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

by Henry Marsh

There have been several high-profile court cases in recent years as to whether treatment that keeps these people alive – since they cannot eat or drink – should be withdrawn or not, whether they should be left to die or not. In several cases the judges decided that it was reasonable to withdraw treatment and let the vegetative patients die. This does not happen quickly – instead the law, solemn and absurd, insists that the patients are slowly starved and dehydrated to death, a process that will take several days.

The devout Catholic staff did not accept the grave lesson of neuroscience – that everything we are depends upon the physical integrity of our brains. Instead, their ancient faith in an immaterial human soul meant that they could create a kind and caring home for these vegetative patients and their families.

I hope I am a good surgeon but I am certainly not a great surgeon. It’s not the successes I remember, or so I like to think, but the failures. But here in the nursing home were several patients I had already forgotten. Some of them were people I had simply been unable to help, but there was at least one man who, as my juniors put it in their naive and tactless way, I had wrecked.

She expressed some doubts as to whether her daughter had really said the things transcribed by the nurses. There is no way of knowing, of course. The woman’s mother lives in a nightmare, a labyrinth of uncertainty and of hopeless love, her daughter both alive and dead. Behind her daughter’s rigid, expressionless face, is she in fact awake? Is she aware, in some way, of what is going on outside her paralysed body? Are the nurses inventing her letters – wittingly or unwittingly? Does their faith deceive them? Can we ever know?

HUBRIS n. arrogant pride or presumption; (in Greek tragedy) excessive pride towards or defiance of the gods, leading to nemesis.

As I started to remove the last part of the tumour I tore a small perforating branch off the basilar artery, a vessel the width of a thick pin. A narrow jet of bright red arterial blood started to pump upwards. I knew at once that this was a catastrophe. The blood loss was trivial, and easy enough to stop, but the damage to the brainstem was terrible. The basilar artery is the artery that keeps the brainstem alive and it is the brainstem that keeps the rest of the brain awake. As a result the patient never woke up and that was why, seven years later, I saw him curled into a sad ball, on a bed in the nursing home.

I gradually regained my courage and used what I had learned from the tragic consequences of my hubris to achieve much better results with tumours of this kind. I would, if necessary, operate in stages over several weeks, I would operate with a colleague, taking the operating in turns with an hour on and an hour off, like drivers in a military convoy. I would not try to remove all of the tumour if it looked as though it would be particularly difficult. I would rarely let an operation take longer than seven or eight hours.

There were two other lessons that I learned that day. One was not to do an operation that a more experienced surgeon than me did not want to do; the other was to treat some of the keynote lectures at conferences with a degree of scepticism. And I can no longer bear to listen to music when operating.

PHOTOPSIA n. the sensation of flashes of light caused by mechanical stimulation of the retina of the eye.

Some of them knew me and looked somewhat startled to see me disguised as a patient in a dressing gown with a leg in plaster. Most of them stopped and commiserated and laughed with me at my bad luck. One of them, a particularly pompous physician, stopped for a moment and looked surprised. ‘Fracture dislocation of the left ankle,’ I said. ‘Oh dear,’ he said in a very prim voice, as though he disapproved of the vulgar way in which, by allowing my leg to be broken, I had become a mere patient, and he quickly returned to his room.

ASTROCYTOMA n. a brain tumour derived from non-nervous cells. All grades of malignancy occur.

Few people outside medicine realize that what tortures doctors most is uncertainty, rather than the fact they often deal with people who are suffering or who are about to die.

There are various ways of doing this – one is based on a technique from game theory called the ‘standard gamble’. It was invented by the great mathematician von Neumann who – it is perhaps worth pointing out – also recommended on the basis of game theory a pre-emptive nuclear strike against the Soviet Union in the days of the Cold War. Some might conclude that the standard gamble is not necessarily the best basis for human decision-making.

At the end of all this, a final figure is generated – the Incremental Cost Effectiveness Ratio, which is the cost of one extra quality-adjusted life year which the new treatment achieves when compared to the best current alternative. If this is more than £30,000 NICE will not approve the use of the drug by the NHS, although exceptions will sometimes be made for patients dying from rare cancers.

Hope is beyond price and the pharmaceutical companies, which are run by businessmen not altruists, price their products accordingly.

OLIGODENDROGLIOMA n. a tumour of the central nervous system.

ANAESTHESIA DOLOROSA n. severe spontaneous pain occurring in an anesthetic area.

‘There was only one admission last night,’ he said, looking at the X-ray screen. ‘Not very interesting,’ he added. He was sprawled back in his chair, his back turned to us, trying to appear cool but looking instead like an awkward teenager. ‘Don’t ever say that!’ I said. ‘Who are you, by the way? And what do you want to be when you grow up?’ – a standard question I ask all the new doctors. ‘Orthopaedic surgeon,’ he told me. ‘Sit up straight and look us in the eye when you talk,’ I said. I told him that the progress of his medical career was going to depend largely on how well he presented himself and his cases at meetings like this one.

The new chief executive for the Trust, the seventh since I had become a consultant, was especially keen on the twenty-two-page Trust Dress Code and my colleagues and I had recently been threatened with disciplinary action for wearing ties and wristwatches. There is no evidence that consultants wearing ties and wristwatches contributes to hospital infections, but the chief executive viewed the matter so seriously that he had taken to dressing as a nurse and following us on our ward rounds, refusing to talk to us and instead making copious notes.

My outpatient clinic is an odd combination of the trivial and the deadly serious. It is here that I see patients weeks or months after I have operated on them, new referrals or long-term follow-ups. They are wearing their own clothes and I meet them as equals. They are not yet in-patients who have to submit to the depersonalizing rituals of being admitted to the hospital, to be tagged like captive birds or criminals and to be put into bed like children in hospital gowns. I refuse to have anybody else in the room – no students, no junior doctors or nurses – only the patients and their families.

With one patient with a brain tumour I will be trying to explain that his or her life is probably coming to an end, or that they require terrifying surgery to their brain, whereas with the next I will be telling them, struggling to appear sympathetic and uncritical, that their backache is perhaps not as terrible a problem as they feel it to be and that life can perhaps be worth living despite it. Some of the conversations I have in the clinic are joyful and some absurd and others can be heart-breaking. They are never boring.

‘Corporate outpatient management has said we must keep the patient’s names covered to preserve confidentiality,’ he said. ‘There’s some target for it. We’ve been told to do it.’ I called out the name of the first patient in a loud voice, looking round at the assembled patients waiting to see me. A young man and an elderly couple hurriedly got up from their chairs, anxious and deferential in the way we all are when we go to see doctors. ‘How’s that for confidentiality?’ I muttered to the hapless receptionist.

I turned away from the reception desk. ‘I’m Henry Marsh,’ I said to the young man as he came up to me, becoming a kind and polite surgeon, instead of an impotent and angry victim of government targets. ‘Please follow me.’

He was a young policeman who had suffered an epileptic fit several weeks ago – suddenly, out of the blue, changing his life forever. He was taken to his local A&E department where a brain scan showed a tumour. He had recovered from the fit, and as the tumour was a small one, he was sent home and a referral made to the regional neurosurgical centre. It took a while for the referral letter to be passed on to me so he had to wait two weeks before we finally met – two weeks waiting to hear, in effect, whether he would live or die since none of his local doctors would have known enough about brain tumours to be able interpret the scan with any confidence.

‘This may take a while,’ I added. ‘The scans are on the computer network of your local hospital and this is then linked over the net to our system…’ As I spoke I typed on the keyboard looking for the icon for his hospital’s X-ray network. I found it and summoned up a password box. I have lost count of the number of different passwords I now need to get my work done every day.

I was painfully aware of the anxious man and his family watching my every move, waiting to hear if I would be reading him his death sentence or not. ‘It was so much easier in the past,’ I sighed, pointing at the redundant light-screen in front of my desk. ‘Just thirty seconds to put an X-ray film up onto the X-ray screen. I’ve tried every bloody password I know.’

I had had to send four of the twelve patients home from the clinic without having been able to see their scans, so that the appointments had been entirely wasted and th...

‘It’s just like this with the police force,’ the patient said. ‘Everything’s computerized and we are constantly being told what to do but...

I hurried past the waiting patients in the subterranean waiting room and ran up the two flights of stairs to the X-ray department – it is quicker than going by the lifts and without a condescending voice telling me to wash my hands.

I went back to the X-ray Department and found Caroline at her desk. I told her that Fuck Off 45 did not work. ‘Well,’ she sighed, ‘I’d better come and look. Maybe you don’t know how to spell Fuck Off.’ We went downstairs together and returned to the consultation room. ‘Now that I think of it,’ she said. ‘It might have become Fuck Off 47.’ She typed in ‘Fuck Off 47’ and the computer, having checked my credentials – although they were really Mr Johnston’s – to its satisfaction, finally downloaded the menu for the X-ray department at the patient’s hospital.

The patient’s scan showed an abnormal area – a little like a small, white ball, pressing on the left side of his brain. ‘Well,’ I said, knowing what had been preying on his mind for the last two weeks, and more particularly over the past fifty minutes, ‘it doesn’t look like cancer … I think everything’s going to be OK.’ All three of them sat back a little in their chairs as I said this, and the mother reached out for her son’s hand, and they smiled to each other. I felt considerable relief myself. I often have to reduce people to tears as they sit opposite me in the outpatient room.

Not for the first time, I thought of the trivial nature of any problems that I might have compared to my patients’ and felt ashamed and disappointed that I still worry about them nevertheless. You might expect that seeing so much pain and suffering might help you keep your own difficulties in perspective but, alas, it does not.

I told her that, as a brain surgeon, I couldn’t give a shit about her bowel movements although the Trust management clearly considered it a matter of deep importance. We laughed together for a long time. When we had first met, her eyes were dull with pain-killing drugs and if she tried to talk her face would contort with agonizing pain. I thought how radiantly beautiful she now looked. She stood up to leave and went to the door but then came back and kissed me. ‘I hope I never see you again,’ she said. ‘I quite understand,’ I replied.