With the End in Mind

by Kathryn Mannix

  We don’t want Walter’s nausea to return, so Deidre sets up the syringe-driver and tucks the little pump under Walter’s pillow. Then she has to leave for more house calls. As I am seeing her out, she says, ‘Well, I didn’t see that coming.’ I agree that it is a sudden change, yet the signs were there over the last few weeks, and Molly is not really surprised.

  Back on the floor beside Sweep, I can feel my legs going stiff. Every so often Walter takes a deep, snoring breath, and his breathing becomes deep and fast for a while, then gradually slower and quieter. I point this pattern out to the family. It is called ‘Cheyne-Stokes’ pattern breathing, and it signifies deep unconsciousness. Towards the end of each cycle of fast-to-slow breathing, there are long gaps between Walter’s breaths. I explain that eventually, during this very gentle phase of his breathing cycle, he will simply breathe out, and then not take another breath. No panic, no rush of pain, nothing spectacular. Only a gentle ending of the cycle of breathing.

  Sweep keeps putting his head out from under the bed and gazing up at Walter, and at the faces around him. I can feel cramp in my calf, and excuse myself to go to the kitchen and make the next round of drinks, and to find some water for Sweep. I hadn’t intended to be here so long, but I know I cannot leave yet. I ring my team to explain why I will be late back, and am just filling the teapot when Pauline comes into the kitchen and says, ‘I think he’s gone.’

  And Walter has indeed stopped breathing. Still and yellow, he lies on his bank of pillows with his head tilted towards his family, still grasping Molly’s hand in his. Molly is dry-eyed. Walter’s daughters hold each other and weep. Sweep is crying beneath the bed.

  ‘You have helped him to feel peaceful and safe,’ I tell them, ‘and he has died just the way he hoped to. You are a great team.’ Inviting the daughters to come closer, and to touch or kiss Walter if they want to, Molly releases her hand from Walter’s vacant grasp and takes my hand instead. She walks me to the front window, where she sits down and says, ‘I can manage things from here. We’ll be all right.’ And I know that she will guide and support these two younger women as they say goodbye to their dad. The gift of witnessing a gentle dying has been passed to the next generation.

  Stepping into the bright sunshine and the noise of playing children is shocking in its contrast to the quiet house. Life is going on all around us as this enormous event unfolds on the other side of the window. I call the GP to tell her what has taken place, leave a message for Deidre and the community palliative care team, and drive back to the hospital.

  What a privilege, to be able to observe families as they are forged in a furnace of love and belonging, so often with its fiercest heat at the ebbing of a life.

  Pause for Thought: Looking Beyond the Now

  Stepping back to find perspective is a challenge. It requires the insight to acknowledge that there may be another way to look at a situation, and the humility to be prepared to examine our own view, and to change our mind if necessary. It may be easier to step back if we approach life with an attitude of curiosity rather than certainty, intrigued by what we may discover for and about ourselves. Sanjeev’s young doctor was certain about what he needed; his nurse was wise enough to step back and see the bigger picture.

  Stepping back is not easy, but it is always illuminating. In his essay ‘My Own Life’, written when he knew he was dying, the great medical writer Dr Oliver Sacks describes becoming able to see his life ‘as from a great altitude, as a sort of landscape, with a deepening sense of the connection of all its parts’. He goes on to say that he feels ‘a sudden clear focus and perspective’. This is the great gift that rewards stepping back–to look anew at what feels familiar and already thoroughly known.

  The stories in this section of the book have included a variety of challenges to reinterpret a world that already seemed thoroughly known. Working with people whose minds may be confused, we can step back and hear their concerns, hopes and wishes expressed through the muddle. Working with people whose plight may seem unbearable to us, we can step back and find that their focus is still clear and worthwhile to them. Around a deathbed, we can see a group of people sensing, discovering and affirming the connection between them, or the feeling of kinship that is forged between strangers at a hospital or hospice, brought together in the shared and deeply emotional experiences at the end of life.

  Because we will all die, many of us have developed a view about whether or not we have a right to choose when to end our lives. These views are based on diverse perspectives that include the right to personal autonomy, the duty to protect the vulnerable, the principle of equality before the law, the dignity of human life, the fragility of the human condition, and personal beliefs based on humanitarianism, on the great faiths, on utilitarianism, on virtue. There is no doubt that campaigners on both sides of the debate are motivated by compassion, conviction and principle. And yet, the discussion is so often polarised, noisy and alarming, and seems to bear little relation to what actually happens to people as they approach the last stages of living.

  Whatever your own view, it is likely to enrich your perspective if you listen and carefully consider the opinion of those whose view is different. Working in the reality of day-to-day dying, many of us in palliative care roles are exasperated by the trenchant, black-and-white opinions of the campaigners for either view, when we know that the reality is neither white nor black, but a completely individual, ever-shifting shade of grey for each person. The missing perspective on both sides of the debate is the reality of human dying, the unexpectedly gentle progression towards death that most of us will experience, whatever the trials of the preceding terminal illness.

  Looking beyond the immediate situation offers us all a richer perspective, and enables the dying to focus on what is most important to them, whatever other ideas the rest of us might have.

  Legacy

  What a laden word. Legacy is what we leave behind in the world, for good or ill. It may be a deliberate and carefully curated collection of items; it may be the help or harm we have done as we interacted with others through our lifetime. The dying are often very aware of their legacy, and keen to ensure that their life ends in a way that does least harm to those they love. Some people work hard to provide memorabilia for others; some take altruistic action by fund-raising in the hope of relieving unknown others of the burden of disease; some wish to generate opportunities to create special ‘last memories’. Whatever actions they may take with the deliberate intention of shaping their legacy, they may well be unaware of the multiple, nuanced effects that they have already had on other people’s lives.

  Something Unpredictable

  Making a difference to the world seems to be an important life quest for many people, yet recognising the difference that we have made to the lives we have touched can be difficult for us. It is easy to dismiss our own contribution as insignificant, to compare ourselves with our peers and find ourselves wanting. Sometimes, the role of a psychotherapist is to help someone to re-evaluate their worth and their meaning, and to discover their true colours, shining through the humdrum of everyday life, and already appreciated by everyone except themselves. That in itself is a therapeutic win, and can transform a person’s life.

  And then, sometimes, fate just opens a gate that allows the unimaginable to happen.

  ‘Be quiet! Dan’s on the telly!’ The family huddles towards the screen to watch a young man talking to a journalist on the news. Relaxed and smiling, he describes his interests: rock music, computer games, his dog. His expressive face, calm demeanour and articulate speech suggest he might be a young management trainee or a self-made businessman. The camera pans backwards; broad shoulders, like a sportsman’s, come into view, and then as the shot pans out further, the appearance of his motionless body sitting in an electric wheelchair changes the context entirely. Dan is discussing death. His own death, likely to be in his twenties. His preparations for dying. And in particular his Emergency Health Care Plan, which will set out h
is carefully considered wishes if he is unable to express them himself in a medical emergency. Dan is campaigning for widespread uptake of Advance Care Planning.

  The interviewer asks him to explain, and Dan outlines his medical history. He was born with the gene that causes Duchenne Muscular Dystrophy (DMD), a condition that has been weakening his muscles since childhood. First he could play football with his friends, then he could only stand and watch, then he could only get there in a wheelchair, and now he controls his electric wheelchair with the small amount of movement he still has in his hands. He expected that during his twenties his chest muscles would weaken, his breathing become less effective, his consciousness gradually dim, and his life would ebb away.

  But, by an additional twist of fate, Dan’s DMD came with an extra complication: it has affected his heart, and could cause an unpredictable change in his heart rhythm that would result in sudden death. No warning. When Dan’s heart condition was discovered, about eighteen months ago, he was offered an implanted defibrillator, a little electronic device to shock his heart back into action. Dan was poleaxed. He had accepted that he would die younger than his peers since he asked his mum when he was twelve, and she had the courage to answer him honestly. As his physical strength receded, he acclimatised to new ways of living in a steadily less able body, a body that would gradually take him to an early death. He got his brain around all that. But sudden death? At any moment, with no warning? That idea, quite understandably, boggled his mind.

  My cognitive therapy service is for people whose minds have been boggled by their serious and life-threatening illness, and that is how I met Dan, a year before this TV interview. He was referred by a mental health team. They too had had their minds boggled by the idea of trying to help a suicidal youth regain the will to live while he carried on dying from two fatal diseases.

  Flashback to our first meeting. Dan arrives at the hospice, where I hold the CBT clinic, with his parents. I watch him arrive, driving his wheelchair with confident ease, navigating corners and unfamiliar narrow doorways with languid skill. While I hold the door open, Dan manoeuvres into the therapy room and parks beside the desk. I offer the easy chair, but he can’t be bothered with the lifting, hoisting and effort involved. We sit facing each other, and I ask him how he hopes I may be able to help.

  He shrugs, and makes a multisyllabic noise that sounds like all the vowels of ‘I dunno…’ with matching facial expression–despair and challenge in one mooing word. He sits bolt upright in his impressive motorised chair, head bowed down. He is a tall, broad young man; with a different shuffle of his genes he might be a rugby player or a motorbiker. His red-blond hair curls at the neckline of his T-shirt. His perfect smooth skin, pale from living indoors, lies over muscles that no longer obey the commands from his brain. This condition only affects the muscles, so his sensation and thinking remain intact.

  Although his mind is trapped in a body that is progressively resisting his will, I sense that Dan remains capable of imposing that will by the use of his intellect. I want to understand, and to help. This can only happen, though, if he agrees to communicate with me. But there was a challenge in that inarticulate verbalisation, and I am both professionally and maternally familiar with the ability of young adults to impose their will by withdrawal of cooperation. Only Dan can decide whether I am acceptable as a member of his team.

  There is a silence. From his bowed-head position, Dan raises his eyes to look at my face. I gaze back. He looks down again.

  ‘Dan, did you agree to come here, or were you just brought along?’ I ask him.

  He looks up, shrugs, and tells me that he agreed to come.

  ‘So, can you tell me what you were expecting?’

  He shrugs and makes the ‘ayuo’ noise again. I perceive that we are on thin ice. Is he going to let me in?

  ‘You know Mr Purvis, who came to assess you at home, asked for this appointment for you?’ I ask, and he nods, eyes averted.

  ‘I think he wasn’t sure how best to help…’ I prompt him.

  A slow, impish smile spreads over Dan’s face. ‘You mean I scared the pants off him?’ he says. ‘He just didn’t know what to say to me.’

  ‘Were you trying to scare him?’

  ‘No. But it was funny listening to him trying to find a way to ask about things.’

  I can imagine the poor psychiatric nurse being put through the wringer by the young man with two killer diseases and a suicidal depression. When is a suicidal idea simply an acceptance of reality? I can also see that Dan has a finely developed, dark sense of the ridiculous, and I recognise that this will be our meeting ground.

  ‘So, Dan, you told him you want to be dead. How did he react?’ I want to understand where the line is between being a person who accepts a life-threatening condition, and being suicidal.

  Dan inclines his head sideways, fiddles with the joystick of his wheelchair, and tips himself back so that he is looking straight at me. ‘Well, he kind of wanted me not to want to be dead, but he knew I had a terminal illness, so I think he didn’t know what to say,’ he offers.

  I nod. ‘And when you say you want to be dead, do you mean you want your illness to finish you off, or do you mean you want to finish yourself off sooner?’

  His eyes open wide. He wasn’t expecting such a direct approach.

  ‘I don’t know how I could do it,’ he says. ‘But I wish I could think of something.’

  ‘Have you had any ideas?’

  ‘I thought of driving my wheelchair into a lake. But how would I get there? And the chair would probably stop if the battery got wet…’

  There is a silence. We share it. We are thinking, together, about Dan’s predicament.

  ‘No chance the battery would electrocute you first, I suppose?’ I ask provocatively, and he smiles.

  ‘Low voltage,’ he responds. ‘Health and safety…’ A crackle of humour flashes between us; a creeping rapport has begun.

  I observe his face as I ask my next question. He holds my gaze.

  ‘Dan, what do you enjoy?’

  Dan considers the question. He adjusts his sitting angle with his joystick. He furrows his brows as he thinks, then tells me that he used to love two particular computer games, in which he met his friends online and they competed or cooperated to solve quests. In one game he drove a car, in the other he had an avatar who could run, jump and fight–an able body, driven by Dan’s mind. He enjoyed the questing, the thinking, the collaboration, and the online conversations he had with his friends. Time used to pass without dragging.

  What was the best thing about it, I ask, and he can answer this without stopping to think. In his games he is the equal of his friends. He can compete, and he can win.

  On the basis of my (limited) understanding of Grand Theft Auto, and our shared appreciation of the ridiculous, I am signed up by Dan for a trial on his team. He is articulate (when not in ‘moo’ mode) and smart; he quickly reaches an understanding that managing depression is a ‘mind game’, and he is very good at getting to grips with it. On days when his mood is lower, he is more inclined to shrug and moo. When I imitate his mooing, though, he heaves a sigh, then cracks a grin, and we game on.

  We map his misery using a CBT formulation, and it looks like this:

  Over several weeks of regular CBT sessions, Dan and I discover lots of self-blaming thoughts that make him feel bad about himself. He believes he is a bad person, a selfish son, a critical brother, a poor friend. These are all common themes for people with depression. The depressed mind plays down positivity and eagerly embraces tiny examples of negativity, puffing them up into huge, undermining traps. It is like a malevolent spell cast by a mage in one of Dan’s computer games; he needs a ‘balanced mind’ amulet, to restore his awareness of the hidden positives which are his protection against the Dragon of Despair.

  He also resents the inheritance of a lethal gene, and the tipping point for his mood was the discovery of his additional heart problem. He has declined a defibri
llator, causing some consternation in the cardiology team, but his logic is that a sudden death from an abnormal heart rhythm would prevent him waiting to die slowly. Why would a suicidally depressed person want to prevent their own death? His reasoning is faultless.

  As part of his CBT, Dan experiments with activity levels at home and discovers that the more he does, the less unhappy he feels. This is the case for almost all depressed people. The challenge for Dan is to find ways of being busy when his voluntary movements are limited to minimal arm movement (he cannot lift the weight of his arms to scratch his own nose), movement of his neck and face, and enough hand movement to manage his electric wheelchair or Xbox controls. He rises to the challenge. Keeping a mood diary to log the effect of his efforts, he resumes internet gaming, he returns to his interest in rock music and even attends some gigs, he makes lists of his favourite music and then listens to it, he visits the cinema with his friend, he goes out for meals with his family, he notices when his mood is drifting downwards and gets busy, he pets his companion dog, and the family cat who sleeps all day in whichever room Dan is in; he even sings.

  As Dan’s mood lifts, we come back to the issue of control. He knows that his life expectancy is short–he is unlikely to see out his twenties, and the longer he lives, the weaker and more dependent he will become. He has phenomenal parental support: he lives as an autonomous adult in his adapted room where he controls the lighting, temperature and window blinds using his Xbox controller. He has help from his mum and a carer, a young man of his own age who has been a lifelong friend. His parents have managed to enable him to take risks that other families might not, like late nights out at a rock concert or cinema trips by wheelchair and public transport with pals.