Every Third Thought Page 15

  A small silence intercedes. ‘What will happen when I go?’ he wonders aloud, possibly for my benefit. ‘I don’t know.’ He pauses. ‘I’ll be glad to be remembered at all.’ Another pause. ‘I’ve seen some very gifted people destroy themselves.’ A final pause. ‘I’ve had a lucky life. That includes five years I didn’t expect to get.’

  Meanwhile, awaiting his next rendezvous with Addenbrooke’s, he is reflecting on all the fine words that ‘poets and philosophers have used to mark the path into the killing ground.’ His own last lines from ‘Sunset Hails a Rising’ run on:

  No supernatural powers

  Need be invoked by us to help explain

  How we will see the world

  Dissolve into the mutability

  That feeds our future with our fading past:

  The sea, the always self-renewing sea.

  The horses of the night that run so fast.

  As I prepare to say goodbye, Clive comes up with a valedictory line that leaves David Hume in his dust: ‘You can always say that you’re on your last legs, but the way you say it might equally suggest that you can run a mile in your socks.’

  17

  STARING AT THE SUN

  ‘It is not death, it is dying that alarms me.’

  Montaigne

  Last night, I spoke to M about a mutual friend who was, she said, ‘not very well’, a euphemistic phrase freighted with unspoken anxiety. On the many approaches to the grave, language absorbs a lot of our sorrow. In the course of this year devoted to ‘third thoughts’, I’ve noticed a declension in our conversations about the old. We start out by saying so-and-so has ‘had to see a doctor’ or ‘has been having treatment’. Then we might say that we hear so-and-so is ‘on the mend’, or is perhaps ‘having tests’. If things turn out not to be ‘fine’, we’ll report that X or Y is ‘in a bad way’, or even ‘looks frightful’. This can open the floodgates. When we spoke last night, after a few moments of discretion, M suddenly said, ‘You know that they’ve stopped treatment. B says he’s dying . . .’

  According to La Rochefoucauld, ‘Neither the sun nor death can be looked at steadily.’ With half-closed eyes, we can try, but not even the remorseless intrusion of routine mortality can ever quite prepare you for the thing itself, that death in the family, or the unexpected loss of a colleague. I have an image in mind that, at such moments, death becomes like an indifferent electrician switching off the lights in the deserted stadium of the human soul.

  ‘There is nothing you can do’, writes Nora Ephron. ‘Nothing. Everybody dies. Death is a sniper. It strikes people you love, people you know, it’s everywhere.’ When the human hourglass runs out, it is one experience of ageing to become progressively more familiar with the dramas and rituals of death and dying. It’s certainly the end of the road. My friend, K, a popular novelist, says that her tombstone will have this simple inscription: ‘Finally, a good plot.’

  As we approach these final moves in the endgame, it’s as well to be prepared for what’s in prospect, even if we know that this experience is likely to be as strange, disturbing and unpredictable as life itself. The Guardian of 3 February 2016 published a moving account of one typical British death:

  My father spent 10 days dying. He was 84 and he had lost his wife – my mother, whom he adored, and without whom he felt life was a lot less worth living – three years earlier. He died of old age, and it was entirely natural.

  The process, though, did not feel that way at all, at least not to me. Dad had been bedridden for months and was in a nursing home. He stopped eating one day, then started slipping in and out of consciousness. Soon he stopped drinking.

  For 10 days my sister and I sat by his bedside, holding his hand, moistening his lips. Slowly his breathing changed, became more ragged. During the last few days, the tips of his fingers turned blue. His skin smelled different. His breath gradually became a rasp, then a rattle.

  It sounded awful. We were sure he was in pain. The doctor reassured us he wasn’t; this was a human body dying naturally, shutting down, one bit at a time. We had not, of course, talked about any of this with Dad beforehand; we had no plans for this, no idea of what he might have wanted. It would have been a very difficult conversation.

  The doctor said he could give him something that would make him at least sound better, but it would really be more for us than for my father. ‘My job,’ the doctor said, ‘is about prolonging people’s lives. Anything I give to your father now would simply be prolonging his death.’

  So we waited. When it finally came, death was quite sudden, and absolutely unmistakable. But those 10 days were hard.

  Humanity’s association with death can become strangely therapeutic. Another resonant irony: the contemplation of mortality can re-enfranchise older patients into a world of feeling from which, through prudent self-protection, they may have become detached. In Donne’s bleak formula, expressed in Meditation 17 of Devotions, ‘No man hath affliction enough that is not matured and ripened by it.’

  As I renewed my scrutiny of life in extremis, I returned to a familiar moment in the endgame – the conduct of palliative care. I found myself, as a moth to a flame, drawn back to the Cambridge hospice I had first visited as long ago as 1993, and written about in My Year Off, as the guest of the then medical director Dr Tim Hunt.

  Arthur Rank House is a pleasant single-storey pale-brick building tucked away in the grounds of Brookfield Hospital, on the edge of Cambridge city centre. In a new century, it’s easy to forget the contemporary revolution in attitudes to our mortality. At first, when it was opened in 1981, the hospice was the object of prejudice and fear. Neighbouring households, who were spooked by the idea of death and dying on their doorstep, demonstrated against it as a health risk, protesting that the inmates and their ambulances would be contagious. Thirty years on, there’s a new battle to be fought: some local residents are up in arms against the building of a mosque. While Islam was reaching Cambridge, the hospice movement came of age. There is now a national association (Hospice UK), and Arthur Rank House is just completing the process of moving to a £10.5 million purpose-built facility in the Gog Magog hills, on the outskirts of Cambridge.

  Today, however, I am returning to the old building, marvelling anew at the cheerful informality of its atmosphere. Such kindly and relaxed warmth, in stark contrast to the chilly realities of death, must come from deep inner resources: friendly smiles are a vital bulwark against tides of darkness.

  As I waited to meet the chief executive of Arthur Rank, I watched one very sick old man in pyjamas, slumped in a wheelchair, being pushed into reception by his elderly wife. The patient was breathing with great difficulty and wore a breathing tube linked to an oxygen supply. There was a mad, almost feral, look in his bloodshot eyes and his white hair was wild and wispy. I blurted out a ‘Good morning’, but his response was barely intelligible. He seemed to be in pain, and I could hardly suppress the thought that he might be better dead. One glance at his long-suffering wife was enough. I was reminded of the recent passing of another old friend; his doomed, rearguard action against leukaemia; and his final days in a London hospice. It was a relief to be ushered away to meet Dr Lynn Morgan, the executive head of Arthur Rank, and the person responsible for steering this multimillion-pound business.

  Lynn, formerly a government employee with the National Lottery, actually joined Arthur Rank as a direct result of her own father’s death, an exit with its slightly comic side. ‘In the end,’ says Lynn, ‘my dad died from kidney failure. But by that time, he’d got virtually everything, and had survived four aneurysms.’ She smiles at the memory. ‘He used to say that Arthur Rank saved his life.’

  I quickly discovered the explanation for this paradox: some years ago, her father had been admitted into intensive care, where he was not expected to survive. ‘They were going to switch off the life-support system,’ Lynn explained. ‘As a family, we had agreed that this was the humane thing to do. So we went away to take a break, and have a co
ffee, but when we came back there was a new shift and a different doctor, who said, “Maybe not yet. Let’s do some more tests.”’

  ‘After that,’ she continued, ‘he was transferred to Arthur Rank in the expectation that he would die within a couple of weeks. When he was first brought in here, he had nothing to live for. I remember seeing him in a foetal position, and he was only eating half a yoghurt a day. But, as soon as he arrived, they gave him a spa bath, to freshen up, and he began to come back to life.’

  Now Lynn is laughing. ‘He just got better and better.’ Eventually her father left the hospice and had two or three more years of useful life, while Lynn re-evaluated her work as a government servant. ‘I thought if I’m going to work really long hours, why shouldn’t I do something that didn’t feel so futile?’ she says. Soon after this modest epiphany, she applied for the post of CEO.

  Lynn Morgan’s team is led by Lorraine Petersen, the director of medical services, and Liz Webb, who runs the clinical side. The improvised informality of Arthur Rank’s beginnings are a thing of the past. Tim Hunt, who had been such a charismatic and controversial presence here twenty years ago, is long retired, but his intuitions about our final days and his exploration of the taboos surrounding the deathbed deserve to be remembered. ‘For people who are terminally ill,’ he once told me, ‘things can be much blacker than they need to be. They expect to die tomorrow, or the next day. They see Death just around the corner. They can’t sleep. How can you expect someone, even a healthy person, to feel well in the day if they don’t sleep at night? No textbook will tell you this. Patients will tell you. It’s because they have a fear of dying in the night, of not waking up.’ Years ago, in the National Hospital, I had found this to be true for myself. Some of my best and worst thoughts were those I had during the excruciating solitude of a sleepless hospital night. As a former patient, I remember mistaking the light under the door in the darkness for the beginning of dawn, only to discover the bedside clock reading 02:30.

  From experience, I understand now that, during the endgame, we default to resilience, perfecting a cognitive dissonance in which we entertain contradictory thoughts: part of us knows, and accepts, that we are dying but another part feels and thinks that we still have a future. In ‘Considering the Alternative’, Nora Ephron puts it this way: ‘Death doesn’t really feel eventual or inevitable. It still feels . . . avoidable somehow. But it’s not. We know in one part of our brains that we are all going to die, but on some level we don’t quite believe it.’ In one of my conversations with Henry Marsh, he had once observed that it’s ‘as though our brains are hard-wired for optimism. A good doctor will speak to both these dissonant selves, neither lying nor depriving the patient of hope, even if it’s only the hope of life for a few more days.’

  A pioneer in the hospice movement, Tim Hunt also taught that, contrary to popular belief, the terminally ill do not want crowds of visitors. ‘Husbands and wives,’ he used to say, ‘have a tendency to call relatives home for deathbed farewells. Actually, dying is a lonely business. The dying just want one person with whom they can share the silence and the darkness – a companion.’ The aim of the hospice movement is to facilitate a gentle transition to a state of solitude and acceptance that will make the lonely moment of passing as comfortable as possible.

  *

  In any hospice, there are many practical considerations, mixed with matters of life and death. Part of its function is to help supply a narrative for those who are reaching their end. The staff encourage their patients to make plans, with memory boxes, family mementoes, and so on. They see their job as all about supporting the patient as they make their exit, but will insist that ‘it’s not one route in, and one route out’. While Lynn and I sit chatting over coffee in the deserted day room, her colleague Liz Webb begins to describe the hospice routine which, she says ruefully, ‘is never routine’. Unsurprisingly, palliative care requires emotional stamina. ‘We work with staff to manage stress,’ she remarks. ‘There would be a high degree of burn-out if we did not take care of our nurses. We offer a lot of support to the staff, with access to counselling 24/7.’

  Arthur Rank also makes an impressive commitment to an everyday expression of sympathy. ‘What we try to do is make the process more humane,’ Liz explains. ‘We have a micro-grant scheme for our patients and their families. Sometimes, a small amount of money can make a real difference. For instance, we had a young Polish family here the other day. They had no money, and no support network. After the father’s death, we arranged for his wife to take a Ryanair flight back to Poland to drop her youngest child off with his grandparents. Then she flew straight back to Cambridge for her husband’s funeral.’

  I wonder about the limits to care, and the pressures on beds, and ask: would they turn away a patient with dementia – someone who might live on for months, or years?

  ‘No.’ Both Liz and Lynn firmly resist this suggestion. ‘We never exclude anyone. We look at every case on a clinical and individual basis.’

  How to make dying as calm and comfortable as slipping into another room is a bigger question. On the deathbed, questions of faith and belief jostle in the mind with worries about ‘the job of living’ and the ‘journey of life’. This, in turn, reflects the timeless contrast of complexity (life) vs. simplicity (death). In those final days, approaching Shakespeare’s ‘mere oblivion’, we are ‘sans eyes, sans teeth, sans taste’. Walking past the wards, some of the bed-ridden, terminally-ill figures I glimpse through a half-open door are incontrovertibly ‘sans everything’.

  One of the most fundamental questions that every hospice nurse has to deal with is: ‘How long have I got?’ Tim Hunt’s approach, still widely used, is to dispel the apprehension of ignorance. ‘You cannot say,’ he once remarked to me, ‘that “You’re going to die in three or six months.” It’s highly disturbing to do that. If you do that, the date gets marked in the diary.’ Since those days, there’s a new hazard for the hospice nurse: Google. For the terminally ill, the temptation to google a) your diagnosis and b) your life expectancy can be overwhelming.

  Bigger than ‘When?’ or ‘Where am I going?’ is the question of ‘How?’ Here, mercifully, the hospice movement can offer reassurance. Most patients will die in their sleep, a deeper and deeper sleep. At Arthur Rank, it’s usually a question of coming to terms with an imminent journey. Several patients who come into the hospice will be sent home. Almost half the intake – 40 per cent – will not stay for long. It will be their wish to go home to die. This will be a decision reached in consultation with the patient’s loved ones. There is now an impressive body of literature to assist families in extremis. Elisabeth Kübler-Ross’s groundbreaking On Death and Dying identifies five stages of dying, popularly known by the acronym DABDA:

  1. Denial — The initial reaction. In this first stage, individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.

  2. Anger — Patients become frustrated, especially with loved ones and nurses. Typical psychological responses during this phase would include: ‘Why me? It’s not fair!’; ‘How can this happen to me?’; ‘Who is to blame?’; ‘Why would this happen?’

  3. Bargaining — Here, the negotiation for an extended life is made in exchange for a reformed lifestyle.

  4. Depression — Patients say things like: ‘I’m so sad, why bother with anything?’; ‘I’m going to die soon, so what’s the point?’; ‘I miss my loved one, why go on?’ They become saddened by the probability of death. Some individuals may refuse visitors and spend much of the time silent, mournful and sullen.

  5. Acceptance — The common response becomes: ‘It’s going to be okay’, combined with ‘I can’t fight it, I may as well prepare for it.’ Individuals now embrace mortality and their inevitable future.

  Paul Kalanithi was a model for this final stage. He writes: ‘I’d suspected I had cancer. I wasn’t taken aback. In fact, there was a certain relief. The next steps were clear: Prepare to die. Cry. Tell
my wife she should remarry, and refinance the mortgage. Write overdue letters to dear friends.’

  There are so many exit strategies. Liz Webb says: ‘Some patients never want to be told bluntly that they are dying. Then the nurses and doctors have to work out how to respond. Other patients want to know exactly.’ It’s as if, on their approach to the hospice, everyone’s arrival reflects their character and preferences.

  ‘Sometimes,’ adds Liz, ‘patients will make the transition to an acceptance of death in the ambulance on the way here. We are always clear that coming here is about dying – we are all dying, of course – but our motto is: “Making Every Moment Count”. Western society sees death as a failure. We aim to help our patients live every moment that’s left to them, hopefully with as much pain relief as possible.’

  Dr Lorraine Petersen, Arthur Rank’s medical director, joins our conversation, speaking dispassionately about her work and its needs. ‘There are some difficult cases,’ she says. ‘You have to eyeball the patient. It’s not the family’s decision. There are,’ she concedes, ‘some things we can’t do. Some things are done more safely down the road in Addenbrooke’s [Hospital]. If there’s going to be too much monitoring involved, we’ll say no. But we’d rather say yes, and then assess.’

  Once again, I recall my encounters with Adam, Carol, Henry, and Max. I have been impressed by their near unanimous determination about the assertion of human rights. More and more people today insist they want to choose the moment of their extinction. In the last two decades, the ‘Right to Die’ movement has become more vociferous. Within the Commonwealth, Canada has just passed a bill legalizing ‘assisted suicide’. We can never know the torments of a life made unbearable by dementia, or cancer, or paralysis. So I ask: ‘What about assisted dying?’