observed how increasing squeamishness around bodily functions was one of the factors that caused death to become ‘hidden’: ‘It is no longer acceptable for strangers to come into a room that smells of urine, sweat and gangrene, and where the sheets are soiled. Access to this room must be forbidden, except to a few intimates capable of overcoming their disgust, or those indispensable persons who provide certain services.’
When Susan Sontag was dying, the only person she could speak candidly to was a lowly nursing assistant – like Gerasim, one of ‘those indispensable persons who provide certain services’. The dying man needs to be cared for like a little child, and, like a little child, sometimes needs to be relieved of responsibility. Tolstoy described how Ivan Ilyich, too, wanted to be treated like a child: ‘At certain moments, after prolonged suffering, Ivan, ashamed as he would have been to own it, longed more than anything for someone to feel sorry for him, as for a sick child. He longed to be petted, kissed, and wept over, as children are petted and comforted.’
TURNING TO THE WALL
To ‘turn to the wall’ is an ancient, biblical, gesture of the dying. The dying withdraw from the living: ‘In those days was Hezekiah sick unto death. And Isaiah the prophet the son of Amoz came to him, and said unto him, Thus saith Jehovah, Set thy house in order; for thou shalt die, and not live. Then Hezekiah turned his face to the wall, and prayed unto Jehovah’ (Isaiah 38).
To ‘turn to the wall’ when dying was thought to be a sign of secret adherence to Jewish religious practices amongst the Marranos, the Jews of Spain and Portugal who were forcibly converted to Christianity during the Middle Ages. The dying, to this day, still turn to the wall. My father-in-law, in his final weeks, withdrew. His immediate family was hoping for some form of engagement, ‘closure’ or acknowledgement from him that he was dying, but his instinct was to slowly shut down.
Over twenty years ago, a close family friend became suddenly ill. She was admitted to hospital and was found to have multiple cancer deposits (‘metastases’) throughout her liver. She was a heavy smoker, so this cancer had probably originated in her lungs. She had lost her husband to cancer twenty years before; she knew how things went with this. A liver biopsy was performed, and the diagnosis was confirmed. The oncologist suggested chemotherapy; she declined. This gregarious woman turned her face to the wall, refused to see visitors and was dead within a few days.
The writer and critic Cyril Connolly, twenty-five years before his death, prescribed ‘a cure for the fear of death, to be taken logically’ for a woman friend who had expressed this fear. He, like Hume, quoted Lucretius to the effect that ‘Death therefore does not exist, neither does it concern us a scrap.’ Twenty-five years later, his friend Anthony Hobson noted in his diary: ‘He [Connolly] is dying without fuss or emotion, like an ancient Roman, philosophically, stoically.’ Connolly’s biographer, Jeremy Lewis, describes his last day: ‘...when Stephen Spender came to see him, very near the end, he turned his face to the wall and whispered “Who is it? Is it Stephen? Go away – I no longer belong to this world.”’
We turn to the wall, as animals do, as our ancestors did.
‘DEATH WITH DIGNITY’
Philippe Ariès was contemptuous of the modern approach to dying, which he thought too neat, too glib, an unwillingness to recognize and acknowledge the awesome power of death: ‘they propose to reconcile death with happiness’, he observed acidly. Modern Western culture seeks to package death, to manage and process it, to re-tame it, but in a modern way. ‘Death with dignity’ and a ‘good death’ have become the contemporary slogans and perceived entitlements, but what exactly do they mean? We all anticipate, and long for, ‘death with dignity’, a ‘spiritual’ death, but most people do not experience that. Dying not only dismantles our body, but also our personality and spirit. We expect too much of the dying. They are too tired, too spent, to be ‘spiritual’, to do ‘death with dignity’. The noble death, the spiritual death, is the exception. For this to happen, you need a unique personality and special circumstances. I am not at all sure what ‘death with dignity’ means. In the US, it has become a euphemism for euthanasia. In Britain, the phrase is routinely trotted out when assisted dying is debated. The hospice movement – so territorial over death – holds up ‘death with dignity’ or the ‘good death’ as its aim, but I don’t believe that we can prescribe a ‘good death’.
What elements are required for a dignified death? The phrase ‘death with dignity’ implies a recognition that dying has begun and the withdrawal of ‘active’ medical treatment. Dying in an ICU is for most people the antithesis of ‘death with dignity’, but, as we have seen, dying in an ICU is not as undignified as we imagine. Terror is undignified, but terror can be conjured away by the syringe-driver, so Ivan Ilyich’s three days of relentless screaming is now a rare experience.
A prerequisite of a dignified death is recognition and an acceptance, by the dying man, his family and his doctor, that death is taking place. This is not as easily dealt with as terror or pain, and many die without this recognition and acceptance. A logical progression from recognition and acceptance is the notion of leave-taking: the formal acknowledgement by the dying man that he must leave his family and this life, a handing over to those left behind. The leave-taking was a key component of the ‘tame death’ of the distant past, but is now vanishingly rare. The syringe-driver has rather done for last words. Nowadays we hope for a different kind of going: to die in our sleep. In the era of tame death, such a death – one without warning – was accursed: the mors repentina et improvisa.
There are more humble components of dignity, such as attention to, and tact around, bodily functions; an ambience in the ward of quiet and decorum – as I have shown, in general hospital wards this can be extraordinarily difficult to achieve. Modern medicine makes ‘death with dignity’ difficult and, for many, unattainable. The frail old woman sent in from the nursing home with pneumonia does not die with dignity in the resuscitation room of the Emergency Department. Dementia does not afford many opportunities at the end, for dignity – nor does technological brinkmanship. But above all else, ‘death with dignity’ is difficult because modern medicine does not regard care of the dying as a core aspect of its mission. Because so many of us die of chronic disease, it can be difficult to be certain when dying has begun. And any disease, at any stage, is potentially treatable: something – anything – can always be done, no matter how futile.
The notion of ‘death with dignity’ may be more for the benefit of families than for the dying themselves. It is not acceptable for family and carers to express irritation and impatience with the dying, but these emotions are commonly experienced. Caring for a dying person at home, perhaps for many months, is exhausting and tedious. For both the dying and their families, moments of tenderness (or even ‘spirituality’) are far fewer than the periods of despair, loneliness and terror. The dying may unsportingly fail to behave with dignity and courage; they may become, as Maugham observed, ‘selfish, mean, petty and suspicious’. ‘Death
with dignity’ may simply reflect an aspiration on the part of those witnessing death, for less mess, less odour. Death − or at least the process of dying – offends, as Tolstoy observed, our notions of propriety. In hospital, the dying fail to fit in with our timetables. Relatives, with their many professional and family commitments, are disappointed to learn that the doctor cannot predict the time of death with any great accuracy. The dying wax and wane in their dying: bad on Monday, a little better on Tuesday. Their courage waxes and wanes too: one day accepting and peaceful, the next consumed with terror and denial. Insight and acceptance, too, fluctuates. On Monday, the dying man may acknowledge that death is imminent, and that further treatment is futile. On Tuesday, however, he may become suddenly enthused about a novel anti-cancer drug, or a clinic in America with amazing results. The dying just don’t follow the script laid out for a ‘death with dignity’. But eventually, inevitably, nature, or the syringe-driver, takes control. If it is nature, the dying turn their faces to the wall, like any other animal. If it is the syringe-driver, they float away in a drug-induced oblivion.
Family members, too, may find their courage fails them when death is close. The more guilty the family member, the more likely they are to report a ‘spiritual’ experience: ‘he appeared to be asleep, but when I came in, he raised his hand, almost as if he was giving me his blessing’. Unlike my aunt, some relatives do not want to be with the dying man at the moment of death, and may resort to all sorts of delaying tactics, such as getting ‘stuck in traffic’, to miss that moment.
The Way We Die Now Page 19