With the End in Mind

by Kathryn Mannix

  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 tenn
is 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.

  The second trip to the riverside feels different. The mist has cleared away, and the afternoon is lengthening into early evening. Nightingale Gardens is in sunshine as we park outside, and there seems to be a party going on outside one of the ground-floor flats. Looking closer, I recognise Barry and Tony, the neon glow of Amy’s T-shirt, and Holly in the wheelchair wearing a fluffy bright pink dressing gown and a knitted hat. Nan has her back to us in the NCB donkey jacket, and an older woman whom I take to be Sally Downstairs is sitting in an armchair on the pavement. Cans of beer are being drunk; there is laughter; people come and go from the flat. When the leader and I approach, we are waved over and greeted like family.