by Henry Marsh
‘Ssshh,’ I said, as I turned away to leave the ITU. ‘I’ll see you tomorrow.’
18
CARCINOMA
n. a cancer, esp. one arising in epithelial tissue.
I went to see my mother in hospital on Saturday. The cancer ward to which she had been admitted was on the tenth floor and her bed was beside a huge panoramic window. The view was of the Houses of Parliament and Westminster Bridge across the river, seen from above yet very close. The spring weather was exceptionally clear. The River Thames below us reflected the sunlight like polished steel and hurt my eyes. The city beyond was almost oppressive in its clarity – an unrelenting view of buildings, inhuman in scale and size – an inappropriate view, I thought, for somebody who was dying.
My mother said that the staff were very friendly but hopelessly overworked and disorganized compared to when she had been a patient in the same hospital many years earlier, gesturing to her bed which had been left unmade for two days as she said this. She hated complaining but admitted she had been kept starved for two consecutive days while waiting for an ultrasound scan – a scan which I knew was entirely unnecessary since she was already becoming jaundiced and obviously had metastases in her liver from the carcinoma of the breast for which she had been treated twenty years earlier. There was some light relief, she said, in using a commode while looking down on the nation’s rulers across the river. She had grown up in Nazi Germany (from which she had escaped in 1939) and although a perfectly law-abiding citizen she was always sceptical of authority.
She was wasting away, as she herself commented. The bones of her face were becoming increasingly prominent and as she was stripped down to her underlying skeleton, I could recognize myself in her all the more clearly – people have always said that of her four children I am the closest to her in appearance. I could only hope that she might have a few good months left. We had an inconclusive discussion as to what she should do with what time she still had. My mother was one of the bravest and most philosophical people I know but neither of us could bring ourselves to refer to death by name.
I was on call for the weekend and was telephoned endlessly by a new and inexperienced registrar about many difficult problems. These were not clinically difficult problems but problems caused by the chronic lack of beds.
On the following Monday there were various complaints from patients about my trying to discharge them from hospital too quickly. One of the complaining patients was a garrulous old man who was reluctant to go home with an in-dwelling urinary catheter after a simple spinal operation. I’d told him that he would be doing another patient a favour if he went home that day since we had no beds available for the patients who were due to be admitted for surgery next day. He was still on the ward three days later and the ward sister criticized me for having spoken to him in the way that I had (although I thought that I had been scrupulously polite). I had had to cancel an operation on a woman with severe trigeminal neuralgia because he wouldn’t leave. The ward sister, nevertheless, told me that I had to apologize to him for having tried to get him to leave the hospital before he wished. So I went to say sorry to him (through silently gritted teeth). He accepted this happily.
‘Yes, I understand, doctor,’ he said. ‘I used to work in the kitchen-fitting trade and sometimes couldn’t complete a job on time. I also disliked disappointing people.’
I muttered something about brain surgery and building kitchen cupboards not being entirely equivalent and left his room – a balcony room, overlooking the hospital gardens and trees, with a distant view towards Epsom on the horizon. I was still working in the old hospital at the time – it was to be closed three years later. Perhaps if he had been in a more typical NHS bay, and not in a room on his own with a view of the hospital gardens and the many daffodils I had planted years before, he might have wanted to leave earlier.
I was away in Glasgow at a medical meeting two days later when the diagnosis of untreatable cancer was finally made and my mother was sent home to die. There was no question of chemotherapy in somebody her age with such advanced disease and she didn’t want it either, which my father found hard to accept. I returned from Glasgow and went to my parents’ house to find them sitting in the kitchen. My mother had become more jaundiced from liver failure since I had last seen her and looked worn and frail though fully herself.
‘I don’t want to leave you all,’ she said sadly. ‘But I don’t think death is the end, you know.’ My eighty-six-year-old father – already starting to suffer from the dementia from which he died eight years later – looked on, with a vague, lost expression as though he couldn’t really take in what was happening: that his fifty-year-old son was crying over his wife of over sixty years, and that she was shortly to die.
Her condition deteriorated very quickly over the next few days, and she was dead within a fortnight; a short illness as the obituaries call it, though it felt quite long while it lasted. Until the very end she remained entirely lucid and completely herself, with her slightly ironical, modest sense of humour preserved until the last.
Each day she weakened, and soon she was established in a bed during the day in the music room downstairs. I would carry her up the staircase of my parents’ house in my arms at the end of the day – by now she weighed next to nothing. But even this was quickly too much for her, and so after discussion with myself and one of my sisters, who is a nurse, my mother remained in the bedroom she had shared with our father for the last forty years. This, she decided, would be where she would die. It was a beautiful room – a perfectly proportioned Georgian room with wood-panelling, painted a quiet, faded green, and an open fireplace and mantelpiece decorated with her collection of little pottery birds and eggs. The tall windows, with their rectangular panes of glass, looked out over the trees of Clapham Common, especially beautiful at that time of year. To the left one could see the church on the Common which she attended every Sunday and where her funeral service would be held.
Every morning and evening my sister and I would come in to care for her. At first I would help her to the bathroom where my sister would wash her but soon she was unable to walk even this short distance and instead I would lift her onto the commode we had borrowed from the local hospice. My sister was wonderful to watch, kindly and gently discussing and explaining everything as she carried out the simple, necessary nursing. We have both seen many people die, after all, and I had worked as a geriatric nurse many years ago too. It felt quite easy and natural for us both, I think, despite our intense emotions. It’s not that we felt anxious – the three of us knew she was dying – I suppose what we felt was simply intense love, a love quite without ulterior motive, quite without the vanity and self-interest of which love is so often the expression.
‘It’s a quite extraordinary feeling to be surrounded by so much love,’ she said two days before she died. ‘I count my blessings.’
She was right to do this, of course. I doubt if any of us will enjoy – if that’s the word to use – such a perfect death when our own time comes. To die in her own home, after a long life, quite quickly, looked after by her own children, surrounded by her family, entirely free of pain. A few days before she died, almost by chance, the family – children, grandchildren and even great-grandchildren, and two of her oldest friends – found themselves all gathered in the family home. We staged what amounted to an impromptu wake, before her death, much to my mother’s delight. While she lay dying upstairs we sat down round the dining room table and remembered her life, and drank to her memory even though she was not yet dead, and ate supper cooked by my wife-to-be Kate. I had only met Kate – to my mother’s joy, after the trauma of the end of my first marriage – a few months earlier. Kate had been slightly surprised to find herself cooking supper for seventeen people when earlier in the day I had hesitantly asked her if she might cook supper for five.
Each day I thought might be the last but each morning when I returned she would s
ay to me, ‘I’m still here.’
Once when I told her, as I kissed her goodnight, that I would see her in the morning, she replied with a smile,
‘Dead or alive.’
My family were playing out an age-old scene that I suppose is rarely seen now in the modern world, where we die in impersonal hospitals or hospices, cared for by caring professionals, whose caring expressions (just like mine at work) will disappear off their faces as soon as they turn away, like the smiles of hotel receptionists.
Dying is rarely easy, whatever we might wish to think. Our bodies will not let us off the hook of life without a struggle. You don’t just speak a few meaningful last words to your tearful family and then breathe your last. If you don’t die violently, choking or coughing, or in a coma, you must gradually be worn away, the flesh shrivelling off your bones, your skin and eyes turning deep yellow if your liver is failing, your voice weakening, until, near the end, you haven’t even the strength to open your eyes, and you lie motionless on your death bed, the only movement your gasping breath. Gradually you become unrecognizable – at least you lose all the details that made your face characteristically your own, and the contours of your face are worn away down to the anonymous outlines of your underlying skull. You now look like the many old people, with drawn and dehydrated faces, identical in their hospital gowns, to whose bedside I would be summoned in the early hours when I worked as a junior doctor, down the long and empty hospital corridors, to certify death. Your face becomes that of Everyman, close to death, a face we all know, if only from the funeral art of Christian churches.
By the time she died my mother was no longer recognizable. I last saw her on the morning of the day she died before I set off to work. I had spent the night in my parents’ house, sleeping on the floor of my father’s study, near my parents’ bedroom. I could hear her rasping breath through the open doors between the study where I was lying and her bedroom. When I went to see her at four in the morning she shook her head when I asked her if she wanted some water and morphine, even though one would have thought from her appearance that she was already dead, had it not been for her laboured, occasional breathing. Before I finally left I said to her, to her death mask, as I held her hand, ‘You’re still here.’ Almost imperceptibly she slowly nodded her head. I cannot remember my last sight of her when I went to work in the morning – it no long mattered. I had said goodbye to her many times already.
My sister rang me shortly after midday, as I sat at some dull medical meeting, to say she had died a few minutes earlier. Her breathing, she told me, had become shallower and shallower until eventually my family, who were gathered round her bed realized, with slight surprise, that she had died.
I felt no need to pay her body my final respects – as far as I was concerned her body had become a meaningless shell. I say ‘body’ – I could just as well talk of her brain. As I had sat by her bedside I had often thought of that – of how the millions upon millions of nerve cells, and their near-infinite connections that formed her brain, her very self, were struggling and fading. I remember her on that last morning, just before I went to work – her face sunken and wasted, unable to move, unable to talk, unable to open her eyes – yet when I asked her if she wanted any water to drink she shook her head. Within this dying, ruined body, invaded by cancer cells, ‘she’ was still there, even though she was now refusing even water, and clearly anxious not to prolong her dying any longer. And now all those brain cells are dead – and my mother – who in a sense was the complex electrochemical interaction of all these millions of neurons – is no more. In neuroscience it is called ‘the binding problem’ – the extraordinary fact, which nobody can even begin to explain, that mere brute matter can give rise to consciousness and sensation. I had such a strong sensation, as she lay dying, that some deeper, ‘real’ person was still there behind the death mask.
What makes for a good death? Absence of pain, of course, but there are many aspects to dying and pain is only one part of it. Like most doctors I suppose I have seen death in all its many forms and my mother was indeed lucky to die in the way that she did. If I ever think about my own death – which, like most people, I try to avoid – I hope for a quick end, with a heart attack or stroke, preferably while asleep. But I realize that I may not be so fortunate. I may very well have to go through a time when I am still alive but have no future to hope for and only a past to look back on. My mother was lucky to believe in some kind of life beyond death but I do not have this faith. The only consolation I will have, if I do not achieve instant extinction, will be my own last judgement on my life as I look back on it. I must hope that I live my life now in such a way that, like my mother, I will be able to die without regret. As my mother lay on her death-bed, drifting in and out of consciousness, sometimes lapsing into her German mother-tongue she said:
‘It’s been a wonderful life. We have said everything there is to say.’
19
AKINETIC MUTISM
n. a syndrome characterized by the inability to speak, loss of voluntary movement and apparent loss of emotional feeling.
Neuroscience tells us that it is highly improbable that we have souls, as everything we think and feel is no more or no less than the electrochemical chatter of our nerve cells. Our sense of self, our feelings and our thoughts, our love for others, our hopes and ambitions, our hates and fears all die when our brains die. Many people deeply resent this view of things, which not only deprives us of life after death but also seems to downgrade thought to mere electrochemistry and reduces us to mere automata, to machines. Such people are profoundly mistaken since what it really does is upgrade matter into something infinitely mysterious that we do not understand. There are one hundred billion nerve cells in our brains. Does each one have a fragment of consciousness within it? How many nerve cells do we require to be conscious or to feel pain? Or does consciousness and thought reside in the electrochemical impulses that join these billions of cells together? Is a snail aware? Does it feel pain when you crush it underfoot? Nobody knows.
An eminent and eccentric neurologist who had sent me many patients over the years asked me to examine a woman I had operated on a year earlier who was in a persistent vegetative state. I had operated for a ruptured arterio-venous malformation after she had suffered a life-threatening haemorrhage and I had operated as an emergency. It had been a difficult operation and although it had saved her life it could not undo the damage done to her brain by the haemorrhage. She had been in a coma before the operation and remained in a coma for many weeks afterwards. She had been transferred back to her local hospital some weeks after the operation where she had been under the care of the neurologist who now wanted me to see her in the long-term nursing home in which she had ended up. Before she was transferred to the nursing home, I had carried out a shunt operation for hydrocephalus which had developed as a late after-effect of the original bleed.
Although the shunt operation had been a relatively minor one – one I would usually delegate to my juniors – I remembered it well because I had carried it out at the local hospital and not in my own neurosurgical centre. I scarcely ever operate away from my own theatres, except when I am working abroad. I had gone to the local district hospital where she was a patient with a tray of instruments and one of my registrars. I had gone vainly thinking that the visit of a senior neurosurgeon to the hospital – since brain surgery was not normally performed there – would be an event of some importance and be of some interest, but apart from the desperate family everybody else in the hospital seemed scarcely to notice my arrival. The local neurologist, who was away at the time of my visit, had told the family that the operation might relieve her persistent vegetative state. I was less optimistic, and said so, but there was little to be lost by trying and so after discussing this with them I went down to the operating theatres where, I was told, the staff were ready for me to operate.
The nurses and the anaesthetists greeted me w
ith total indifference, which I found quite disconcerting. I had to wait two hours before the patient was brought down for the operation, and when she eventually came into the theatre, the staff all worked in sluggish and sullen silence. The contrast to my own friendly and energetic neurosurgical theatres was remarkable. I had no way of knowing whether they felt that I was wasting their time by operating on a human vegetable or whether this was just their normal way of behaving. So I operated, reported back to the family afterwards, and drove back to London.
As the months passed after this second operation, it became clear that the shunt had made no difference to her condition, and her neurologist wanted me to examine the patient and see if the shunt was working or if it had blocked. It seemed a little cruel and unnecessary to drag her all the way to my hospital in an ambulance just for my opinion so I had agreed – a little reluctantly, as I knew that I could not help – to visit her in the nursing home that now cared for her.
Patients in persistent vegetative state – or PVS as it is called for short – seem to be awake because their eyes are open, yet they show no awareness or responsiveness to the outside world. They are conscious, some would say, but there is no content to their consciousness. They have become an empty shell, there is nobody at home. Yet recent research with functional brain scans shows this is not always the case. Some of these patients, despite being mute and unresponsive, seem to have some kind of activity going on in their brains, and some kind of awareness of the outside world. It is not, however, at all clear what it means. Are they in some kind of perpetual dream state? Are they in heaven, or in hell? Or just dimly aware, with only a fragment of consciousness of which they themselves are scarcely aware?