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

by Henry Marsh

So I became hardened in the way that doctors have to become hardened and came to see patients as an entirely separate race from all-important, invulnerable young doctors like myself. Now that I am reaching the end of my career this detachment has started to fade. I am less frightened by failure – I have come to accept it and feel less threatened by it and hopefully have learned from the mistakes I made in the past. I can dare to be a little less detached. Besides, with advancing age I can no longer deny that I am made of the same flesh and blood as my patients and that I am equally vulnerable.

On Monday morning I had awoken at seven, to the sound of heavy rain. It was February and the sky, seen dimly through my bedroom windows, was the colour of lead.

The day would end with the misery of my having to apologize to at least one patient, who would have been kept waiting all day, nil-by-mouth, starved and anxious, on the off-chance that a post-operative bed might become available, to be told that their operation would have to be postponed.

‘The only condition we might treat in somebody that age would be a chronic subdural,’ he replied confidently. I asked him about the significance of the aortic stenosis. ‘It means that a general anaesthetic would probably kill her.’

Eventually the old woman’s brain scan suddenly flashed up on the wall in front of us. It showed a thick layer of fluid between the inside of her skull and the surface of her brain, distorting the right cerebral hemisphere. It was yet another old person with a chronic subdural – the commonest emergency in neurosurgery.

‘I always find these cases by far the most interesting,’ he said. ‘The young ones,’ he nodded towards the row of junior doctors, ‘all want to operate, and want big, exciting cases – that’s fair enough at their age, but the discussions about these everyday cases are fascinating.’

The patient, a short and dominating woman with long grey hair, well turned out and looking younger than her age, marched into the room in an authoritative way. She sat in the chair beside my desk and her three children sat in a row facing me, a polite but determined chorus.

The only sure way of knowing whether the tumour was responsible for her problems, however, would be by removing it. The problem, I told them, was that it was impossible to predict from the scan just how great the risk was of making her worse. It is a question of how stuck the surface of the tumour is to the surface of the brain and until you operate you cannot tell how easy or difficult it will be to separate the tumour away from the underlying brain. If it is stuck, the brain will be damaged and she could be left paralysed down the right side of her body and unable to communicate, as each half of the brain controls the opposite side of the body and the function of speech is on the left side of the brain.

‘So there’s a one in five chance of making her worse?’ In fact it was probably slightly more than that because 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.

I was sitting with my back to the window with the three children in front of me as I spoke, and wondered if they could see through the window behind me the large municipal cemetery in the distance beyond the hospital car park.

Instead of operating I had therefore spent much of the day dozing angrily on the sofa in the surgeon’s sitting room, watching the dull sky through the high, viewless windows, waiting for the test to be done. The occasional pigeon flew past, and sometimes I could see airliners in the distance nosing their way through the low clouds towards Heathrow.

I dislike telling patients that their operation has been cancelled at the last moment just as much as I dislike telling people that they have cancer and are going to die. I resent having to say sorry for something that is not my fault and yet the poor patients cannot very well be sent away without somebody saying something.

The man had suffered from trigeminal neuralgia for many years and the standard pain-killing drugs had become increasingly ineffective. Trigeminal neuralgia is a rare condition – victims suffer excruciating spasms of pain in one side of the face. They say it is like a massive electric shock or having a red hot knife pushed into their face. In the past, before effective treatment became available, it was well-recognized that some people who suffered from it would commit suicide because of the pain.

The operation involves exposing one side of the brain through a very small opening in the skull behind the ear and gently displacing a small artery off the sensory nerve – the trigeminal nerve – for the face. The pressure of the artery on the nerve is responsible for the pain though the exact mechanism is not understood.

When I started to approach the nerve, deep in the part of the skull known as the cerebellopontine angle, the vein tore and a torrential haemorrhage of dark purple venous blood resulted. I was operating at a depth of six or seven centimetres, through a two-centimetre diameter opening, in a space only a few millimetres across, next to various vital nerves and arteries. The bleeding hides everything from view and you have to operate by blind reckoning, like a pilot lost in a cloud, until you have controlled the bleeding point.

‘It looks very straightforward. It’s going to be easy,’ I added. This was a lie and I did not expect Rachel to believe it. Few anaesthetists believe what surgeons tell them.

‘She might bleed like a stuck pig. The tumour might be horribly stuck to the brain so it will take hours and at the end we’re left with the brain looking a horrible mess and she’s crippled, or the tumour might just jump out and scamper round the theatre.’

Examining patients at the end of the operating list, making sure that they are, as the jargon has it, ‘awake and fully orientated with a GCS of 15’, is an important part of the neurosurgeon’s day.

I told her that it was largely a matter of luck but she probably didn’t believe me – they never do when an operation has gone well.

‘I’m sorry I lost my temper with your registrar yesterday…’ she began. ‘Don’t think about it,’ I replied cheerfully. ‘I was an angry relative myself once.’

Thirty years ago British hospitals always had a junior doctor’s bar where you could go for a drink at the end of a long day, or where – if you had any free time – you could spend the evening smoking and drinking when on call, or playing on the Space Invaders or Pacman machines in a corner of the room.

I was standing at the bar one evening, drinking beer and gossiping with colleagues, probably discussing patients and their illnesses in that slightly swaggering way that young doctors have when talking to each other. I was probably also feeling a little guilty about not returning home more promptly to see my wife Hilary and our three-month-old son William when my bleep announced an outside call. I found the nearest phone to be told by Hilary, who sounded desperate, that our son had been admitted to the local hospital, seriously ill, with some kind of problem in his brain.

My wife and I spent the next few weeks in that strange world one enters when you fear for your child’s life – the outside world, the real world, becomes a ghost world, and the people in it remote and indistinct. The only reality is intense fear, a fear driven by helpless, overwhelming love.

In a kind of fugue state, I wandered around the hospital’s long corridors, now largely empty, helplessly trying to find the consultant – a man who seemed to have become as mythical as the neurosurgeons in my own hospital – and eventually, despairing, unable to stand it any longer, I abandoned my wife and child and went home, where I smashed a kitchen chair in front of my alarmed parents and swore to sue the hospital if William came to any harm.

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.

Years afterwards, when training as a paediatric brain surgeon myself, I watched a child bleed to death in the very same operating theatre where my son had been treated, as my boss – the very surgeon who had saved my son’s life – now failed with a similar tumour.

Doctors, I tell my trainees with a laugh, can’t suffer enough.

‘This is the neurosurgical office!’ I said, feeling like a pompous fool. ‘You’re not welcome here!’ They looked at me in surprise. ‘The management said all the facilities would be shared,’ one of them said, looking at me in disgust.

It is little consolation that my colleagues and I have been left undisturbed in the red leather sofa room, our little oasis, ever since, although I believe I have become an object of deep dislike among many of the other surgeons in the hospital.

The trouble is that we cannot start the operation until we know that there is going to be a bed into which to put the patient after the operation, and this is often not the case. The stream of initiatives and plans and admonitions from the government and management that we must work ever more efficiently feels like a game of musical chairs – the music is constantly being changed, indeed with the latest round of reforms the government has even changed the orchestra – but there are always more patients than beds and so I spend many hours lying on a sofa, staring gloomily at the clouds, watching the pigeons hurrying by.

The lobectomized men were, it seemed to me, some of the worst affected of the patients – dull and apathetic and zombie-like. I was shocked to find, when surreptitiously looking at their notes, that there was no evidence of any kind of follow-up or post-operative assessment. In all the patients who had been lobectomized there would be a brief note stating ‘Suitable for lobectomy. For transfer to AMH’. The next entry would read ‘Returned from AMH. For removal of black silk sutures in nine days’, and that was it. There might be the occasional entry years later stating, for instance ‘Called to see. Fight with other patient. Scalp laceration sutured’, but other than the notes made at the time of the patient’s first admission to the hospital, usually with an episode of acute psychosis, the medical notes were empty even though the patients had been in the hospital for many decades.

‘The Royal Commission came yesterday,’ Vince said to me with a grin ‘They were very impressed by the suits. The nursing officer didn’t want you around in case you said the wrong thing.’

‘Something incomprehensible about the brain,’ I said, ‘written by an American psychologist who specializes in treating obsessional compulsive disorder with group therapy based on combining Buddhist meditation with quantum mechanics.’ He snorted. ‘How fucking ridiculous! Didn’t you once do psychosurgery for OCD?’

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.

I was early and had to wait for the junior doctors to arrive. The days of white coats are long gone and instead the juniors turn up in Lycra bicycling gear or, if they have been on duty overnight, in the surgical scrubs made popular by TV medical dramas.

She talked in an irritated and disapproving tone of voice. This invariably had a dampening effect on the meetings when it was her turn to present the cases. I had never understood why she wanted to train as a neurosurgeon.

As she talked she typed on the keyboard and the slices of a huge black-and-white brain scan started to appear, like a death sentence, out of the dark onto the white wall in front of us.

‘You won’t believe this,’ one of the other registrars broke in. ‘I was on yesterday evening and took the call. They sent the scan on a CD but because of that crap from the government about confidentiality they sent two taxis. Two taxis! One for the fucking CD and one for the little piece of paper with the fucking encryption password! For an emergency! How stupid can you get?’

‘Yes. The contusions on the left are so big that it’s called a burst frontal lobe. All that area of brain has been destroyed. And what about the other side?’ ‘There are contusions there as well, but not as big.’ ‘I know he was talking at first and in theory might make a good recovery but sometimes you get delayed intraparenchymal bleeding like this and the scan now shows catastrophic brain damage.’