My Year Off Read online

  The residue of nearly dying, and of being conscious through most of the experience, feeling detached and quite serene, is that the world still seems painfully vivid and precious. I have not, however, lost my fascination with death and dying, and when I was recovering in the National Hospital, my day with Tim Hunt remained an especially sustaining and important memory.

  At the beginning of my visit to the hospice, a pleasant, single-storey brick building in the grounds of Brookfields Hospital, on the edge of Cambridge, Tim Hunt had reiterated to me that amid the manifold uncertainties of our take-off from this world there is one stark and unavoidable truth: the medical profession does not much care for the dying. Doctors are trained to diagnose and cure. Patients are conditioned to believe in the healing power of surgery and drugs. In medicine, death equals failure and dying is a reality that only a few can bear to contemplate on a professional basis. Doctors hate an illness they cannot cure, which is part of the explanation for the profound and chronic neglect of stroke-patients. (In many provincial hospitals, the out-of-the-way bed at the end of the ward is often still referred to as ‘the stroke bed’.) But if, in the jargon of the National Health Service, ‘no further treatment is appropriate’, i.e. you are terminally ill, the most comfortable departure lounge is likely to be a hospice.

  So how would you choose to die? Quickly? Peacefully? Surrounded by grieving relatives? The hospice caters to all our needs, providing comfort and dignity for the dying in their battle with the demons of fear, loneliness, depression, guilt, anger and chronic fatigue. It’s a daunting task but one which has, in the last decade, begun to attract a new generation of doctors specializing in what is euphemistically known as ‘palliative medicine’. Dr Hunt is one of the acknowledged pioneers in this field, a doctor of Death, so to speak.

  Hunt, who has the dress and demeanour of a slightly mad professor (ill-fitting suit, wispy hair, flying hands, gangly walk), has treated about five thousand patients in the last ten years. Not one of them has survived. Yet many went to their graves firm in the belief that he is a ‘magician’, even a ‘genius’, words which I heard applied to him during my visit. Something quite odd, even uplifting, can happen when the process of dying is treated for what it is – a matter of extreme fascination. Hunt had been a protégé of the late Peter Medawar, whose autobiography, Memoir of a Thinking Radish, contains some characteristically acerbic pages on his own stroke and the quality of medical care he received in hospital. Hunt explained how, at his hospital, Adden-brookes, he’d become interested in this neglected area: ‘I have to say we didn’t look after dying patients very well. The usual sequence of events was that the consultant went round and he’d say, “That chap’s very ill. Start the heroin.” One day – I’ll never forget this – there was a registrar who decided on this policy for a chap of thirty-six who was dying of a kidney cancer. At about five o’clock, the nurses came to me. The man wasn’t in pain. Why should they bump him off, as they usually did? That’s how I became interested in people who have been put on one side because they no longer present the challenge of diagnosis and treatment to the medical profession. It wasn’t a high kudos thing to be doing.’ Death, notoriously, has become an embarrassment, a taboo. Death is what happens to other people. Violent death occurs in faraway places of which we know little, East Timor, perhaps, or Indo-China. The older generation can remember standing in silence at the passing of a hearse, but in our time, at least until AIDS, the emphasis has been on cure, on long life. Fifteen years ago, hospices were seen as dormitories for the dying. As doctors became aware that there were some diseases that were beyond the power of the latest wonder-drug–multiple sclerosis, motor-neurone disease, various kinds of cancer – hospices became places where (thanks to the judicious use of analgesics) patients could continue to survive without the pain usually associated with terminal illness.

  The manipulation of drugs, however, was not the whole story. Tim Hunt, in fact, is renowned for his ability to reduce a dependency on medication. What distinguished his work in the hospice was his minute attention to the neglected, mundane details of terminal illness. In hospitals, doctors tend to overlook the things that patients worry about the most: coughing, vomiting and hiccups. Symptoms of cancer, such as smell, used to be accepted as unpleasant but unavoidable. ‘No one was interested in smell twenty years ago,’ Hunt remarked. ‘The stench from a fungating tumour. I remember this woman said to me, “What can you do about this terrible smell? I cannot bear to have anyone come near me.” So I developed a new formulation to deal with it, and she became much more comfortable.’

  The more Hunt investigated the taboos surrounding the deathbed, the deeper he went into the minds of the dying. ‘For people who are terminally ill things are much blacker than they need 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? Why don’t they 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.’

  Now, as I’d discovered in Queen Square, I found this to be true for myself. Some of my best and worst thoughts were those I had during the long loneliness of a sleepless hospital night. Hunt also told me that, contrary to popular belief, the terminally ill do not want crowds of visitors. ‘Husbands and wives have a tendency to call relatives home for deathbed farewells. Actually, dying is a lonely business. The dying just want company. They want one person with whom they can share the silence and the darkness, a companion.’ When Hunt had told me this, I had put it down as an interesting observation. Writing now, after several months in and out of hospital, I can acknowledge the wisdom of his comment: he was absolutely right. There were many days when I preferred to be left quite alone. (And I wasn’t even on my deathbed.) On more than one occasion – and with rather guilty feelings – I would send people away who came to see me, including one of my dearest and best friends, blaming tiredness for what was actually an overwhelming need for solitude.

  On the day of my visit to Cambridge, the sun was out and Dr Hunt was in his element. In the hallway of Arthur Rank House, the atmosphere was casual and relaxed. There were children playing Snakes and Ladders, a middle-aged couple talking in low voices, a visiting priest chatting to one of the helpers, and a patient in a lint-white surgical neck support reading the Observer. Hunt, the master of ceremonies, whirled between the various groups, jollying everyone along. In the wards, the mood was quiet but not deathly. One birdlike woman, haggard and waxy with illness, almost unable to speak, was having her nails varnished by a Red Cross nurse. Hunt’s hospice believes strongly in maintaining the dignity and self-esteem of the patients, even at the end.

  In the consulting room, one of the biggest questions Hunt has to deal with is: ‘How long have I got?’ His first task was always to dispel fear, the apprehension of ignorance. He explained to me, ‘You cannot say to a patient, “You’re going to die in three or six months.” It’s highly disturbing to do that. The date gets marked on the calendar. I had this patient. He was so frightened he was trembling. He had conditioned himself to be dead in six months. What I do is I say, “I cannot see the end.” I say, “Some days you’ll feel grotty. Others you’ll feel better.” I encourage them to believe that they are exceptional. I try to treat the patients as I would want to be treated myself. Patients must feel that they matter. They need time. We spend all of our lives avoiding ways of dying. You cannot expect people to be prepared to die. What I do is I try to bring them into the decisionmaking. If you don’t cover up or lie to them their hope is enhanced somehow.’ Needless to say, this is a time-consuming procedure that fits badly with a time- and cost-conscious National Health Service where some consultants will dismiss a terminally ill patient in as little as five minutes.

  Bigger even than the question of ‘When?’ is the question, ‘How?’ – ‘How will I die?’ To this, mercifully, Hunt could offer reassur
ance to both relatives and patients: ‘I can firmly tell you that most patients will die in their sleep, a deeper and deeper sleep. This is a great relief to many relatives. Of course there are cases where death is uncomfortable, but this is often for psychological reasons.’

  The battle with approaching Death rages fiercest in the mind, and Hunt had become expert in providing psychological reinforcements for those who wanted to fight. In the late afternoon I drove out with him into the sunny fens to visit two patients at home. The first was confined to her bed. She was troubled by a nagging cough. Her family had lost heart. She might as well have been dead. Afterwards, as we drove towards Newmarket in his cluttered, down-at-heel Metro for the second consultation, Hunt puzzled over two things. How, physically, to soothe the woman’s cough? More important, how could he inject some confidence into her husband? ‘You saw how he had given up,’ he remarked. ‘Look, this man’s wife knows him better than anyone. She can read him so easily. She will see it in his eyes. She will feel she has been abandoned. There were no books, no newspapers by her bedside. He must learn to involve his wife in the world. Ask for her thoughts. She is still alive.’ (There can, of course, be no evidence for this conviction, but I believe that Sarah’s refusal to let despair get the better of us has been a crucial component in my excellent recovery.)

  At his next appointment, the patient, a middle-aged mother of two, was shuffling about in a dressing gown. She wore a surgical collar and was recovering from a course of radiotherapy. She had lost all sense of taste, a distressing experience with which I can now easily sympathize. Her GP had told her that this was an inevitable side-effect, but Hunt’s reaction was quite different. He questioned the woman closely about her eating habits. Her husband participated eagerly in the discussion. Hunt said there were ways to stimulate salivation. Then, to everyone’s amazement, he prescribed a diet of fresh pineapple – and good white wine. The transformation of the family mood was palpable. Now they had a project. The patient had something to look forward to. Her husband could go shopping. There was hope, after all. ‘I want to put some of the responsibility back to the patients,’ he explained afterwards. ‘Involving the family in such matters is just as important as sending a get-well card.’

  There’s no doubt that Hunt can be almost spookily intuitive about his patients’ state of mind, with a rare ability to calibrate the final moments to their advantage. ‘The period before people die is fascinating,’ he said. ‘It’s a great junction. If there’s one word to describe what happens when you know you’re dying, it’s “reconciliation”. This is not a spiritual thing, it’s a matter of putting your affairs in order.’ More often than not, Hunt finds himself an accomplice in all manner of settlements and resolutions.

  Some of these deathbed scenes were worthy of Dickens or Chekhov. ‘I remember one man, a Roman Catholic,’ he said. ‘He wanted to stop his wife remarrying after his death. So he put their house in the name of his children so that no man would be attracted to her for financial reasons. Then, two days before he died, he became very agitated. It turned out that the marriage had been terrible. His wife had wanted to leave. He was troubled with what he had done. He asked for first one, then a second, and finally a third priest, looking for assurances about his future that the priests could not give. That was a traumatic death.’

  I wondered if those who have an active faith shuffle off their mortal coil with greater ease or dignity. Hunt shook his head. ‘The sad fact is that those who have, so to speak, two Michelin rosettes because of their religious beliefs don’t appear to have a better time of it. This is the truth. You can say, “How do you know this?” Well, I’ve looked after five thousand people …’

  Those who are about to die are centre-stage in an extraordinary drama, and sometimes, like prima donnas, the dying manipulate the situation to cause maximum embarrassment. Hunt described how the deceased can ensure they are remembered long after their death simply by making hurtful and controversial changes to their wills. My Scottish grandmother, for instance, disposed of her quite modest estate in such a way as to cause maximum distress to her eldest son. The obvious irrationality of her behaviour did little to soften the considerable hurt she’d inflicted from beyond the grave.

  The deathbed can also be a place in which terrible, long-hidden secrets are revealed. Hunt told me, ‘I remember a man with a wife and children. He was in great emotional pain. It turned out that the man had had several affairs that the wife knew nothing about and there were all these women who wanted to come and see him to say goodbye. I had to smuggle them in. You may say that this was wrong, but I felt I had to do what this man wanted. There was another patient. He was married, but for over twenty years he’d had a mistress in the next-door village, the love of his life. He was in terrible discomfort and pain. He wanted to be with her before he died. I had to get this woman in secretly. His own family had no idea. The man had this terrible regret that he had not shared his life with this other woman. Yes, those who tend the dying will be in receipt of many confidences.’

  He began to tell me about his own father, who’d died recently. ‘I think I practised what I preach.’ Hunt’s voice was sombre and low, but quite soothing. ‘He’d had a stroke. I carried him up to bed. I said, “You’ve had a small stroke. You’ve lost your voice but there’s a good chance of recovery.” The GP wanted to send him to hospital. I said to myself, “Tim, here we have someone of eighty-six who’s led a very active life and who couldn’t stand to be in a hospital. There’s a high chance he will have another stroke.” That night I had to go and see another patient. At seven o’clock the next morning I went back to the house. My mother had her arms around him. He had died in his sleep.’ For a moment, Hunt was no longer the hospice doctor but the bereaved son. Then he became the professional again. ‘In a sense, that is what I want for my patients.’

  When I look back over this encounter now I realize that, strange as it sounds, it was the only occasion I can recall in which someone actually described to me the effect of a stroke, its fatal propensity.

  Now I’m an ‘expert’, of course, and during the long months of my year off, I often found myself drawn to all manner of books about illness, books about dying and books about death, from Elisabeth Kubler-Ross’s trail-blazing On Death and Dying (also her eccentric treatise, The Wheel of Life), and Gillian Rose’s Love’s Work and Harold Brodkey’s AIDS memoir This Wild Darkness: The Story of My Death, to C. S. Lewis’s A Grief Observed. Of these, Lewis’s meditation on the death of his wife, and Gillian Rose’s profoundly affecting anticipation of her death by cancer stand out (with John Donne’s Devotions) for their wisdom and poetry. ‘I am bound,’ writes Rose, ‘to get love wrong, all the time … but still I keep wooing.’ Rose observes that what she memorably calls ‘Love’s work’, is ‘humanity’s survival mechanism’, a conclusion I reached in my own way during my hospitalization. Finally, there was The Diving Bell and the Butterfly by Jean-Dominique Bauby, a French magazine journalist, whose story shadows mine in a number of intriguing ways.

  ‘I had never even heard of the brain stem,’ he writes, with an exasperated perplexity I fully understand. On the morning of 8 December 1995, Jean-Dominique Bauby, the editor-in-chief of French Elle magazine, woke up to a day like any other. But when he went to pick up his son from his estranged wife’s house in the suburbs of Paris, pressing his BMW through gridlocked traffic, he suddenly felt ill and had to stop the car. Then he suffered a massive stroke and was unconscious for three weeks. When he came round in the hospital of Breck-sur-Mer, he was unable to breathe without a ventilator, unable to speak or eat unaided, or move anything except his left eyelid. He’d become, as his heartless colleagues, chattering in Les Deux Magots, would put it, a légume. The specialist doctors at Breck-sur-Mer, experts in stroke treatment, had managed to resuscitate him, and what they now told him was perhaps the most horrible news imaginable. ‘You survive, but you survive with what is known as “locked-in syndrome”. It is a small consolation, no doubt, but your
chances of being caught in this hellish trap are about those of winning the lottery.’ Almost totally paralysed, mute and half deaf, Bauby found that his cognitive skills were unimpaired and through his frustration came a resolve to prove that his IQ ‘was still higher than a turnip’s’.

  The result was The Diving Bell and the Butterfly. Bauby planned his text in his imagination, then memorized each word, phrase and paragraph. A Paris publisher sent him an assistant to take down his words – Bauby would listen to a recital of the alphabet, then blink his left eye at the appropriate letter of the alphabet, one blink for Yes, two for No. Now Bauby could flutter free like the butterfly of the title from the diving bell (an odd metaphor) of his condition, and begin to narrate his experience. ‘In my head,’ he writes, ‘I churn over every sentence ten times, delete a word, add an adjective, and learn my text by heart, paragraph by paragraph.’ Slowly, the book took shape, and when it was published it was, in France, a succès fou and became an international phenomenon, with the added poignancy that its author died four days after his memoir’s sensational publication (as if he had lived just long enough to know that his final message had got through).

  Part of our fascination with Bauby and The Diving Bell and the Butterfly lies in the significance we attribute to his report from beyond the grave. He, who crossed over into the twilight world of neither dead nor alive, has had special access to the antechamber of life’s great mystery; we, if we listen to him, may hear something to our advantage. That, I suppose, is our unconscious reasoning. The fact that Bauby has palpably experienced the extreme of suffering only adds to the authenticity of his utterance. Crucial to Bauby’s significance is his harrowing immobility. As John Donne puts it in Devotions: ‘When God came to breathe into Man the breath of life, he found him flat upon the ground; when he comes to withdraw that breath from him again, he prepares him to it, by laying him flat upon his bed.’ Is it for the same reason that we find special consequence in the writings of Stephen Hawking?