Kitabı oku: «With the End in Mind: Dying, Death and Wisdom in an Age of Denial»

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.

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.

French Resistance

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.

Our leader requested that the nurse to whom Sabine had confided her fear should accompany him, and added that I might find the conversation interesting. I wondered what he was going to say. I anticipated that he would explain about pain management options, to help Sabine be less worried about her pain getting out of control. I wondered why he wanted me to come along, as I felt I was already quite adept at pain management conversations. Ah, the confidence of the inexperienced …

Sabine was delighted to see him. He greeted her in French, and asked her permission to sit down. She sparkled and patted the bed, indicating where he should sit. The nurse sat in the bedside chair; I grabbed a low stool and squatted down on it, in a position from which I could see Sabine’s face. There were French pleasantries, and then our leader came to the point. ‘Your nurse told me that you have some worries. I am so glad you told her. Would you like to discuss this with me?’

Sabine agreed. Our leader asked whether she would prefer the conversation to be in English or French. ‘En Anglais. Pour les autres,’ she replied, indicating us lesser beings with benevolence. And so he began.

‘You have been worrying about what dying will be like, and whether it will be painful for you?’

‘Yes,’ she replied. I was startled by his direct approach, but Sabine appeared unsurprised.

‘And you have been worrying that your courage may fail?’

Sabine reached for his hand and grasped it. She swallowed, and croaked, ‘Oui.’

‘I wonder whether it would help you if I describe what dying will be like,’ he said, looking straight into her eyes. ‘And I wonder whether you have ever seen anyone die from the illness that you have?’

If he describes what? I heard myself shriek in my head.

Sabine, focused and thoughtful, reminisced that during the war a young woman had died of gunshot wounds in her family’s farmhouse. They had given her drugs that relieved her pain. Soon after, she stopped breathing. Years later, Sabine’s beloved husband had died after a heart attack. He collapsed at home and survived to reach hospital. He died the following day, fully aware that death was approaching.

‘The priest came. Peter said all the prayers with him. He never looked afraid. He told me goodbye was the wrong word, that this was au revoir. Until we see each other again …’ Her eyes were brimming, and she blinked her tears onto her cheeks, ignoring them as they ran into her wrinkles.

‘So let’s talk about your illness,’ said our leader. ‘First of all, let’s talk about pain. Has this been a very painful illness so far?’

She shakes her head. He takes up her medication chart, and points out to her that she is taking no regular painkillers, only occasional doses of a drug for colicky pain in her abdomen.

‘If it hasn’t been painful so far, I don’t expect it to suddenly change character and become painful in the future. But if it does, you can be sure we will help you to keep any pain bearable. Can you trust us to do that?’

‘Yes. I trust you.’

He continues, ‘It’s a funny thing that, in many different illnesses that cause people to become weaker, their experience towards the end of life is very similar. I have seen this many times. Shall I tell you what we see? If you want me to stop at any point, you just tell me and I will stop.’

She nods, holding his gaze.

‘Well, the first thing we notice is that people are more tired. Their illness saps their energy. I think you are already noticing that?’

Another nod. She takes his hand again.

‘As time goes by, people become more tired, more weary. They need to sleep more, to boost their energy levels. Have you noticed that if you have a sleep during the day, you feel less weary for a while when you wake up?’

Her posture is changing. She is sitting up straighter. Her eyes are locked on his face. She nods.

‘Well, that tells us that you are following the usual pattern. What we expect to happen from now on is that you will just be progressively more tired, and you will need longer sleeps, and spend less time awake.’

Job done, I think. She can expect to be sleepy. Let’s go … But our leader continues talking.

‘As time goes by,’ he says, ‘we find that people begin to spend more time sleeping, and some of that time they are even more deeply asleep, they slip into a coma. I mean that they are unconscious. Do you understand? Shall I say it in French?’

‘Non, I understand. Unconscious, coma, oui.’ She shakes his hand in hers to affirm her understanding.

‘So if people are too deeply unconscious to take their medications for part of the day, we will find a different way to give those drugs, to make sure they remain in comfort. Consoler toujours. Yes?’

He must be about to stop now, I think. I am surprised that he has told her so much. But he continues, his gaze locked onto hers.

‘We see people spending more time asleep, and less time awake. Sometimes when they appear to be only asleep, they are actually unconscious, yet when they wake up they tell us they had a good sleep. It seems we don’t notice that we become unconscious. And so, at the very end of life, a person is simply unconscious all of the time. And then their breathing starts to change. Sometimes deep and slow, sometimes shallow and faster, and then, very gently, the breathing slows down, and very gently stops. No sudden rush of pain at the end. No feeling of fading away. No panic. Just very, very peaceful …’

She is leaning towards him. She picks up his hand and draws it to her lips, and very gently kisses it with great reverence.

‘The important thing to notice is that it’s not the same as falling asleep,’ he says. ‘In fact, if you are well enough to feel you need a nap, then you are well enough to wake up again afterwards. Becoming unconscious doesn’t feel like falling asleep. You won’t even notice it happening.’

He stops and looks at her. She looks at him. I stare at both of them. I think my mouth might be open, and I may even be leaking from my eyes. There is a long silence. Her shoulders relax and she settles against her pillows. She closes her eyes and gives a deep, long sigh, then raises his hand, held in both of hers, shakes it like shaking dice, and gazes at him as she says, simply, ‘Thank you.’ She closes her eyes. We are, it seems, dismissed.

The nurse, our leader and I walk to the office. Our leader says to me, ‘That is probably the most helpful gift we can ever give to our patients. Few have seen a death. Most imagine dying to be agonising and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see something terrible. I never get used to having that conversation, even though it always ends by a patient knowing more yet being less afraid.’

Then, kindly overlooking my crumpled tissue, he suggests, ‘Shall we have a cup of tea?’

I escape to brew the tea and wipe my tears. I begin to reflect on what I have just seen and heard. I know that he has just described, with enormous skill, exactly what we see as people die, yet I had never considered the pattern before. I am amazed that it is possible to share this amount of information with a patient. I review all my ill-conceived beliefs about what people can bear: beliefs that had just scrolled through my startled and increasingly incredulous consciousness throughout that conversation; beliefs that would have prevented me from having the courage to tell Sabine the whole truth. I feel suddenly excited. Is it really within my gift to offer that peace of mind to people at the ends of their lives?

This book is about my learning to observe the details of that very pattern our leader explained to Sabine all those years ago. In the next thirty years of clinical practice, I found it to be true and accurate. I have used it, now adapted to my own words and phrases, to comfort many hundreds, perhaps even thousands, of patients in the same way that it brought such comfort to Sabine. And now I am writing it down, telling the stories that illustrate that journey of shrinking horizons and final moments, in the hope that the knowledge that was common to all when death took place at home can again be a guide and comfort to people contemplating death. Because in the end, this story is about all of us.

Tiny Dancer

The pattern of decline towards death varies in its trajectory, yet for an individual it follows a relatively even flow, and energy declines initially only year to year, later month to month, and eventually week by week. Towards the very end of life energy levels are less day by day, and this is usually a signal that time is very short. Time to gather. Time to say any important things not yet said.

But sometimes there is an unexpected last rise before the final fall, a kind of swansong. Often this is unexplained, but occasionally there is a clear cause, and sometimes the energy rush is a mixed blessing.

Holly has been dead for thirty years. Yet this morning she is steadily dragging herself out of the recesses of my memory and onto my page. She woke me early; or perhaps it was waking on this misty autumn morning that brought her last day to mind. She twisted and twirled her way into the focus of my consciousness: initially just images like an old silent-movie reel showing disjointed snatches of her pale smile, her pinched nose, her fluttering hand movements. And then her laugh arrived, with the crows outside my window: her barking, rasping laugh, honed by the bitter winds along the industry-riven river, by teenage smoking and premature lung disease. Finally, she drew me from my warm bed and sat me down to tell her story, while mist was still bathing the gardens beneath an autumn dawn.

Thirty years ago, arriving at my first hospice job with several years’ experience of a variety of medical specialties, some training in cancer medicine and a freshly minted postgraduate qualification, I probably saw myself as quite a catch. I know that I was buoyed up by the discovery that palliative care fitted all my hopes for a medical career: a mixture of teamwork with clinical detective work to find the origins of patients’ symptoms in order to offer the best possible palliation; of attention to the psychological needs and resilience of patients and their families; honesty and truth in the face of advancing disease; and recognition that each patient is a unique, whole person who is the key member of the team looking after them. Working with, rather than doing to: a complete paradigm shift. I had found my tribe.

The leader of this new hospice had been on call for the service without a break until my arrival in early August. Despite this he exuded enthusiasm and warmth, and was gently patient with my questions, my lack of palliative care experience, my youthful self-­assurance. It was a wonder to see patients I already knew from the cancer centre, looking so much better than when they had recently been in my care there, now with pain well controlled but brains in full working order. I may have thought highly of myself, but I recognised that these people were far better served by the hospice than they had been by the mainstream cancer services. Perhaps my previous experiences were only a foundation for new knowledge; perhaps I was here not to perform, but to learn. Humility comes slowly to the young.

After my first month of daily rounds to review patients, adjusting their medication to optimise symptom control but minimise side-effects, watching the leader discuss mood and anxieties as well as sleep and bowel habit, attending team meetings that reviewed each patient’s physical, emotional, social and spiritual wellbeing, the leader decided that I was ready to do my own first weekend on call. He would be back-up, and would come in to the hospice each morning to answer any queries and review any particularly tricky challenges, but I would take the calls from the hospice nurses, from GPs and hospital wards, and try to address the problems that arose. I was thrilled.

Holly’s GP rang early on the Saturday afternoon. Holly was known to the city’s community palliative care nurses, whose office was in the hospice, so he hoped that I might know about her. She was in her late thirties, the mother of two teenagers, and she had advanced cancer of the cervix, now filling her pelvis and pressing on her bladder, bowels and nerves. The specialist nurses had helped the GP to manage her pain, and Holly was now able to get out of bed and sit on the outdoor landing of her flat to smoke and chat with her neighbours. When she developed paralysing nausea in the previous week, her symptoms were improved greatly by using the right drug to calm the sickness caused as her kidneys failed, as the thin ureter tubes that convey the urine from kidneys to bladder were strangled by her mass of cancer.

Today she had a new problem: no one in her flat had slept all night, because Holly wanted to walk around and chat to everyone. Having hardly walked more than a few steps for weeks, overnight she had suddenly become animated and active, unable to settle to sleep, and she had woken her children and her own mother by playing loud music and attempting to dance to it. The neighbours had been banging on the walls. At first light her mother had called the GP. He found Holly slightly euphoric, flushed and tired, yet still dancing around the flat, hanging onto the furniture.

‘She doesn’t seem to be in pain,’ the GP explained to me, ‘and although she’s over-animated, all her thought content is normal. I don’t think this is psychiatric, but I have no idea what is going on. The family is exhausted. Do you have a bed?’

All our beds were full, but I was intrigued. The GP accepted my offer to visit Holly at home, so I retrieved her notes from the community team office and set off through the receding autumn mist to the area of the city where long terraces of houses run down to the coalyards, ironworks and shipbuilders that line the river’s banks. In places the terraces were interrupted by brutal low-rise blocks of dark brick flats crowned with barbed-wire coils and pierced by darkened doorways hung with cold neon lights in tamper-proof covers. These palaces bore unlikely names: Magnolia House, Bermuda Court, and my destination, Nightingale Gardens.

I parked my car at the kerbside and sat for a moment, surveying the area. Beside me rose the dark front of Nightingale Gardens. On the ground floor, a bare stone pavement ran from the kerb to the tenement block: not a tree or a blade of grass to garnish these ‘gardens’, which certainly never saw or heard a nightingale. Across the road, a terrace of council-owned houses grinned a toothy smile of white doors and window frames, all identical and recently painted. Some of the tiny front gardens displayed a few remnants of late-summer colour; rusting bed-frames or mangled bicycles adorned others. Several children were playing in the street, a game of catch with a tennis ball played while dodging a group of older boys who were aiming their bikes at the players. Yelps of excitement from the kids, and from a group of enthusiastic dogs in assorted sizes who were trying to join in.

I collected my bag and approached Nightingale Gardens. I needed to find number 55. An archway marked ‘Odds’ led to a dank, chilly concrete tunnel. My breath was visible in the gloomily lit staircase. On the landing, all the door numbers were in the thirties. Up another couple of flights I found the fifties, and halfway along the balcony corridor that overlooked the misty river, and was itself overlooked by cranes rising above the mist like origami giants, number 55. I knocked and waited. Through the window I could hear Marc Bolan telling me that I won’t fool the children of the revolution.

The door was opened by a large woman in her fifties wearing a miner’s donkey jacket. Behind her was a staircase leading to another floor, and beside her the living-room door swung open to reveal a diminutive, pale woman leaning on a table and moving her feet to the T. Rex beat.

‘Shut the door, will you?’ she trilled across to us. ‘It’s cold out there!’

‘Are you the Macmillan nurse?’ the older woman asked me. I explained that I worked with the Macmillan nurses, but that I was the doctor on call. She beckoned me inside with an arc of her chin, while simultaneously indicating with animated eyebrows that the younger woman was causing her some concern. Then she straightened up, shouted, ‘I’m off to get more ciggies, Holly!’ and left the flat.

Holly looked at me and explained, ‘We smoked ’em all last night. Gaspin’ now!’ Then she invited me in, saying, ‘Wanna cuppa?

There was something childlike about Holly, with her tiny frame and her dark hair swept up into a high ponytail. Her skin shone with an alabaster clarity, stretched taut over swollen legs and a pinched face. She seemed to emanate a faintly yellow light, like a fading lightbulb. She was in constant motion, as though driven by an unseen force. Her feet danced while her hands leaned on the table; then she sat down abruptly in one of the upright chairs and began to rub her hands along her arms, along her thighs, along her calves, shuffling her bottom and nodding her head in time to the music. Alice Cooper next: Holly drummed her fingers, then played air guitar, tossing her ponytail to celebrate school being blown to pieces. Throughout, she sang along in a thin contralto embellished by occasional hiccups.

The music stopped with a click that drew my attention to the cassette player on the window ledge. These must be mix tapes she had recorded in her teens. Without the music to give shape to her movements, the choreography broke down and she simply rocked on her chair, rubbing her limbs with her thin hands and tossing her hair like an angry genie. She looked up at me, as though noticing me for the first time, and asked, ‘Got a ciggie?’ When I shook my head she laughed and said, ‘Oops, no, you’re the doctor, aren’t you? You won’t approoove of ciggies!’ in a sing-song voice tinged with sarcasm.

‘So, what’s the deal, doc?’ she said next. ‘I feel GREAT today! I wanna sing and dance and get outta this bloody flat!’ Casting her gaze around the room, she sighed heavily. ‘It’s like a pigsty in here. Needs a good cleaning. Amy! AMY!!!’ she moved her gaze to the ceiling, brown with cigarette smoke, as though to look at Amy, who was presumably upstairs.

A teenage girl in pyjamas appeared at the living-room door.

‘Mam?’ she asked. ‘Mam, what’s all the noise for?’ Then, catching sight of me, she whispered, ‘Who’s this? Where’s Nan?’

‘Nan’s gone for ciggies. This is the doctor. This place needs cleaning. Get the Hoover over it, will you?’

Amy rolled her teenage eyes, said, ‘Yeah, in a mo,’ and dis­­appeared back up the stairs just as her grandmother reappeared through the front door. Lighting two cigarettes at once, Nan held one out to Holly then stumped through to the kitchen, saying, ‘I’ll get the kettle on. Tea, doctor? Biscuit?’

Seated on the sofa, I watched Holly continue her interminable movements. I recognised this pattern. I just needed a bit more information.

‘Holly, are you feeling restless?’ I asked.

She regarded me solemnly, exhaled her smoke, and then said, ‘Look, are you gonna ask a load of questions? Cos, not to be rude or anything, I’ve already done that with the first doctor. So it’s like this – yes, I can’t lie still, can’t get to sleep, can’t get the tunes out of my head. OK? Got the idea?’

Nan appeared with a tray of mugs filled with tea, a plate of biscuits and thickly sliced fruitcake. I have come to know such hospitality is a custom along the riverside.

‘Holly’s not usually so grumpy,’ said Nan. ‘I think she’s tired. None of us got any sleep last night.’

‘When would you say the restlessness started?’ I asked. The women looked at each other to consider.

‘It’s really since you stopped being so sick,’ said Nan.

Holly agreed. ‘That puking was doing my head in. I couldn’t keep nothing down. But now I don’t feel sick I feel really kind of energetic.’

It seemed bizarre that this waif, glowing with the lemon tinge of kidney failure, her life ebbing like a fading echo, could describe herself as energetic. I asked her to hold her arms out in front of her and to close her eyes. Her arms twisted and danced before her, and she bounced her legs on the balls of her feet. When I took her hand and slowly flexed her arm at the elbow, I could feel the muscles tensing and releasing as though the joint was moved by cogwheels. Her gaze was unblinking in her doll-like face.

‘When did the sickness stop?’ I asked, although I already knew the answer: the day the nurses gave her a syringe-driver with anti-sickness medication for her kidney failure. The same day the restlessness began. Because the drugs that were stopping her nausea were also giving her this sense of driven restlessness: akathisia, or ‘inability to sit’. She was perceiving the sense of drivenness as ‘kind of energetic’, and it was this that had suddenly caused her to get out of bed and want to move around.

Here’s a dilemma. This young mother is close to the end of her life. Her kidney failure is so severe that many people would be unconscious at this stage, but the drug that has stopped her nausea and vomiting is also causing restlessness and a desire to get out and about. Her legs don’t have the strength to hold her up, and she is in a fifth-floor flat. I don’t want to stop the anti-sickness drug: her nausea would return very quickly. Yet she will exhaust her meagre energy reserves if she keeps pacing and dancing and cannot get some sleep.

There is a drug, an injection, that will reverse this restlessness and ceaseless drive to movement, without losing control of her nausea. We keep it in the hospice, and I can go back to get it. But in the meantime Holly is stir crazy, like a caged animal. How can we assuage her desire to be on the move?

‘Do you have a wheelchair?’ I ask. No, Holly was well enough to get up and down the stairs until two weeks ago. Then the pain kept her indoors. Then when the pain was better she was exhausted by her nausea.

‘Sally downstairs has got a wheelchair,’ chimes a voice from the doorway. Amy has been listening in. She is dressed now, in black tights and a neon-yellow T-shirt, stripy yellow-and-black leg-warmers and an army beret. ‘We can borrow it. Where are you taking her?’

‘I’m not taking her anywhere. I’m going back to the hospice to get another medicine to help with this restlessness. But while she’s so restless and desperate to get out, I wondered if you’d like to take her out and around the shopping arcade down the road. Just for a change of scenery.’

Nan looks startled. Amy shouts, ‘I’m going to ask Sally!’ and leaves. Holly looks gratefully at me, and says, ‘Well, I never expected that! Thanks, doc. They keep mollycoddling me, and getting out will be brilliant …’

After a couple of minutes, Amy taps on the window. She is on the balcony corridor with a wheelchair and two huge men in black leather jackets.

‘Tony and Barry will carry her down, and we’ll go round the shops!’ she exclaims gleefully.

‘Wait – there’s no lift?’ I ask, but there’s no point – the seed is sown, the wheelchair borrowed, and Nan is already on the phone to Holly’s sister to arrange to meet her at the shops. And I’m not about to contradict Tony and Barry, who are Sally Downstairs’s sons. They are on a mission. And they are massive – only their enthusiastic smiles are wider than their huge shoulders.

I head back to the hospice, and phone the leader. I describe the scenario – the petite patient so frail, with advanced kidney failure; weaker day by day until this sudden flush of ‘false energy’ caused by the anti-sickness drug; my diagnosis of akathisia and my plan to treat it. After asking a few questions he seems satisfied by my examination and conclusions. He asks whether I’d like him to come with me to give the antidote and make the next plans, and although I want to be able to cope on my own, a mental picture of the smoke-stained room, the tiny dancing patient and the gigantic, leather-clad neighbours makes me glad to accept the offer. He drives to the hospice while the nurses help me to gather the drugs and equipment I will need.