Medical school helped me to diagnose and treat illnesses I would never get to see outside a textbook but failed to prepare me to deal with death. I was told, not even asked, to inform a family of the death of their husband and father following a heart attack, a man that only a moment earlier had been well, just because I was the most junior doctor in the department. I walked the small corridor and broke the news, unprepared, clumsily, badly, not helping those that cared to be cared for. This was my first death as a doctor.
The consultant
In the third year of medical school, you are taken to one side and taught how to break bad news. This teaching involves important suggestions, such as:
Ensure there is a box of tissues handy
and
Make sure you give the patient an opportunity to speak.
There’s even a useful mnemonic, just in case you temporarily forget how to be a human being, because there is a mnemonic for everything in medicine, even death.
SPIKES – the handy six-stage protocol for delivering bad news. Set-up, perception, invitation, knowledge, empathy, summary. Six boxes to tick, and we practise our conversations around these boxes, again and again, until we are able to fit everything neatly inside. We have workshops too, where we role-play and feel self-conscious, and try out our mnemonics on each other. Eventually, experienced actors are brought in to test out our ability to remember the protocols, but they do not, unfortunately, test out our ability to look death in the eye. The actors leave spaces in the conversation where we can carefully place our mnemonics, because the actors know all about them. The patients we will meet beyond the shelter of a medical school, however, do not.
Towards the end of your medical training, you are expected to start ‘working’ shifts; that is, to follow a department, not only during medical school hours, but to witness how it operates around the clock. And so, just before finals, I found myself loitering around A&E at a time when I would normally be at home and tucked up in bed.
On this particular night, it was absolutely pouring with rain. It was the kind of weather where people bluster in heroically, stamping their feet and letting out lots of loud gasps. Other than a man vomiting theatrically in one of the cubicles, the department was fairly peaceful, so I helped myself to a few chocolate Hobnobs and sat down with my workbook.
I’d only been sitting there a few minutes when the telephone rang. Obviously, this isn’t unusual in an emergency department, but this was no ordinary telephone. This was the special telephone. The one that rings with an old-fashioned bell. And when that telephone rings, it means that something really bad has happened. In this case, the something-really-bad was an eighty-three-year-old lady called Jessie who was having a heart attack.
When the special telephone rang, magical things started to happen. People appeared from nowhere and put on plastic aprons. They brought out lots of mysterious equipment and started writing everything down. If you ever want an example of good teamwork, the resuscitation room is an excellent place to start. Everything is done with breathtaking efficiency. After a few minutes, everyone had been given a role to play and the performance was ready to begin. They just had to wait for Jessie.
When she arrived, it wasn’t with the crash and drama of an episode of Casualty. It was quietly and almost apologetically through the ambulance bay at the back of the hospital. One of the nurses was doing chest compressions, but she wasn’t riding side-saddle like in the movies, and there was no sign of George Clooney anywhere. They flew past me in one giant chain of human beings and vanished through the swinging doors of the resuscitation room. Then I noticed that behind the paramedics and the bags of saline and the red blankets and the chaos was Jessie’s husband. He was old and bewildered and wet from the rain. They asked him if he’d like to sit in the relatives’ room, but he was too upset. The kind of upset where you want to pace up and down. Half an hour ago, he’d probably been sitting with Jessie in their sitting room, watching the television and thinking about calling it a night. Now he was in a bright noisy hospital and his wife was lying on a trolley, covered in leads and blankets and surrounded by strangers. I’ve been that kind of upset before and the last thing you want to do is sit down with a nice cup of tea.
They tried very hard with Jessie, but her eighty-three-year-old body had had enough and wanted to leave. I watched them work on her. I watched the drugs going in and the blood being taken out and I watched as they called time of death. I wondered if I would ever get used to seeing people die. Although it’s not the dying part that really upsets me; it’s the part afterwards that got to me every time.
I knew that, very soon, they would be taking Jessie’s husband into one of the quiet rooms, where they would turn his life upside down with one sentence. He had stopped pacing and, when I left the Resus room, he was in the middle of the corridor, staring at the floor and looking for somewhere to be. As I watched him standing there, the rest of the world walking around him, I noticed something for the first time. Hung over his arm, slightly crumpled and with its belt trailing on the floor, lay Jessie’s navy blue raincoat.
As a medical student, I had sat and listened many times as patients were told that their cancer was going to kill them. I have heard many consultants fire a warning shot (I’m sorry, Mrs Jones, but I have some bad news) and I have witnessed the breathtaking silence that follows these words, as we all wait for the patient to respond.
There is no silence quite like it.
When the patient finally speaks, it’s often to offer up a reason to be positive. They quote their friends and the internet and things they’ve seen in the newspapers. They tell you stories of people they’ve read about, or people who are related to people they know, or people someone once told them about. People who have defied the laws of medicine. Lastly, when all of these attempts at cheerfulness have floundered, they will give you their final fragment of optimism. The only one left.
‘They’re always making amazing new discoveries now though, aren’t they?’
And then they will leave a pause. A gap in the conversation. A space between all the words where you are expected to place an offering of hope. Sometimes, though, there is no hope to be offered. Sometimes, there is nothing else to be said. The space remains empty and you listen to the sound it makes, as it swallows up everything else.
Medicine is filled with spaces.
Wards and clinics are built on spaces. Spaces in which to put expectation and possibility, optimism and anticipation. We wait in those spaces for test results, X-ray films, scan reports. We prescribe drugs and, as they swim around within a patient’s bloodstream, we hold our breath in the space between administration and response. Waiting rooms are crowded with spaces. In a consultation, a patient’s anxiety rests in a space the width of a table, as they search for an answer in a doctor’s eyes. On the wards, relatives crowd into a side room, looking for a whisper of something they can hold on to, and, in the space between them, in curtained light, hope waits alongside.
As medical students on the wards, in many of our placements we were encouraged to follow a patient from admission to discharge, to take their history and to get to know them, to follow their diagnosis and treatment, and to write up and present our thoughts and learning when the patient is discharged. There is heavy competition to find a patient and many of the ‘best’ ones are snapped up early. The ideal candidate is interesting enough to fill a presentation, but not so interesting that the workload is increased by having to read up on rare and unusual conditions in case you are asked rare and unusual questions by the consultant in charge.
In one of my rotations, I trawled the wards, looking for a patient to follow. I read through trolleys full of patient notes and scrolled through referral letters on computer screens. I scoured patient bays. I interrogated nurses. On hospital wards, there is a very high proportion of older people. Some 80 per cent of the patient list consisted of people over the age of seventy: those who had been admitted many weeks ago after a fall or with a chest infection – problems long since resolved – but who could no longer return to the life they had once led. They had turned a page. They couldn’t manage stairs or their garden path or their lives any more, and so they waited, in wards and bays all around the hospital, for a different beginning. I loved talking to them because their stories were ones that would eventually become silent and disappear forever, but they weren’t suitable for a case presentation. I began to wonder if I would ever stumble upon anyone, and I almost gave up, but on yet another circuit of A&E I finally found my patient, lying on a trolley in Majors. His name was Paul. He was thirty-eight.
Paul had been sent there by his GP after presenting with a short history of weight loss and lack of appetite. Vague abdominal pain that reached into his back. A vague feeling of nausea. Doctors’ waiting rooms are often filled with the vague and the indefinite, the out of sorts and the ambiguous. Symptoms that can be the result of many different illnesses, some sinister and some untroubling, some that will disappear all by themselves and some that need urgent attention, and it’s the GP who has the unenviable task of sorting out the tigers from the pussycats. It wasn’t the vague abdominal pain and the vague nausea that made the GP suspect that this might be a tiger – it wasn’t even the weight loss or the tiredness, or the feeling that something ‘just wasn’t quite right’. It was the jaundice.
Every medical student has a list of things to find on the wards. Checkboxes to tick. Clubbing and cyanosis, atrial fibrillation and ascites. Jaundice is also high on this list, and we stalk the hospital looking for examples, our pens poised over our workbooks, like medical birdwatchers.
Do you think the patient in bed four has jaundice? we whisper to each other.
We all walk past several times in covert manoeuvres before we dare mark a tick, not wanting to be fraudulent. We are unsure. Undecided.
Until we see jaundice for real, for the first time, as I did that day in A&E, and we realise there is no mistaking it. No need to walk past a bed several times. No need for hesitancy or self-doubt. When you see jaundice like that, you know you can’t possibly be looking at anything else.
I walked over. I loitered at the foot of the bed. Paul looked up and smiled, and his wife looked up and smiled. I introduced myself. I very quickly explained that I wasn’t a doctor, because I had learned early on that if you wear a stethoscope and you aren’t twenty-one, it pays to make it clear. People always look at your face, not your name badge, which is why Kate Granger’s #hellomynameis campaign, which reminds NHS staff of the importance of introducing yourself to a patient, is so vital. I told them I was desperately searching for a patient to present at the end of my rotation, and would they mind if I talked to them?
They didn’t. Although, they said, they probably wouldn’t be in hospital for very long.
I pulled up a chair. ‘It’ll only take ten minutes,’ I said.
I was there all afternoon.
We went through the presenting complaint, the signs and the symptoms, relieving factors and aggravating factors, and medications and family health, and all the other side roads you wander along when taking a patient history. As you become more experienced, there will be some roads that you may only need to glance down, knowing exactly the route you need to take, but as a student, you very carefully walk the length of each one, worried about missing something important, determined to ask all the questions until you find the answer you’re searching for. I wrote everything down. I made a note of the tests that had been ordered and all the observations that bleeped away at the side of the bed. Two little girls played at my feet.
‘I couldn’t get a sitter at such short notice,’ said Paul’s wife.
She told me their names and their ages. They were becoming bored, fractious. I went to one of the children’s examination rooms to get them a fresh supply of toys. When I returned, they told me about a holiday they had planned for the following week. They owned a caravan in Cromer. Paul was a taxi driver, so he could take time off when it suited them. My dad used to drive taxis. We talked and talked. I think it was a distraction for them, and creating a source of distraction meant that it was one of those very rare times I felt useful as a medical student. But it meant that I didn’t spot it. I didn’t see what I had done.
There is another space in medicine.
A space that exists between a patient and a medic, and I had walked straight across it without realising.
It’s a space that exists for a reason.
Paul was admitted for more tests, and so he and his wife, and their two little children and the toys and coats and carrier bags were all taken from A&E and wheeled through the hospital to one of the wards. I followed them down the long corridors. I saw the surprise on their faces. I witnessed, on the first of many, many occasions, how the very worst day of your life often starts out very cleverly disguised to appear just like any other.
I thought about them on the drive home. I thought about them while I was eating my supper, walking my dog. I lay in bed in the darkness, staring at the ceiling and thinking about them. As a medical student, I possessed very little medical knowledge, but I switched the light on, pulled one of my textbooks from the shelf, and looked at causes of jaundice, and I picked out the ones that suited best the darkness and the thinking. I had begun to consider them as friends, and, as I swam around in the space that lies between the doctor and the patient, I tried to find something I could hold on to.
Every day, I visited them. After the lectures and the ward rounds, after I’d filled in my workbook for the morning and ticked all the boxes I needed to tick, I’d head to the far side of the hospital and check what was happening. I was supposed to, of course, because this was my case study and I needed to keep up to speed, but I knew it was more than that. Even as I walked the long corridors towards the ward and swiped myself through the door with my student pass. Even as I took my workbook out and pulled a pen from my pocket. I knew I was no longer there because I needed a case to present at the end of my rotation. I was there because I cared.
I had heard the conversations at the nurses’ station. I had sat in a medical student silence through the ward rounds. I had seen the scans. They had found a mass. There are many small, significant words in medicine, but mass has to be one of the more sinister. A gathering of cells. Interlopers, serving no purpose, tunnelling their way through the body in secret, as we eat and sleep and enjoy our lives, strangely unaware of their existence, until one day, they wrap or cloak or fold themselves around a part of us that we need, and finally we become conscious of their presence.
Usually, on a scan or an X-ray, these abnormalities have to be pointed out to students, because we are as yet unable to differentiate between what should and shouldn’t be present. All the organs look vague and puzzling, and we struggle to relate the images we see on a screen to the textbook life we have been used to. But this scan was obvious. This scan was barn door, as the radiologists are fond of saying. The mass had buried itself deep within the pancreas, squeezing and pressing, determined to flourish, and elbowing into anything that might lie in its path, including the bile duct, which had, in turn, led to the jaundice. More tests were required to determine the nature of this mass and what its intentions might be, but everyone seemed pretty sure, even without them.
This was pancreatic cancer.
‘But he’s thirty-eight,’ I said to the consultant.
‘This is life,’ he said. ‘This is medicine.’
‘It could be something else though?’
‘Painless jaundice is cancer of the pancreas until proven otherwise.’
It was in medical textbooks. I had written it down myself in lectures and workshops, but this didn’t feel like a medical textbook any more. It felt like a person.
‘But you’re not 100 per cent certain?’ I said.
‘We’re 90 per cent certain.’
I took my 10 per cent from him and held on to it very tightly.
More tests were done. Paul’s wife brought in a paperback she thought I’d like and, to give them both a break, I often looked after the children in the day room. Sometimes, I fetched Paul a newspaper from the hospital shop, sometimes, I chatted to his wife about last night’s television, and, slowly but surely, I inched my way across that space. No one stopped me. No one turned me around and warned me, because no one teaches you about this space in medical school. Perhaps it is assumed that we will recognise it for ourselves, perhaps we are supposed to identify its dangers without any guidance, but while doctors are meant to lean back, far away from the abyss, it is a basic human reflex to reach across – to discover a connection, a common ground, to find something of yourself in other people. I reached across because it felt like the most natural thing to do.
I had no idea it would eventually be my downfall.
There was a multi-disciplinary team meeting. An assembly of specialists. Doctors and nurses, hospital staff and community workers, all gathered in the darkness and staring at the black and white pictures of strangers. Images of livers and bowels, gall bladders and stomachs projected on to a giant screen. No patients were present. Hope and possibility were passed back and forth across the room. Predictions forecasted. Statistics quoted. Risk assessed. Battle lines drawn and defeats accepted.
Paul was on the list that day, and I sat in the corner of the room in a hard-back chair, waiting in the dim light with a cotton-wool throat for our turn. Because it was an our turn now. It felt like it had been all along.
Finally, my consultant spoke. He pointed to the screen and a little red dot travelled around the pictures. He explained the landmarks, for my benefit, and – like many names in human anatomy – they sounded like far-flung destinations on a magical journey. The superior vena cava, the common bile duct, the triangle of Calot. The tumour’s position had made surgery an impossibility, and, as if that weren’t enough, the cancer appeared to have spread – there was a scattering of spots on the liver, shadows on the lungs: an army of cancer cells, silently marching their way through Paul’s body. They talked about stents and the possibility of chemotherapy, they said the word palliative. They talked about weeks not months.
I gripped the sides of the chair. There must be something they could do, all of these experts – all of this intelligence, all of this resourcefulness crowded into a curtained room – and yet no one could suggest anything more. The image on the screen changed to someone else and they moved to the next person on the list.
My consultant sat down and Paul’s moment was over. He was thirty-eight. He’d never smoked, he hardly drank. He ran the London Marathon four years ago. He had two little girls and a caravan in Cromer. He liked Monty Python and he played football every Saturday morning with his friends. His wife was called Julie and they met on a dance floor in Birmingham quite by accident, in the summer of 1996, when beer was one pound and seventy pence a pint.
I held all these thoughts in my head because I knew these were the things patients say when they’re told a diagnosis: offering them piece by piece to the teller, as if evidence of the unfairness and the unlikeliness of it all will make the diagnosis realise its mistake, change its mind and walk away. These were not my words to speak, this was not my battle to fight, and so I left. I couldn’t go back to the ward because of a strange sense of fraudulence, and so I wandered the hospital for the rest of the day. I sat in corridors and coffee shops. I listened to fragments of conversation, walked past the splinters of other people’s lives.
A hospital is like a small town. It has shops and a bank, restaurants and a florist. It has a resident community and a wandering population of those who just journey through, and, right at that moment, I couldn’t decide which one I wanted to be. I just knew I had to keep walking, trying to find my way across that great abyss, back to being a doctor. It was only when I’d finished walking, along corridors I had never walked before, past doors and departments I had never seen, that I finally arrived at the truth. Once you have crossed that space between doctor and patient, no matter how hard you might try, you will never be able to navigate your way back home again.
My consultant asked if I wanted to be there when he told them. I said no. There is nothing more distasteful, nothing more selfish, than the appropriation of someone else’s grief, and I was worried that once I was in the room, I wouldn’t be able to hide my own selfishness.
I watched from the nurses’ station as Paul and Julie were shown into a side room, a tiny space off the main corridor to the ward. I had been into that room before. It contained four easy chairs and a coffee table, and it was so small it took a huge amount of concentration just to avoid brushing your knees with your neighbour’s or accidentally digging into someone else’s ribs with your elbows. I wondered how a room that size was going to be able to hold the huge amount of agony it was about to receive. A Macmillan nurse was the last to go in and my consultant looked straight into my eyes as he closed the door behind them all.
They seemed to be in there forever. I wandered around the ward. I talked to other patients I’d got to know. I ticked a few boxes in my workbook. I decided it was better to disappear into another part of the building and stay completely out of the way, and as I walked back down the corridor towards the main entrance, I glanced at the closed door of the side room.
There are some rooms in a hospital that are designed for delivering bad news or made especially for people to sit in while they wait to receive it. The rooms near Resus in A&E. A corridor of small rooms in ITU. A soft, quiet room on the maternity ward, away from the balloons and the cribs and the congratulations banners. These rooms are used for other things as well, of course. They can be used for explaining and planning. Occasionally, you will catch a junior doctor in one of these rooms, eating their lunch and practising a presentation. Sometimes, they are used for giving good news to a patient, but good news is usually delivered at the bedside. Good news is allowed to wander around freely and stretch its legs. It’s allowed to travel through cubicle curtains and make its way around the ward and be heard by anyone who might happen to walk by. It’s bad news that needs to be contained. Trapped. Kept tightly enclosed in a small room with four easy chairs and a coffee table, just in case it should manage to escape and be heard forever.
I returned to the ward half an hour later. The door to the side room was still tightly closed.
‘They haven’t come out yet,’ said a passing nurse, because she knew me well.
Half an hour later, Paul and Julie emerged from the room. They were different people, because misery always breaks you, and even though you will eventually manage to fit the pieces back together, you will never look quite the same again. They moved slowly back across the ward, Paul and Julie, the Macmillan nurse and the ward sister, and the curtains were drawn around the bed. My consultant sat at the computer next to me and typed something into the keyboard. He didn’t make eye contact. When he’d finished, he stood up and said ‘what a lovely family’ and he left. I wondered, even with wisdom and experience, even with the many miles of hospital corridors he must have walked, if he sometimes couldn’t help but take a few steps across that space himself from time to time.
I didn’t speak to Paul or Julie until the next day.
‘Did you know?’ Julie said.
I shook my head. ‘Not the last time I saw you. Not until just before you were told.’
‘It doesn’t make any sense.’
She spoke the words as a question and searched for an answer in my face. I would see that search many times when I became a doctor, the natural assumption that someone with knowledge must also possess a solution, an explanation. The forgivable belief that, as well as understanding the anatomy and the physiology, we are also given the key with which to unwind something and make a life turn back into what it used to be.
‘He was as fit as a fiddle,’ she said. ‘He ran the marathon. He played football.’
‘I know,’ I said. ‘I know, I know.’
We looked at each other in a shared disbelief and I felt this huge need to apologise. For myself and for my ignorance. For medicine’s inability to save her husband. For my own selfish misery, which I am certain spilled into my eyes.
Paul watched us from the bed. He looked more jaundiced, thinner. Less likely to survive, although perhaps it was the absence of hope that I was seeing for the first time.
‘We’ll have no long faces here,’ he said, and I watched him put all his effort into making us both feel better, smoothing down an easy road to walk along, taking each obstacle and carefully placing it to one side.
Terminally ill patients do this frequently. I sometimes think they use more energy helping everyone else to deal with the situation than they do in coming to terms with it themselves.
They tried stenting, to find a way around the blockage, but it failed. They tried chemotherapy, but he couldn’t tolerate it, and I was just finishing my placement when the palliative care team organised a bed at the hospice.
I had already met patients who had stayed with me, people who remained in my thoughts long after they had left, but until that moment I had managed to continue walking forwards. I somehow always pulled myself away from a dark corner of thinking and directed my energy into the next patient, the next cubicle. This time, though, the stent failed. I couldn’t find a way around it. This time, I couldn’t move on. I knew where I’d gone wrong, I knew I’d walked a path I shouldn’t have walked, but equally, I knew I would walk it again. Again and again. When I wrote a card for what would be an elderly couple’s last anniversary. When I ran around the hospital hunting down ice, for a dying woman in A&E who craved cold water. When I smuggled fish and chips on to the ward, for an old man who had lost his wife and couldn’t face eating. None of these make me special or unusual, thousands of medics and nurses do things like this every day. It’s what makes us human and, sometimes, walking across that space towards a patient is the only thing we are able to do for them.
I watched them leave the ward, Paul and Julie, and their two little children and the toys and the coats and the carrier bags. An ordinary life suddenly made unordinary by a cruel disease so quiet and so devious we are often unaware of its existence until it’s too late. I knew that all the words you normally attach to a goodbye were worthless, and anything else I said would be for my own comfort and not for theirs, and so we just smiled at each other.
I was planning on telephoning the hospice a couple of weeks later. I even got as far as writing down the number and keeping it in my pocket, but I didn’t ever get around to calling. On my next placement, I was walking in a different part of the hospital, towards a different ward, when I spotted their Macmillan nurse, on the opposite side of the corridor. I thought of asking her how it went, I thought of finding out the end of the story, even though I knew what the end of the story would be. She recognised me and she smiled. I didn’t ask.
I didn’t ask her because sometimes we need to leave a space. A space between a doctor and a patient. Between one person’s story and our own.
A space where we can put all the hope.