With the End in Mind

by Kathryn Mannix

  The community palliative care team calls me the following morning. Sanjeev continued to look for his tickets at home before agreeing to get into bed. His sons and Arya around him, he settled to sleep, with a weary Arya cuddled up beside him. And when she woke up, Sanjeev was no longer breathing.

  ‘He has arrived at his destination,’ Arya told their sons. ‘He will wait for us there.’

  The writing of a non-resuscitation order is an important interaction between patient, clinician and family. It is vital that the family is aware of the order, and of its reasons, so that dispute and distress are avoided should the patient collapse. Knowing that there are plans for appropriate treatment, and also plans to avoid inappropriate or unwanted escalation, is a central part of planning end-of-life care.

  With Love from Me to You

  Anticipating death can enable a dying person to consider their options, and to make clear plans for what care they would like as death approaches. For some people this might mean ‘Try as hard as possible to keep me alive,’ but for most (and especially for any who have seen a peaceful death) it will mean ‘Focus on my peace and comfort, not the length of survival.’ People can discuss where they would like to be cared for at the end of life: this may be at home, or at the home of a dear one. Some may require the additional resources of a care home or hospice setting. Most people would prefer not to die in hospital, yet without a plan for ‘what to do in an emergency’, many find themselves bounced into hospital against their preference.

  People who are found to be dying despite the best efforts of a hospital admission can only express a choice if the hospital team is clear about their outlook. Making plans ahead of time requires the sick person, their dear ones, and their medical advisers to have the courage (and the skill, for professionals) to have honest, clear conversations about what it is, and what it is not, possible to offer. Only then can a dying person and their dear ones make a well-informed choice.

  It’s late morning when a GP calls me from a patient’s house. She has been there for an hour, and over that time the elderly patient has looked progressively less well. He has a long-standing liver condition, is known to be approaching the end of his life, and he has an Emergency Health Care Plan that makes it clear that his priority is comfort, not heroic efforts to save his life. Today he has overwhelming nausea that prevents him lying down. Can I make any suggestions for his nausea? We discuss some medical details, I offer some advice, and tell the GP that I can get there in twenty minutes.

  I struggle to park at the patient’s house: it is in a quiet suburb built without driveways or garages, and parked cars are crowded along the roadside. It is summer, and children are playing in the narrow, quiet street–skipping, cycling, and a game that involves chalked patterns on the road and a lot of laughter. The porch door is open, and inside, the front door is ajar. I knock and call, ‘Hello! Dr Mannix here. Please may I come in?’

  A tear-stained woman in incongruously cartoonish pyjamas pulls the door wide. ‘Thanks for coming so quickly,’ she says. ‘Sorry about the PJs…’

  Along the short hallway I can see into the kitchen, where Deidre, a local district nursing sister beloved by the palliative care team for her kind, no-nonsense approach, spots me and shouts, ‘Good! Come here!’ I obey. Everyone always does.

  Deidre summarises in a low voice what has been happening to the patient, Walter, who is well known to her team of nurses. She tells me he is on his bed in the living room, where I will also find his two daughters (she rolls her eyes in a silent gesture of ‘Expect emotion’) and his lady-friend, Molly. The GP gave Walter an injection for his nausea after our phone call, and has gone off to see other patients. Walter is now feeling less nauseated, and has been able to lie down. Deidre takes me through to the living room.

  The room runs the depth of the house. Silver fabric blinds on the large front windows filter bright daylight into a white glow, illuminating an elderly woman in a dressing gown and hairnet sitting in an armchair beside the window. This is Molly. Her gaze is fixed on the single bed at the back end of the room in which a pale, thin man with yellow-tinged skin and wispy white hair is lying quietly. He is propped up on a pile of pillows and is panting, eyes closed and lips pursed. He looks far older than his sixty-odd years. The young woman in pyjamas sobs on a dining chair beside the bed, and another young woman in a smart suit (which looks odd amongst the pyjama-clad family) is standing beside her, stroking her arm. Deidre introduces me, then retires to the kitchen to continue writing her notes of the morning’s proceedings.

  After greeting the women, I walk to the bedside and kneel down. The daughters protest that I should take the chair, but I am content here, close to the patient and also, I now realise, close to a large black-and-white collie that is lying quietly beneath Walter’s bed. It’s always wise to make friends with the house dog. He sniffs my hand, then eyes me with a baleful stare and shifts posture so my knees have room. This, I am told, is Sweep, Walter’s companion for ten years, who is not usually allowed inside the house apart from the kitchen. He has been crying this morning, and so has been granted admittance. He took up this station close to Walter, and has not moved since.

  ‘Hello, Walter,’ I greet the weary patient. ‘I’m Dr Kathryn, from the palliative care team, and I’m here to see whether we can sort out this sick feeling you’ve got. Do you think you can manage to talk a little bit?’

  Walter opens his eyes, and I am struck by the deep, buttercup yellow of the whites, and the pale blue irises in stark contrast. He sighs and clears his throat. ‘I’ll try…’

  ‘I can see you’re very tired, Walter, so I can start by talking to your family, and you just correct us if we go wrong anywhere. OK?’ I suggest, and Walter agrees.

  Molly interrupts to say, ‘I’m not really family,’ and the daughter in the suit responds gently, ‘Molly, Dad loves you, and so do we. You are a really important member of our family–’ before filling up with tears. Her sister nods, too emotional to speak.

  Molly blinks back her own tears, and says, ‘This is why your dad loves you both so much. For your kind hearts.’ I am watching a family discovering itself.

  Over the last few months, Walter has had less energy. As his liver tests showed a continuous slow deterioration, his horizons began shrinking. He used to enjoy walking Sweep to the local park, but over the last few weeks a neighbour has been calling to exercise the dog. Getting up the stairs was becoming a struggle. The daughters suggested bringing his bed downstairs, but Walter’s bathroom is upstairs, and he was unwilling to consider using urine bottles or a commode.

  For the past two days, Walter has been confined to his chair in the living room, too nauseated to move. He had lost his appetite in the past couple of weeks, feeling full all the time. Yesterday he was surprised by feeling suddenly sick, and then needing to vomit. He had been astonished at how big the vomit had been–‘Caught it in the washing-up bowl, luckily,’ he reported. An ever-practical man, he rinsed out the bowl, found a clean bucket and retired to his armchair, where Molly found him stranded by nausea when she arrived to make their lunch.

  In response to Molly’s SOS, one daughter drove across the country straight away (bearing her own daughter’s pyjamas), while the other booked a next-day flight. PJ daughter and Molly persuaded Walter that he would sleep better in his bed, and the neighbours helped them move it downstairs. Walter was embarrassed to find himself ‘as weak as a kitten’ and in need of help to get ready for bed. Molly sat up in the armchair until he was asleep, then went home for her essentials and returned to stay the night.

  The household was startled awake by Walter loudly retching and moaning at around 5 a.m. They sat with him, mopping his face with cool wet cloths and rinsing the bucket as he tried, but failed, to bring up any vomit. They rang for a doctor at 8 a.m., suit daughter arrived from the airport around nine, and the doctor came at ten, along with the district nurse. This is why Molly and one daughter are still in their nightwear. They have not left Walter’s si
de since early morning. I guess that nobody has eaten either.

  ‘Have you been having hiccups, Walter?’ I ask him.

  ‘Stupendous hiccups!’ he replies, looking curious.

  Ah, it’s starting to make sense… This constellation of symptoms–fullness after eating very little, hiccups, sudden nausea relieved by large-volume vomits–all adds up to a problem with the stomach emptying effectively. The human stomach can hold a surprising volume (just think about what we might ask it to hold at Christmas or other festive occasions), and if it doesn’t empty properly, initially it just stretches, tickling the local nerves and causing hiccups. Finally, when it is just too full to take any more, there is a sudden feeling of ‘I’m going to be sick!’ and then a spectacularly large vomit, which empties the stomach, relieves all the symptoms, and lets the cycle start again.

  Now that his nausea has been relieved by the drug given by his GP, an exhausted Walter is falling asleep. I suggest to Molly and PJ daughter that they might take the opportunity to get dressed while I examine Walter, and they gratefully head upstairs. Suit daughter looks restless and anxious. She has been awake for hours, has flown the length of the country, and has had no breakfast. She takes the chance to escape to the kitchen for tea and toast while Deidre and I take a closer look at Walter. Deidre comments that she doesn’t take sugar, and suit daughter smiles and takes everyone’s order for a cuppa.

  Walter’s skin glows an almost luminous yellow in the filtered daylight. He is wasted, with protruding cheekbones and teeth that look too big for his mouth. His skin is waxy and moist; his muscles hang loose from his bones. His ribs protrude and his tummy is swollen. Beneath the blanket, his legs are also swollen, their skin stretched shiny and tight. This is advanced liver failure.

  Deidre inspects Walter’s buttocks and heels, areas where skin damage is common in bedbound patients. Walter, of course, was still up and about yesterday, and his skin is fine. Deidre’s team will keep it that way. She goes out to her car to collect some items that will help to protect Walter’s skin. Children’s laughter fills the air momentarily as the door opens and closes. Walter and I are alone–well, apart from Sweep.

  ‘How are you feeling now, Walter?’ I ask him, and he waggles his hand to indicate ‘so-so’.

  ‘You look quite tired,’ I say, and he nods. ‘Do you want to sleep?’ I ask, but he shakes his head, saying, ‘I have to fight this. The girls aren’t ready. I have to keep going.’

  ‘Walter, do you think it’s not safe to sleep?’ I ask.

  Yes, he says. A liver specialist told him that in the end, he would die in his sleep.

  ‘So, have you been fighting sleep for a while?’ I ask, and he tells me that over the last few weeks he has needed daytime naps, and has found this very frightening.

  ‘Walter,’ carefully, gently… ‘have you ever seen anyone die?’ The question startles him, but he tells me that his father had a heart attack and died three days later, having been unconscious most of that time. ‘Did he seem comfortable?’ I ask, and after reflection, Walter says that his dad died ‘in a good way’.

  ‘What was good about it, Walter? What makes a good death, do you think?’

  Walter says that his dad wasn’t frightened, and that his family was around him. He woke up now and then, and smiled at them all. In the end, he just stopped breathing. ‘We weren’t really sure whether he was gone. I thought: that’s the way to do it! But my heart is OK, so I won’t die like that.’

  The door opens and, firing me a warning glance, Walter immediately stops talking. Suit daughter, now in jeans and a T-shirt, brings a tray of steaming mugs into the room. PJ daughter and Molly join us, now more conventionally dressed. Walter asks for water, and Deidre shows the family how to help him to use a straw, expertly supporting his back so he can lean forward to sip safely. Then everyone grabs a mug, and the normalising power of a family sharing a tea break allows the next step of this drama to take place.

  Between Walter’s daughters in dining chairs at the head of his bed, and Molly sitting on it, I kneel beside Sweep again. Sweep patiently refolds his paws. Deidre leans against the kitchen door. We sip our mugs, and I open the discussion.

  ‘Walter was just telling me about when his dad died. How peaceful it was, for his dad and for the family. He’d hoped it might happen like that for himself.’

  There is utter silence. From beneath the bed, we hear Sweep scratching himself.

  ‘Walter, you said you didn’t think it would be like that for you, because you have a different illness from your dad. So you might be glad to know that what you saw is what dying usually looks like…’

  Walter raises his eyebrows to indicate surprise, and I ask permission to share some information that may help everyone to feel less worried about what will happen to him. He looks anxiously at his daughters, and I promise that I will stop if anyone finds it too hard to hear. Walter gives a thumbs-up, then reaches out for Molly’s hand.

  I explain the ‘gradually having less energy’ phase, when a person’s life expectancy is becoming shorter, and we discuss how this has been happening to Walter over the last few weeks. It was this change that made Walter’s GP decide to discuss his priorities with him, and Walter had said that he wanted to be comfortable and peaceful, and not to be rushed into hospital for treatment. This was recorded in his Emergency Health Care Plan, so even if Molly had called an ambulance or an emergency GP who did not know Walter during the night, they would have avoided a hospital admission and managed his sickness at home, just as his GP and Deidre were doing now.

  Reminding everyone not to let their drinks go cold, I move on to what to expect once a person who is weary enough to die no longer has the energy to get out of bed: the gradual increase in daytime sleeping, and the gradual reduction in time spent awake.

  ‘From here on, Walter, I’m expecting only that you are going to feel more tired, and to need more sleep. I hope we can manage this sickness with the drug Dr Green gave you before she left. We’ll put it into a little pump, and it will flow slowly into your body through a tiny needle under your skin. Deidre will be in charge of keeping it running well’–Deidre salutes Walter with her mug of coffee, and he smiles at her–‘and if the nausea comes back, then I’ll come back too, to see what else we might need to add.’

  ‘We’ll try to avoid that, please, Walter,’ quips Deidre, and everyone smiles. Despite Walter’s fears, the atmosphere in the room is relaxed and cordial.

  ‘So, at the very end of somebody’s life, Walter, they’re usually unconscious, not just asleep. That’s what you saw with your dad, isn’t it?’ Walter nods his head thoughtfully, and I continue, ‘And just as seeing your dad’s peaceful death has comforted you, so you can do that for your lovely daughters. They will see what you saw: a peaceful dad, mainly asleep, sometimes awake, finally unconscious, and that very gentle change in breathing. Just like your dad.’

  Molly surprises us all by saying, ‘I’ve seen that happen. Just like you said. When my husband died. He’d had a terrible chest for years after working in the mines. We both knew it was coming. So I’m not frightened, Walter, and I’ll be right here with you and the girls.’ She turns to them and says, ‘If that’s all right with you?’

  PJ daughter leans her tearful face towards Molly, and notices that Walter is holding her hand. ‘Like Pauline said, Molly, you are family, and we really want you to be with us. Don’t we, Dad?’ Walter raises his hand, still holding Molly’s, and gives another thumbs-up.

  I ask if anyone has any questions, then join Deidre in the kitchen, where she has anticipated my plan and brought a syringe-driver from the car. Together we do the calculations. I write the prescription, Deidre draws up the drug, which we check together, then she clips the syringe into the pump, puts in fresh batteries, checks the indicator light, and we go back into the living room.

  Walter is asleep with his mouth open. He looks even more waxy. Pauline is weeping quietly, and her sister is hugging Molly.

  ‘Dad jus
t told us that he loves us all,’ reports Pauline, ‘and he’s sorry he never asked Molly to marry him.’

  ‘Silly noddle,’ sniffs Molly. ‘I didn’t need a ring. He’s been my life. He knows it.’

  The girl hugging Molly pats her arm and says, ‘We know, Molly, and we know how happy you made him. We’re so glad you’re our almost stepmum.’

  This love-in, as a family understands itself possibly for the first time, makes me look more closely at Walter. I cannot waken him. He has told his family how much he loves them; he has asked forgiveness for his regret; he has expressed his last wishes. And now he is deeply relaxed, and comatose. His breathing is slow and noisy. His skin is cool. His fingertips are blue. His circulation is shutting down, and when I feel for his pulse it is weak and thready.

  ‘Walter?’ I say loudly. He doesn’t flicker in response. I open one of his eyelids, and an unseeing eye doesn’t attempt to blink. Unconscious, and changing far faster than Deidre and I had anticipated. I catch Deidre’s eye, and she frowns to show me that she too recognises that Walter is dying in front of us.

  Inviting the girls to move their chairs closer, and finding another chair for Molly so that all three are gathered near the head of the bed, I kneel again and offer Walter’s hand to Molly.

  ‘Can you see how he’s changing?’ I ask softly.

  Pauline says it’s lovely to see him asleep so peacefully, but her sister looks from me to Walter to Deidre and gasps, ‘Is it happening now?’

  ‘I think it might be,’ I reply gently, ‘because his breathing is changing. Can you see how relaxed he is? No frowning now, not like earlier. Molly, what do you think?’

  Molly lifts Walter’s hand and says, ‘Look how blue his fingernails are. I think it’s time, and I think he knew. That’s why he said those things.’ This is a wise woman, and she has seen death before.