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.

Palliative care is not solely concerned with dying: excellent symptom management should be accessible to people of all diagnoses at any stage of their illness, when they require it.

how the dying, like the rest of us, are mainly getting on with living.

Watching dying is like watching birth: in both, there are recognisable stages in a progression of changes towards the anticipated outcome.

looked a little pale. His lips were a deep purple and his tongue was visible, also dusky. Yes, he is dead.

I was perplexed by the stark simplicity, the lack of ceremony. Our next patient was a child with a sweet stuck up her nose.

Each of those certificates was about a person, and each of those people had family members who needed

before taking a deep breath and entering the room to give the worst news in the world.

Families told stories about their gifts and talents, their kindnesses and interests, their quirks and peculiarities. These conversations were almost always in the present tense: there was a sense of their loved one still being present in some way, perhaps while the body was still tucked in the same bed, or was being cared for somewhere else in the hospital.

wondered how many others would have called, had I given them a name and a number in writing. By now I was more aware of the network of care that is available, and I asked Irene’s husband for permission to contact his GP. I told him I was honoured that he felt he could call me. I told him that I remembered Irene with such fondness, and that I could not begin to imagine his loss.

Sometimes, things that are right in front of our noses are not truly noticed until someone else calls them to our attention.

and to be confident that the more we understand about the way dying proceeds, the better we will manage it.

‘You have been worrying about what dying will be like, and whether it will be painful for you?’ ‘Yes,’ she replied. I was startled by his direct approach, but Sabine appeared unsurprised. ‘And you have been worrying that your courage may fail?’

wonder whether it would help you if I describe what dying will be like,’ he said, looking straight into her eyes. ‘And I wonder whether you have ever seen anyone die from the illness that you have?’

He told me goodbye was the wrong word, that this was au revoir. Until we see each other again …’

‘So let’s talk about your illness,’ said our leader. ‘First of all, let’s talk about pain. Has this been a very painful illness so far?’ She shakes her head. He takes up her medication chart, and points out to her that she is taking no regular painkillers, only occasional doses of a drug for colicky pain in her abdomen.

‘Well, the first thing we notice is that people are more tired. Their illness saps their energy. I think you are already noticing that?’

time goes by,’ he says, ‘we find that people begin to spend more time sleeping, and some of that time they are even more deeply asleep, they slip into a coma.

And so, at the very end of life, a person is simply unconscious all of the time. And then their breathing starts to change. Sometimes deep and slow, sometimes shallow and faster, and then, very gently, the breathing slows down, and very gently stops. No sudden rush of pain at the end. No feeling of fading away. No panic. Just very, very peaceful …’

‘That is probably the most helpful gift we can ever give to our patients. Few have seen a death. Most imagine dying to be agonising and undignified.

Is it really within my gift to offer that peace of mind to people at the ends of their lives?

But sometimes there is an unexpected last rise before the final fall, a kind of swansong. Often this is unexplained, but occasionally there is a clear cause, and sometimes the energy rush is a mixed blessing.

now with pain well controlled but brains in full working order.

Because the drugs that were stopping her nausea were also giving her this sense of driven restlessness: akathisia, or ‘inability to sit’.

‘And that exhaustion is caused by her illness, not by how busy she’s been today,’ I explain. ‘But

He was naming what they could observe; he was leading them through the process; he was reassuring them that all was expected, and usual, and safe. This is the task of the experienced midwife,

All that time, a cancer that had begun in his testis had been slowly spreading up the chain of lymph nodes that lies deep in the abdomen and close to the spine, causing the lymph nodes to swell and hurt, and eventually

All the Lonely Ballroomers were participating in clinical trials. Data were (and still are) gathered from centres all over Europe, and it is this constant, trans-European collaborative effort to find the highest possible cure rate that has made it possible to expect cure in more than 95 per cent of teratoma patients;

The oncologist has seen this before: beads of tumour that have glued gut to large blood vessels, shrinking to leave a hole as the cancer responds to the chemotherapy, channelling the whole blood volume out of the body. It is rare but recognised, and untreatable

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 vigil around a deathbed is a common sight in palliative care.

during the Second World War, working in a munitions factory where the women on the production line twisted the detonator wires of occasional bombs in the hope that civilian lives in Germany would be spared; and then returned to her inner-city home through which an unexploded German incendiary bomb had dropped, its own detonator inactive thanks to unknown sisters in Germany.

How can I have been so unaware of the deep, analytic attention of the families who sit and wait?

am encountering its familiar pattern of gathered family, and sitting rotas, and detailed reporting of almost no information, from an utterly new and unexpected perspective.

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.

It’s surprising how relaxed a well-prepared family can be around a deathbed.

Human beings are highly resilient. We adapt to adversity, and find ways to maintain our inner peace as best we can.

Potential ways to avoid pressure ulcers, I suggested, might be to keep him rotating on a rotisserie-type gadget not yet invented for humans, or to avoid malnutrition.

wanted euthanasia, and no one could do it.

But you weren’t saying no to dying, you were saying yes to living. I get that now.

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.

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.

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

People are not limited so much by their illness as by their attitude to it.

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

This episode of care had many repercussions. The ward team used Mark’s diagram to understand his panic and to talk him through it, instead of giving him unnecessary oxygen and making him dependent on reassurance.

The cystic fibrosis team saw the benefit of a psychological intervention even at the very end of life, and a member of their nursing team trained as a cognitive therapist and has gone on to produce a transformational clinical service and groundbreaking research on the impact of CBT-based support