A doctor’s reflections on dying
In this sensitive and moving book extract a palliative care doctor shares her experience of working with the dying and the bereaved
DEATH. It’s a morbid topic guaranteed to kill just about any conversation. So we avoid talking about it because, quite simply, it freaks us out. But Dr Kathryn Mannix says it’s time we confronted our worst fear.
Over the course of her career as a palliative care doctor in British hospitals and hospices she saw thousands of people taking their last breath. Now, having retired, the former physician has written a bestselling book, With the End in Mind, which is making waves around the world.
In this thought-provoking extract she looks back on some of her poignant experiences with the dying to show why those final moments are nothing to be feared, and how by embracing death – rather than dreading it – we can live each day to the full and see life as a precious gift.
I FIRST saw a dead person when I was 18. It was my first term at medical school. He was a man who’d died of a heart attack on his way to hospital in an ambulance.
The dead man was in his forties, broad-chested and wide-browed, eyes closed but eyebrows raised, giving an impression of surprise. The doctor shone a light in his eyes, listened over his chest for heart or breath sounds; he examined a print-out of the ECG from the last moments that his heart was beating, then nodded to the crew. They noted the time of this examination as the declared time of death. They disembarked. I was last out. “Come on!” the doctor called back to me. “Plenty to do for the living. Leave him for the crew.”
I hesitated. Perhaps he’d made a mistake. If I stood there long enough, I was sure I’d see the man take a breath. He didn’t look dead . . .
Noticing my hesitation, the doctor climbed back into the ambulance. “First time, eh? Okay, use your stethoscope. Put it over his heart.”
I put the bell of the stethoscope over where the heart should be beating. I’d never heard silence so solid, nor listened with such focus. Then I noticed the man looked a little pale. His lips were a deep purple and his tongue was visible, also dusky. Yes, he was dead.
We left the ambulance and walked back into casualty.
“You’ll get used to it,” the doctor said kindly, before he picked up a new chart and carried on with his evening shift. I was perplexed by the stark simplicity, the lack of ceremony. Our next patient was a child with a sweet stuck up her nose.
There were other, less vividly remembered deaths while I was a student, but in the first month after I’d qualified I earned the hospital record for the number of death certificates issued. This was simply because I was working on a ward that had a lot of people with incurable illnesses.
Colleagues quipped that perhaps I should get an award. But what they didn’t see was the massive learning curve I was climbing. Each of those certificates was about a person, and each of those people had relatives who needed to be told about the death, and who wanted to know the reasons their loved one had died.
In my first month of clinical practice I had 20 conversations with bereaved families. I sat with people while they
wept or stared blankly into a future they could barely contemplate. Families told stories about their gifts and talents, their kindnesses and interests, their quirks and peculiarities. To my surprise, I found these conversations strangely uplifting.
I’M fascinated by the conundrum of death: by the ineffable change from alive to no-longer-alive; by the dignity with which the seriously ill can approach their death; by the challenge to be honest yet kind in discussing illness and the possibility of never getting better; by the moments of common humanity at the bedsides of the dying, when I realise that it’s a rare privilege to be present and to serve those who are approaching their unmaking.
Instead of being afraid of death I’m now in awe of it, and of its impact on our lives. By encountering death many thousands of times I’ve come to a view that there’s usually little to fear and much to prepare for. Sadly I often meet patients and families who believe the opposite: that death is dreadful, and talking about it or preparing for it will be unbearably sad or frightening.
The trouble is, whereas birth, love and even bereavement are widely discussed, death itself has become increasingly taboo. 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 sions of dying and death have replaced what was once everyone’s common experience ex-tired, perience of observing the dying of people around them, of seeing death often enough to recognise its patterns.
That rich wisdom was lost in the second half of the 20th century. Better healthcare and new treatments such as antibiotics radically changed people’s experiences of illness and offered hope of cure, or at least postponement of dying, that was previously impossible.
This triggered a behaviour change that saw the sickest people being rushed into hospital for treatment instead of waiting at home to die. But despite these advances, death awaits us all and the pattern of the final days, and the way we actually die, are unchanged.
What’s different is that 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.
And because of this we’ve lost the vocabulary and etiquette that served us so well in past times, when death was acknowledged to be inevitable.
SABINE is nearly 80 and dying of bowel cancer. As a young Frenchwoman she fought for the Resistance in World War 2 and came to England after marrying a British officer. But although she has a medal for her bravery she’s terrified of dying.
One day I’m stunned when the consultant in charge of our new hospice confronts her fear head-on.
“I wonder whether it would help you if I describe what dying will be like,” he asks her, looking her straight in the eye.
If he describes what? I hear myself shriek in my head.
He continues, “It’s a funny thing that, in many different illnesses that cause people to become weaker, their experience towards the end of life is similar. I’ve seen this many times. Shall I tell you what we see? If you want me to stop at any point, you just tell me and I’ll stop.” She nods, holding his gaze. “Well, the first thing we notice is that people are more tired. Their illness saps their energy. I think you’re already noticing that?” Another nod. She takes his hand. “As time goes by, people become more-tired, more weary. They need to sleep more, to boost their energy levels. Have you noticed that if you have a sleep during the day, you feel less weary for a while when you wake up?”
Her posture is changing. She’s sitting up straighter. Her eyes are locked on his face. She nods.
“Well, that tells us that you’re following the usual pattern. What we expect to happen from now on is that you’ll just be progressively more tired, and you’ll need longer sleeps, and spend less time awake.”
Job done, I think. She can expect to be sleepy. Let’s go . . . But our leader continues talking.
“As time goes by,” he says, “we find that people begin to spend more time sleeping, and some of that time they’re even more deeply asleep, they slip into a coma. I mean that they’re unconscious.”
He must be about to stop now, I think. I’m surprised that he has told her so much. But he continues, his gaze locked onto hers.
“We see people spending more time asleep, and less time awake. Sometimes when they appear to be only asleep, they’re actually unconscious, yet when they wake up they tell us they had a good sleep. It seems we don’t notice that we become unconscious.
“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 . . .”
She’s leaning towards him. She picks up his hand and draws it to her lips, and very gently kisses it with great reverence.
“The important thing to notice is that it’s not the same as falling asleep,” he says. “If you’re well enough to feel you need a nap, then you’re well enough to wake up again afterwards. Becoming unconscious doesn’t feel like falling asleep. You won’t even notice it happening.”
He stops and looks at her. She looks at him. I stare at both of them. I think my mouth might be open, and tears may even be leaking from my eyes. There’s a long silence. Her shoulders relax and she settles against her pillows. She gazes
at him as she says, simply, “Thank you.” She closes her eyes.
What my boss said that day has lived with me, as if on a cinema reel, for the rest of my career. It formed my future practice. It’s enabled me to watch dying in a way that’s informed and prepared; to be calm amid other people’s storms of fear; and to be confident that the more we understand about the way dying proceeds, the better we’ll manage it.
Knowing what to expect is immensely comforting to the dying person and their supporters. Once we know what we need to know, we can relax with each other. It’s surprising how relaxed a well-prepared family can be around a deathbed.
But I’ve also learnt there’s no right way for a person to approach death. Some, like Sylvie, the 19-year-old I treated who had a rare and terminal leukaemia, look death straight in the eye.
Not everyone’s prepared to accept what’s happening to them – and that’s fine too. Take Sally. Newly married, she talked excitedly of the babies she and her husband Andy would have together – she wanted at least four – and all the travelling they were planning.
What she refused to talk about was the fact that she was dying from a melanoma and had just weeks to live.
Somehow, I had to work with her family to manage her dying while preserving her denial. Eventually we agreed that if this was the approach she wanted to take, we had to respect her decision. Being able to say goodbye is an important part of the grieving process but in this case Sally’s family had to say their goodbyes without actually saying goodbye.
So they told her what they loved about her, they shared treasured memories from her life and remembered kindnesses they’d appreciated. But when she wanted to talk about the names of her children and the holidays she would take later in the year they went along with it, and this was how it remained until she slipped peacefully away a few days later.
OFTEN when we turn up in a ward the staff ask, “Why do you always come to see our most lovable patients? How do you get all the nicest people in your care?” I’ve spent a lifetime pondering this idea and gradually I’ve begun to see a pattern.
It is, in fact, a truth that almost all of the people we have the privilege of meeting towards the end of their lives are extraordinary. They tolerate their symptoms with courage. They adjust their hope from avoiding death to embracing each day as death approaches. They can let go of the tyranny of planning and worrying about the future, and simply bask in the present.
These people change the centre of their world from self to others. They focus on loving their loved ones, but that kindness also beams onto everyone else around them – their fellow patients in hospital or hospice, and all of us who care for them. They’re the patients who notice that a nurse looks tired or remember that the cleaner’s daughter is writing exams. They express appreciation, concern and gratitude. And we bathe in the light of their beneficence.
What’s going on here? What’s the transformational catalyst that reshapes a grumpy retired coal miner or a previously pedantic professor?
They’ve become, in some ineffable way, a bigger and more generous version of themselves, and the process is often invisible to them. They simply find that people around them are kinder, gentler, and with more forgivable faults than before. People approaching the end of life are grateful for the tiniest kindness. They appreciate the good intentions behind often
gauche expressions of support. They’re grateful for the experience of each moment.
The need to express gratitude to others is another of the last messages. “Thank you” is now a heartfelt statement of appreciation, not a mere courtesy. The last and most frequent of the last messages is, “I love you.”
Their love is deepest for those who are dearest, but it bubbles over into even everyday encounters with strangers and staff. In palliative care we look after people who’ve reached a phase in their lives when they unconsciously radiate love.
So, of course these are the favourite patients on any ward. Of course it always seems that the best people are dying. These are just ordinary people, like the rest of us, but they’re at an extraordinary place in their life journey, and all of us benefit from their compassion.
They’re not “saints”. They still have grumpy moments and periods of intense sadness, fear or anger about their fate. But they’re 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.
What would happen if we ever found a “cure” for death? Immortality seems in many ways an uninviting option. It’s the fact that every day counts us down that makes each one such a gift.
There are only two days with fewer than 24 hours in each lifetime, sitting like bookends astride our lives: one is celebrated every year, yet it’s the other that makes us see living as precious.