by Henry Marsh
‘I don’t think there’s anything else to be done,’ the doctor calling me said down the phone, ‘but he would like you to look at his scans. He has great faith in you. I’ve already shown them to one of the neurosurgeons here and he wasn’t keen.’
‘I’m leaving the country tomorrow morning for a few days,’ I said. ‘Send the scans to me electronically and I’ll have a look at them next week.’
‘Of course,’ she replied, ‘I’ll do that. Thanks.’
Snow was now falling. As I pulled back onto the motorway and continued on my way I found myself engaged in a painful internal dialogue. By chance, I was only a short distance away from the hospital to which David had been admitted and it would be a minor detour to go and see him in person.
‘I really don’t want to go and tell him he is going to die,’ I said to myself, ‘I don’t want to spoil a nice weekend away with my wife.’ But I felt a sort of dragging sensation deep inside myself.
‘Ultimately, if I was dying,’ I heard myself saying, ‘wouldn’t I appreciate a visit from the surgeon in whom I have put my hope for so many years? . . . But I really don’t want to tell him it is time to die . . .’
Angrily, reluctantly, I took the next turning off the motorway and drove to the hospital. It rose like a monolith out of a huge surrounding car park. I walked unhappily along the endless long central corridor inside. It seemed to go on for miles and miles but perhaps this was the effect of my dread at going to talk to my dying patient. I experienced once again my visceral hatred of hospitals and their dull, indifferent architecture within the walls of which so much human suffering must be acted out.
At least the lifts, as I ascended to the fifth floor, didn’t tell me to wash my hands as they do in my own hospital, but the voice telling me when the doors were opening and closing sounded even more irritating than usual.
I finally walked onto the ward. I found David standing by the nurses’ station, in pyjamas, towering above a little group of nurses who were propping him upright. He was leaning a little to one side because of his left-sided weakness.
The doctor who had phoned me was standing next to him and came towards me.
‘They all think I’m a magician! I ring you up and within fifteen minutes you appear!’
I walked up to David who laughed with amazement at my sudden arrival.
‘You again!’ he said.
‘Yes,’ I said. ‘I’ll go and look at the scans.’ I was taken to a nearby computer.
I had not met the doctor caring for him before although we had exchanged letters about David. It was immediately obvious that she was deeply sympathetic.
‘I look after all the patients with the low grade gliomas,’ she said with a slight grimace. ‘Motor Neurone Disease and MS are easy by comparison. The patients with low grade gliomas are all young, with young children and all I can say is go away and die . . . My children are the same age as David’s, go to the same school. It’s difficult not to get involved, not to get emotional.’
I looked at the scan on the computer. It showed that the tumour, which was now cancerous, was burrowing deep into his brain. The fact that the tumour was on the right side of his brain meant, as had been the case with Helen, that his intellect and understanding were still largely intact.
‘Well I could operate,’ I said, ‘but it probably would not buy him much more time . . . a few months at best. It would be prolonging dying, not living. It would waste what little time he has left with false hope and would not be without risk. He’s always made it clear to me that he wanted to know the truth.’ I thought of the other patients I had re-operated on in the past in similar circumstances, such as Helen, who could not bear to face the truth, and how I had usually regretted it. But it is so very difficult to tell your patient that there is nothing more that can be done, that there is no hope left, that it is time to die. And then there is always the fear that you might be wrong, that maybe the patient is right to hope against hope, to hope for a miracle, and maybe you should operate just one more time. It can become a sort of folie à deux, where both doctor and patient cannot bear reality.
While I was looking at the scans David had been guided back to the single room to which he had been admitted the previous day, unconscious and half-paralysed, before the high dose steroid drugs temporarily brought him back to life.
I walked into the room, where his wife and two nurses were standing at the end of the bed. The afternoon light was fading and the room was dark as the electric lights had not yet been switched on. Through the window I could see the sombre day outside, and the hospital car park a few storeys below us, and beyond that a line of trees and houses, with snow falling but not settling on the ground.
David was lying on his back and turned with an effort towards me as I came in. I stood a little nervously above him.
‘I’ve been looking at the scans.’ I paused. ‘I always told you I’d tell you the truth.’
I noticed that he was not looking at me as I spoke and I realized that I was on his left, hemianopic side. He probably could not see me as the right side of his brain was no longer working so I walked round the bed and, with my knees cracking, knelt down beside him. To stand over your dying patient would be as inhuman as the long hospital corridors. We looked into each other’s eyes for a moment.
‘I could operate again,’ I said slowly, having to force the words out, ‘but it would only get you an extra month or two at best . . . I have sometimes operated on people in your situation . . . I usually regretted it.’
David started to reply, talking equally slowly.
‘I realized things did not look good. There were . . . various things I needed to organize but I . . . have . . . done that all now . . .’
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 hope I do these things better than I did in the past, but 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 . . .’
In the past he had been a competitive cyclist and runner and he had large, muscular arms. 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. His doctor followed me.
‘Thank you so much for coming. It will make everything much easier. We’ll get him home and organize palliative care,’ she said.
I waved my hands despairingly in the air and walked away, imitating the staggering walk of a drunk, drunk on too much emotion.
‘I’m happy,’ I called back to her as I walked down the corridor. ‘It was good, so to speak, to have that conversation.’
Will I be so brave and dignified when my time comes? I asked myself as I walked out into the grim black asphalt car park. The snow was still falling and I thought yet again of how I hate hospitals.
I drove away in a turmoil of confused emotions. I quickly became stuck in the rush-hour traffic, and furiously cursed the cars and their drivers as though it was their fault that this good and noble man should die and leave his wife a widow and his young children fatherless. I shouted and cried and stupidly hit the steering wheel with my fists. And I felt shame, not at my failure to save his life – his treatment had been as
good as it could be – but at my loss of professional detachment and what felt like the vulgarity of my distress compared to his composure and his family’s suffering, to which I could only bear impotent witness.
13
INFARCT
n. a small localized area of dead tissue caused by an inadequate blood supply.
On one of my regular trips to the neurosurgical department in America where I have an honorary teaching post I delivered a lecture entitled ‘All My Worst Mistakes’. It had been inspired by Daniel Kahneman’s book Thinking, Fast and Slow, a brilliant account, published in 2011, of the limits of human reason, and of the way in which we all suffer from what psychologists call ‘cognitive biases’. I found it consoling, when thinking about some of the mistakes I have made in my career, to learn that errors of judgement and the propensity to make mistakes are, so to speak, built in to the human brain. I felt that perhaps I could be forgiven for some of the mistakes I have made over the years.
Everybody accepts that we all make mistakes, and that we learn from them. The problem is that when doctors such as myself make mistakes the consequences can be catastrophic for our patients. Most surgeons – there are always a few exceptions – feel a deep sense of shame when their patents suffer or die as a result of their efforts, a sense of shame which is made all the worse if litigation follows. Surgeons find it difficult to admit to making mistakes, to themselves as well as to others, and there are all manner of ways in which they disguise their errors and try to put the blame elsewhere. Yet as I approach the end of my career I feel an increasing obligation to bear witness to past mistakes I have made, in the hope that my trainees will learn how not to make the same mistakes themselves.
Inspired by Kahneman’s book I set out to remember all my worst mistakes. For several months, each morning, I would lie in bed before getting up to head off for my daily run round the local park, thinking over my career. It was a painful experience. The more I thought about the past the more mistakes rose to the surface, like poisonous methane stirred up from a stagnant pond. Many had been submerged for years. I also found that if I did not immediately write them down I would often forget them all over again. Some, of course, I have never forgotten and that has usually been when the consequences for myself had been especially unpleasant.
When I delivered my lecture to my American colleagues, it was met by a stunned silence and no questions were asked. For all I know they may have been stunned not so much by my reckless honesty as by my incompetence.
Surgeons are supposed to talk about their mistakes at regular ‘Morbidity and Mortality’ meetings, where avoidable mistakes are discussed and lessons learned, but the ones I have attended, both in America and in my own department are usually rather tame affairs, with the doctors present reluctant to criticize each other in public. Although there is much talk of the need for doctors to work in a ‘blame-free’ culture it is very difficult in practice to achieve this. Only if the doctors hate each other, or are locked in furious competition (usually over private practice, which means money), will they criticize each other more openly, and even then it is more often behind each other’s backs.
One of the mistakes I discussed in my lecture, and which I had not forgotten, involved a young man who had been admitted to the old hospital, shortly before it closed. My registrar – in fact one of the American trainees who are sent from their department in Seattle to work in London in my hospital for a year as part of their training – came to find me and asked me to look at a scan.
We walked from my office to the X-ray viewing room. This was before the X-ray system had been computerized and the patients’ brain scans were all on large sheets of film. They were kept on chrome and steel frames on which the films were hung like washing on a line, each frame on roller bearings so that the frames could be pulled out smoothly, one by one. The system was like an antique Rolls Royce – old-fashioned but beautifully engineered. Provided that you had highly efficient X-ray secretaries – which we did – the system was completely reliable and quite unlike the computers that now dominate my working life. My registrar pulled out some scans in front of me.
‘He’s a thirty-two-year-old man at St Richard’s – apparently he’s become paralysed down the left side,’ he told me.
The scan showed a large dark area on the right side of the man’s brain.
To the man with a hammer, it is said, all things look like nails. When brain surgeons look at brain scans they see things that they think require surgery and I am, alas, no exception. I looked at the scan quickly – I was already late for my outpatient clinic.
I agreed with my registrar that it was probably a tumour but one which was impossible to remove. All that could be done would be a biopsy operation where a small part of the tumour would be removed and sent for analysis. I told him to bring the patient over to our hospital for this to be done. In retrospect I was careless – I should have asked more questions about the history and if I had been given the right information, which admittedly I might not have been since it was all at second hand, I would probably have looked more critically at the scans or asked for my neuroradiologist’s opinion.
So the young man was transferred to the neurosurgical unit. My registrar duly carried out the biopsy operation – a minor and relatively safe operation done through a half inch hole drilled in the skull that took less than an hour. The analysis came back that the abnormality was not a tumour but an infarct – he had a suffered a stroke, unusual in a man his age, but not unheard of. In retrospect it was rather obvious that this was what the scan had shown and I had misinterpreted it. I was embarrassed but not especially troubled – it did not seem too terrible a mistake to make and a stroke seemed better than a malignant tumour. The patient was transferred back to the local hospital to be investigated for the cause of his stroke. I thought nothing more about it.
Two years later I received a copy of a long letter, written in a shaky, elderly hand, from the man’s father. The letter had been sent to the hospital and passed on to me for my comments by the Complaints Office, recently renamed by the new chief executive as the ‘Complaints and Improvements Department’. The letter accused me of being responsible for the death of his son who had died several months after being transferred back to the local hospital. His father was certain he had died because of the operation.
I invariably become very anxious when I receive letters of complaint. Every day I will make several dozen decisions that, if they are wrong, can have terrible consequences. My patients desperately need to believe in me, and I need to believe in myself as well. The delicate tight-rope walking act of brain surgery is made all the worse by the constant pressure to get patients in and out of hospital as quickly as possible. When I receive one of these letters, or one from a solicitor announcing the intention of a patient of mine to sue me, I am forced to see the great distance beneath the rope on which I am balancing and the ground below. I feel as though I am about to fall into a frightening world where the usual roles are reversed – a world in which I am powerless and at the mercy of patients who are guided by suave, invulnerable lawyers who, to confuse me even further, are dressed in respectable suits just as I am and speak in the same self-confident tones. I feel that I have lost all the credibility and authority that I wear like armour when I do my round on the wards or when I open a patient’s head in the operating theatre.
I called in the dead man’s notes and learned that he had died from a further stroke caused by a disease affecting the blood vessels in his brain that had resulted from the first stroke, which I had misinterpreted as a tumour. The biopsy operation was unnecessary and unfortunate but irrelevant. I explained, apologized and defended myself in a series of letters, which the hospital management rewrote in the third person and sent off to the father with the chief executive’s signature. The father was not satisfied and demanded a Complaints meeting which duly took place some months later. A smartly dressed middle-aged woman from the
Complaints and Improvements Department, who I had never met before and who obviously knew nothing about the details of the case, chaired the meeting. The dead man’s elderly parents sat opposite me, glaring with hatred and anger, convinced my incompetence had killed their son.
I spoke to the parents, unnerved and frightened by their anger, and became quite upset. I tried to apologize but also to explain forcefully why the operation, although a mistake, had nothing to do with their son’s death. I had never had to attend such a meeting before and I don’t doubt that I made a mess of it. The Complaints and Improvements Manager interrupted me and told me I should listen to what the patient’s father had to say.
I therefore had to sit for what felt like a very long time while the bereaved man poured out his grief and anger. I was told afterwards by another manager present at the meeting that the lady from Complaints and Improvements was silently weeping as the old man described his suffering, for which I was held to be uniquely responsible. I learned later that the day of the meeting was the second anniversary of his son’s death and he had been to visit his grave at the local cemetery that morning. The Complaints and Improvements manager eventually dismissed me and I left the room feeling very shaken.
I thought that would be the end of the matter but a few weeks later the chief executive of the hospital Trust rang me on my mobile, entirely out of the blue, just a few days before Christmas. He was a new appointment, recently parachuted in by the Department of Health because of the Trust’s parlous financial situation. His predecessor had been suddenly and ignominiously dismissed. I had met this new chief executive briefly when he started. As with all NHS chief executives in my experience (I have now got through eight) they do the rounds of the hospital departments when they are appointed and then one never sees them again, unless one is in trouble, that is. This is called Management, I believe.