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

by Kathryn Mannix

Working in the reality of day-to-day dying, many of us in palliative care roles are exasperated by the trenchant, black-and-white opinions of the campaigners for either view, when we know that the reality is neither white nor black, but a completely individual, ever-shifting shade of grey for each person.

Making a difference to the world seems to be an important life quest for many people, yet recognising the difference that we have made to the lives we have touched can be difficult for us. It is easy to dismiss our own contribution as insignificant, to compare ourselves with our peers and find ourselves wanting.

progressively resisting his will, I sense that Dan

In his games he is the equal of his friends. He can compete, and he can win.

Over several weeks of regular CBT sessions, Dan and I discover lots of self-blaming thoughts that make him feel bad about himself. He believes he is a bad person, a selfish son, a critical brother, a poor friend. These are all common themes for people with depression. The depressed mind plays down positivity and eagerly embraces tiny examples of negativity, puffing them up into huge, undermining traps.

Keeping a mood diary to log the effect of his efforts, he resumes internet gaming, he returns to his interest in rock music and even attends some gigs, he makes lists of his favourite music and then listens to it, he visits the cinema with his friend, he goes out for meals with his family, he notices when his mood is drifting downwards and gets busy, he pets his companion dog, and the family cat who sleeps all day in whichever room Dan is in; he even sings.

One of Dan’s bleakest thoughts during his depression was that ‘It was a waste of time me being alive. I won’t achieve anything. I will leave no legacy.’ Of course, part of his legacy was firmly in place: the enormous love and devotion within his family. Dan will be present forever for them.

We were DINKys – Dual Income, No Kids.

the patient is beyond benefit from these post-mortem answers, and that fact raises the question: what is the point? I believe the point is that our mutual interconnectedness, our belonging to each other, enables these too-late-to-help answers to be of use to other people: to offer a deeper understanding of how an illness was affecting the person as death approached; to answer questions about the impact of previous treatments like surgery or radiotherapy; to give new insights into causes of symptoms that were hard to manage.

Helena doesn’t look unwell, and as yet there is no reason for any passer-by to suspect that there is anything out of the ordinary about the threesome as Lil strolls around the shops with the buggy or attends nursery singing with the girls. Unhappiness grows like a weed that takes root in imperceptible cracks in our psyche.

learned from this experience how families develop their understanding of the meaning of an illness over time. When the diagnosis was first made, this devoted family would have stopped at nothing to keep their daughter alive for as long as possible. And yet, quietly and lovingly, over time their position shifted. They purchased a grave site, they focused on tiny details that yielded enormous benefits to their girls, they recognised the diminishing odds of adding quality to life, and they bowed with grace and tender dignity to the inevitable, ensuring that Helena’s death was as enhanced by love as the whole of the rest of her life.

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.

Some who look exhausted retain an inner vigour and zest for life; some who seem relatively well are unbearably challenged by the loss of their previous fitness. Only by listening to these people can we understand their perspective on living with illness, disability or frailty. Each is like a book recording a rich life story, that cannot be judged simply by its cover.

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?

A contemporary Inferno might also have described this scenario: the vicissitudes of extreme age, of a clear mind being tied to an existence that crumbles in staccato steps yet continues to be experienced; or life no longer experienced in abundance by those with inexorable cognitive decline but cruelly robust physiques. This room could be a very clean and tidy Circle of Hell, and it would be easy to suppose that these women would greet death as a welcome guest.

‘I have lived too long,’ she tells me, without emotion, in an echo of the words spoken by her carer on the day of her admission. ‘If I could, I would give some of my years to younger people, people with families, people who need to live longer but can’t.’ If only length of life were as simple as a transferable asset. This is an economics assessment of the predicament in which she finds herself.

‘Do you wish to be dead?’ I ask her, and she pauses to think before telling me that she does not wish deliberately to end her life, but regrets that she has lived past being useful and mobile. I nod, and reflect that she is naming a key difficulty of older age.

Our elderly are so easily dispossessed, stripped of their personhood by eyes like mine too young to value their accumulated wisdom, experience and patience.

I tell them that I had no idea what to say either, so I just told them how we work here: every day is a new one, like a gift, and we try to make every day worthwhile. It’s just what we do.

Are we just looking at the world through rose-tinted glasses? Or is there genuinely something special about people who realise that the end of their life is approaching?

They are the patients who notice that a nurse looks tired or remember that the cleaner’s daughter is sitting exams. They express appreciation, concern and gratitude. And we bathe in the light of their beneficence.

from modern happiness experimental psychology, through the great faiths, and in the atheistic wisdom of Confucius and the stoic philosophers, much has been said about the growth of the inner person over a lifetime as we move towards wisdom.

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?

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 loving way that those transformed, second-part-of-life people forgive the faults of others.

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.

This makes hard times slightly easier to bear, and good times immediately precious. Both happiness and disappointment will pass in time. 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.

hope that I have shown that, in the end, none of us is ordinary, that each unique individual is extraordinary in their own way. As we approach the ends of our lives, we experience a shift in perspective that allows us to focus on the most important things in our own domain. This shift is both poignant and freeing, as these stories illustrate. Living is precious, and is perhaps best appreciated when we live with the end in mind.

Cognitive Behaviour Therapy (CBT): A psychological therapy approach initially developed to help those with emotional disorders like depression, anxiety, obsessive-compulsive disorder or panic, CBT helps people to identify how their thoughts and actions are triggering or maintaining their emotional distress, and to learn strategies that restore their emotional balance. Since the 1990s CBT has also been shown to be effective in helping people who are coping with physical illnesses, by building their resilience, their coping skills or their strategies for dealing with the effects of their condition.