With the End in Mind: Dying, Death and Wisdom in an Age of Denial

I have evidence. There is a palliative care survey of several hundred MND patients, followed up until they died, and precisely none of them died by choking. ‘That’s not to say that they didn’t have occasional episodes when they struggled to clear the phlegm in their throats – and it’s hard to clear your throat when your cough is very weak, isn’t it?’ He nods. ‘But nobody died choking, and nobody’s family had to watch them choke to death. Dying is gentler than that. Shall I describe what they are likely to see?’

Concentrating carefully, he allows me to tell him what we see as people die. ‘That’s amazing,’ he muses slowly. ‘That’s just amazing. So it’s safe for me to swallow?’

‘Well, actually no, it’s not safe,’ I remind him. ‘Because some of the food goes down the wrong way, and that will damage your lungs. But if you don’t mind the lung damage, and you want the pleasure of eating, then I’d say you have a choice.’

He is still listening intently; we are now collaborating, where initially I felt we had been debating.

‘And I would say you have more choice than that, too. If you want to avoid pressure ulcers, you could have that feeding tube put through your skin straight into your stomach, to have liquidised meals without the bother of trying to chew and swallow every calorie. And if you decide to stop using it later on, that is your right.’

Eric, the man who Gets Things Done, has some thinking to do. I leave him to ponder. The following week, I hear that he is to have a feeding (‘PEG’) tube inserted, and will be going home once Grace has learned how to give the feeds. And there our acquaintance might have ended, had it not been for Christmas.

At home, he used the feeding tube for all his nutrition, but swallowed very small amounts of delicious food created by Grace, just for the pleasure of eating. He often had a coughing spasm after swallowing, but considered this a price worth paying. When he developed another chest infection, he declined to go to hospital but agreed to come to the hospice, where once again he was given the choice of whether to have the chest infection treated, and once again he opted for antibiotics.

His mood was low. He told one of the nurses that he felt that he was a burden to Grace, and that he wished he could die. Despite this, he wanted to live until Christmas. This was a surprising contradiction, and the nurse explored it. Eric thought that there was now insufficient time for his family to recover from his death before Christmas, even if he died in the next few days. Accepting antibiotics was part of his new plan to control the timing of his death. All his plans to shorten his life had failed, so now he was trying to prolong it instead.

The nurse asked about the Christmas deadline, and the full extent of Eric’s love of family time at Christmas poured out: the gathering, the gifts, the rituals about particular decorations on the tree, the songs, the family stories with new embellishments each year. It was a time when they were thankful for each other, for their family life. Eric wanted that Christmas experience, for himself and for all of them, just one last time.

On the ward round the nurse repeated this conversation, and the team pondered the dilemma. Eric was unlikely to live beyond mid-November: the muscles in his chest were becoming weaker, his breathing at night-time was beginning to fail, and he had decided that he would not use a ventilator to assist his breathing. He was running out of options. If only Christmas were closer …

When we proposed moving Christmas, Eric grinned. ‘There will have to be a tree …’ he said.

It was a joy to see that tree, the table set with linen, china and glasses, the stockings along the hospice window ledge. On a windy autumn evening the family arrived in Christmas jumpers and fancy clothes, carrying gifts and musical instruments. Their host greeted them at the front door of the building in his bed, pushed by two nurses wearing Santa hats, who delivered him, along with his oxygen cylinder and tubing, into the training room the catering team had set up like a five-star restaurant. Off-duty staff in formal dress waited on the family; turkey and trimmings were served; Eric’s oxygen was turned off briefly so the pudding could make a glorious, flaming entrance. After dinner, those of us on duty could hear guitars, Christmas carols and lots of laughter coming from the party.

Two days later, Eric sent for me. He told me that he wanted to stop his antibiotics. ‘I’m ready to die,’ he said, ‘and this is my chance. I’m glad I didn’t kill myself earlier. It would have been too soon, I would have missed so much. I had no idea that I would be able to tolerate living such a changed life.’

He closed his eyes. Thinking that he was tired, I got up to leave. He commanded me to sit down and listen. ‘This is important,’ he said. ‘People need to understand this. You need to understand this. I wanted to die before something happened that I couldn’t bear. But I didn’t die, and the thing I dreaded happened. But I found that I could bear it. I wanted euthanasia, and no one could do it. But if they had, then when would I have asked for it? Chances are I would have asked too soon, and I would have missed Christmas. So I’m glad you couldn’t do it. I’ve changed my mind, and I wanted to tell you. I was angry with you because you’re part of the System that says no to assisting with dying. But you weren’t saying no to dying, you were saying yes to living. I get that now. I’m a teacher, and you need to tell other people this for me, because I won’t be here to tell them.’

And then I was dismissed from the head teacher’s presence.

In fact Eric’s pneumonia was improving, but he was becoming very weak. The day after this conversation, he was too sleepy to talk. A day later, he was unconscious. Surrounded by his family, and with a Christmas tree in the corner of his room, he died gently and without any hint of choking, after that last wonderful Christmas.

Never Let Me Go (#ulink_6b5b5744-a9e8-52a5-b811-13d32620e46c)

Denial is an effective psychological mechanism for dealing with distressing situations. By choosing not to believe the bad or dreaded thing is happening, a person can avoid distress completely. Difficulties may arise as it becomes harder and harder for them to ignore evidence that something is seriously wrong: if they have not accepted any bad news at all, then nor have they made any emotional adjustment for it. If their denial breaks down suddenly, they may become completely overwhelmed by the realisation of how bad things really are.

For families, it can be a huge challenge to live alongside someone who is maintaining denial of an unpalatable truth.

How should we respond as professionals when there is no time left to adjust? Is complying with denial telling lies, or respecting the person’s choice?

In a single hospice room filled with postcards, furnished with her own cushions and fabrics from home, an enfeebled young woman with a vibrant mane of red hair is pacing. Supported by her mother, she lowers herself carefully to sit on a brightly coloured blanket that has been placed on the chair. Her husband and her father look on warily from the small sofa bed. She strokes the softly brushed wool, and a stream of babbling words pours from her lips. ‘Feel how soft it is! It’s alpaca. Remember when your brother came back from Peru with it, Andy? When I’m better, we’re going to Peru with him; he knows all the best places to visit. I want to see those temples to the sun. The god has huge hair. He looks like me! I could be the sun-god …’

She cannot settle. Rising to her feet, and almost falling as her swollen right leg fails to do her bidding, she bats away the anxious attention of her mother and limps back to the bed, perching on the edge. She faces the sofa, where her father and Andy are sitting in silence.

‘Cheer up, you two!’ she commands. ‘Nobody’s dead!’ She coughs and sighs. This is Sally, and she is dying. But nobody can mention it.

Nicola, one of the nurses, enters the room, bringing Sally’s medications: drugs to prevent pain, nausea and breathlessness caused by the cancer that is tearing through her body.

‘Ah, cocktails!’ beams Sally with a brittle smile, and Nicola pours her a glass of water. Sally takes the glass, but her arm cannot take its weight, and the water spills on her clothes, on the bed and on the nurse. ‘Drat it!’ she shouts, suddenly angry. ‘Why did that happen? I’m soaked! Don’t just look at me like that’ – to the men. ‘Go and get a towel! No, Mum, I don’t want another one. For heaven’s sake, WHY ARE YOU PEOPLE ALL SO USELESS?!’ She bursts into tears.

Nicola observes Sally’s restlessness, her weakness, her outburst of anger, the flood of tears. She wonders whether, despite her efforts to ignore the rapid deterioration in her health, Sally is starting to sense that all is not well. Using denial to cope with an unbearable sorrow can help someone to avoid facing their distress, but if they can no longer maintain their defence, the cataclysmic truth can rush in like an unstoppable tide, drowning them in their own dread. Nicola suspects that, after several years of staunch denial, Sally at last senses the oncoming torrent. Wisely, she deals with the spilled glass rather than the tide of terror, then returns to the office for help.

I had known Sally since her cancer was first diagnosed. Then she was a party girl, a redhead with a sumptuous fountain of burnished copper hair, a glowing, shimmering radiance cascading around her shoulders; a Pre-Raphaelite goddess. And this is relevant, because chemotherapy makes people’s hair fall out.

I first met her while I was a research fellow in the cancer centre, taking on a research project for the Professor of Oncology as part of my palliative medicine training; Sally’s party dancing was impeded by having had her right big toe amputated to stop the spread of a melanoma that had been found growing underneath her painful toenail. She told me that she was ‘going to fight it’ when I arrived to put up her drip; she was too busy enjoying life to let cancer get in her way. She had Plans.

‘Tell me about your plans,’ I encouraged her as I swabbed her arm and prepared to insert the plastic cannula through which she would have a chemotherapy drip for the next few hours.

She gathered up her flowing, curly halo of hair with her free hand to keep it away from my work, then took a breath, smiled, and said, ‘Well, I want to learn to windsurf. Somewhere warm. Greece, maybe.’ Her eyes took on a faraway gaze. ‘You can go on watersports holidays and get taught to do all kinds of stuff. And then I want to go to Australia and visit the Great Barrier Reef and learn to scuba-dive. It’s supposed to be amazing!’ Then, leaning forward, she peered at the cannula now sticking out of her arm and said, ‘Have you done it already? I was expecting something bigger, and lots of pain and blood and stuff!’

As I taped in the cannula and attached the saline drip, waiting for the chemotherapy bag to arrive from the hospital pharmacy, she carried on explaining her plans. She seemed simply to say aloud whatever was passing through her mind.

‘I want to travel,’ she said. ‘I want great holidays. I want to marry Andy. And we’ll have an amazing honeymoon somewhere really fantastic, like the Himalayas or the Alps. He loves climbing. But he hates water. We’re like chalk and cheese! It’s like that “opposites attract” thing, you know? I mean, he’s so quiet and thoughtful and clever, and I’m like, “Wheee! Look at me!” and he’s like, “I’m trying to concentrate here, do you mind?” with his head in a book or watching some film about climbing or nature and stuff. I don’t know how we’ll make it work, but we will. And I’ll learn to cook and make all his favourite meals and I’ll learn to be quiet – shhh – yeah, like’ – whispering now – ‘so quiet when he’s thinking about things.’

She cannot maintain the whisper, and launches on, apparently exuberant and enthusiastic – or is she terrified and garrulous? It’s so hard to tell. ‘But obviously I can’t be a bride with like no hair and that, so we’ll have to wait until my hair grows back after the drugs, but it’s worth it to be cured and I’ll look back on all this when I’m an old lady and all this will seem like a crazy dream. I’ll beat this. I know I will.’

I am caught up by her enthusiasm, so it is only later in the day, while grabbing a sandwich with my colleagues during a teaching session, that I consider the vital role of our big toe in balance. Windsurfing and climbing will be extremely challenging without a big toe. And do you need a big toe to flap a flipper when you’re diving? I waggle my outstretched foot thoughtfully, until the speaker meets my eye and I realise I have not heard a word of the lecture. Sally is occupying my mind, chattering and disturbing my concentration from the other side of the hospital.

Three weeks later, she is back for her next round of chemotherapy. I almost don’t recognise her: without her tumble of hair she is delicate and pixie-like, her features naked without eyebrows or lashes. She greets me enthusiastically with another stream-of-­consciousness monologue. ‘Hi, doc! Here we go again! Oh boy, I was so sick after you left last time. Can you give me anything extra for the sickness? It’s just the worst. I hope I never get morning sickness. I mean, can you imagine feeling like that, but for months?! Un-be-liev-a-ble! I want lots of kids. Andy’s blond, so we might have more ginger-nuts like me. I think ginger babies look soooo cute, don’t you?’

I explain that I will not be putting her drip up until I have checked that her bone marrow and kidneys have recovered from the previous round of chemotherapy; I will take a blood test now, and get back to her as soon as I get the results. She looks dis­­appointed. ‘Just bring it on!’ she announces. ‘I need to get better, so get that cancer-poison dripping!’ While I prepare my needle and tubes for her blood test, I ask her to tell me what other plans she has for her future life with Andy. She says she wants ‘at least four kids’, and she has ideas for their names already; the blood is in the tubes before she stops talking and blinks, eyes owl-like in her round, bare face. ‘Crikey! I never felt a thing again!’

Actually, she is so distracted by her own ideas and plans that she simply doesn’t notice the jab of the needle. It’s not due to any skill on my part – it’s her own coping device, the power of her mind in action, to behave almost as though we are pals meeting for a coffee and catching up on all our news: ‘Nothing wrong here …’

This week her drip is put up by one of the chemotherapy nurses, so I don’t see her again until I am leaving for home. She is sitting in the car park, drip still running, having a cigarette with a tall, angular man with short fair hair and round-framed spectacles. ‘Hey, doc! This is Andy. Andy, this is the Professor’s assistant. She’s the chief poisoner.’

I walk across the car park to say hello. I learn that Sally just has to wait for a bag of saline to run through (‘It’s rinsing my kidneys. I know it’s doing me good!’), and then Andy will take her home. He looks tired and anxious. In fact, he looks like the sick person; if Sally were not bald and towing a drip stand, she would look completely well.

Over the next four months, Sally continued to attend for her chemotherapy every three weeks. She vomited profusely, but always came up smiling and imagining how other people must be having a worse time than she was. She had steroid tablets to reduce her nausea, and these gave her plump, pink cheeks. She looked radiant. Andy, meanwhile, became increasingly gaunt and haunted-looking. I almost expected to see him with his own drip stand.

And then Sally’s treatment was over. The research nurses saw her occasionally in the Professor’s clinic, and reported that she was well. We got a postcard from Greece (‘Hiya Poison Team. Said I’d do it so here we are. Can’t stand up on a wind-surfer but kayaking is brilliant!!! Keep up the great work. Sally’n’Andy xxx’). I lost touch with her progress when I went back to work at the hospice at the end of my research project, but I often thought of her when I met patients who coped with their misfortune by making little of it and thinking about how much worse things were for other people. Her denial had supported her through the ordeal of her treatment.

Since then, two years have passed. Sally’s hospice referral took me by surprise, because I didn’t recognise her married name. The plastic surgery ward team had asked for advice about managing a young woman with widespread melanoma. There was some concern that she didn’t seem to realise how serious things were, and they wondered whether this was due to brain secondaries or to a psychological problem manifesting as denial. I was sent to assess her by the leader.

On the plastic surgery ward, the doctor explained that their young patient had devastatingly widespread melanoma and a life expectancy of just a few weeks. Her groin was completely encased in the cancer, which was growing outwards through the surgical wound where removal of the affected lymph nodes had been attempted. Back-pressure from the groin tumour was causing her whole leg to swell. She had multiple lung nodules, getting bigger week by week on her X-rays, and also liver deposits that were almost certainly growing at a similar rate. ‘And yet,’ he sighed, ‘she seems not to hear any of this bad news when we tell her. She just tells us it’s an infection in her wound, and that chemotherapy will cure her. I’ve never come across anything like this. We just don’t know how to handle her.’ He invited me to walk down the ward with him, to be introduced to the patient.

I saw that unforgettable hair shining across the hospital ward, and recognised her before she realised who I was. Her face was swollen by high-dose steroids for her headaches; she had a compression stocking on her right leg and the remaining four toes on that foot, swollen, shiny and disconcertingly purple, stuck out of the elasticated cuff. Pale and thin beside her sat Andy, disintegrating like Dorian Gray’s portrait while she beamed at me with an inner splendour despite her ruinous disease.

‘Well, doc! Long time, no see! What a surprise!’

It is to me, too, I thought apprehensively.

‘Well, it’s been a busy time since I saw you last,’ she announced. ‘Look! Andy and I got married!’ She held up her left hand for me to inspect her engagement and wedding rings, a rather splendid interlocking arrangement of jewellery clearly made specifically for her. So you did achieve that plan. I was relieved that she had accomplished some of her dream in time.

‘Bit of a hiccup with the melanoma thing, though,’ she continued breezily. ‘I got a few lymph nodes in my groin and there’s a bit of melanoma in them, so I might need a little dose of chemotherapy. But there’s an infection in the wound. And you know’ – she grinned conspiratorially at me – ‘that they never give chemo when there’s a bug on board, so I’m waiting for the infection to clear first. It’s making my leg swell a bit. But I’ll beat this. You know I always do. Have you come to see me about the chemo?’

She paused to draw breath. Andy looked at me with wide-eyed anxiety, and the ward doctor also watched my face, clearly wondering how I intended to tackle this situation.

This was exactly the same coping style Sally had used of old: downplay the negatives, emphasise the tiniest positives, pretend it will all be fine, make plans for the future. She seemed unaware of her true situation, but a single glance at Andy told me that he was fully alert both to the devastation that was unfolding, and to his wife’s inability to contemplate it.