Читать книгу With the End in Mind: Dying, Death and Wisdom in an Age of Denial - Kathryn Mannix, Kathryn Mannix - Страница 11

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.

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.

‘Here’s the lass what sent us to the shops!’ shouts Holly, and shows me her newly manicured fingernails, a treat from her sister.

‘Bugger of a job keeping her bloody hands still!’ laughs Nan.

They have had a wonderful trip out: Holly has loved meeting and greeting friends and neighbours she has not seen for weeks, and all have admired her grit in getting out. She has bought a massive carton of cigarettes, a crate of beer and lots of crisps, and these are now being shared at the impromptu pavement party.

I explain that we need to check her syringe-driver and then give her a small dose of the antidote, to be sure it doesn’t disagree with her before giving a larger dose to last overnight. We need to go up to her flat. Barry and Tony lift the wheelchair as easily as though it is a shopping bag, and carry Holly upstairs to the fifth-floor landing. Nan lets us in, and goes to put the kettle on; Holly’s sister and Amy follow. I introduce the leader, and he examines Holly’s arm movements to satisfy himself about the diagnosis. Tea mugs are produced for the workers, everyone else continues to drink beer. Holly knows she must stick to small volumes of fluids, so she drinks her beer from a dainty china teacup.

I wash my hands in the kitchen to prepare to give the antidote injection. Someone has tidied the flat since earlier today, and all the surfaces are gleaming. Then I insert a tiny needle under the loose skin of Holly’s forearm, and give the first small dose. Conversation continues around the room; Barry and Tony depart with their mum’s wheelchair; Nan and Amy settle into armchairs while Holly’s sister, Poppy, sits beside me on the sofa, from where we watch Holly threading her restless way around the room, the leader beside her in case she falls. She is still describing the fun of her afternoon.

Eventually she takes a seat on the sofa beside her sister. She fidgets, but remains sitting. She gradually stops talking, and listens to the chatter around her. I can see the leader watching her intently.

‘Are you sleepy, Holly?’ he asks gently. She nods. Poppy and I make space for her to lie on the sofa, but she twists and turns. She is too frail to get upstairs to bed, so Amy, always the practical one, brings down the rolled-up mattress she uses when friends sleep over. Nan and Poppy make up a bed, and Holly lies down. Her eyes are closing.

‘How are you feeling now, Holly?’ asks the leader.

No reply. Holly snores gently, and Amy laughs, but Nan leans forward and says, ‘Holly? Holly?!’ She is afraid.

The leader sits on the floor beside the mattress and takes Holly’s pulse. She is lying completely still now, breathing gently and occasionally snoring. The leader looks up at us all, and says, ‘Can you see how she is changing?’ And she is. She is becoming smaller. Her energy is gone, and the weariness that has been creeping up on her for the last couple of weeks is now overwhelming her.

Nan reaches for Holly’s hand, and says, ‘Amy, get your sister.’

Amy looks perplexed. Her sister is at a friend’s house for the weekend. She won’t want to be disturbed. Amy has not understood what is happening here.

‘Amy,’ I say, ‘I think your mum is so very tired that she may not wake up again.’

Amy’s mouth drops open. Her eyes dance between her mother, the leader taking her pulse, her Nan, and my face. ‘It wasn’t what she did today that tired her out,’ I say. ‘What you helped her to do today was fantastic. But she was already exhausted before her busy night last night, wasn’t she?’

Amy’s wide-eyed stare makes her look very like her mum as she nods in agreement. ‘And that exhaustion is caused by her illness, not by how busy she’s been today,’ I explain. ‘But if your sister wants to be here for her mum, then now is the time to come.’

Amy swallows and gets to her feet. She picks up a notebook and begins to look for a phone number.

‘Give it to me,’ says Nan. ‘I’ll phone.’

Amy silently points out the number, and Nan moves across to the window ledge, where the phone sits beside the cassette player. She dials. We hear the buzzing drone of the ring; we hear a voice answer the phone; then Nan gives her message as Holly opens her eyes and says, ‘Why am I lying down here?’

‘Too drunk to get to bed again,’ says Poppy, trying to smile but with tears running down her nose.

‘Don’t cry, Poppy,’ says Holly. ‘I’m OK. I’m just so tired. But haven’t we had a lovely day?’ She wriggles herself into the eiderdown and says, ‘Where’s my girls?’

‘I’m here, Mam,’ says Amy, ‘and Tanya’s on her way.’

‘Come and snuggle down with me,’ smiles Holly. Amy looks up at us. The leader moves back to leave space and nods at her. Amy lies down alongside her mum, and hugs her.

The front door bangs open, and a girl shoots through it.

‘Mam? Mam! Is she here? Where is she? Nan? Nan! What’s happening?’

Nan walks over and hugs her, then draws her across the room, saying, ‘She’s here, Tanya, she’s here. She’s so tired we’ve made her a camp bed. These are the doctors. Mam’s OK, but she’s very tired, and she wants a cuddle.’

Tanya kneels on the floor by her mother’s head, and Amy reaches up to take her hand, drawing it down to touch their mother’s cheek.

‘Here’s Tanny, Mam,’ she says. Holly puts her hand over the girls’ hands, and sighs.

Over the next half-hour, the light fades outside and the room becomes dark. No one moves. We sit in the semi-dark, an orange glow lighting the room from the streetlamps outside. Every now and then, the leader gives a quiet commentary.

‘Look how peacefully she’s sleeping.’

‘Can you hear how her breathing has changed? It’s not so deep now, is it?’

‘Have you noticed that she stops breathing from time to time? That tells me that she is unconscious, very deeply relaxed … This is what the very end of life is like. Just very quiet and peaceful. I don’t expect she will wake up again now. She is very comfortable and peaceful.’

And then Holly’s breathing becomes too gentle to float a feather.

And then it stops.

The family are so mesmerised by the peace in the room that no one seems to notice.

Then Nan whispers, ‘Is she still breathing?’

The girls sit up and look at Holly’s face.

‘I think she stopped breathing a few minutes ago,’ says Poppy, ‘but I was hoping it wasn’t true.’

‘Did you feel her move at all?’ the leader asks the girls, and they shake their heads as their tears begin.

‘Well done, you lovely family. You gave her the most wonderful day and the most peaceful evening. She has died’ – the girls gasp and sob, and he waits for quiet before he continues. ‘She has died so peacefully because she felt at peace with you here. You have done her proud.’

The girls move away from the mattress. The leader encourages them to touch their mum, to talk to her, to maintain the calm in the room. I am fascinated to see them lie down beside her again, weeping gently and whispering their love to her. It is almost unbearably sad, but this is not my family, and I feel my tears would be misplaced. I struggle to focus on the guidance being provided by the leader.

To Nan he says, ‘We need to telephone an on-call GP to certify her death, and then you can call a funeral director. But there’s no hurry. Give yourselves time. I’ll call the doctor now. She can stay here all night if that helps you and the girls.’

Nan knows what to do. She has buried two husbands and a son.

She offers us more tea, but the leader has informed the on-call GP of the death, and says we must be going. We let ourselves out of the smoky flat and onto the lamp-lit balcony, walk in silence down the gloomy stairs and out onto the pavement.

‘You OK?’ asks the leader.

Of course I’m not. I think I just killed someone. ‘Yes, fine,’ I reply.

‘You know the injection didn’t kill her, don’t you?’

‘Mmmm …’ I sniff.

‘She was so exhausted that she would probably have died last night if she hadn’t got that false energy from the akathisia. If you hadn’t controlled it she would simply have danced herself to death, agitated and upset. Instead, you managed her restlessness. And that gave her the peace to lie down and cuddle her girls, after her magnificent last day.’

We walk back to the car as a new mist rolls up from the river, and evening turns to night. My first day on call for the hospice. Not a day I will ever forget.

I learned a very important lesson watching the leader talk Holly’s family through the sequence of changes as her body relaxed, and dying displaced the restless energy she had been given by her anti-sickness medication. He was naming what they could observe; he was leading them through the process; he was reassuring them that all was expected, and usual, and safe. This is the task of the experienced midwife, talking the participants through the process, delivering them safely to the expected place. It is a gift that allowed the daughters to remain present and involved, and enabled them to look back and know that their calm presence was their final gift to their beloved Mam. It was a rare opportunity to watch a master at work, and to learn from that gentle, observant example.