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

by Kathryn Mannix

Whether that is birth, death, love, loss or transformation, everyone frames their experience through the lens of what they already know.

Not knowing what to expect, people take their cues instead from vicarious experience: television, films, novels, social media and the news. These sensationalised yet simultaneously trivialised versions of dying and death have replaced what was once everyone’s common experience of observing the dying of people around them, of seeing death often enough to recognise its patterns, to become familiar with life lived well within the limits of decreasing vigour, and even to develop a familiarity with the sequences of the deathbed.

‘The thing is …’ he paused again. ‘Well, you were so kind to say I could phone you … and I didn’t know who else I could tell … but, well … the thing is, I finally threw Irene’s toothbrush out yesterday. And today it isn’t in the bathroom, and I really feel she is never coming back …’ I could hear his voice breaking with emotion, and I remembered his bewildered face, back on the ward the morning she died.

The lesson was coming home to me. Those bereavement conversations are just the beginning, the start of a process that is going to take a lifetime for people to live alongside in a new way.

I was discovering that I was not afraid of death; rather, I was in awe of it, and of its impact on our lives. What would happen if we ever ‘found a cure’ for death? Immortality seems in many ways an uninviting option. It is the fact that every day counts us down that makes each one such a gift.

There are only two days with fewer than twenty-four hours in each lifetime, sitting like bookends astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious.

Rather than performing brave deeds, courage may involve living bravely, even as life ebbs. Or it may involve embarking on a conversation that feels very uncomfortable, and yet enables someone to feel accompanied in their darkness, like ‘a good deed in a naughty world’.

The nurse was wise; she knew that reassurance would not help Sabine, and that listening, encouraging, allowing the full depth of her despair and fear to be expressed, was a vital gift at that moment.

escape to ponder whether bravery is about being fearless or about tolerating fear. Why do the ideas for helpful responses arise only as I walk away from the bed?

Although loss of consciousness during a sudden death usually protects the dying person from full awareness of the situation, those around them retain memories that may be difficult to bear.

Bereaved people, even those who have witnessed the apparently peaceful death of a loved one, often need to tell their story repeatedly, and that is an important part of transferring the experience they endured into a memory, instead of reliving it like a parallel reality every time they think about it.

The news of the cancer had an interesting effect on Nana: almost as though she had been waiting to know what would bring about her eventual death, she seemed so relaxed that several family members wondered whether she had really understood the news. But this is the wisdom of a long life: none of us is immortal, and every day brings us closer to our last.

All things I have seen many, many times, yet never really seen at all.

Before she became unable to converse with fluency, she was a confidante of our woes and transgressions, an adviser in anxieties and a source of solace in times of trouble. She knows us inside-out, but she said so little about herself; and we self-absorbed youngsters never thought to ask.

Now that I understand how minutely attentive to detail the watchers are, how active and probing their attention is, how exhausting the responsibility feels, I am a better servant to their needs and questions, and so much more patient with their frequent requests to check for any sign of discomfort or distress. This last vigil is a place of accountability, a dawning realisation of the true value of the life that is about to end; a place of watching and listening; a time to contemplate what connects us, and how the approaching separation will change our own lives forever. How intently we serve, who only sit and wait.

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.

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.

cognitive behaviour therapy (CBT), and some tablets that had made her sleepy, so she declined to continue them. The CBT challenged some of her hopelessness, and encouraged her to try mini-experiments to check whether or not her feeling of helplessness was actually justified.

Whether CBT first aid or the full CBT intervention, the core principle is that we are made unhappy by the way we interpret events. Distressing emotions are triggered by disturbing underlying thoughts, and helping a patient to notice these thoughts and to consider whether or not they are accurate and helpful is key to enabling them to change.

As the player places the ball on the penalty spot and walks back before taking the vital kick, many people can describe the physical symptoms of adrenalin release: dry mouth, pounding heart, breathlessness, weak legs, sweaty palms … yet we describe this experience as ‘excitement’. Wedding-day nerves can feel the same, but brides don’t generally interpret them as a fear of impending death.

‘Really? Why’s that then?’ I am not going to cry. ‘Well, look at me. I’m fucking dying, and I’m not fucking panicking!’ he declared, delighted with himself and allowing himself a deathbed swagger.

If you worry about having a conversation like this with someone you know well, then perhaps you could join in a ‘death café’, either on your own or with your loved one. These are friendly, informal gatherings at which people can mull over various aspects of death and dying over a comforting warm drink and excellent cake. There are death café meetings in more than forty countries, and they always welcome new visitors.

Reclaiming the language of illness and dying enables us to have simple, unambiguous conversations about death. Allowing each other to discuss dying, rather than treating the D-words as magic ciphers that may cause harm merely by being spoken aloud, can support a dying person in anticipating the last part of their living, in planning ahead in order to prepare their loved ones for bereavement, and can bring the notion of death as the thing that happens at the end of every life back into the realm of the normal.

Open discussion reduces superstition and fear, and allows us to be honest with each other at a time when pretence and well-intentioned lies can separate us, wasting time that is very precious.

‘He tried to. Oh, God – he tried to talk about it, and I told him not to be so maudlin …’ His voice cracks and his shoulders heave. Kathleen touches his shoulder gently. A brother picks up the thread. ‘Not just you, Sam,’ he says. ‘Dad asked me to do one of those attorney documents in case Mum ever needed a hand, and I just said he’d be here forever and to stop being gloomy …’ and his voice peters away.

‘He did that thing that so many people do. That “choose the moment” thing. You know – the family was with him from the time he collapsed, right through ED and into the side room. And then when his sons had gone for food, and his wife went outside for a smoke, he just died. He was only on his own for two minutes.’

This phenomenon occurs with such regularity that we often warn families, especially when the dying process stretches over several days, that it may happen. We don’t understand it, but we recognise that sometimes people can only relax into death when they are alone. Are they somehow held by bonds of concern for the watchers? Is it the presence of beloved people in the room that holds them between life and death? Are they choosing? We don’t know the answers, but we recognise the pattern.

The answer, I am glad to say, is no. It will never feel comfortable to sit so close to others’ grief. Working in the face of death will always feel profound, numinous and sometimes overwhelming – that’s why we work in teams. But you will be able to recognise that you are offering something vital, transformative and even spiritual: the opportunity for individuals to meet or to watch death with an awareness that is lost if we fail to be truthful.

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 breathing changes: the cycle of deep, noisy breaths turning slower and shallower; the pauses; the restart of the cycle.

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.’

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.

She learned to notice the way, when she was feeling sad or scared or angry, there was always some thought in her mind driving the emotion. She called them her ‘pop-ups’. Many of her pop-ups were thoughts about keeping things ‘normal’, yet she did allow herself to buy a larger pair of jeans, and decided to buy a soft, smart pyjama suit for daytime wear at home.

palliative care, we have learned to make no assumptions: we ask. The interesting thing is that people are able and willing to answer, and when they share that burden they often discover, from within themselves, new insights and ideas that help them to cope.

Pause for Thought: Naming Death

Important chapter

The stoic philosophers asserted that it is not events themselves, but our responses to them that cause us happiness or heartache – at the prospect of the death of a beloved family member or friend, our upset may be mediated by our own sense of powerlessness or loss, or by the apparent distress of our loved one.

We know what the processes of both birth and death look like when they are proceeding smoothly – clear phases, predictable progression, needing companionship and encouragement but not interference: almost like watching the tide advancing up the beach.

When does a treatment that was begun to save a life become an interference that is simply prolonging death? Can a life-sustaining treatment, begun in hope, turn into a trap that binds a failing body to existence? And if so, what are the ‘rules’ about stopping treatment that no longer helps the person to live well?

‘I don’t know how you do your job,’ he says as I rise to leave. ‘All that dying all the time.’ I look through the office door to the ICU entrance, where lives are hanging by medically managed threads. I couldn’t do his job either.

This possibility of unintended pressure is a dilemma currently confronting healthcare systems across the world. Once the euthanasia genie is out of the bottle, you must be careful what you wish for.

‘But life is not everything if weakness overtakes you. I am overtaken by weakness; I will never be strong again. What use is it to prolong living in a useless way? Is there a treatment to make me strong? No. Is there a treatment to make me young? No. Can you make me fit and strong? No, you cannot, and this we must accept. So living longer is not a good thing if I live like an invalid.’

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.

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.

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.

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.

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.