With the End in Mind

by Kathryn Mannix

  This is a common situation. People who have never seen anyone die, who are not familiar with the process, can misinterpret what they see and hear. Usually this convinces them that their worst fears are coming to pass. Paddy can hear the throaty rattle of breath through fluids, and the deep, stertorous rumble of periodic breathing, and he thinks that his beloved brother is groaning.

  ‘You wouldn’t let a dog suffer like this!’ he shouts. ‘It’s disgraceful! Can’t you do something? Can’t you just put him out of his misery?’

  There is someone in this room who longs for his personal misery to end, but it’s not Brendan. Brendan is so deeply unconscious that he is neither coughing nor swallowing to clear the liquids pooling in the back of his throat. He is completely unaware of them. Meanwhile, Maureen sits quietly beside his bed, stroking his cheek and talking quietly into his ear about happy times, family holidays, their beloved boys, and telling him that they love him, they love him, they will remember him, they will be OK. Paddy’s distress, though, is palpable.

  I invite him to come and sit beside me in a vacant chair. He obliges reluctantly. I ask him what he thinks is going on, and he tells me that Brendan is struggling to speak, to express his pain. I ask him to listen with me–quietly, so we can really concentrate. The periodic breathing has moved on to a gentle panting phase; the bubbling rattle persists. I ask Paddy how he would feel if he had fluid in the back of his throat like Brendan has. Would he swallow? Cough? Splutter? ‘Of course I would. The tickle would be terrible.’

  ‘So look at Brendan,’ I say. ‘Look closely. He isn’t coughing, or gagging, or swallowing, is he?’ Paddy acknowledges this. ‘Brendan is so completely relaxed, so deeply unconscious, that he just doesn’t feel his throat at all. He has saliva in the back of his throat, and yet he isn’t trying to clear it away. And that tells me that he is deeply comatose.’

  Paddy looks back at Brendan. He watches closely. He is thinking. ‘Well, what about that groaning he was doing before?’ he asks suspiciously.

  ‘Ah, that noisy breathing…’ I begin, but Maureen interrupts and tells him, ‘That’s just deep breathing. It’s a normal noise. He sounds like that when he’s asleep at home sometimes. Although he won’t believe me…’ She smiles, and strokes Brendan’s face again.

  Maureen and I have rehearsed how she will explain the process of dying to the boys. She doesn’t want them to misunderstand what they might see. We have talked about the breathing changes: the cycle of deep, noisy breaths turning slower and shallower; the pauses; the restart of the cycle. She is watching Brendan follow this predicted course, and she is taking comfort from it.

  Maureen and Paddy stare at each other across the bed. Both are watching the same scene, yet where she is drawing comfort, he is perceiving distress.

  ‘Are you sure now, doctor?’ he asks me, and I tell him that this is normal dying, comfortable dying, gentle dying. He will see Brendan’s breathing change between fast and slow, shallow and deep. He will see it become more gentle. And then, after one of those exhalations, Brendan will simply not breathe in again. It may be so gentle that it’s hard to notice it has happened.

  Paddy’s eyes spill over with tears. ‘Can I stay until then?’ he asks Maureen.

  She reaches across the bed to take his hand, and says, ‘I’m counting on it, Paddy. For Brendan. For me. And for the boys.’

  I slide out quietly, to join Sonia in the land of handcuffs.

  Patricia is now surrounded by daughters and sons, partners and spouses, grandchildren. Despite the number of people in the room, it is quiet as everyone listens to her breathing. Sonia has joined the warders on chairs outside the room to make space. Sister is supplying trays of tea. Peace has broken out within the family. Sonia and I slip back into the room, where gentle conversation has taken over from the silence. Sonia indicates with her eyebrows that I should look at the patient. Patricia is resting back on her pillows. She looks very still and peaceful. Her eyes are closed, her mouth is open, her skin is white and her fingertips are turning purple. She is not breathing. And nobody has noticed.

  ‘Gosh, she looks peaceful,’ says Sonia. ‘She must be so glad to have you all here. What do you make of her breathing?’ They all look. They stare. Those closest to her touch her chest to test for movement. ‘She’s just stopped breathing, I think,’ says Sonia calmly. ‘She could hear that you were all here. She knew it was safe to go. You have all done a fantastic job.’

  A quiet sobbing emerges from Our Billy. He walks across the room, gets onto the bed beside Patricia, and buries his face in her neck. ‘Goodnight, Mam. I love you,’ he whispers. Sonia and I leave the room, inform the warders and the ward sister, and walk back to our office. Our work is finished here. Both families are ready, their mourning can start well, with a good understanding of the peaceful deaths they have just accompanied.

  ‘I love our job,’ I remark as we stand in the hospital lift with a newborn baby in a cot, proud parents and a midwife escort.

  ‘What do you do?’ asks the midwife, searching for our roles on our name badges.

  ‘Much the same as you,’ replies Sonia as the doors open and we walk out. We turn and smile at the new family and the midwife, whose shocked mouth describes a perfect O as the lift doors close.

  The thing is, Sonia is right. We are the deathwives. And it’s a privilege, every time.

  Beauty and the Beast

  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 supporting 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, and 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.
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br />   ‘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.