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
