With the End in Mind Read online

  Copyright

  Copyright © 2018 by Kathryn Mannix

  Cover design by Lucy Kim. Cover photograph © Science Photo Library/Getty Images

  Cover copyright © 2018 by Hachette Book Group, Inc.

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  Little, Brown and Company

  Hachette Book Group

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  First ebook edition: January 2018

  Simultaneously published in Great Britain by William Collins, January 2018

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  ISBN 978-0-316-50453-9

  E3-20171026-JV-PC

  Contents

  Cover

  Title Page

  Copyright

  Dedication

  Introduction

  Reading the Label

  Patterns Unpromising Beginnings

  French Resistance

  Tiny Dancer

  Wrecking Ball

  Last Waltz

  Pause for Thought: Patterns

  My Way That is the Question

  Never Let Me Go

  Hat

  Take My Breath Away

  Pause for Thought: My Way

  Naming Death Second-Hand News

  Slipping Through My Fingers

  Talking About the Unmentionable

  Something Fishy

  Plaques

  Cat-astrophe

  Arrival at Destination

  The Sound of Silence

  Every Breath You Take (I’ll be Watching You)

  Beauty and the Beast

  Pause for Thought: Naming Death

  Looking Beyond the Now In the Kitchen at Parties

  Please Release Me–A Side

  Please Release Me–B Side

  Travel Plans

  With Love from Me to You

  Pause for Thought: Looking Beyond the Now

  Legacy Something Unpredictable

  The Year of the Cat

  Post-Mortem

  Needles and Pins

  Lullaby

  Pause for Thought: Legacy

  Transcendence Musical Differences

  Deep Dreams

  De Profundis

  Perfect Day

  ‘Only the Good Die Young’

  Pause for Thought: Transcendence

  Last Words

  Glossary

  Resources and Helpful Information

  Letter Template

  Acknowledgements

  About the Author

  Newsletters

  In a life of stories, this book is dedicated with love to the tellers of tales:

  to my parents, who gave me the words;

  to my husband, who distils words into wisdom;

  and to our children, whose stories are still unfolding.

  Introduction

  It may seem odd that, after half a lifetime of keeping company with the dying, anyone should wish to spend even more time immersed in telling their stories. It may even seem presumptuous to offer those stories in the hope that readers will choose to accompany dying strangers across the pages. And yet that is what this book sets out to do.

  Throughout my career in medicine, it has been clear to me that we bring our own ideas and expectations with us in any encounter with the Big Questions. Whether that is birth, death, love, loss or transformation, everyone frames their experience through the lens of what they already know. The trouble is, whereas birth, love and even bereavement are widely discussed, death itself has become increasingly taboo. Not knowing what to expect, people take their cues instead from vicarious experience: television, films, novels, social media and the news. These sensationalised yet simultaneously trivialised versions of dying and death have replaced what was once everyone’s common experience of observing the dying of people around them, of seeing death often enough to recognise its patterns, to become familiar with life lived well within the limits of decreasing vigour, and even to develop a familiarity with the sequences of the deathbed.

  That rich wisdom was lost in the second half of the twentieth century. Better healthcare, new treatments like antibiotics, kidney dialysis and early chemotherapy, better nutrition, immunisation programmes and other developments radically changed people’s experiences of illness and offered hope of cure, or at least postponement of dying, that was previously impossible. This triggered a behaviour change that saw the sickest people being rushed into hospital for treatment instead of waiting at home to die. Life expectancies increased; many lives were enhanced and lengthened.

  Yet these welcome healthcare advances can only remediate us up to a point; beyond the point of saving us to live ‘well enough’ there is a point of futility. Here, technology is deployed in a new deathbed ritual that is a triumph of denial over experience. The death rate remains 100 per cent, and the pattern of the final days, and the way we actually die, are unchanged. What is different is that we have lost the familiarity we once had with that process, and we have lost the vocabulary and etiquette that served us so well in past times, when death was acknowledged to be inevitable. Instead of dying in a dear and familiar room with people we love around us, we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.

  This is a book about real events. Everything described really happened to someone, sometime, in the last forty years. To preserve the anonymity of the people described, almost all the names have been changed, along with their jobs, and sometimes their gender or ethnicity. Because these are stories rather than case histories, sometimes the experience of several people is woven into a single individual’s narrative, to allow specific aspects of the journey to be depicted. Many of the situations may seem familiar because, despite our averted gaze, death is unavoidable, and these accounts will have parallels in many people’s own experience.

  Because most of my career has been spent working in palliative care, it is inevitable that most of these stories are about people who have had access to palliative care specialists. This generally means that any challenging physical symptoms have been engaged with and usually reasonably well controlled, and emotional symptoms are being addressed. Palliative care is not solely concerned with dying: excellent symptom management should be accessible to people of all diagnoses at any stage of their illness, when they require it. That is the broad remit of the specialty of palliative medicine. The majority of our patients, however, are in the last months of their lives, and this gives us a particular insight into the way people live when they know that they are dying. It is that part of our experience that I am seeking to convey in these stories: how the dying, like the rest of us, are mainly getting on with living.

  In the main, I am offering the reader my eyes and ears, my seat at the bedside, my place
in the conversations, and my perspective on events. Where there are lessons for us, these are the gifts of the people whose stories are collected here. Where there are mistakes, they are entirely my own.

  It’s time to talk about dying. This is my way of promoting the conversation.

  Reading the Label

  Medicines usually have a label that says ‘Take as directed.’ This helps us to get the intended benefit from the prescription and to avoid under- or over-dosing. The prescriber should have described what the medicine is for, and agreed a dosing schedule with the patient, who can then choose whether or not to follow the medical advice. The label also often includes a health warning, to ensure that patients know about any potential hazards.

  Perhaps it will help you to decide how best to approach this book if I describe what it’s for, and what kind of ‘dosing schedule’ I had in mind. And yes, there is a health warning, too.

  This book is a series of stories based on real events, and the intention is to allow the reader to ‘experience’ what happens when people are approaching the ends of their lives: how they cope; how they live; what matters most; how dying evolves; what a deathbed is like; how families react. It’s a tiny glimpse into a phenomenon that is happening somewhere around us every single day. By encountering death many thousands of times, I have come to a view that there is usually little to fear and much to prepare for. Sadly, I regularly meet patients and families who believe the opposite: that death is dreadful, and talking about it or preparing for it will be unbearably sad or frightening.

  The purpose of this book is to enable people to become familiar with the process of dying. To achieve this, the stories have been grouped into themes, beginning with stories that describe the unfolding and evolution of dying and the variety of ways in which people respond to it.

  Throughout the book, each story can stand alone to satisfy readers who like to dip in and out at random, but there is a gradual progression from more concrete principles like physical changes, patterns of behaviour or dealing with symptoms, towards more abstract concepts like making sense of human impermanence and how we evaluate, in the end, what has been truly important to us.

  Also threaded through the book, but not in any chronological order, is an account of my transition from a naïve and frightened student to an experienced and (relatively) calm physician. My life has been immeasurably enriched by working within clinical teams of skilled colleagues, many of whom feature in these stories. They have supported me and acted as mentors, role models and guides throughout my career, and I am deeply aware that our strength lies in teamwork, which always makes us stronger than the sum of our individual parts.

  Health warning: these stories will probably make you think not just about the people in them, but about yourself, your life, your loved ones and your losses. You are likely to be made sad, although the aim is to give you information and food for thought.

  At the end of each section there are suggestions of things to think about and, if you can, to talk about with someone you trust. I’ve based these suggestions on current knowledge from clinical research, on ways I have seen people and families coping with serious illness and death, and on the gaps I have encountered that could have been filled to make the last part of life, and the goodbyes, so much less challenging.

  I’m sorry if you’re made sad, but I hope that you will also feel comforted and inspired. I hope you will be less afraid, and more inclined to plan for and discuss dying. I wrote this book because I hope we can all live better, as well as die better, by keeping the end in mind.

  Patterns

  Medicine is full of pattern-recognition: the pattern of symptoms that separates tonsillitis from other sore throats, or asthma from other causes of breathlessness; the pattern of behaviour that separates the anxious ‘worried well’ from the stoical yet sick person; the pattern of skin rashes that can indicate urgency and thereby save a life.

  There are also patterns in the way a condition evolves. Perhaps the most familiar these days is pregnancy and birth. We know the nine-month pattern of pregnancy: the changing symptoms as morning sickness gives way to heartburn; the early quickening and later slowing of the baby’s movements as the swollen belly constricts activity towards term; the pattern and stages of a normal birth. Watching dying is like watching birth: in both, there are recognisable stages in a progression of changes towards the anticipated outcome. Mainly, both processes can proceed safely without intervention, as any wise midwife knows. In fact, normal birth is probably more uncomfortable than normal dying, yet people have come to associate the idea of dying with pain and indignity that are rarely the case.

  In preparing for a birth, pregnant women and their birth partners learn about the stages and progression of labour and delivery; this information helps them to be ready and calm when the events begin to take place. Similarly, discussing what to expect during dying, and understanding that the process is predictable and usually reasonably comfortable, is of comfort and support to dying people and those who love them. Sadly, wise ‘midwives’ to talk us through the dying process are scarce: in modern healthcare, fewer doctors and nurses have opportunity to witness normal, uncomplicated dying as their practice increasingly entangles technology with terminal care.

  The stories in this section describe the patterns of approaching our dying, and how recognising those patterns enables us to ask for, and to offer, help and support.

  Unpromising Beginnings

  It is inevitable that a career in medicine will involve seeing death. My journey into familiarity with death began with a still-warm body, and continued with the necessity of discussing the deaths of patients with their newly bereaved loved ones. It was a long way from talking about dying with people who were themselves dying, a conversation that would have been discouraged by medical wisdom when I was training, but it was an apprenticeship of sorts, and it taught me to listen. In listening, I began to understand patterns, to notice similarities, to appreciate others’ views about living and dying. I found myself wondering, fascinated, and I found a sense of direction.

  I first saw a dead person when I was eighteen. It was my first term at medical school. He was a man who had died of a heart attack on his way to hospital in an ambulance. The paramedics had attempted to resuscitate him, without success, and the emergency department doctor whom I was shadowing was called to certify death in the ambulance, before the crew took the body to the hospital mortuary. It was a gloomy December evening and the wet hospital forecourt shone orange in the streetlamps; the ambulance interior was startlingly bright in comparison. The dead man was in his forties, broad-chested and wide-browed, eyes closed but eyebrows raised, giving an impression of surprise. The doctor shone a light in his eyes, listened over his chest for heart or breath sounds; he examined a print-out of the ECG from the last moments that his heart was beating, then nodded to the crew. They noted the time of this examination as the declared time of death.

  They disembarked. I was last out. The man was lying on his back, shirt open, ECG pads on his chest, a drip in his right arm. He looked as though he was asleep. He might just wake up at any moment, surely? Perhaps we should shout in his ear; perhaps we should just give him a vigorous shake; he would surely rouse. ‘Come on!’ the doctor called back to me. ‘Plenty to do for the living. Leave him for the crew.’

  I hesitated. Perhaps he’s made a mistake. If I stand here long enough, I’ll see this man take a breath. He doesn’t look dead. He can’t be dead.

  Then the doctor noticed my hesitation. He climbed back into the ambulance. ‘First time, eh? OK, use your stethoscope. Put it over his heart.’ I fumbled in the pocket of my white coat (yes, we wore them then) and withdrew the shiny new tool of my trade-to-be, all the tubing tangled around the earpieces. I put the bell of the stethoscope over where the heart should be beating. I could hear the distant voice of one of the crew telling someone he would like sugar in his coffee–but no heart sounds. My observant trainer picked up the end of my stethoscope and rotate
d it, so that it would pick up noises from the patient and not from the world, and placed it back over the heart. Now there was utter silence. I had never heard silence so solid, nor listened with such focus. And now I noticed that this man looked a little pale. His lips were a deep purple and his tongue was visible, also dusky. Yes, he is dead. Very newly dead. Still working out how to be dead. ‘Thank you,’ I said to the pale man. We left the ambulance and walked through the orange rain back into A&E.

  ‘You’ll get used to it,’ said the doctor kindly, before he picked up a new chart and carried on with his evening shift. I was perplexed by the stark simplicity, the lack of ceremony. Our next patient was a child with a sweet stuck up her nose.

  There were other, less vividly remembered deaths while I was a student, but in the first month after I had qualified, I earned the hospital record for the number of death certificates issued. This was simply because I was working on a ward that had a lot of people with incurable illnesses, and not due to any personal responsibility for their deaths, please understand. I quickly became on first-name terms with the bereavement officer, a kindly woman who brought around the book of certificates to be signed by the doctor who had declared the patient dead. In just the same way as I had seen in that ambulance five years earlier, I noted the deaths of fourteen people in my first ten days (or perhaps it was the other way round); the bereavement officer quipped that perhaps I should get an award.

  What the bereavement officer didn’t see, though, was the massive learning curve I was climbing. Each of those certificates was about a person, and each of those people had family members who needed to be told about the death, and who wanted to know the reasons their loved one had died. In my first month of clinical practice I had twenty conversations with bereaved families. I sat with people while they wept or stared blankly into a future they could barely contemplate; I drank cups of tea-with-sympathy, brewed at Sister’s instruction by one of the experienced auxiliary nurses and carried on a tray (‘With a proper cloth, please!’ ‘Yes, Sister.’) into Sister’s office, which was only entered by doctors with Sister’s personal permission. Bereavement visits were an exception: permission was assumed.