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With the End in Mind
Dying, Death, and Wisdom in an Age of Denial
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Modern medical technology is allowing us to live longer and fuller lives than ever before. And for the most part, that is good news. But with changes in the way we understand medicine come changes in the way we understand death. Once a familiar, peaceful, and gentle — if sorrowful — transition, death has come to be something from which we shield our eyes, as we prefer to fight desperately against it rather than accept its inevitability.
Dr. Kathryn Mannix has studied and practiced palliative care for thirty years. In With the End in Mind , she shares beautifully crafted stories from a lifetime of caring for the dying, and makes a compelling case for the therapeutic power of approaching death not with trepidation, but with openness, clarity, and understanding.
Weaving the details of her own experiences as a caregiver through stories of her patients, their families, and their distinctive lives, Dr. Mannix reacquaints us with the universal, but deeply personal, process of dying. With insightful meditations on life, death, and the space between them, With the End in Mind describes the possibility of meeting death gently, with forethought and preparation, and shows the unexpected beauty, dignity, and profound humanity of life coming to an end.
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.
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.
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 rotated 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.
Sometimes I was the second fiddle, listening to a more experienced doctor talking to families about illness, death, why the drugs hadn’t worked, or why an infection had torn the person away just as their leukaemia was responding. The family members nodded bleakly, sipped tea, dripped tears. Sometimes I was the only doctor available if others were in clinics, or it was after hours, and sometimes I brewed the tea-with-sympathy myself, finding the familiar routine a comfort, noticing the details of the flowery, gilded china cups and saucers that Sister provided for these most special visitors, before taking a deep breath and entering the room to give the worst news in the world.
To my surprise, I found these conversations strangely uplifting. Families were rarely totally unprepared: this was a ward for people who had life-threatening illnesses. During these conversations I would learn so much about the deceased person, things I wished I had known while they were alive. Families told stories about their gifts and talents, their kindnesses and interests, their quirks and peculiarities. These conversations were almost always in the present tense: there was a sense of their loved one still being present in some way, perhaps while the body was still tucked in the same bed, or was being cared for somewhere else in the hospital. And then they would check themselves, correct the tense, and begin to rehearse their steps into the huge loss that was gradually, terribly, declaring itself.
Some time during my first six months I had to tell an elderly man that his wife had died. She had died suddenly, and the cardiac arrest team had been called. As is customary, her husband had been telephoned and asked to come as soon as he could, no further details given. I found him standing on the ward, outside her room, looking at the unfamiliar screen across the door and the sign saying ‘Please do not enter, please see the nursing staff.’ The crash team had departed, and the nurses were occupied with their drugs round. I asked if I could help, and then saw the bewilderment and fear in his eyes.
‘Are you Irene’s husband?’ I asked. He moved his head to say yes, but no sound came out of his mouth.
‘Come with me, and let me explain,’ I said, leading him to Sister’s office and to yet another of those conversations that change people’s lives. I don’t remember the detail of the conversation, but I remember becoming aware that, with the death of his wife, this man now had no remaining family. He seemed frail and lost, and I was concerned that he might need support in his bereavement. Had I been more aware then of the wonderful contribution that can be made by GPs and primary care services, I might simply have asked his permission to let his GP know that his beloved wife had just died, but I was inexperienced and in an unexpected situation: I had discovered him outside his wife’s room while I was in the middle of administering the midday intravenous antibiotics for the ward. I hadn’t prepared myself for a bereavement discussion.
As usual when terminating these sad conversations, I assured him that I would be happy to talk to him again if he found that he had further questions as time went by. Although I always said this, and I truly meant it, families never did come back for more information. And then I acted on impulse: I gave Irene’s fragile-looking husband my name and telephone number on a piece of paper. I had never given out written contact details like this before, and his apparent indifference as he screwed the scrap of paper into a ball and pocketed it seemed to indicate that this might not be a helpful contribution.
Three months later I was working at a different hospital, now as a junior on a surgical ward, when I received a phone call from the ward sister of my previous ward, she of the tray-with-cloth and the gilded china. Did I remember that patient called Irene, she asked. She had had a call from Irene’s husband, and he was most insistent that he make contact with me. She gave me a number, and I called him.
‘Oh, thank you for calling me back, doctor. It’s so nice to hear your voice…’ He paused, and I waited, wondering what question might have occurred to him, hoping I would know enough to answer it.
‘The thing is…’ he paused again. ‘Well, you were so kind to say I could phone you… and I didn’t know who else I could tell… but, well… the thing is, I finally threw Irene’s toothbrush out yesterday. And today it isn’t in the bathroom, and I really feel she is never coming back…’ I could hear his voice breaking with emotion, and I remembered his bewildered face, back on the ward the morning she died.
The lesson was coming home to me. Those bereavement conversations are just the beginning, the start of a process that is going to take a lifetime for people to live alongside in a new way. I wondered how many others would have called, had I given them a name and a number in writing. By now I was more aware of the network of care that is available, and I asked Irene’s husband for permission to contact his GP. I told him I was honoured that he felt he could call me. I told him that I remembered Irene with such fondness, and that I could not begin to imagine his loss.
Towards the end of my first year after qualification, I found myself reflecting on the many deaths I had attended in that year: the youngest, a sixteen-year-old lad with an aggressive and rare bone-marrow cancer; the saddest, a young mum whose infertility treatments may have been responsible for her death from breast cancer just before her precious son’s fifth birthday; the most musical, an elderly lady who asked the ward sister and me to sing ‘Abide With Me’ for her, and who breathed her last just before we ran out of verses; the longest-distance, the homeless man who was reunited with his family and transported the length of England over two days in an ambulance, to die in a hospice near his parents’ home; and the one that got away–my first cardiac arrest call, a middle-aged man who was post-op and stopped breathing, but who responded to our ministrations and walked out of the hospital a well man a week later.
This is when I noticed the pattern of dealing with dying. I am fascinated by the conundrum of death: by the ineffable change from alive to no-longer-alive; by the dignity with which the seriously ill can approach their deaths; by the challenge to be honest yet kind in discussing illness and the possibility of never getting better; by the moments of common humanity at the bedsides of the dying, when I realise that it is a rare privilege to be present and to serve those who are approaching their unmaking. I was discovering that I was not afraid of death; rather, I was in awe of it, and of its impact on our lives. What would happen if we ever ‘found a cure’ for death? Immortality seems in many ways an uninviting option. It is the fact that every day counts us down that makes each one such a gift. There are only two days with fewer than twenty-four hours in each lifetime, sitting like bookends astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious.
Sometimes, things that are right in front of our noses are not truly noticed until someone else calls them to our attention.
Sometimes, courage is about more than choosing a brave course of action. Rather than performing brave deeds, courage may involve living bravely, even as life ebbs. Or it may involve embarking on a conversation that feels very uncomfortable, and yet enables someone to feel accompanied in their darkness, like ‘a good deed in a naughty world’.
Here’s Sabine. She is nearly eighty. She has a distinguished billow of silver-white hair swept into a knotted silk scarf, and she wears a kaftan (the genuine article, from her travels in the Far East in the 1950s) instead of a dressing gown. She is in constant motion in her hospice bed, playing Patience, applying her maquillage, moisturising her sparrowesque hands. She drinks her tea black and derides the ‘You call that coffee?’ offered by the beverages trolley. She has a French accent so dense it drapes her speech like an acoustic fog. She is the most mysterious, self-contained creature we have encountered in our newly built hospice.
Sabine has lived in England since 1946, when she married a young British officer her Resistance cell had hidden from Nazi troops for eighteen months. Peter, her British hero, had parachuted into France to support the Resistance. He was a communications specialist, and had helped them to build a radio from, by the sound of it, only eggboxes and a ball of string. I suppose he may also have brought some radio components in his rucksack, but I dare not ask. Forty years later, her accent sounds as though she has just stepped off the boat at Dover, a new bride with high hopes. ‘Peter was so clever,’ she murmurs. ‘He could do any-sing.’
Peter was very brave. This is not in doubt: Sabine has his photograph and his medals on her bedside table. He died many years ago, after an illness that he bore with characteristic courage. ‘He was never afraid,’ she recalls. ‘He told me always to remember him. And I do, naturellement, I talk to him every day’–and she indicates the photograph of her handsome husband, resplendent in dress uniform and frozen in monochrome at around forty years of age. ‘Our only sadness was that the Lord did not send us children,’ she reflects. ‘But instead we use our time for great travel and adventures. We were very ’appy.’
Her own medal for courage is pinned to her chest on a black and red ribbon. She tells the nurses that she has only taken to wearing it since she realised that she was dying. ‘It is to remind me that I too can be brave.’
I am a young trainee in the new specialty of palliative medicine. My trainer is the consultant in charge of our new hospice, and Sabine loves to talk to him. From his discussions with her, it emerges that he is bilingual because his father was a Frenchman, and also a Resistance fighter. He occasionally has conversations with Sabine in French. When this happens, she sparkles and moves her hands with animation; the symmetrical Gallic shrugs between them amuse us greatly. Sabine is flirting.
And yet, Sabine is keeping a secret. She, who wears her Resistance Medal and who withstood the terror of the war, is afraid. She knows that widespread bowel cancer has reached her liver and is killing her. She maintains her self-possession when she allows the nurses to manage her colostomy bag. She is graceful when they wheel her to the bathroom and assist her to shower or bathe. But she is afraid that, one day, she may discover that she has pain beyond her ability to endure, and that her courage will fail her. If that should happen, she believes (with a faith based on 1930s French Catholicism mixed with superstition and dread) she will lose her dignity: she will die in agony. Worse: her loss of courage at the end will prevent her forever from rejoining her beloved husband in the heaven she so devoutly believes in. ‘I will not be worthy,’ she sighs. ‘I do not have the courage that I may require.’
Sabine confesses this deep-seated fear while a nurse is drying those silver tresses after a shower. The nurse and Sabine are looking at each other indirectly, via the mirror. In some way, that dissociation of eye contact, that joint labour at the task in hand, enabled this intimate conversation. The nurse was wise; she knew that reassurance would not help Sabine, and that listening, encouraging, allowing the full depth of her despair and fear to be expressed, was a vital gift at that moment. Once her hair was dressed, her silk scarf in place and Sabine indicated that the audience was over, the nurse asked permission to discuss those important concerns with our leader. Sabine, of course, agreed: in her eyes our leader was almost French. He would understand.
What happened next has lived with me, as if on a cinema reel, for the rest of my career. It formed my future practice; it is writing this book. It has enabled me to watch dying in a way that is informed and prepared; to be calm amidst other people’s storms of fear; and to be confident that the more we understand about the way dying proceeds, the better we will manage it. I didn’t see it coming, but it changed my life.
- "With sometimes unsettling detail, admirable empathy and a sprinkling of humor, Dr. Mannix imparts valuable lessons for anyone who faces the loss of a family member or a personal reckoning with impending demise."—The Wall Street Journal
- "With the End in Mind is one of the loveliest books I've ever read. It's part memoir and part self-help manual, part practical advice and part professional credo. Mannix's compassion is bottomless and her scrupulousness unimpeachable."—Bookforum
- On Sale
- Dec 18, 2018
- Page Count
- 352 pages
- Little Brown Spark