Do No Harm: Stories of Life, Death, and Brain Surgery

by Henry Marsh

every time you open somebody’s head there’s a one to two per cent risk of catastrophic haemorrhage or infection, and that risk is probably slightly greater in somebody her age. The only certainty was that she would slowly get worse if we did nothing – but, I added hesitantly, hoping that Mrs Seagrave herself would not notice, one might argue that given her age it was best simply not to operate and accept that she would slowly deteriorate before she died.

It was fairly obvious that their mother was not capable of following the conversation. ‘What would you do if it were your mother?’ the son asked. I hesitated before I answered because I was not sure of the answer. It is, of course, the question that all patients should ask their doctors, but one most are reluctant to ask

I replied slowly that I would try to persuade her to have the operation if we – and I gestured to the four of them as I spoke – all felt she was losing her independence and heading for some kind of institutional care. But I said that it was very difficult – that it was all about uncertainty and luck.

I turned to face all the patients crammed into the little room. ‘I’m sorry about all this,’ I said to them, waving my arm round the crowded room, ‘but we’re a bit short of beds at the moment.’ As I said this, suppressing the urge to deliver a diatribe about the government and hospital management, I wondered, once again, at the way in which patients in this country so rarely complain.

CHOROID PLEXUS PAPILLOMA n. a benign tumour of the choroid plexus, a structure made from tufts of villi within the ventricular system that produces cerebrospinal fluid.

William underwent surgery on a Wednesday morning. Hilary and I spent many hours pacing around central London while the operation went on. It was a useful lesson for me, when I became a fully trained surgeon myself, to know how much my patients’ families suffer when I am operating. The operation was a success and William survived, since the tumour proved to be a benign choroid plexus papilloma even though the pathology report had reported it to be malignant. I came to realize later that few brain tumours at that age are benign, and that even with the benign tumours the risks of surgery in such young children are immense.

Anxious and angry relatives are a burden all doctors must bear, but having been one myself was an important part of my medical education. Doctors, I tell my trainees with a laugh, can’t suffer enough.

LEUCOTOMY n. the surgical cutting of tracts of white nerve fibres in the brain; orig. spec., prefrontal lobotomy; an instance of this.

As a practical brain surgeon I have always found the philosophy of the so-called ‘Mind-Brain Problem’ confusing and ultimately a waste of time. It has never seemed a problem to me, only a source of awe, amazement and profound surprise that my consciousness, my very sense of self, the self which feels as free as air, which was trying to read the book but instead was watching the clouds through the high windows, the self which is now writing these words, is in fact the electrochemical chatter of one hundred billion nerve cells.

TRAUMA n. any physical wound or injury. psychol. an emotionally painful and harmful event.

EPENDYMOMA n. a cerebral tumour derived from the non-nervous cells lining the cavities of the ventricles of the brain.

Life without hope is hopelessly difficult but at the end hope can so easily make fools of us all.

Surgeons must always tell the truth but rarely, if ever, deprive patients of all hope. It can be very difficult to find the balance between optimism and realism.

GLIOBLASTOMA n. the most aggressive type of brain tumour derived from non-nervous tissue.

I have learned over the years that when ‘breaking bad news’ as it is called, it is probably best to speak as little as possible. These conversations, by their very nature, are slow and painful and I must overcome my urge to talk and talk to fill the sad silence.

I struggled as David looked at me and I found it difficult not to talk too much. I said that if he was a member of my own family I would not want him to have any more treatment. ‘Well,’ I said eventually, getting control of myself, ‘I suppose I’ve kept you going for a good few years…’

I felt awkward as I shyly reached out to hold his big, masculine hand. ‘It’s been an honour to look after you,’ I said and stood up to leave. ‘It’s a bit inappropriate but all I can say is good luck,’ I added, unable to say goodbye, since we both knew it would be for the last time. I stood up – his wife came towards me, her eyes full of tears. I buried my face in her shoulder, holding her fiercely for a few seconds and then left the room.

INFARCT n. a small localized area of dead tissue caused by an inadequate blood supply.

NEUROTMESIS n. the complete severance of a peripheral nerve. Complete recovery of function is impossible.

I scrubbed up and came over to the operating table. ‘I’ll have a look,’ I said. I picked up a pair of forceps and looked into the wound. A long shiny white thread, the thickness of a piece of string – four or five inches long – came up out of the wound in my forceps. ‘Oh Jesus fucking Christ!’ I burst out. ‘You’ve severed the nerve root!’ I threw the forceps onto the floor and flung myself away from the operating table to stand against the far wall of the theatre. I tried to calm myself down. I felt like bursting into tears.

Most mistakes during operations are subtle and complex and scarcely count as mistakes. Indeed, in thirty years of neurosurgery I’d never witnessed this particular disaster, although I have heard of it happening.

It became apparent that my registrar had completely misunderstood the anatomy and opened the spine at the outer rather than the inner edge of the spinal canal and hence had immediately encountered a nerve root, which, even more incomprehensibly, he had then severed. It was an utterly bizarre thing to have done, especially as he had seen dozens of these operations done before, and done many unsupervised on his own. ‘I think you’ve cut straight through the nerve – a complete neurotmesis,’ I said sadly to my dumb-struck assistant.

That’s not a minor disability – he’ll never be able to run again, or to walk on uneven ground. So much for the mountain bike championships.’

‘I think it was reasonable enough for me to let my registrar start – he’s done these operations before. But I got it wrong. He was less experienced than I realized. It really was staggeringly incompetent … but then I am responsible for his operating.’ ‘Well, it’s the Trust that gets sued anyway – it doesn’t really matter whose fault it was.’ ‘But I misjudged his abilities. I’m responsible. And the patient will blame me anyway. He’d put his trust in me, not in the bloody Trust.

‘The operation was not straightforward after all,’ I said. ‘One of the nerves for your left ankle was damaged and that’s why you can’t bend the foot up at the moment. It might get better – I really don’t know. But if it does I’m afraid it will be a slow process that takes months.’ ‘But it should get better?’ he asked anxiously. I told him that I didn’t know and could only promise to always tell him the truth. I felt quite sick.

The anger and tears, I thought as I walked away, and dutifully squirted alcohol gel on my hands from a nearby bottle on the wall, will come later. I went downstairs to my office and dealt with mountains of unimportant paperwork.

I cycled home in a furious temper. Why don’t I just stop training juniors? I said to myself as I angrily turned the pedals. Why don’t I just do all the operating myself? Why should I have to carry the burden of deciding whether they can operate or not when the fucking management and politicians dictate their training?

Yes, I shall no longer train anybody, I thought with a sudden sense of relief. It’s not safe.

The country’s massively in debt financially, why not have a massive debt of medical experience as well? Let’s have a whole new generation of ignorant doctors in the future. Fuck the future, let it look after itself, it’s not my responsibility. Fuck the management, and fuck the government and fuck the pathetic politicians and their fiddled expenses and fuck the fucking civil servants in the fucking Department of Health. Fuck everybody.

MEDULLOBLASTOMA n. a malignant brain tumour that occurs during childhood.

I had operated on a young girl with a large brain tumour. The tumour was a mass of blood vessels, in the way that some brain tumours can be, and I had struggled desperately to stop the bleeding. The operation became a grim race between the blood pouring out of the child’s head and my poor anaesthetist Judith pouring blood back in through the intravenous lines as I tried, and failed, to stop the bleeding. The child, a very beautiful girl with long red hair, bled to death. She ‘died on the table’ – an exceptionally rare event in modern surgery.

And as I closed the dead child’s head I had to think about what to tell the waiting family. I had dragged myself up to the children’s ward, where the mother was waiting to see me. She would not have been expecting to hear this catastrophic news. I had found it very difficult to talk, but managed to convey what had happened. I had no idea how she might react, but she reached out to me and held me in her arms and consoled me for my failure, even though it was she who had lost her daughter.

As far as I know Darren’s mother did not pursue her complaint but I fear that if she cannot find it in her heart to forgive the doctors who looked after her son in his final illness she will be haunted forever by his dying cry.

PITUITARY ADENOMA n. a benign tumour of the pituitary gland.

I had many long and emotional conversations with the family later that day. This involved floods of tears and much embracing. It is difficult to explain, let alone to understand, what it must be like to have no language – to be unable either to understand what is said to one, or put one’s thoughts into words. After major strokes people can die from brain swelling, but this patient remained unchanged for forty-eight hours, and the next evening I assured the family that he would not die, although I did not know if he would regain his speech, and rather doubted it.

My young and inexperienced registrar rang me. ‘He’s gone off and blown both his pupils!’ he excitedly told me. ‘Well, if both pupils have blown that means he’s coned. He’s going to die. There’s nothing to be done,’ I told him. Coning refers to the way in which the brain is squeezed like toothpaste out of the hole in the base of the skull when the pressure in the skull becomes very high. The extruded part of the brain is cone-shaped. It is a fatal process.

I couldn’t get to sleep and instead drove in to the hospital, the streets deserted apart from a single fox confidently trotting across the road in front of the hospital, summer rain falling. The empty hospital corridors were ringing with the family’s cries, including the three-year-old grand-daughter’s. So I gathered them all together and sat in a chair facing them and explained things and told them how sorry I was. The patient’s wife was on her knees in front of me, clasping her hands, begging me to save her husband.

They came to accept the inevitability of his death, and perhaps even that it was better for him than to live without language.

EMPYEMA n. a condition characterized by an accumulation of pus in a body cavity.

If my patients’ brains could feel me touching them they would need a second brain somewhere to register the sensation. Since the only parts of the head that feel pain are the skin and muscles and tissues outside the brain it is possible to carry out brain surgery under local anaesthetic with the patient wide awake. Besides, the brain does not come with dotted lines saying ‘Cut here’ or ‘Don’t cut there’ and tumours of the brain usually look, more or less, like the brain itself, so it is easy to cause damage.

CARCINOMA n. a cancer, esp. one arising in epithelial tissue.

I went to see my mother in hospital one 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.

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.

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 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.

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 say 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.

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.’

AKINETIC MUTISM n. a syndrome characterized by the inability to speak, loss of voluntary movement and apparent loss of emotional feeling.

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.