Kathryn Mannix: We've lost the art of talking about death. Here's why we must revive it
I was working as a palliative care doctor in a big teaching hospital when an elderly woman was admitted. She’d been sick for a very long time, was suffering a variety of different health problems, and was increasingly frail. She had a chest infection, and it was clear she could not survive without the aid of an intensive care unit. As the patient, who was almost 90, was too unwell to talk, I tried having a conversation with her two sons, aged in their sixties and seventies.
“Your Mum is sick enough to die," I told them, "So what would she want? Would she prefer us to try to extend her life at all costs? Or would she prefersymptom management and support as her life comes to an end?”
The two men stared at me like rabbits caught in headlights. It was clear they did not know the answer. “We never talked about it,” they answered blankly.
Since their mother had been ill for more than three years, the question of her death must surely have been the elephant in the room. I was therefore astonished the subject had never been broached. But then, one of the sons said: “Actually she did try and talk to me about it but I just said, ‘don’t be silly, you’re not that ill.’”
Then the other son chipped in: “Yes, and she did ask me to fill in power of attorney forms once but I just said, ‘don’t be silly, mum; you’ll live forever.’”
The attitudes of these two men are not unusual. As a society, we have lost the art of talking about, and dealing with, death. We no longer know what to expect. Instead, we live our lives as though we and our loved ones are immortal. This is fine for much of the time, but it’s disabling if we persist in forgetting death as it approaches us, or as it lines up for a friend or family member.
The reasons for our detachment from the only certainty in life we all share - that of death - are, I suspect, multifactorial. We are dying much later than we were 100 years ago, thanks to better healthcare, nutrition and sanitation. As a result, young people do not see death happening in the normal course of their lives because their relatives are not dying until older age. So, like the two sons in the story above, we can make it to our sixties and seventies without having witnessed the death of a parent.
It is, of course, a wonderful thing that modern medicine can prevent people dying from reversible conditions in their prime. But there’s another side to this, too: in the past, when someone’s life could not be saved,instead of going to hospitalthey remained at home, meaning young people saw plenty of deaths and mortality did not take anyone by surprise. Today, when people do see death, it is often in a hospital setting and occurs while medics are in the process of trying to prevent the death from happening.
We are driven these days to attempt to reverse dying come what may, rather than stand back and ask ourselves: “Is this going to be reversible? And if not, then what is the best way of dealing with that?” Do we surround a person with lights and tubes and machinery as they reach the final hours of their lives? Or do we give them a few more days in a comfy bed, possibly at home, looking out the window at their own daffodils, in a comfortable and familiar setting?
It’s not an easy conversation to have, but one I feel we must. That is why I wrote my book, With The End in Mind: Dying, Death and Wisdom in an Age of Denial, which is now on the Wellcome Book prize shortlist. During my 30-year career in palliative care it became increasingly clear to me that someone had to tell the world what normal dying is like. Only, it started to dawn on me that no-one was going to do that - and I felt compelled to try. I took early retirement to make time to speak out, in an attempt to reclaim public understanding of dying.
If we are in denial, it stems from an understandable impulse: we don’t like to think about losing our parents; nor do we want to cause our loved ones grief by broaching a subject so painful. But in my experience, once the subject is out in the open, once people know what to expect and they understand dying as a recognisable process, it is easier for families to watch at a deathbed, to understand and to learn from it.
Another story I recount in the book helps illustrate this. A young father is dying while his wife sits beside him. Having been told what to expect, she is taking great comfort in watching events evolve in exactly the way they’ve been explained to her (and also to her husband, before he lost consciousness). Then the man’s brother arrives from overseas and enters the room with little prior awareness of the natural process to which he’s about to bear witness. “You wouldn’t let a dog suffer like that!” he cries. But the soon-to-be widow remains tranquil. She knows what she’s seeing is peaceful, normal dying.
I had to sit with the brother and explain things. “Listen to the noise he is making and tell me what you think is causing it,” I urged him, noting his distress about the gurgling sound emanating from the back of his brother’s throat. He told me he thought his brother was choking. Together, we observed that his brother was making no attempt to clear his throat. “We can hear it, and it bothers us, but it isn’t bothering him at all,” I explained. “Your brother is not suffering. He's so deeply comatose that he can't even feel his throat. This tells us that he iscomfortable, deeply relaxed.”
Demystifying the process is helpful for the relatives, and helpful for us all, as at some time or other we will all lose a loved one. Moreover, it can help alleviate our fears about our own death as well.
The person who understands the death he is witnessing can go away afterwards and say: “My brother was deeply unconscious and very relaxed as he came to the end of his life.” I’m not claiming it would put a spring in his step as he left his brother’s deathbed, but he’s far less likely to be traumatised by what he’s seen.
The response to my book has shown me how urgently we need to start the conversation about death. I’ve had messages from strangers confessing they had struggled with horrible memories of deathbeds, at which they did not understand what they’d seen and heard, and had wrongly believed their loved one was in pain. I’ve had letters from parents who’ve lost children, telling me what I’ve written has helped them understand what happened when their child died. And I’ve even had messages from the dying, telling me they are now less frightened of what lies ahead.
Just as we need to know what to expect when we bring a life into this world, we need to know what to expect at the end. Just as every birth is individual, although the process is the same, so it is with death. Now, I hope, we can give people back that knowledge and understanding of the final part of living. It’s time to reclaim our lost wisdom.
As told to Rosa Silverman
With The End in Mind by Kathryn Mannix is published by HarperCollins (￡16.99). To order your copy for ￡14.99 plus p&p call 0844 871 1514 or visit books.telegraph.co.uk
The winner of the Wellcome Book prize 2018 is announced on April 30
