Do No Harm: Stories of Life, Death and Brain Surgery (13 page)

David, normally full of confidence and enthusiasm, was silent.

‘Come on,’ I said ‘You’ve got to say something to her. You must have had to do this before.’

‘Er, well . . .’ he fumbled for the words, ‘I’d tell her that there was an abnormality of the scan with, er, mass effect . . .’

‘What the fuck will that mean to her?’ I said.

‘I’d tell her she needed to have an operation so that we could find out what it is . . .’

‘But you’re lying. We know what it is, don’t we? It’s a highly malignant tumour with an awful prognosis! You’re scared of telling her! But she’ll know it’s bad just from the way you look at her. If it was a benign tumour you’d be all smiles, wouldn’t you. So what are you going to tell her?’

David said nothing and there was an awkward silence in the darkness of the X-ray viewing room.

‘Well, it’s very difficult,’ I said in a gentler tone. ‘That’s why I was asking you.’ When I have had to break bad news I never know whether I have done it well or not. The patients aren’t going to ring me up afterwards and say ‘Mr Marsh, I really liked the way you told me that I was going to die,’ or ‘Mr Marsh, you were crap’. You can only hope that you haven’t made too much of a mess of it.

Surgeons must always tell the truth but rarely, if ever, deprive patients of all hope. It can be very difficult to find the balance between optimism and realism. There are degrees of malignancy with tumours and you never know what will happen to the individual patient in front of you – there are always a few long-term survivors – not miracles but statistical outliers. So I tell my patients that if they are lucky they might live for many years, and if unlucky it might be much less. I tell them that when the tumour recurs it might be possible to treat them again and, although to some extent it is clutching at straws, you can always hope that some new treatment will be found. Besides, most patients and their families will research their disease online and the paternalistic white lies of the past will no longer be believed. Nevertheless, sooner or later, most of the patients, like Helen, will reach the point of no return. It is often very difficult for both doctor and patient to admit that it has been reached. The juniors in the morning meeting listened in the dark in respectful silence as I tried to explain all this, but I do not know if they really understood.

After the meeting I went back onto the ward to see Helen.

Mary, the ward sister came up to me.

‘The family are completely unrealistic,’ she pointed to the door of the side-room where Helen was lying. ‘She’s obviously dying but they just won’t accept it.’

‘What’s the plan?’ I asked.

‘The family won’t let us treat her as a terminal case with decent painkillers so we’re trying to get community services and the
GP
organized and get her home.’

‘And the wound?’ I dreaded the answer.

‘It looks like it’s going to break down any moment.’

I took a deep breath and went in to the side-room. To my relief the family were not present. Helen was lying on her side facing the window so I walked round the bed and squatted down beside her. She looked at me, her eyes large and dark, and slowly smiled. The right side of her head was swollen but covered by a wound dressing. I saw little point in uncovering it so I left it undisturbed, and spared myself a sight any surgeon hates – a once-neat incision for which he has been responsible breaking down and becoming an ugly, gaping wound.

‘Hello Mr Marsh,’ she said.

It was difficult to know what to say.

‘How are you?’ I offered.

‘Getting better. Head hurts a bit.’ She spoke slowly, her speech a little slurred by her left-sided paralysis. ‘Thank you for operating again.’

‘We’ll get you home as soon as we can,’ I said. ‘Any questions?’ I resisted the temptation to get up and walk to the door as I asked the question – an unconscious trick all doctors have to fight against when faced by a painful conversation. Helen said nothing so I left and went to the operating theatres.

12

GLIOBLASTOMA

n.
the most aggressive type of brain tumour derived from non-nervous tissue.

I have little direct contact with death in my work despite its constant presence. Death has become sanitized and remote. Most of the patients who die under my care in the hospital have hopeless head injuries or cerebral haemorrhages. They are admitted in coma and die in coma in the warehouse space of the Intensive Care Unit after being kept alive for a while by ventilators. Death comes simply and quietly when they are diagnosed to be brain dead and the ventilator is switched off. There are no dying words or last breaths – a few switches are turned and the ventilator then stops its rhythmic sighing. If the cardiac monitor leads have been left attached – usually they are not – you can watch the heart on the
ECG
monitor – a graphic line in
LED
red that rises and falls with each heart beat – become increasingly irregular as the dying heart, starved of oxygen, struggles to survive. After a few minutes, in complete silence, it comes to a stop and the trace becomes a flat line. The nurses then remove the many tubes and wires connected to the now lifeless body and after a while two porters bring a trolley with a shallow box beneath it camouflaged by a blanket and wheel the body away to the mortuary. If the patient’s organs are to be used for donation the ventilator will be kept running after the brain’s death has been certified and the body will be taken to the operating theatres – usually at night. The organs are removed and only then is the ventilator switched off and the camouflaged trolley will come to take the corpse away.

The patients I treat with fatal brain tumours will die at home or in hospices or in their local hospital. Very occasionally one of these patients of mine with a brain tumour will die under my care while still in the hospital but they will be in coma, since they are dying because their brain is dying. If there are any discussions about death or dying it is with the family and not with the patient. I rarely have to confront death face to face, but occasionally I am caught out.

When I was a junior doctor it was very different. I was closely involved with death and with dying patients on a daily basis. In my first year as a doctor, working as a houseman at the bottom of the medical hierarchy, I would often be summoned, usually out of bed in the early hours, to certify the death of a patient. I would walk along the empty, anonymous corridors of the hospital, young and healthy and wearing a doctor’s white coat, to enter a dark ward and be directed by the nurses to a bed around which the curtains had been drawn. I would be aware of the other patients, usually old and frail, lying in the neighbouring beds, probably awake and terrified in the dark, probably thinking of their own fate, desperate to recover and escape the hospital.

The dead patient behind the curtain, faintly lit by a dim bedside light, would look like all dead hospital patients. They would usually be elderly, in a hospital gown, as anonymous as Everyman with a pinched, wax-yellow face and sunken cheeks, purple blotches on the limbs and utterly still. I would open the gown and place my stethoscope over the heart to confirm that there was no heartbeat and then open the eyelids and shine a small pen torch into the dead eyes to check that the pupils were ‘fixed and dilated’ – that they were dull and black, as large as saucers, and did not constrict in reaction to the torch’s light. I would then go to the nurses’ station and write in the notes ‘Certified dead’, or words to that effect, and sometimes I would add
RIP
. I would sign this and then go back to bed in the little on-call room. Most of the patients I certified in this way were not known to me – at night I would be covering wards with patients who belonged to different firms from the one for which I worked during the day. This was many years ago, when post-mortems were still common practice. It was traditional to attend the post-mortems of the patients who had died on the wards for which you were responsible in the daytime, whom you had cared for in their final illness and whom you had got to know. But I hated post-mortems and usually tried to avoid them. My detachment had its limits.

As a casualty officer – the next job I had after my year as a houseman and then as a trainee in general surgery – I saw death in more dramatic and violent forms. I remember patients dying from heart attacks – or ‘arresting’ – in front of me. I remember working all night trying, and failing, to save one man, fully awake and suffering horribly, who looked into my eyes as he bled to death from oesophageal varices. I have seen people die from gunshot wounds, or crushed and broken in car crashes, or from electrocution, heart attacks, asthma, and all manner of cancers, some of them quite repulsive.

And then there were the ‘
BIDs
’ – people brought in dead by the ambulance men. As the casualty officer I would have to certify death in some poor soul who had collapsed and died in the street. On these occasions I would find the corpse fully dressed on a trolley, and having to undo their clothing to place my stethoscope on their heart was a profoundly different experience from certifying death in the hospital inpatients in their anonymous white gowns. I felt that I was assaulting them, and I wanted to apologize to them as I unbuttoned their clothes, even though they were dead. It is remarkable how much difference clothing makes.

I was driving out of London on a Friday afternoon, about to take a few days’ leave and have a brief holiday with my wife. It had been a cold winter and I was admiring the way in which the branches of the trees beside the motorway were elegantly outlined with snow when my mobile rang. Checking that there were no police cars in sight, I answered it. I could not catch what was said.

‘Who?’ I asked.

I could not make out the name but the voice on the phone said. ‘We’ve just admitted your patient David H— from his home.’

‘Oh,’ I said and pulled onto the hard shoulder.

‘He’s got a progressive hemiparesis and had become increasingly drowsy but he’s better with steroids – quite sharp and witty again.’

I remembered David very well. I had first operated on him twelve years earlier for a particular species of tumour called a low grade astrocytoma of the right temporal lobe. These are tumours within the brain itself that at first grow slowly, initially causing the occasional epileptic fit but which eventually undergo malignant transformation and become ‘high grade’ tumours known as glioblastomas and ultimately prove fatal. This can take many years and it is impossible to predict for any particular patient how long they have to live. A few tumours, if they are small enough, can be cured by surgery. Most of the patients are young adults who must learn to live with a slow death sentence. With these patients it is especially difficult to know how to explain their diagnosis to them. If you get the balance between optimism and realism wrong – as I sometimes do however hard I try – you can either condemn the patient to live in hopeless despair for whatever time they have left or end up being accused of dishonesty or incompetence when the tumour turns malignant and the patient realizes that they are going to die. David, however, had always made it clear to me that he wanted to know the truth, however grim and uncertain.

He was in his early thirties when he had his first fit and the tumour was discovered, a successful management consultant, over six foot tall and a keen cyclist and runner. He was married with young children. He was a person of great charm and determination, who managed to turn everything into a joke, and continued to make jokes even when I had opened his head and was removing his tumour under local anaesthetic while he was wide awake. We had both hoped that he would be one of the fortunate few cured by surgery but after three years the follow-up scans showed that the tumour was back. I remember very clearly telling him this as he sat across from me in the outpatient room, that this meant that eventually the tumour would kill him. I could see the tears forming in his eyes as I talked, but he swallowed hard and looked straight ahead for a few moments and we then discussed what further treatment might buy him some more time. Over the next few years I operated twice again, and, with radiotherapy and chemotherapy, he had managed to go on working and leading a normal life until only recently. Compared to many other people with these tumours he had, as doctors put it, ‘done very well’. I had got to know him, and his wife, better than some of my patients over those years and I was humbled by how they bore his illness, and of how they managed to be so practical and determined about it.

‘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.’