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

by Kathryn Mannix

The death rate remains 100 per cent, and the pattern of the final days, and the way we actually die, are unchanged. What is different is that we have lost the familiarity we once had with that process, and we have lost the vocabulary and etiquette that served us so well in past times, when death was acknowledged to be inevitable. Instead of dying in a dear and familiar room with people we love around us, we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.

It is that part of our experience that I am seeking to convey in these stories: how the dying, like the rest of us, are mainly getting on with living.

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.

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.

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.

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.

Enabling people to be architects of their own solution is key to respecting their dignity. They are only in a new phase of life; they have not abdicated personhood.

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.

The success of a psychological intervention lies in how far the patient moves from unhelpful beliefs, thoughts and behaviours to new and more helpful ones, and therapy is most helpful when the patient perceives that they, and not the therapist, are the agent of change. This could be regarded as ‘not getting the credit’, but in fact it is perhaps the most rewarding outcome of all to watch someone fly high and proud on their own, because therapy has given them wings.

This conspiracy of silence is so common, and so heartbreaking. The elderly expect death, and many try to talk to others about their hopes and wishes. But often they are rebuffed by the young, who cannot bear, or even contemplate, those thoughts that are the constant companions of the aged or the sick.

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.

Today, in ED, Lisl’s skills focused not on saving life at any cost, but on enabling goodbye. Sometimes, in the end, it’s all we have to offer.

Some time around the age of seven, children become aware that death happens to everybody, and a little later, that it will even happen to them. This may lead to a period of anxiety and frequent requests for reassurance that immediate family members will not die. We addressed this during their childhood by explaining to our children that mummies and daddies don’t usually die until they are old and their children are grown-up. Of course, not every family has that good fortune, and specialist advice is available for families helping children to deal with death – see the Resources section at the end of this book for more information.

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.

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.

Bereavement is the process that moves us from the immediacy of loss and the associated grief, through a transition period of getting to know the world in a new way, to a state of being able to function well again. It’s not about ‘getting better’ – bereavement is not an illness, and life for the bereaved will never be the same again. But given time and support, the process itself will enable the bereaved to reach a new balance.

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.

When I asked Lil for permission to tell their story here, many years after these events, she was eager that I should record this fact: in the hospital canteen queue that very day at work, the person in front of her was a nurse specialist whose badge said ‘Helena Team’. She didn’t know who Lil was, she may not even have known who Helena was – but evidence of her legacy filled Lil’s heart.

Whatever the framework, this search for ‘meaning beyond and yet including myself’ is a metaphysical construct that is the spiritual dimension of being human.

Sometimes, it seems, a pain in the body is actually a pain in the soul, a pain in the deepest part of our being, often without a name or any recognition. By diving into his dream with him, that nurse enabled Pete to heal his deepest hurt, and that healing allowed him to die in peace.

It’s a truth rarely acknowledged that as we live longer thanks to modern medicine, it is our years of old age that are extended, not our years of youth and vigour. What are we doing to ourselves?

The price of living longer is that we experience older age, with or without cognitive decline. In 2015, for the first time ever, dementia became the commonest cause of death in England, although this reflects better data-collection as well as the increasing incidence of dementia. The rise of dementia is a moral and social challenge for the developed world, where families are scattered and the elderly are less likely to live with relatives.

The first part of life is establishing our identity and becoming a ‘safe pair of hands’ for adulthood. This first phase of life is, necessarily, egocentric. It is all about me. What am I about? What do I stand for? What are my gifts and talents, my strengths and capabilities? Does the world recognise my abilities? Perhaps there is some self-scrutiny to discern my faults and weaknesses, but that is only to ensure that I can hide them from the view and judgement of others. In this way, over the first part of a human lifetime, each of us identifies who we believe ourselves to be.

The second part of life is about transcendence to wisdom, and for many people this only develops over a long lifetime. For others, though, there can be an early transition, and this is very often through a personal experience of deep loss and enormous pain – exactly like the experience of knowing they have an incurable illness that our patients encounter; the knowledge that death is approaching, and that it will mean the end of everything they hold familiar and dear.

Each of the wisdom traditions describes this transformation process in its own way, yet the key ‘Golden Rule’ of all of them is the development of a sense of compassion for others. The focus moves from ‘me’ to ‘everyone and everything’. This includes a kindness to oneself, and the ability to recognise and forgive one’s own faults in the same l...

They are not, in the main, ‘saints’. They still have grumpy moments and periods of intense sadness, fear or anger about their fate. But they are examples of what we can all become: beacons of compassion, living in the moment, looking backwards with gratitude and forgiveness, and focused on the simple things that really matter. It’s like watching a rose unfurl to perfection. At the moment of its greatest glory it is on the brink of the curling of its petals, the explosion of its colours, and the casting of its magnificence into the wind.

Awareness of the temporary essence of all lived experience is humbling. That is why Roman generals who were granted a Triumph (a congratulatory public parade to mark their accomplishments) were accompanied in their chariot throughout the pomp and cheering by a slave whose role was to remind them of their mortality, and that this moment too will pass.

Death itself is perceived by ancient wisdom as a necessary and even welcome component of the human condition: a finality that ends uncertainty or despair; a mandated temporal boundary that makes time and relationships priceless; a promise of the laying down of the burdens of living, and the end of the repeated daily struggle.