The Human Kind: A Doctor's Stories From The Heart Of Medicine

A NOTE ON THE AUTHOR

Dr Peter Dorward grew up in St Andrews, Scotland. Having worked for a number of years as a doctor in Bolivia, Nicaragua, Belize and London, he is now a GP and medical teacher based in Edinburgh. He is an award-winning author of short stories and screenplays. His novel Nightingale was published in 2007 by Two Ravens Press.

For Morrison Dorward, 1928–2017

CONTENTS

Introduction: A Private Garden

I Just Want to Help you to Die

The Problem of Alicia’s Smile

How to be Good

The Real Karlo Pistazja

The Words to Say It

Shangalang

Three Views of a Mountain

Opiates are the Opiate of the People: Part 1

When Darkness Falls

The Ghost in the Machine

Opiates are the Opiate of the People: Part 2

Notes on sources

Acknowledgements

Moving, compassionate and beautifully written – this book ­illuminates general practice the way Henry Marsh has illuminated neurosurgery. Dorward’s stories from his practice are subtle, eloquent and told with great integrity. He doesn’t shy away from confronting some of the most difficult challenges in medicine: refractory pain, chronic fatigue syndrome, maintaining empathy, complex functional illness. But he carries the reader through with verve, imagination, and great humanity. I loved it.

Gavin Francis, author of the Sunday Times bestseller Adventures in Human Being.

www.gavinfrancis.com

@gavinfranc

Please note that the stories in this book are based on my experience as a doctor. However, many details in the pages that follow have been changed to ensure that the identities of real people are so disguised as to become unrecognisable. In some cases the stories and the people within them come from different experiences and different times. This is to ensure that the confidentiality of any individuals is protected.

Narcotics cannot still the tooth that nibbles at the soul …

Emily Dickinson

Introduction

A Private Garden

To never have to feel as tired as this again…

To never have to feel so wretched…

Oh…

A young doctor sits with his head in his hands at a trestle table in the staff canteen of a district general hospital in Northern England. He wears an old-style white coat: stained and crumpled with use, a stethoscope in one pocket, a book jammed in the other, two bleeps in the breast pocket, one marked with peeling red duct tape. It’s half past seven in the morning and still dark outside. It’s 1989, and it’s been raining for years. He has a mug of tea sitting cupped between his hands, getting cold now. Work started the previous morning at half past eight. He will get home again at eight that evening.

He’s thinking: I never want to have to feel this tired again. I never want to feel this wretched.

‘Bad night?’

Someone sits opposite him.

‘Shelley. Hi.’

He is unenthusiastic to see her. Shelley is a year or two older than he is. She’s from Zim, Rhodesia, as she sometimes says, by mistake. She’s thin, has cropped dark hair, intense blue eyes. She is remarkably impervious to strain. She, too, has been up all night: she, if anything, has had it harder, because it’s Sunday morning, and there is no place harder than the casualty department of that hospital, in that town, on a Saturday night. But Shelley is fresh and manicured: clean white coat, clean blouse. Somewhere, somehow, she has found a place to shower. She doesn’t have that up-all-night-in-casualty smell on her – that special alcohol/sick/blood combo we all so know – and her eye make-up is this morning’s, not last night’s, you can tell. She has brought two cups of tea, one for herself, the other fresh, hot, for him. Tiny acts of kindness go far in this bleak world. He makes an effort to wake.

‘You look terrible.’

‘Thanks!’

‘How did Mr Foster do?’

‘Died.’

‘Bad?’

‘Not great…’

Then, from nowhere, a great surge of emotion, a welling up, intimations of a sob. A bellyful of something hot, rising in his throat, threatens to explode. He swallows hard: Down! Keep these rebel ­feelings DOWN!

Shelley, who was standing, about to leave, sits down again, waits a mo.

‘Actually, really … really crap…’

Sob. Swallow.

12 hours earlier.

Feeling great – Ward under control, set fair for a quiet-ish night, lots of energy still in the tank, might even get some sleep – when his bleep goes off. It’s Shelley calling from casualty:

‘Gerald Foster’s back again. Haematemesis. Vitals are stable but he looks a little grey. Bloods are all gone off and he’s got a unit of O neg up, but he’ll be coming your way.’

Gerald Foster was what might be called a regular. He had been a very serious alcoholic once. Now in his mid-sixties, he has oesophageal varices, a complication of alcoholic liver disease. Blood, unable to make its way through his rock-like liver, backs up in other places: in his case, in the blood vessels around the bottom of his oesophagus. These varices sit around the mouth of the stomach like over-ripe grapes, ready to rupture. When they do, he bleeds, and when he does, he vomits. Haematemesis.

Young Doctor makes his way down to casualty at a brisk walk. The walls are painted pale green. The corridors are cluttered with patient trolleys and old-style metal drip stands. A porter with a spiderweb tattoo on his neck stands by a lift, surreptitiously smoking. Remember: it’s 1989.

‘Ho, Pete!’ says the porter.

‘Spider!’ says Pete, who doesn’t much like to be called Pete, but nonetheless likes the human contact, and wishes he could have a cigarette too.

Mr Foster is sitting up in resus., grey indeed, drinking tea and eating a slice of toast. Emaciated man, stick limbs, big belly, white wispy hair, a touch of jaundice, fresh NHS issue paper gown protecting his modesty, his clothes in plastic bags by the trolley; there is blood caked still on his chin and chest.

‘Good evening, Mr Foster.’

‘Who are you?’

Mr Foster crunches on a slice of toast. Butter runs down his chin.

‘I’m Doctor Dorward. I’m here to check you out…’ He feels the man’s pulse, by way of getting started, although there’s a machine doing all that already. He leans over, then leans back and swallows quickly. Butter, blood, tea, vomit, and Mr Foster is unkempt at the best of times. He leans back in again, checks the man’s eyes.

Mr Foster: ‘Who are you?’

‘Doesn’t matter…’

He suffers from Korsakoff’s Syndrome, a not-so-rare complication of alcoholic brain disease. It’s caused by vitamin deficiency and neglect, easily prevented, impossible to cure. It means that Mr Foster has no short-term memory. He doesn’t remember a thing, from one moment to the next. The doctor listens to his chest, puts a hand on the abdomen, feels for the liver, feels for tenderness.

‘Gerroff! Fuckitt! Who are you? Where am I?’

Mr Foster doesn’t remember, from one moment to the next. In his case that’s probably just as well. Mr Foster used to be a small-town bank manager. He had had a house in a nice area, a car and two teenage daughters who attended private school, but he lost all of that. Mr Foster had served a short prison sentence in the late seventies for sexual offences against a child. Upon his release, everything was lost: the job, the house, the car, the family. He didn’t want them any more in any case. The alcohol was a kind of slow suicide, now half completed.

‘Where am I?’

‘Doesn’t matter…’

A nurse has appeared at the bedside, checking observations, marking them on a chart hanging at the bottom of the trolley.

‘He shouldn’t be eating! He should be nil-by-mouth.’

‘No one told us!’ she says, back now turned, leaving.

This hospital, with its casualty department, is due to close in a year. A few miles down the motorway a new one has been built – half the services have been transferred across already. A new building, all steel and glass. There, the nursing staff are young, confident and enthusiastic. There is a central nursing bay for ease of communication. They have an up-to-date telephone system, innovative new computer terminals and training programmes on how to use them. There, the nursing staff wouldn’t have to be told that tea and toast were wrong for Mr Foster, they would just know. The new hospital has drained the life from this, the old. This hospital is blighted.

‘They’re giving him tea and toast!’ says the young doctor, gearing up for a huge moan about the nursing staff.

‘They’re just being kind,’ says Shelley, signing off on one set of notes, picking up another from the pile.

‘They’re meant to be bloody nurses!’

‘They are nurses. They’re just trying to be kind,’ she says, leaving.

Shelley is not very popular. Sanctimonious. And white Rhode­sians are considered fair game. Although right on the bottom rung of the hierarchy, as a doctor, she is in a different league. She has worked in the townships: she seems to have seen everything. She is unfazed by stabbings. Gunshot wounds are nothing to Shelley. There is something of the missionary about her. She wears a cross on a chain. She is aloof. She never joins in, she never complains, never bitches about the nurses. She’s always talking about her boyfriend, Wilhelm, whom she’s marrying in the summer: a great white wedding in South Africa, if the summer ever comes. She makes people feel judged. At least that’s what people accuse her of, unkindly, as they mimic her accent behind her back.

Mr Foster vomited again almost as soon as he got up to the ward. Usually he just settles down. Usually it’s just a question of replacing blood and fluids, maybe a little morphine for his blood pressure and a sedative for general distress – his, and the ward’s. On the ward, he’ll be shouting out, again and again, all night ‘Where the hell am I?’ while the other patients complain and the nursing staff bite their lips and ignore him. The young doctor cross-matches him for 4 units of blood, puts in a bigger central intravenous line for quick resuscitation, and transfers him to intensive care.

Intensive care is not at all what you might think. It isn’t as if there is a hierarchy of intensivists, anaesthetists, surgeons, pharmacologists, a team of highly trained nurses, skilled and ready to take over. It’s 1989, and the hospital is blighted. Intensive care is a bay, a biggish room, at the end of one of the wards. There is a consultant on duty, but he is covering the other hospital, he’s busy, and there is some political aspect to the consultant rota which the doctor doesn’t fully understand. For whatever reason, when he has called for help before, he has been met with a frosty response and gently chastised by his own boss the following morning.

But Mr Foster vomits more blood: it’s not even clotted now, and his haemoglobin has come back at 5.2. Normal would be 13. He’s lost more than half his blood volume. He calls the duty consultant. The duty consultant asks whether the surgeons have been consulted.

‘Surgeons deal with out-of-hours upper gastrointestinal bleeding. Have you spoken with them?’

‘Where am I?’ wails the grey man from the bed opposite, then vomits some more.

The surgeon points out that there is nothing that they will do: the patient needs adequate fluid resuscitation. ‘Who do you think I am? The Wizard of Oz? Stabilise him. Call us in the morning.’

There’s two units of whole blood available now though, and that goes up, goes through, and Mr Foster’s blood pressure seems to stabilise.

There’s other stuff to be done in the hospital, there always is. A young man is admitted with an acute MI. He’s stable enough, but needs active treatment. Heart attacks have recently been re-branded. The possibility of ‘clot-busting’ drugs has just been developed: it’s no longer a question of giving morphine and putting the patient in a bed by a defibrillator and letting them take their chances. There are doses to be figured out, unfamiliar new drugs to be administered, drop by drop. There is a run of old men with pneumonia, and a teenager with asthma. It’s all routine, it’s not really busy as such, but it’s late by the time the doctor gets back to his patient in intensive care.

The charge nurse in the intensive care unit has years of experience. Stanley is the kind of stable, benign, coping night-time presence that junior doctors yearn for. Last really good nurse left hanging on: the rest have left. The last leaf on the tree. But Stanley looks worried as hell. ‘We’re not really keeping up with Mr Foster. He’s had all four units, but he’s not really settling.’

He seems to be asleep. Still grey-white, blue tinged lips, but sleeping at least.

‘At least he’s stopped vomiting…’

The last of the colour then drains from Mr Foster’s face. ‘Whoops!’ says Stanley. Mr Foster vomits again, fresh unclotted blood, the contents, at least, of those four units just squeezed in. Stanley takes the head end with a sucker: clears the airway, but there’s always more to come. The suction bottle, already half full before this, needs changing.

It’s 5 a.m. It’s the dead time of night. The junior doctor is back on the phone to the duty surgeon.

‘There’s nothing we can do until he’s stable. Have you passed a Sengstaken tube?’

A Sengstaken tube is a kind of inflatable plastic tube thing that you would put down a person’s throat in 1989 if you wanted to stop bleeding from the oesophagus. This hadn’t actually occurred to the junior doctor as an option, although Stanley already has one ready. The junior doctor has as little expertise in their use as you do. Mr Foster is well awake now and is thrashing around like a hooked fish. Stanley suggests some morphine, and some more, and then some Valium, and Mr Foster seems more settled. But his breathing is rasping now, rattling, intermittent. His colour is awful.

‘Have you passed one of these before, Pete?’ asks Stanley, wiping down the Sengstaken tube, but at that moment, Mr Foster stops breathing, and the trace on his ECG goes flat.

The junior doctor immediately starts chest compressions, but Stanley puts a hand on his shoulder and says, ‘Pete!’

‘What?’

‘Mr Foster is at the bottom of a huge slope. If you start his heart again, which you won’t, he will still have no blood. And if you give him 10 units of blood, which we don’t have, he’ll still have a massive bleeding point in his oesophagus. And if we sort that out, he’ll still have no memory, he still won’t know who he is. And if you miraculously fix that, he’ll still want to be dead anyway. Think we should mebbe stop?’

Not really Stanley’s call, and a bit long-winded perhaps, but these were his words: this is the speech that the doctor remembers, even now, 30 years later. He remembers that Stanley was twice his age, had ten times his experience, had a great heart, and knew a broken doctor when he saw one.

The surgeon ambles in at last, laughs like a drain, and says, ‘Left this one a bit late, haven’t you?’

Stanley keeps his hand on the doctor’s shoulder and says, ‘I’ll clear up, Pete. You get yourself a cup of tea.’

To never have to feel as tired as this again…

To never have to feel so wretched…

With enormous effort, the junior doctor pulls himself together. He’s 26. It absolutely doesn’t do to sob and wail and say ‘I just want to go home’, even in front of Shelley – even though she now seems the most compassionate, mature, discreet and ­reliable person in the world, who has just brought him some toast as well, to match the hot tea. That second little act of kindness, at the end of a grim night, it melts the soul.

‘It was … really … crap.’

‘One for the private garden?’

What private garden?

‘We all have one,’ says Shelley, tapping the side of her head. ‘A private place. The garden of remembrance. Where we remember all the things that go wrong. The heartbreaks? We all have them, or at least we should. All those stories that would break us if we thought about them all the time, but can’t let go of all the same? The garden of remembrance. You can go there from time to time.’

She sips her tea. So does he. His bleep goes off. Medical ward.

It can probably wait.

It probably can’t.

‘You can go there from time to time. You clearly need to. Not too often though.’ She looks at her watch, then smiles, winks, leaves.

A private garden.

A place for memories, and the ghosts of memories. Those memories that broke your heart, those that changed you, the ones that made you reconsider everything, again, from the very beginning – the ones that make you start over, the ones that make you who you are.

My garden is now better stocked, more mature, better tended: far more peaceful than it was in 1989. Much visited. A place for memories, half-memories, and ghosts. Was I really quite as alone as I remember those events back then? That wouldn’t happen now, I hope.

But I can remember Mr Foster, and his wispy white hair, and his toast with butter. I remember Shelley, that’s for sure, and her words. I remember feeling so alone, not knowing what I should have done.

When I think about medicine, I think about people. Their voices, the words they used, their bodies and their faces, their relationships, the way they made me feel – when I think or talk about medicine, these flicker through my memory.

The facts of a case: the numbers, the signs, the science, the rarity, the amazing, miraculous cures, the smart diagnoses and the cleverness of the person that spotted them – these things are of great but passing interest. But what changes us – or me, at any rate – are the people attached to those facts. Those whom we accompany, walk with for a while through a part of their lives, sometimes even to the very edges of their lives. Those people whom we influence, and most influence us.

To fix a person who is sick, the facts of their damaged body, the nature and origin of the harm, and the skill to fix it must be clear in front of us. But unless we know the purpose of that body – what it means to itself, how it functions in the world, what about it matters to its owner, or whether it matters at all – there still won’t be any hope for remedy for the person, however we try.

No accumulation of facts about a body will tell us why the person it contains is sometimes kind to it, and sometimes so hateful. No accumulation of fact will tell us when we should try really hard, or sometimes not so hard, or not at all, or whether we should treat every single human body in the world just the same. There’s no clear rule or test that might safely help us determine that. No accumulation of knowledge or facts about the world will give us answers to questions about how we should behave in it.

I think that our culture is, by and large, expert in the facts, the science of how the world works: so expert, in fact, that our knowledge and skill blinds us to other things. We use the tools of science to try to solve problems intractable to them, and we do this in the world of medicine more than in most others. I think that we need to think more clearly about what sorts of problems are solvable by facts and science, and what aren’t. I think we need to think more clearly about what tools we might better use instead.

I don’t know the answers to these questions. Nonetheless, I would like to make the most modest possible claim: we don’t think enough about these things. We’ll all get to be patients in the end (some quite soon), so it’s urgent. Even though these problems have existed since there have been people to think about them, we still need to think about them more.

This is a walk through my garden. It is populated by memories and the ghosts of memories. I have tried to follow the thread of my argument through the voices and stories of people. But these are stories: the memories behind them, their first stimulus, has been altered, adapted, re-attributed, shuffled, mixed, changed, until their origins are lost in the mosaic. In those cases where I have used words or a story given to me by a person I can identify, I have asked that person, and I am grateful for their willing consent.

On the other hand, I hope that everyone reading this will recognise in it at least something of their own story. Nothing that I have written about here is very rare, and most of the problems I and my patients struggle with, are common problems: those broken threads of paradox, confusion, suffering, joy, dissonance and incoherence that are woven through the fabric of our experience.

Zennor, August 2017

I Just Want to Help you to Die

I met this man – he was a lovely man – but I wanted nothing more than to help him to die.

The first time I see him, he is accompanied by his daughter. He is a man in his mid-sixties. A short, thin, blocky man in a cigar­ette-singed Hibs football strip. He jumps to his feet when I call his name and surges ahead of his daughter, a smile on his face, as if he is eager to see me. I know his daughter a bit already. She is the carer for another patient of mine – a young man with very severe multiple sclerosis, who depends on her to an extraor­dinary degree, not just for his mechanical, physical care, but for the kind of emotional sustenance, the kind of intimacy, a kind of love, which everyone needs but can hardly ever be offered by paid, social services carers. So I already know his daughter to be an extraordinary woman, a devoted, kind person whom I admire, and when I see that it is she who is bringing her father, to see me, I am flattered. She wears a worried, slightly apologetic expression on her face, common to the children of ageing parents when those parents start to fail. He looks fearful too, that is obvious enough already, when he follows me into my surgery and sits down.

He has a Starbucks styrene cup in his hand. He flips the cap off and presents me with a puddle of blood streaked with pus and says to me ‘Doctor, does that mean what I think it means?’ and his daughter, embarrassed, says ‘Dad!’ but he cuts her off, says ‘No, I want tae ken! Does it mean what I think it means?’ He smells of smoke. He has nicotine yellowing his right forefinger, and his fingers are clubbed, the tips swollen like drumsticks. His specimen reeks of tar. Blood and tar – it’s a smell you come to dread.

‘Have you been coughing that up?’

He nods. I nod, holding his gaze. He looks frightened, but he’s defiant too. He tells me that he has been coughing this up for months. His daughter says ‘Dad…’ again, but not admonishing him this time. He tells me that he has lost weight, isn’t eating, can’t really get his breath, all the time holding my gaze with these frightened, pale blue eyes of his.

‘So it’s lung cancer, isn’t it, Doc?’

I say I don’t know, but knowing really, and examine him. There is the smell of smoke, and Brut, which is an aftershave popular among Scottish men during the seventies which has been, I had thought, unavailable for decades. A hint of half metabolised alcohol. Bony ribs, and without the Hibs strip he is emaciated indeed. When I tap his lungs the right base is dull as stone – stony dull, which means that there is fluid in the chest cavity on the right, which might explain in part why he is so breathless. I ask him to take a deep breath and he raises his ribs and his shoulders in a big bold display of sucking in air, which I think is something that men of his generation learned in the army – a kind of gesture of enthusiastic health – but I don’t hear much air moving.

I sit again, facing him, take his hands in mine to inspect again these clubbed fingers. That’s another bad sign, at least in men his age, with a body as worn as his, with his gurgling cough and his coughing up of blood.

‘So?’

I slide off his question. ‘I need to do a chest x-ray. There’s definitely something not right in your chest, and I’m worried about it. But I need to do a chest x-ray first.’

He looks a little disappointed.

‘But you think it’s lung cancer?’

Actually I think I know it’s lung cancer.

‘Dad – the doctor needs to do an x-ray first…’

‘I want to know!’

‘Well…’

‘The thing is, Doctor, I want it to be…’

‘Dad…!’

‘… lung cancer…’

Jim Stuart’s wife, Margaret Stuart, died about 18 months ago from breast cancer. I knew her only slightly. She was a frail, anxious woman, biologically much older than her 65 years, driven to old age I suspect by her rumbustious, devoted, demanding husband. When, later, I spend time with Jim in his front room, next to the telly I notice a montage of photographs of them together. Taken somewhere abroad (you can tell by the burned red faces of the company), Jim in his Hibs strip surging forward with a grin and a pint of beer and a cig between his fingers, toasting the lens, and behind him, smiling tolerantly with a wee glass of white wine in her hand, Margaret. Since Margaret died, the daughter, Adie, tells me he hasn’t really done anything. Never gets out now, never goes to the little patch of green behind his ground floor flat, with its bed of hard pruned roses and the pair of deck chairs, one blown over by the wind, where he and Margaret had once sat out during summer days. He sits on the couch now, drinking beer, watching the football, smoking his Players No6, telling anyone that asks that he’s fine, aye, just fine, doing okay, wishing away his days.

I order a chest x-ray. Jim is a little annoyed that I have evaded his question. Adie thanks me, as if what I have done already is the most wonderful thing in the world.

Charged encounters like the one with Jim, although they don’t happen every day, happen most weeks. I’m busy, and by late afternoon I have almost forgotten him. But at 5 p.m. I see that I have a note to phone the x-ray technician at the local hospital, and I know, of course, what it is that she has to tell me. She just wants to give me a heads-up. She’s sent through the report, but she just wants to let me know. Jim’s x-ray, as I knew it would be, is really bad. One lung is almost obscured by fluid, but where you can see behind the whiteout, there is a large, tentacled mass where the lung joins its bronchial tubes, and there are signs of swollen glands around the heart. I call Adie on her mobile.

‘Can you bring him back up?’

‘Is it what we think it is?’

‘Probably.’

I worry about patient confidentiality. Medical confidentiality is not absolute – it’s violable in certain dire situations, such as threats of suicide or murder, or in the cases of the mad or wholly incapable, but ordinarily, what a patient tells you, or what you know about your patient, you keep to yourself. Everybody who knows anything at all about the ethics of medicine would agree with this. If you have news for a patient, like the news I have for Jim, you don’t break it to his daughter first. On the other hand, something about Jim strikes me as profoundly vulnerable. I need to have this conversation with Jim, urgently, but I need it to be mediated by the presence of his daughter – this warm, big-hearted woman, who I know cares for him, who I know had his interests at heart, who I know would understand the implications of what I was going to say. From everything that I know, I know that it is for the best that I speak with her first. So I make that judgement.

I’m running very late indeed by the time I call them through again. Jim is a little staggery when he stands, and he calls out to me as he crosses the waiting room, in a voice too loud: ‘Doctor, a hope you dinnae mind and it’s no disrespect, ken, but ah’ve had a wee drink.’ I smile, to say no, of course I don’t mind, and Jim says, ‘Because I know what you’re going to say, I know I’ve got lung cancer,’ and a mother who’s waiting in the waiting room with her kids looks up sharply and reaches an arm out for the