by Henry Marsh
He spoke movingly of the difficulties of treating dying patients, and the fact that he had so few effective treatments.
‘We would very much like to have the choice of using this drug,’ he concluded.
‘At any cost?’ the chairman asked, delivering the coup de grace. The expert had no answer to this terrible question. Once the discussion had ended the patient representatives and experts and outside observers were then ushered out of the room and the second part of the meeting – where a decision is made whether to allow the NHS to use the drug or not, but in camera – started.
‘Surely,’ I wanted to say to the hard-nosed health economists and public health doctors around me, but did not dare, ‘the real utility of the drug is to give dying patients hope? The hope that they might be statistical outliers and live longer than average? How do you measure the utility of hope?’
I could have delivered an impassioned lecture on the subject. I have spent much time talking to people whose life was coming to an end. Healthy people, I have concluded, including myself, do not understand how everything changes once you have been diagnosed with a fatal illness. How you cling to hope, however false, however slight, and how reluctant most doctors are to deprive patients of that fragile beam of light in so much darkness. Indeed, many people develop what psychiatrists call ‘dissociation’ and a doctor can find himself talking to two people – they know that they are dying and yet still hope that they will live. I had noticed the same phenomenon with my mother during the last few days of her life. When faced by people who are dying you are no longer dealing with the rational consumers assumed by economic model-builders, if they ever existed in the first place.
Hope is beyond price and the pharmaceutical companies, which are run by businessmen not altruists, price their products accordingly.
The admirable purpose of NICE’s technology appraisal (which is only one part of NICE’s work) is to try to provide a countervailing force to the pharmaceutical companies’ pricing policies. The methodology used for the drug in question was unrealistic, verging on the absurd, and I wondered how many of the people sitting round the hollow square understood the difficulties and deceptions involved in treating patients who are dying, where the real value of a drug such as this one is hope, and not the statistical probability of living, possibly in great pain, for an average of an extra five months.
I kept my doubts to myself since I firmly believe that the pricing policies of the great drug companies must be resisted and that healthcare costs, like greenhouse gases, must be curbed. The abstract discussion continued.
‘But the MS doesn’t even involve a PSA!’ a young health economist was saying with deep indignation. ‘And if you want my opinion we should toss this application out . . .’
‘Surely not Prostate Specific Antigen?’ I asked my neighbour, unable to resist a silly joke.
‘No,’ he said. ‘Probabilistic Sensitivity Analysis.’
‘Well, I have some problems with PSAs,’ the chairman said, ‘but the assumptions about the haq slope are important and the lowest possible icer is £150,000 so even though EOL applies there is no way this drug will pass. At a cost of £40,000 per year for treatment per patient there was never any chance it could be cost-effective.’
This last one at least was an acronym I knew – End of Life was a compromise NICE had recently been forced to make to allow the use of expensive drugs in small groups of patients dying from rare cancers.
The discussion went on interminably. Half of my fellow committee members spoke and argued in the arcane language of cost-effectiveness analysis with passion and assurance, while the other half nodded wisely.
Did they really understand all this? I felt ashamed by my ignorance.
Eventually the chairman looked round the committee.
‘I think we are looking at a minded “No” here, are we not?’ he said.
What this means is that the committee’s recommendation will go out to consultation and all the interested parties – patient groups, manufacturers, clinicians – can criticize and comment before a final conclusion is reached. NICE bends over backwards to be transparent and to involve all the ‘stakeholders’ involved in its deliberations and its portrayal in the media. Besides, it is just possible that the pharmaceutical company who make the drug might reduce the price.
I took the train back to London that afternoon and arrived back at Euston at seven in the evening. I walked the two miles to Waterloo in the dark January evening and along with hundreds of commuters crossed the bridge over the oil-black river, the city to either side of us made wonderful by millions of electric lights glittering in the night over snow-covered roofs. It was good to escape, if only for a few hours, the world of disease and death in which I spend so much of my life.
24
OLIGODENDROGLIOMA
n. a tumour of the central nervous system.
It was Sunday evening, and there were three patients with brain tumours on the operating list for the next day: a woman my own age with a slowly growing meningioma, a young doctor with an oligodendroglioma that I had already operated on some years earlier which was now growing back again and which we both knew would ultimately prove fatal, and an emergency admission whom I had not yet seen. I took my bicycle to the hospital’s basement entrance, next to the wheelie bins where the nurses sometimes come to smoke cigarettes. The door’s lock seems to be permanently broken so I can enter the building and take my bike up in the service lift to the back of the operating theatres where I then leave it and go to see my patients. I went to the women’s ward first to find the woman with a meningioma. I met one of the senior sisters – a friend for many years – coming down the corridor. She had a coat on and must have finished her shift. She was almost in tears.
I put my hand out to her.
‘Oh it’s hopeless,’ she said. ‘We’ve got so many staff shortages this week and all we can get at night are agency nurses who are worse than useless. And the news has all these stories about bad nursing care . . . but what can we do about it?’
I looked at the white board on the wall beside the nurses’ station which lists all the patients on the ward. The patients are moved around so continually because of the lack of beds that the board is rarely up-to-date and finding patients is often very difficult. I could not see my patient’s name on the list. There was a group of nurses who were laughing and shouting by the desk, and as far as I could tell what they were discussing had nothing to do with the patients.
‘Where’s Mrs Cowdrey, the patient for tomorrow’s list?’ I asked.
One of the agency nurses looked briefly at me and then pulled out a printed sheet of paper from her pocket which listed all the patients. She looked at it uncertainly, shrugged her shoulders and mumbled something.
‘Who’s in charge?’ I asked
‘Chris.’
‘Where is she?’
‘She’s on a break.’
‘Do you have any idea where Mrs Cowdrey might be?’
‘No,’ she said with a shrug.
So I walked down the corridor to the men’s ward, which has some side rooms in which female patients are occasionally placed.
I found a nurse whom to my relief I did recognize – one of the many Filipino nurses in the department whose friendly and gentle nursing skills cannot be too highly praised.
‘Ah! Gilbert,’ I said, happy to find somebody I knew ‘Have you got my woman with a meningioma for tomorrow?’
‘Sorry, Mr Marsh, no. Only the two men. Maybe you should try Kent Ward?’
So I headed off up the stairs to Kent, the neurology ward. For reasons known only themselves the management have recently rearranged our bed allocation, turning half the female neurosurgical ward into a ward for neurological stroke patients and relocating the displaced neurosurgical patients onto the neurological ward on the next floor up. So I trudged up the stairs to the
neurological ward. The entrance was locked and I found that I had left my swipe card at home so I rang the bell beside the door. I had to wait many minutes before the lock buzzed and I could push the door open. I walked down the yellow-walled corridor beyond, with the patient bays to one side, each with six beds, packed closely together, like stalls in a cattle shed.
‘Have you got any of my patients for surgery tomorrow?’ I said hopefully to a tall male nurse sitting at the nursing station.
He looked dubiously at me.
‘I’m Mr Marsh the consultant neurosurgeon,’ I said, irritated at not being recognized in my own hospital.
‘Bernadette’s in charge. She’s with a patient in the shower,’ he replied in a bored voice.
So I waited until Bernadette, wearing a pair of large white wellington boots and a plastic apron, emerged from the shower room, leading a bent and elderly woman on a Zimmer frame.
‘Oh Mr Marsh!’ she said with a smile. ‘Are you on your usual hunt for your patients? We haven’t got any here this evening.’
‘This really is driving me nuts,’ I said. ‘I don’t know why I bother. It’s taken me twenty minutes just not to find one patient. Maybe she’s not coming in this evening after all.’
Bernadette smiled sympathetically at me.
I found the second patient – the young doctor – sitting at one of the tables outside on the balcony between the male and female surgical wards, working on his laptop.
The original plans for this wing of the hospital – built ten years ago – had been for a bigger building than the one which was eventually built. It was built under the Private Finance Initiative favoured by the government of the time and as with most PFI schemes the design of the building was dull and unoriginal. Nor was it cheap, since PFI has proved to be a very expensive way of building second-rate public buildings. Some would consider PFI to be an economic crime, although nobody is to be held responsible for it. It is clear now that PFI was part of the same debt-crazed culture that gave us Collateralized Debt Obligations and Credit Default Swaps and all those other dishonest acronyms and financial derivatives that have brought us (though not the bankers) to the edge of ruin.
Various parts of the design were lopped off, resulting in large and unusual balconies outside the wards. The hospital management did not see this as an opportunity for improving the patients’ experience of being in hospital and instead saw it only as a suicide risk. Patients and staff were banned from the balconies and the glass doors leading onto them were kept locked. It took me many years of campaigning and large sums of charitable money raised (which then went to the private company who built and own the building) to have a small section of the balconies ‘suicide-proofed’ by raising the glass balustrades. I could then have the enclosed area turned into a roof garden. It has proved hugely popular with both staff and patients and on summer weekends, if the weather is fine, there is the happy sight of the ward beds almost all empty, with the patients and their families out on the balcony, surrounded by green plants and small trees, beneath large umbrellas.
This particular patient was an ophthalmic surgeon in his early forties. A gentle, mild-mannered man – which ophthalmic surgeons tend to be – he looked younger than his years and I knew that he had three young children. He worked in the North but had chosen to be treated away from his own hospital. Five years earlier he had suffered a single epileptic fit and a scan had shown a tumour growing in his brain, at the back, on the right. I had operated and removed most of the tumour but the analysis showed it to be of a type that would eventually grow back in a malignant form. He had made a good recovery but it was some time before he had regained sufficient confidence to get back to work. He had known that the tumour would recur but we had both hoped that it would take more than five years. He had radiotherapy treatment after the first operation and had remained perfectly well, but a routine follow-up scan had now shown the tumour was growing back again, and that it also now looked malignant. Further surgery might buy him a little more time, but it was unlikely to be more than five years.
I sat down beside him. He looked up from his laptop.
‘Here we go again,’ he said with a sad smile.
‘Well, it’s only a small recurrence,’ I said.
‘I know it can’t be cured,’ he said bitterly, ‘but you’ll take out as much as you can, won’t you? This thing,’ and he waved his arm towards his head, ‘that is slowly doing me in.’
‘Yes, of course,’ I replied, handing him the consent form to sign – like all patients he scarcely glanced at it, and with a pen scrawled his name in the place I indicated. He had come to see me in my outpatient clinic some weeks earlier and we had talked over the details of the operation. We both knew what awaited him and there was nothing to say. Doctors treat each other with a certain grim sympathy. The usual rules of professional detachment and superiority have broken down and painful truth cannot be disguised. When doctors become patients they know the colleagues treating them are fallible and they can have no illusions – if the disease is a deadly one – about what awaits them. They know that bad things happen and that miracles never occur.
I cannot even begin to imagine what I would think or feel if I knew that a malignant tumour was starting to destroy my brain.
‘You’re first on the list tomorrow,’ I said, as I pushed my chair away and stood up. ‘Eight-thirty sharp.’
Three days earlier the juniors had admitted an alcoholic man in his forties who had been found collapsed on the floor of his home, with the left side of his body paralysed. We had discussed his case at the morning meeting, in the slightly sardonic terms that surgeons often use when talking about alcoholics and drug addicts. This does not necessarily mean that we do not care for such patients, but because it is so easy to see them as being the agents of their own misfortune, we can escape the burden of feeling sympathy for them.
The brain scan had shown a haemorrhagic glioblastoma.
‘See if he gets better on steroids and we can also wait and see if any family or friends turn up,’ I had declared.
‘His wife kicked him out of the family home some time ago,’ the registrar presenting the case said. ‘Because of the booze.’
‘Wife beater?’ somebody asked.
‘I don’t know.’
I found him lying sprawled on his bed, his paralysis a little better as a result of the steroids. He was a few years younger than me, overweight, with a florid red face and straggly long grey hair. I had to make a conscious decision to sit down on his bed next to him. I did not look forward to the conversation we were going to have. It is always easier to stay standing at the bedside, towering over the patient, and to leave as quickly as possible.
‘Mr Mayhew,’ I said, ‘I’m Henry Marsh, the senior consultant. What have you been told so far about why you are here?’
‘I’ve been told five different things,’ he said desperately. ‘I don’t know . . .’ His voice was slurred by his paralysis and the left side of his face drooped lopsidedly.
‘Well, what did you understand?’
‘There’s a tumour in my head.’
‘Well, I am afraid that’s true.’
‘Is it cancer?’
This is always a critical point of such conversations. I have to decide whether to commit myself to a long and painful exchange, or talk in ambiguities, euphemisms and obscure technical language and leave quickly, untouched and uncontaminated by the patient’s suffering and illness.
‘I am afraid it probably is,’ I replied.
‘Am I going to die?’ he shouted back in mounting panic. ‘How long have I got?’ He started to cry.
‘Maybe you’ve got twelve months . . .’ I blurted out, instantly regretting what I had said, and alarmed at his lack of restraint. I found it very difficult to console this fat, alcoholic and pathetic man suddenly faced by his impending death. I knew that I was both awkward and
inadequate.
‘I’m going to die in twelve months!’
‘Well, I said maybe. There is some hope . . .’
‘But you know what it is, don’t you? You’re the senior doc, aren’t you? I’m going to die!’
‘Well, I’m ninety per cent certain. But we . . .’ I said, lapsing into the plural form so loved by policemen and bureaucrats and doctors which absolves us from personal responsibility and relieves us of the awful burden of the first person singular, ‘we might be able to help with an operation.’
He cried and cried.
‘Have you got any family?’ I asked, although I already knew the answer.
‘I’m all alone,’ he replied, through his tears.
‘Any children?’
‘Yes.’
‘Don’t they want to come and see you – even now when you’re ill?’ I asked and, once again, immediately regretted it.
‘No.’ He burst into floods of tears again. I waited for him to stop and we sat together in silence for a while.
‘So you’re all alone?’ I said.
‘Yes,’ he said. ‘I used to work in a hospital, you know. I’m going to die there aren’t I? All the piss and shit . . . All I want is a cigarette. You’ve just told me I’m going to die. I want a cigarette.’ As he said this he desperately mimed smoking a cigarette with his one good hand, as though his life depended on it.
‘You’ll have to ask the nurses – nobody is supposed to smoke anywhere here at all,’ I replied. I thought of all the No Smoking notices in the hospital and the huge posters that greet one on arrival at the hospital gates saying in brutal black and red, ‘PUT IT OUT!’
‘I’ll go and talk to the nurses,’ I said.