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

by Henry Marsh

  ‘I’m very sorry I didn’t talk to you earlier,’ I began. ‘I’m afraid she suffered a stroke after the operation. The tumour was stuck to one of the major arteries for her brain and when this happens, even though we are able to remove the tumour, sometimes a stroke occurs in the artery a few days later.’

  The husband and mother looked at me silently.

  ‘What will happen?’ her elderly mother asked.

  ‘Well,’ I said hesitating, ‘I think she will probably . . .’ I hesitated again, and dropped my voice, acutely aware of the other patients listening and wondering whether to use one of the many euphemisms for death. ‘I think she will probably die, but I just don’t know if it will be within the next few days or take longer.’

  Her mother started crying.

  ‘It’s every parent’s worst nightmare to outlive their children,’ I said.

  ‘She was my only child,’ her mother replied through her tears. I reached out to put my hand on her shoulder.

  ‘I’m so sorry,’ I said.

  ‘It’s not your fault,’ she replied. There was nothing else to be said so after a while I went to find the ward sister.

  ‘I think Mrs T is dying,’ I said. ‘Can’t we put her in a side room?’

  ‘I know,’ the sister said, ‘We’re working on it but we’re desperate for beds at the moment and we’ll have to shift an awful lot of patients around.’

  ‘I’m at the MAST meeting all about Customer Care this morning,’ I said.

  The ward sister snorted. ‘We just give such crap care now,’ she said with feeling. ‘It used to be so much better.’

  ‘But the patients are always telling me how good it is here,’ I said, ‘compared to the local hospitals.’ She said nothing and hurried away, forever busy.

  I returned to the Training and Development Centre. The second session had already started. The PowerPoint presentation now showed a slide with a long list of the Principles of Customer Service and Care.

  ‘Communicate effectively,’ I read. ‘Pay attention to detail. Act promptly.’ We were also advised to develop Empathy.

  ‘You must stay composed and calm,’ Chris the lecturer told us. ‘Think clearly and stay focused. Your emotions can affect your behaviour.’

  How strange it is, I thought as I listened to him talking, that after thirty years of struggling with death, disaster and countless crises and catastrophes, having watched patients bleed to death in my hands, having had furious arguments with colleagues, terrible meetings with relatives, moments of utter despair and of profound exhilaration – in short, a typical neurosurgical career – how strange it is that I should now be listening to a young man with a background in catering telling me that I should develop empathy, keep focused and stay calm. As soon as the signing-out register had been passed around, and I had signed it, thus confirming that the Trust could now state that I had been trained in Empathy and Self-control, and the classification of Abuse and of Fire Extinguishers, in addition to many other things I had already forgotten, I charged out of the room despite Chris’ protests that he had not yet finished.

  Next morning, while I was telling Gail about my training, a junior doctor came to the door. He looked anxious and unhappy. He was one of the doctors on the neurology ward – a ward for people with illnesses of the brain who do not need surgical treatment. These are illnesses like multiple sclerosis or Parkinson’s disease, or strange and obscure diseases, sometimes untreatable, which neurologists find deeply fascinating, and which they collect like rare butterflies and report in their journals.

  ‘I’m sorry to interrupt you . . .’ he began.

  ‘Not at all,’ I replied, pointing to the piles of notes and paperwork on my desk and on the floor around me, ‘I’m only too happy to be distracted.’

  ‘We admitted a fifty-nine-year-old woman over the weekend with progressive dysphasia and then fits and on the scan it looks as though she’s got ADEM.’

  ‘ADEM? It doesn’t sound very surgical,’ I said.

  ‘Acute disseminated encephalo-myelitis,’ he replied – in other words, a sudden and catastrophic inflammation of all of the brain and spinal cord.

  I told him that I didn’t think surgery would be much help.

  ‘Yes, but she’s gone off this morning and blown her left pupil and the scan shows diffuse swelling. We thought she might need decompressing.’

  I reached for my computer keyboard. It sounded as though her brain had become so swollen that she was starting to die from the build-up of pressure in her head, the swollen brain being trapped, so to speak, within the skull. A ‘blown’ pupil – meaning that the pupil of one of her eyes had become very large and was no longer contracting if a light was shone in it – is the first sign of what can be a rapidly fatal process. The fact that she had ‘gone off’ – that she had become unconscious – meant that if something was not done very quickly to reduce the pressure in her head she would die within the next few hours, or even less.

  The scan showed that all of her brain, but especially the left side, was dark with severe swelling, the medical word for this being cerebral oedema. The oedema was a reaction to the ADEM, although the actual cause of ADEM is not known.

  Some parts of the brain can be removed without leaving the patient disabled, but if I removed the swollen part of this woman’s brain she would be left hopelessly disabled, unable to talk or even understand language.

  ‘What about a decompressive craniectomy?’ the neurology junior asked. This is an operation where you remove the top of the patient’s skull to create more space for the swollen brain. It can make the difference between life and death but there was no point in taking half the woman’s skull off if she was going to be left wrecked anyway. ‘She might make quite a good recovery.’

  ‘Really?’ I asked.

  ‘Well, she might do . . .’

  I said nothing for a while and looked sadly at the scan. I noticed that she was almost exactly my own age.

  ‘It’s not my operating day today,’ I remarked eventually. ‘I suppose we ought to give her the benefit of the doubt.’ I said I would see if I could arrange for one of my colleagues to do the operation and made a few phone calls. I settled back to the paperwork again – the operation required was crude and simple but I would have much preferred to be doing it myself instead of reading reports and dictating endless letters. Like all surgeons all I want to do is operate.

  After a while I went up to the theatres to see how my colleague was getting on.

  I was puzzled to see that the light in the anaesthetic room next to the theatre, which serves as an ante-chamber to the theatre, was turned off and the room was dark. This was most unusual. I pushed the door open and started with shock on entering – there was a shroud-wrapped corpse on the trolley on which patients lie waiting to be anaesthetized. A sheet was wrapped around the lifeless body and tied with a large knot at the top, so that the head was hidden. It looked like a figure from a medieval painting of the Dance of Death.

  Feeling very uneasy I walked past the inexplicable corpse and put my head through the theatre doors where my colleague and the nurses and anaesthetists were starting the operation on the woman with ADEM. I found myself in a quandary – had they had a death on the table? Where did the dead body come from? Deaths during an operation are very rare – I have only experienced that most horrible of surgical disasters four times in my career – and the atmosphere in the theatre afterwards was always grim and sombre. The nurses would sometimes be in tears, and I myself would be close to tears, especially if the patient that had died was a child. Yet my colleague and his team all seemed quite cheerful and, I felt, were silently laughing at me. I felt too embarrassed to ask why there was a dead body in the anaesthetic room – if there had been a death on the table I did not want to hurt their feelings by drawing attention to it. So instead I asked him how he was going to carry out the decompressiv
e craniectomy.

  He was standing at the patient’s head, brilliantly illuminated by the operating lights. Her hair had been shaved and he was now painting her bare and depersonalized head with brown antiseptic iodine.

  ‘Oh, a big bi-frontal craniotomy,’ he said. He was going to saw off the front of the woman’s skull in order to allow the woman’s brain to swell out of its bony confines. Afterwards one simply stitches the scalp closed and, if the patient survives, one can replace the bone taken off the skull at a later date once the swelling has resolved.

  I was feeling very uncomfortable, almost frightened, as I talked. I could feel the sinister presence behind me in the darkened anaesthetic room of the shrouded corpse only a few inches away. I asked him what he would do with the falx, the sheet of meninges that separates the two cerebral hemispheres and which might damage the woman’s brain as it swelled out of the opened skull

  ‘Divide it, having sacrificed the saggital sinus anteriorly,’ he replied. We continued in this technical vein for a while until eventually I summoned up my courage to ask about the corpse.

  ‘Oh,’ he said with a laugh, and the rest of the theatre team laughed with him. ‘You noticed! It’s just an organ donor – a brain dead head injury from the ITU. Rather, what’s left of him. That cyclist from two nights ago. He didn’t make it despite surgery. Probably a good thing. The transplant team did a snatch last night. Heart, lung, liver and kidneys – they took the lot, all in good nick. They were delighted. They finished later than usual and the porters were changing shift so they haven’t got round to taking him away yet.’

  11

  EPENDYMOMA

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

  There was little operating to do but much paperwork waiting for me in my office, organized into a series of threatening piles by Gail – I suspect with a certain vengeful glee, since we are in a state of constant warfare trying to offload paperwork into each other’s offices. The many emails from the hospital management I deleted without reading. Among the letters was one from a doctor in a hospital in Lincolnshire asking for my advice about one of my patients – a young woman I had operated upon three times over the preceding ten years for a brain tumour called an ependymoma that kept on recurring, becoming more aggressive and malignant on each occasion. She had had all the possible radiotherapy and chemotherapy and had now been admitted to her local hospital as a terminal case, with severe headaches from yet further recurrence of the tumour. Would I have a look at the latest scan, the doctor asked, and see if anything more could be done, since the family were finding it difficult to accept that the girl was reaching the end of her life.

  I had got to know Helen well over the years and had come to like her greatly. Perhaps that was a mistake. She was always charming and seemed to cope remarkably well with her illness although sometimes I wondered if that was because she was simply unrealistic about her prospects. Denial is not always a bad thing. Her family were devoted to her and, while thanking me effusively whenever I had seen them, would look at me with such an intensity of hope and desperation that their eyes felt like nail guns fixing me to the wall.

  ‘The family have been told by a neurosurgeon in another hospital,’ the doctor in Lincolnshire had added in his letter, ‘that if the tumour is operated on again he can then treat it with photo-dynamic therapy and they are desperate that you should do that so she can then have the treatment.’ Helen’s latest scan accompanied the letter on a CD and after the usual delays and swearing I managed to view it on my office computer. It showed extensive recurrence of the tumour in the right temporal lobe of her brain – an area on which in theory I could operate again but where further surgery, if successful, would only provide a few extra weeks or months of life at best.

  It was clear that her family had had their hopes raised falsely – photo-dynamic therapy had been shown some time ago to be of little use and I was angry that it had been suggested. It seemed unlikely, however, that her family would accept that nothing further could be done and I knew that they would want anything done, even if it only added a few weeks to her life. With little enthusiasm I telephoned my registrar and asked him to arrange for the patient to be transferred to our hospital.

  Over the course of the day, into the evening, I received a series of phone calls and text messages about the patient and the seemingly insuperable problems of transferring her from one hospital to another. Helen was said to be unconscious, and would now need to be transferred on a ventilator and would therefore need an ITU bed on arrival. We had no ITU beds. I suggested the local doctors try their neighbouring neurosurgical unit though I knew that my colleagues there would not be impressed by my plan of operating on such a hopeless case, but then, I told myself, they did not know the family. And then I was told she was better and no longer need an ITU bed. I then rang my registrar who said that we had ward beds and that we would be able to admit her. At ten o’clock in the evening the hospital in Lincolnshire rang me to say that they had been told by my hospital’s bed manager that we did not have any beds.

  In a state of increasing irritation I drove there myself to find a bed and the nurse in charge of admissions. I found her – a highly competent nurse, with whom I have worked for years – by the nurse’s station.

  ‘Why can’t we admit the patient from Lincolnshire?’ I asked.

  ‘I’m sorry Mr Marsh, we are waiting for the London ambulance to collect another patient and we cannot accept the new patient until the bed is empty,’ she replied.

  ‘But she’s coming from over a hundred miles away!’ I said, almost shouting. ‘She’ll arrive in the middle of the bloody night if you insist on waiting for the ambulance to collect the other patient first.’

  The nurse looked anxiously at me, and I worried she was going to burst into tears.

  ‘Look, just tell them to send her,’ I said, struggling to speak more gently. ‘If there are problems say it’s all my fault and that I insisted . . .’

  She nodded her head and said nothing, obviously unhappy about my asking her to break some management protocol about how to admit patients. I felt unable to ask her what she was going to do, reluctant to upset her any further. I turned away and went home. In the past, this would never have happened – an extra bed would always have been found, nor would anybody have questioned my instructions.

  Helen finally arrived in the middle of the night, though when I went into work in the morning nobody knew to which ward she had been admitted and I went to the morning meeting without having seen her. At the meeting I told the on-call registrar to put the patient’s brain scan up. I gave a brief summary of Helen’s history.

  ‘Why do you think I am operating on this hopeless case?’ I asked the juniors. No one volunteered a reply, so I explained about her family and how they found it impossible to accept that nothing more could be done.

  With slowly progressive cancers it can be very difficult to know when to stop. The patients and their families become unrealistic and start to think that they can go on being treated forever, that the end will never come, that death can be forever postponed. They cling to life. I told the meeting about a similar problem some years ago of a three-year-old child, an only child from IVF treatment. I had operated for a malignant ependymoma and he was fine, and had radiotherapy afterwards. When it recurred – which ependymomas always do – two years later, I operated again and it recurred again, deep in the brain, soon afterwards. I refused to operate another time – it seemed pointless. The conversation with his parents was terrible: they wouldn’t accept what I said and they found a neurosurgeon elsewhere who operated three times over the next year and the boy still died. His parents then tried to sue me for negligence. It was one of the reasons I stopped doing paediatrics. Love, I reminded my trainees, can be very selfish.

  ‘Is that why you’re operating on this case? Worried that you might be
sued?’ somebody asked.

  In fact I was not worried about being sued, but I was worried that I was being a coward, or maybe just lazy. Perhaps I was going to operate because I couldn’t face confronting the family and telling them it was time for Helen to die. Besides, the cancer specialists think it’s a big success if the latest expensive new drug keeps a patient alive for an extra few months.

  ‘What’s the photo-dynamic therapy?’ somebody else asked.

  ‘Shining laser light on the tumour,’ my colleague Francis explained. ‘It only penetrates one millimetre and has been shown to be pretty useless. To recommend it now is highly dubious. I think you’re daft,’ he added, looking at me. ‘This will be her fourth op, she’s had radiotherapy, the tumour will grow back within weeks – she’s at high risk of the bone flap getting infected and then you’ll have to remove it and leave her with a big hole under her scalp and she’ll die slowly and miserably with a fungus.’

  I couldn’t deny that this might happen. I turned to the row of registrars sitting at the back of the room and asked if any of them had seen a fungus cerebri.

  It seemed nobody had and I hoped that none of them ever would. I have only seen it once and that was in Ukraine. If you’ve had to take the bone flap out after operating on a malignant tumour because the flap’s got infected and you don’t replace it the patient will then die slowly as the tumour recurs since the tumour can expand outwards through the defect in the skull under the scalp. The patient looks like a Star Trek alien with an extra bit of brain. You don’t die quickly from raised intracranial pressure as you do when the skull is intact.

  ‘Can’t you put a metal plate back in?’ one of the juniors asked.

  ‘It will probably just get infected in turn,’ I said.