With the End in Mind

by Kathryn Mannix

  And so we hurtled the fifteen miles to town and the vet, with my son murmuring encouragement to the cat. ‘You’re a great cat, Oskar. You’re OK. We’re here. I’m by you, don’t worry. We’ll look after you. You’re such a great cat.’

  I was able to observe changes in the cat’s apparent consciousness; he seemed to drift off, and would then suddenly mew and waken again. I realised that this is a pattern I see every day at work–the cat might die during the journey, and my son was unprepared.

  ‘Can you see how comfortable he gets as you talk to him?’ I said. ‘He’s drifting off, isn’t he? And can you hear how his breathing is changing too? It’s gentler now, isn’t it, and slower than it was before? That tells us that he’s very comfortable and relaxed, but also very poorly. He must be so glad that you’re there to talk to him.’

  The boy’s eyes fill with tears, his voice wobbles, but he carries on his litany of praise. ‘You are the best hunter. You catch all those mice, and you love to chase the birds, and even the rabbits. You are so brave. You are such a great cat, Osk.’ And then, ‘Stay with us, Oskar. Don’t die. The vet will help you. We’re nearly there…’

  The childminder has phoned the vet. They are expecting us, and after one glance at the cat’s back they tell me to take him to the animal hospital nearby. They will call and let them know. We get back in the car and drive, very gently now, down the winding road towards the hospital. But the script has changed. From the back seat I hear, ‘You’re the best cat, Oskar, and I love you. Thank you for being my cat. You have been such a great cat, Osk. We all love you. We could never have had a better cat than you, Osk…’ Such a slight change, but that is the past tense. The boy knows that this is goodbye.

  Oskar survived to reach the animal hospital, but died later that day. We brought him home. He is helping the plants to grow in our garden, on his hunting grounds.

  Arrival at Destination

  My godmother, my mum’s sister, is dying. She has developed a brain tumour in her eighties. She is having difficulty finding the right words, but understands everything that is said to her. She has declined radiotherapy (‘It will only add feathers,’ in her opinion, which translates to mean longer life without quality if her mind is impaired), and accepts that her life expectancy is short. She is worried about who will look after her semi-invalid husband (‘I am the fat as a diddle one here!’), but is otherwise at peace.

  She managed her birthday at home with a lot of support from family and neighbours, but has had a series of seizures and has been admitted to the huge, indescribably ugly hospital in her city. She is on a medical ward in a side room, and the blinds rattle in the draught from the badly sealed windows. The warmth of the staff, though, makes up for what their building lacks. The hospital palliative care team has been in, and the ward team has been told to expect ‘my nephew, she’s a proper specialist in all this stuff’. Despite this mixed-gender advertisement of my expertise, they are welcoming and kind. ‘Your auntie’s lovely,’ they tell me, ‘and she’s dead proud of you!’ Then they realise that the D-word has been used, and withdraw, pink-cheeked.

  I have travelled by train to the hospital with my daughter, now seventeen. My parents are on their way by car, and my son has picked us up at the station because this is his university town. It’s a long time since we buried that fish (and also eventually the cat, several hamsters, the other fish, and the rabbits that were decapitated by our local fox), and he is now a tall, muscular rugby forward, a master of revels, his voice still loud with the joy of living. His sister is gentle and quiet, more reserved, more inclined to ponder first and speak later, to intuit others’ feelings and to quietly take a lonely hand in hers.

  We enter Auntie’s room. She is tiny and pale in a big hospital bed. She is wearing a hospital gown, and the yellow trim jars with her complexion. One of my cousins is in a chair beside the window. He looks up with a face of desperation; he doesn’t know how to be, yet he has travelled half a day to sit here, to be available, to show his love. Auntie seems to be sleeping, but my gentle giant booms, ‘Hello, Auntie! I like your fancy pyjamas!’ and she opens one eye and smiles, recognising the people in the room one by one, beams to see us all, then fills up with tears, declares, ‘You’ve all come such a long day!’ and starts to cry. My parents arrive and greet the grandchildren, the nephew from afar, and then Auntie, whom they have been visiting daily. Her face droops on the right and she cannot move her right arm. I notice that my cousin is sitting on the right-hand side of her bed–she has probably not been able to see him. The brain tumour is slowly removing her ability to see, feel, notice, move or interact with the right-hand side both of her body and of her world.

  We all find chairs and sit down. I bring my cousin around to Auntie’s left, and she is delighted to see him. I have a tube of hand cream in my pocket; I take Auntie’s clawed right hand and ask my daughter to take her left hand, and together we massage the cream into her skin. She smiles and says, ‘That has a nice taste.’ Sporadic sickroom conversation spills around the room. My parents look tired. My daughter is being brave, but sees the grief in her relatives’ faces. ‘Come on,’ I say to my offspring, ‘let’s see if we can find a cup of tea for everyone.’ We take to the concrete corridors, following signs for the café. The gentle giant leads the way (he is a regular in A&E here, through his frequent rugby accidents) while his sister and I follow. She is pale, quiet and tense.

  ‘I am so proud of you two,’ I say as we search for the café. ‘You’re doing everything so well. You’ve made conversation, you’ve been kind to your grandparents, you’ve been so gentle and loving to Auntie.’

  ‘Well, Mum,’ says the gentle giant, ‘you and Dad have spent a lifetime preparing us for this. No one else at school ever talked about death. It was just a Thing in our house. And now look–it’s OK. We know what to expect. We don’t feel frightened. We can do it. This is what you wanted for us, not to be afraid.’

  We reach the café. I hug them both. I am not sure that my Big Man speaks for both of them: my gorgeous girl looks tearful and anxious. But that is normal too. Because we can do this. We can walk with Auntie for the last few days of her life, loving her and measuring her important contribution to our lives, knowing what to expect as she sleeps more and wakes less, knowing that she will become less able to talk, knowing that the end will be gentle.

  And when it comes, in fact several weeks later, it is gentle. She is ready. And so are we.

  By being open and honest, we hope that we have made it safe for our children to ask their questions, voice their anxieties, and recognise their sadness at the finality of death. It hasn’t made them maudlin; it hasn’t made them afraid of taking risks and seizing life’s opportunities; they seem to have survived our efforts intact.

  Every family will find its own way to deal with the Facts of Life; we need to remember that the Facts of Death are just as important to acknowledge and discuss.

  The Sound of Silence

  It can be daunting for a family to discuss bad news. Sometimes, if the bad news is broken only to the patient, or only to a family member, that individual can find themself with the burden of knowing a truth they dare not speak. This can lead to a whole conspiracy of silence that isolates people from each other at the very time they need to draw upon each other’s strength and support. It is possible to be lonely despite being surrounded by a loving family, as each person guards their secret knowledge for the love and protection of another.

  When clinicians break bad news, they would do well to ensure that the right people are present to hear it, to reflect upon it and to support each other in dealing with it. This allows families to share their sadness or worry, and avoids locking anyone away in the Cage of Lonely Secrets. Such difficult conversations can be a challenge in a busy clinic or on a ward round, yet not to do so is a great disservice to the patient and their extended support network–as I had previously found out in an unforgettably shocking way.

  It’s a bright spring morning. I
am knocking on the front door of a terraced house in a coalmining community where the mine closed decades ago and the young people now head for the city at the first opportunity. The older generations, parents and grandparents, are still a tight-knit community, and the local GP has asked for advice on managing the abdominal symptoms of a woman with advanced ovarian cancer now beyond rescue by the available treatments. She lives with her husband of fifty years in the house they moved into when he was a proud miner and she was his perfect bride.

  I wait on the doorstep, and watch a butterfly flit through the minute but beautifully kept front garden. A lawn the size of a large paving stone is surrounded by mature shrubs with swelling flower buds, and bluebells, white narcissi and the brave points of tulip bulbs head for daylight beneath them. The fading daffodils have been deadheaded and their leaves tied into curled knots. This is the work of a fastidious gardener.

  Through the frosted glass I see a figure approaching the front door, which cracks open to reveal an anxious face with a finger on his lips.

  ‘Are you from the hospice?’ he asks nervously, without opening the door enough to admit me. When I begin to say yes, he shushes me, vibrating his forefinger against his lips, and says, ‘She doesn’t know! Come in quietly.’ Opening the door wide, he ushers me into a tiny, tidy front parlour overlooking the lovely garden. There are ornaments and knick-knacks in wondrous abundance: china figurines, exotic seashells, clay models made by children, porcelain animals, and an assortment of model miners and mining equipment carved from coal. The collection flows across a sideboard, fills a tall corner cabinet, garnishes a Victorian mantelshelf and cascades along the curved bay of the window ledge, all spotless and shining, obviously polished and dusted with obsessive regularity. Apart from us, there is no one in the room. Where is my patient?

  The man gestures me to sit down. He remains standing, shifting anxiously from foot to foot as he says, ‘You mustn’t tell her. She couldn’t cope with bad news. Trust me, I know her.’

  ‘Tell her what?’ I don’t know whether he means don’t mention hospices, or don’t mention her diagnosis.

  ‘She doesn’t know it’s cancer. She thinks it’s just fluid in her tummy, and that the doctors are looking for a treatment,’ he whispers urgently, glancing sideways to check that he has closed the door. ‘It would kill her if she knew the truth.’

  Oh dear. This is awkward. He does know her best, yet when families try to ‘protect’ a beloved person, it almost always backfires. I have seen it many times. I know I am his guest, and in his house I must respect the house rules. I also know that he is not my patient, and that I am here to do the best I can for his wife. I will have to tread a careful, respectful and kind line, to ascertain what is best for her without frightening him so much that he asks me to leave or diverts the conversation.

  I ask what he would like me to call him. Mr Arthurs? He relaxes a little and says, ‘Call me Joe. And she’s Nelly. Short for Eleanor.’

  ‘Thanks, Joe. I’m Dr Mannix, but most people call me Kathryn.’

  Next, I tell him that I am glad that he has warned me. ‘You do know Nelly best, and I know that you’re working very hard to look after her and to stop her from worrying. How long have you been married?’

  He tells me that they were childhood sweethearts, and that they celebrated fifty years of marriage a few months ago. He points to a china plate mounted on the wall, with a picture of Queen Elizabeth II on it. ‘That’s our golden wedding present from the family. We’re great admirers of the Queen,’ he says proudly. ‘She keeps very high standards. Some people don’t value standards any more.’

  ‘Joe, I’d really like to meet Nelly and see how I can help her. Please come with me, so you can check that I’m saying the right things.’ He sits on the arm of a chair, looking less tense. ‘I promise I’ll only answer the questions she asks me,’ I continue, ‘but I won’t promise to lie to her. If she asks me for the truth, I’ll have to tell her as much as I think she can manage. Can you trust me?’

  Joe avoids my eye, and rubs imaginary dust off the back of his chair.

  ‘No cancer talk?’ he asks.

  ‘Not unless Nelly brings it up herself,’ I say, and with this he appears content. He conducts me out of the tidy room and up the narrow stairs to a bedroom above the parlour. Here, amidst floral bedspreads and scatter cushions, propped up on pillows, is Nelly, the light of Joe’s life.

  ‘This is a different doctor, Nelly,’ he tells her, while looking directly at me to give me the clear message, ‘Watch your step!’

  Nelly holds out a hand to shake mine, then indicates a chair in the window bay, beside the bed, where I should sit. Joe hovers in the doorway, doing his anxious soft-shoe shuffle again. Nelly instructs him to fetch a stool from the bathroom and sit down, for heaven’s sake. He grunts and leaves us to retrieve the stool, while I introduce myself. Joe shoots back in like a rocket to check that I am not saying any forbidden words like ‘hospice’, ‘cancer’ or ‘dying’. I explain that I am a symptom management specialist, and that Nelly’s GP has asked for my advice about her swollen tummy. Joe breathes a silent sigh of relief and stations himself on his stool on Nelly’s side of the bed. They gaze towards me across a gulf of flowery counterpane.

  Through the window beside me I can see a wonderful vista of the local valley, complete with the gauzy green veil of spring unfurling across the woodland along the river. The old pit-head sticks its head above the trees. Nelly is sitting queen-like amongst her pillows, her wasted frame splinted above a pot belly of enormous size. It must be very uncomfortable. Beside her, Joe is perched on his tall stool like a meerkat on guard duty, watchful eyes latched on my face, hand clasping Nelly’s.

  ‘Nelly, you’ve got a fantastic view from your bed,’ I start in a place that won’t upset Joe. ‘Are you feeling well enough to enjoy it?’

  Nelly looks towards the window. ‘It’s like watching a film about the seasons,’ she smiles. ‘I’ve seen those trees creep up the pit-head, and before the trees I could watch for Joe walking home from work up the hill. Every minute it’s different–the light, the clouds, the colours. I love watching it. Even when I feel so sick…’

  ‘Tell me about the sickness,’ I invite her, and Joe’s neck tenses.

  Nelly describes what I am expecting. Her tummy is so swollen she can hardly eat, yet she still has ‘stuff inside’ that comes up as vomit, in surprising volumes, a couple of times a day. She has a constant sense of nausea. Her bowels don’t seem to be working. Her legs are getting wobbly. ‘Joe is very patient,’ she says, ‘and he helps me to walk to the bathroom if I need the toilet. But it’s getting tough. I don’t seem to have any energy these days…’

  ‘Well, you don’t eat anything! What do you expect?’ Joe interjects sharply. She looks at him calmly and says, ‘It’s too much of a struggle, love. I do try. I ate that ice cream this morning.’

  ‘What bothers you most, Nelly?’ I ask her. ‘The nausea? The being sick? The lack of energy? Or something else?’ Joe glares at me across the bed.

  Nelly pauses before answering. ‘It’s a mixture of things, really. It’s hard to concentrate on anything when you feel sick…’ I absolutely agree with this. Pain is unpleasant, but it can be pushed from immediate consciousness by sufficiently distracting diversions. But nausea is an overwhelming, all-pervasive, enervating and soul-sapping experience.

  ‘Mainly it’s the weakness that worries me,’ she continues, ‘because it seems to be getting worse. And Joe wants me to eat, and he works so hard to make me lovely snacks, and I hate to see him so sad and disappointed when I just can’t face them…’ She looks at him sadly, and squeezes his hand. ‘The worst part is letting Joe down.’

  Joe leans forward to protest, but she holds up her other hand for silence, then says, ‘Joe, did you offer the doctor a cup of tea?’ He shakes his head, and she demands that he do so immediately, where are his manners? A reluctant Joe departs the room, pointing a finger at me and then moving it to his lips
out of Nelly’s sight. I smile at him, reassuringly I hope, and we hear him lumbering down the stairs.

  ‘What’s your main worry about Joe, Nelly?’ I ask once the coast is clear. I am not at all surprised by her answer.

  ‘He’s just not ready to admit how bad things are,’ she says. ‘And I can’t imagine how he’ll manage without me.’

  ‘Without you…?’

  She looks at me sharply and says, ‘You must know it’s cancer. They told me months ago, at the hospital. But Joe doesn’t know, and I don’t know how to tell him. He’s a big, brave miner on the outside, but inside he’s a soft lad who can’t bear anyone to be sad.’

  From downstairs we hear a whistle as the kettle comes to the boil. I guess we have a couple of minutes before Joe gets back.

  ‘Do you usually manage big problems all on your own, Nelly? Or in the past, have you and Joe shared things?’ I won’t try to challenge a preferred way of life for this couple, but I have a sense that they are usually a partnership.

  ‘Ah, we’re a great team. Brought up five children together’–her eyes flick to the pit-head beyond the window–‘and weathered many a storm. He may be a softie, but together we’re ready for anything.’

  ‘Except this, Nelly?’ I ask as gently as I can.

  She drops her gaze to her tummy, then fishes in her sleeve and produces a tissue. She wipes her eyes and says, ‘It will break his heart. I know I need to tell him. But I don’t know how.’

  A clinking of china on the stairs heralds Joe’s reappearance. He places the tray on the bathroom stool, looks at Nelly, sees her tears and flushes red with fury as he turns to me and demands, ‘Are you upsetting my wife?’

  ‘No, Joe, she’s not,’ interrupts Nelly, firmly yet tenderly. ‘Now pour the tea, there’s a love.’