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Palliative care

Beauty and the beast

An exclusive extract from 'With the End in Mind: Dying, death and wisdom in an age of denial' (William Collins, HarperCollins UK) by Kathryn Mannix, longlisted for the Wellcome Book Prize 2018. "…the story-teller can hold our hand, even as we walk into the scary places…"

19 February 2018

‘With the End in Mind’ is a book of stories written for lay readers, but I hope the book distils ‘essence of palliative care’ for fellow professionals, too. The power of stories is that the story-teller can hold our hand, even as we walk into the scary places.

This story illustrates how a simple pain consultation can become an holistic assessment of the physical, emotional, social and even spiritual constructs of the person in the consulting-chair. Vronnie’s leg pain was the acceptable manifestation of her inner anguish, and using a CBT approach enabled her to explore and adapt to the challenge of being a young Mum with a terminal illness.

The power of imagery, the creativity of behavioural experiments, and the Therapist’s own vulnerability and need for Supervision are all included in this story. By enabling some of the story to be told in Vronnie’s words, dialogue provides a window into the patient’s world that a case-study format doesn’t allow.

Dying is a unique, individual experience. Just as in any psychological intervention, we can only help by understanding the patient’s experience, asking our ‘simple questions’ to discover, sometimes with the patient herself, what the deepest thoughts and beliefs are beneath the presenting symptoms.

Kathryn Mannix
Fellow, BABCP


Bereavement is the process that moves us from the immediacy of loss and the associated grief, through a transition period of getting to know the world in a new way, to a state of being able to function well again. It’s not about ‘getting better’ – bereave­ment is not an illness, and life for the bereaved will never be the same again. But given time and support, the process itself will enable the bereaved to reach a new balance.

For children, whose mainstay of support in grief is their parents, there is a particular challenge in a dying parent sup-porting their child, knowing that it is their own death that will precipitate the grieving that will change the child’s life. Preparation is key: painful and tragic though it is, this is an act of parental love that is bequeathed to the future that they themselves cannot enter.

The referral letter from the gynaecological cancer nurse specialist says the young woman has pain in her legs. It tells me that she has cancer of her cervix, now expanding inside her pelvis. Her kidneys are beginning to struggle to get urine to her bladder through the mass of cancer. I expect a wreck.

The girl who presents herself in tight jeans, high heels, impec­cable make-up and long, dark hair sweeping straight down to her waist is, therefore, something of a surprise. She is not just beautiful, she is stunning. I invite her into the clinic room and she walks with graceful elegance. It is only as she lowers herself into the armchair beside the desk, cautiously supporting her weight with a tight grip on its arms and wincing slightly as her hips flex, that there is any evidence of trouble. She recovers her composure quickly, flicks her hair over her shoulder, and inclines her head towards me with a smile that suggests I am invited to speak.

I begin, as always in the clinic, by introducing myself, aSuggested asking what she would like me to call her. She seems taken aback to be invited to call me by my first name, and says her name is Veronica, but I should call her Vronny. ‘Only my mum calls me Veronica,’ she smiles, ‘and that usually means I’m in trouble.’

My next clinic procedure with a new patient is to ask how they hope I may be able to help them. Vronny pauses to formulate a response. ‘Well, if I could move around a bit more easy’ – she uses the local dialect – ‘that would be a great start. The cancer nurse said you was good with pain. That’s why I said I’d come . . . to this’ – pause, swallow – ‘place.’

‘You mean a hospice?’ I ask, and she nods, holding her breath as tears spring to her eyes. ‘Was it a bit of a shock to get the appointment letter with the hospice name on?’ I ask, knowing that this has surprised other patients in the past. She nods, and I ask what she thinks hospices are for.

‘Well, you come out in a box, don’t you?’

‘I know a lot of people think that,’ I say, ‘but I’d be very surprised if people well enough to come to my clinic today need boxes to go home in.’ She smiles a thin, unenthusiastic smile.

I offer to explain what a hospice in England in the 1990s actually does, telling her I think it will be less worrying than she seems to expect. She agrees with an anxious ‘OK . . .’

‘You told me you have a cancer nurse, so I know you know about your cancer,’ I begin. ‘We see people with lots of different illnesses, not only cancer.’ She looks up, surprised. ‘The patients we see all have symptoms that are troubling them, caused by their illness. And they are usually serious illnesses. Some people who come here are never going to get completely better, some might actually die here while we’re trying to manage their symptoms. But more than half the people who come here for a week or two of care will go home and feel loads better, instead of leaving in a box. That’s not what people think though, is it?’

She shakes her head. Not what she was expecting. Surprises all round today, it seems.

I continue, ‘Our hospice is more like a specialist hospital ward, only instead of specialising in heart trouble or gynae problems, we specialise in symptom control. Physical symptoms like pain or breathing problems or sickness; and emotional problems that come with serious illnesses like worry, sadness, panic; or family problems, like everyone is taking over and the poor patient feels overwhelmed, or how to tell children that a parent is seriously ill.’

At this last statement she looks up quickly, and I realise that I may have touched a raw nerve. Something to talk about later perhaps, or on another day when she is ready.

‘So now you know a bit more about what we do, what do you think we may be able to help with? Because I’m completely out of boxes today, so I was intending to try to help you to feel a bit better.’

And now she smiles, a dazzling and open smile, and says, ‘Can you help with the pain in my legs?’

‘Tell me all about it, then.’ I pick up my pen to take notes as she talks, and I ask extra questions to make sure I have fully understood.

Vronny tells me about her pain and about its impact on her. She is thirty-two, and the mother of a seven-year-old daughter and a nine-year-old son. She lives with her partner Danny, who is the father of her daughter and also ‘Dad’ to her son. He works as a packer in a local mail-order company, where she was a clerk. The family-run business has been generous with time off for her treatment, and irregular hours for Danny so he can support her.

Her mum lives around the corner, and her two sisters are also nearby. ‘It’s exhausting keeping on top of things,’ she says, ‘but I need to keep the place clean so they won’t worry.’ The trouble is that she wants everything to look ‘normal’ so people won’t think she is ill. Normal includes a fastidiously tidy house (‘I can’t bear to see a speck of fluff on the carpet!’) and her unbelievably tight trousers – I really cannot imagine how she pours herself into them, but undoubtedly she looks both gorgeous and stylish.

She describes a pain that begins in her buttocks and shoots down both legs like electric shocks. It is worse when she bends her hips (as when she lowered herself to sit earlier), and it wakes her sometimes when she turns over in bed. She also has some pain in the lower part of her tummy, where the skin feels strangely tough.

I ask her to undress so I can take a look at her legs. She slides behind the modesty curtain, and I hear her puffing and exhaling with the effort of removing the tight trousers. By the time I pull back the curtain she is lying serenely on the examination couch under a blanket. With her permission, I pull back the blanket to examine her. Chest is clear, heart sounds fine, but the skin over her tummy is imprinted by the shape of the seams and zipper of her trousers, showing me that there is fluid trapped in the skin there, now moulded to the contours of her clothes.

And then we inspect her legs together. The skin is shiny and tight, stretched over the fluid that is trapped in her legs by the pressure of tumour squashing the veins in her pelvis. The muscle power in her legs is normal – I test this by asking her to resist my attempts to bend or straighten each joint, which results in much laughter, particularly when I check her reflexes with my little tendon hammer. But the sensation in her legs is not normal. In the areas where she feels the shooting pains the skin is less sensitive, and she cannot discern the difference between a sharp point and a cotton bud when her eyes are closed.

Pulling the blanket back over her, for warmth and modesty, I observe her anxious face as she awaits my verdict.

‘There’s nothing we weren’t expecting, Vronny. Do you want to get dressed again before we talk?’

‘Can you do anything to stop my pain?’

‘I think we can help. Do you want a hand to get dressed, and then we can discuss a plan to try to make you feel more comfortable.’

‘I’ll manage, thanks,’ she dismisses my offer briskly, and I leave her behind the curtain. While I write up my notes I hear her struggling to get back into those trousers.

Once Vronny has gingerly reperched herself on the armchair, we discuss the pain in more detail. Pain that is felt in areas where the skin sensation is abnormal is usually due to nerve damage. There are specific treatments that work better than the usual painkillers for nerve pain, and I suggest that she tries one of these. I’ll make the recommendation to her GP, who will issue the prescription. She agrees to give it a go.

And then I ask about the trousers. I wonder whether the pres­sure on the nerves in her pelvis might ease if she wore something looser. Somewhere deep inside Vronny, a dam bursts. She looks straight at me, blinking away the tears that are brimming in her eyes, and takes a deep, shuddering breath. She opens her mouth to speak, but instead emits a hollow, howling sob that shakes her whole body. Then she is convulsed by sobbing, wringing her hands and rocking on the chair. Sitting so close that our knees are almost touching, I silently hand her tissue after tissue for what feels like an eternity, until the wave has passed. She blows her nose and looks at me, murmuring, ‘Sorry . . .’

‘Do you think you’ll be able to talk about what just happened?’ I ask gently. I know that the thoughts that trouble us most, our deepest fears and darkest dreads, are usually suppressed and buried, to allow us to get on with daily life. It is only when they break the surface that they trigger our emotional responses. Vronny will be more able to identify those dreadful thoughts now, while her distress is still palpable. But it’s a big ask, and she may wish to bury it all back in the darkness.

‘I dunno,’ is her first response, followed by, ‘I’d always thought that if I ever started crying about all this, then I’d never be able to stop . . .’ She sniffs again, and stares at the crumpled, damp tissue in her hand. Another sob judders its way out, but it is gentler now. She lifts her chin resolutely and says, ‘This is who I am. This is how I look. If I can’t look like this . . .’ she indicates the trousers and her voice wobbles, but she pushes on, ‘then I won’t feel like me.’

This is a deep idea, but experience tells me that it may not be the whole of the issue. I invite her to consider what not feeling like herself would mean. It’s a hard question, and she furrows her brow as she thinks it through.

‘I feel as though I might just disappear. Just stop trying. I might just let the house be a tip, and wear fat pants, and not bother any more. If I let one thing change, then I might lose control of everything.’ She gulps and takes a deep breath, but she is now so busy thinking about her thoughts that she is no longer awash with emotion. Here is an important truth in action: by being able to sit with the deepest anguish and not shut it down, it is possible to enable people to explore their most distressing thoughts, process them, and even find more helpful ways to deal with them.

‘Losing control of everything sounds horrible,’ I agree. ‘What exactly would that mean for you?’ She is now calm and very focused. After a thoughtful pause she says in a whisper, ‘Dying.’

‘Vronny, can you bear to tell me what’s in your mind when you think about dying?’ I ask, passing her a fresh tissue as a sign of solidarity. Taking the tissue, she fixes me with troubled eyes, and says, ‘There’s no one to tell my daughter about periods,’ before dissolving into gentle tears that drip onto her lap while she sits as still as a statue. A weeping Madonna.

‘I’m deserting them,’ she whispers, as though she can hardly bear to hear the words said aloud.

We sit in silence. I never get used to the variety of deeply personal agonies that the idea of dying can trigger. Vronny’s chil­dren are a little older than my own. I know that the pain I am feeling is partly my own, projecting myself into her predicament and considering the loss of this precious maternal task.

I had anticipated a simple, one-appointment pain consultation in my out-patient clinic. It could have gone that way, if I had not asked about those trousers. But now I understand that Vronny’s distress is not really about the physical pain. She is a woman alone, trying to hold the unravelling threads of her very existence together as her disease progresses. There is work for her to do, and doing it well will allow her children to enter their lives without her in a better-prepared way. She sees herself as the guardian of their happiness, and she is. Their bereavement preparation will be her last act of love for them.

‘How much of the time do you spend having these terribly sad thoughts?’ I ask. She tells me that she is sad almost all day, every day, and that aggressive vacuum-cleaning allows her to act out her rage at the unfairness of dying so young.

‘That gives me a great mental picture of you with your vacuum,’ I say. ‘Do you wear body armour?’

She laughs. ‘Yeah, I think I scare the neighbours!’

Her composure has returned. Now I can discuss where we might go next in helping her. Using a series of questions to help her notice how her strongest emotions are associated with thoughts and images in her mind that she finds almost intolerably distressing, I enable her to consider the possibility of having some help to process that distress, and to devise some plans for how she will cope emotionally as her disease progresses. I explain that, as well as this medical clinic, I also run a clinic dedicated to helping people with this kind of distress, using cognitive behaviour therapy.

‘It’s exactly what we just did,’ I say. ‘You can learn how to find the really upsetting thoughts, and then deal with them. For example, who told you about periods?’

‘My mum. It was terrible. She was so embarrassed. I don’t want that for Katy.’

‘So how would you choose someone who would do it better?’

She considers, and then says, ‘Katy loves my sisters. And her best friend’s mum is lovely too. Katy likes sleepovers there, and she stayed with them when I was in hospital.’

‘So, of those three, who would you choose? And who do you think Katy would choose?’

‘I’ll think about it . . . Silly, innit? There was such an obvious answer, and I just didn’t see it,’ she muses. I point out that being really upset can get in the way of thinking clearly – which is exactly what CBT is designed to help with.

Over the next three months, Vronny and I met for an hour’s CBT session most weeks. She learned to notice the way, when she was feeling sad or scared or angry, there was always some thought in her mind driving the emotion. She called them her ‘pop-ups’. Many of her pop-ups were thoughts about keeping things ‘normal’, yet she did allow herself to buy a larger pair of jeans, and decided to buy a soft, smart pyjama suit for daytime wear at home. (‘Elasticated waist! Like an old lady! At my age!’)

In CBT, we looked at the thoughts and behaviours she used to keep her life on the rails, and tested different ways of doing things. We noticed that she rebuffed all offers of help, but was exhausted by her daily cleaning and vacuuming schedule by the time her children came home from school. She tried the ‘experi­ment’ of taking up her sister’s offer of calling round to help for an hour each morning, and found that she appreciated the compan­ionship, the help with vacuuming the stairs, and that her whole life did not unwind as predicted. They shared memories of their ‘sex education’ talks with their mum over a particularly hilarious tea break, and Vronny asked her sister to do the honours for Katy ‘when the time seems right’.

‘We had a little cry then,’ she confided to me, ‘but it was a good cry.’

Early on in CBT, Vronny identified the need to prepare Katy and her brother Ben for her death. This led to another ferocious bout of weeping, as she faced and described the haunting picture in her mind of her cherished children, alone and distressed in a school playground, with no one to turn to. This image, she admitted, was often in her mind, and was certainly among her thoughts on the day we first met.

‘What would help them most?’ was my initial question, and Vronny easily named several strategies that might help, starting with telling their headmistress about what was happening to Vronny, and asking their teachers to be vigilant for any distress at school; explaining to the children that Mummy is still not well, and she might sometimes be too tired to talk much, but she will always love them; and marrying Danny, so he can be named Ben’s legal guardian after her death. ‘He keeps asking me,’ she said, ‘but I feel too fat and heavy to be a proper bride.’

The most daunting task Vronny set herself, though, was the preparation of memory materials for Katy and Ben. She had a family photograph collection, contained in three huge biscuit tins, but when she tried to sort through it and choose which photos she would write short notes about, so that Ben and Katy could have her memories of those occasions when she was no longer there to ask about them, she felt overwhelmed.

‘So I knew what to do,’ she told me in one CBT session. ‘Since I come here to think about the upsetting stuff anyway, I decided we could do that here too.’ She opened her shopping bag and produced two tins of photographs. ‘I’ve sorted them into a tin for Katy and a tin for Ben, but I want to put them in albums, and write about where we were and what was happening then, and what I can remember – like I would if I was talking to them when they’re bigger. Also,’ she added shyly, ‘I’m not a good speller. I thought you could help with that too.’

My heart sank. I have spent my professional life with people facing death, and I have self-protection strategies to deal with that, but my discomfort zone is bereavement. I avoid bereavement preparation work – I find it simply too heart-rending. But Vronny was not willing to have any other ‘sad’ sessions, even with a highly skilled children’s bereavement specialist. So, with me taking advice (and support) from our bereavement specialist, Vronny and I extended our hour a week to include twenty minutes’ ‘children time’. It was both intriguing and terrible to hear her describing family memories, and help her to capture those lost happy times on notes, written in her round, childlike hand and attached to each photograph. She wrote letters for their eighteenth and twenty-first birthdays. Together we assembled two time capsules in those biscuit tins, to entrust into her children’s uncertain future without her.

‘I’m going to marry Danny, by the way,’ she dropped in coolly. She was trying to sound casual, but her grin was as wide as the sky.

She was a beautiful bride, of course. Beaming and radiant, resting on Danny’s arm, holding Katy’s hand and kissing Ben’s head in the photograph she chose for both their collections.

As a wedding present, I gave her two big photograph albums, one in a pretty butterfly design and the other decorated in the colours of Ben’s favourite football team. She knew what they were for.

I wonder where they are now.

Contemplation of one’s own death is a complex affair. Some people fear the approach of dying, others fear the moment of death, a few long to get it over with. Some fear ceasing to exist, others fear continuing to exist in an unimaginable way, and others hope for a promised paradise. Some experience the sadness of anticipated separation from loved ones, and others feel jealous of those who will survive without them. It is simply impossible to guess what another person means when they are considering their mortality. In palliative care, we have learned to make no assumptions: we ask. The interesting thing is that people are able and willing to answer, and when they share that burden they often discover, from within themselves, new insights and ideas that help them to cope. 

- 'With the End in Mind: Dying, death and wisdom in an age of denial', by Kathryn Mannix, is published by William Collins, £16.99. It is longlisted for the Wellcome Book Prize.

Photo: Craig Fordham