With 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 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.