TRANSCRIPT: What Happens As We Die: Kathryn Mannix

Here is the transcript of Kathryn Mannix’s TEDx Talk titled ‘What Happens As We Die?’ at TEDxNewcastle conference.

Listen to the audio version here:

TRANSCRIPT:

Dr Kathryn Mannix – Palliative Care Physician

Human beings are the only animals capable of contemplating their own mortality, and they’ve been doing that for thousands of years. And yet somehow, in the very recent past, we have lost the practical wisdom of what happens as people die. I think that that’s a problem. And if you agree with me that it is a problem, then we have to work out what we’re going to do about it.

When she was in her mid-twenties, in the 1920s, my grandmother was already deeply familiar with the sequence of events that happened to a human person as they were coming to the end of their life. And that’s because, as a woman, and it was usually women’s work, she was doing what women had done for centuries. Looking after people at the very end of their lives, in their own beds, in their own homes, supported by their own people, because a hospital had nothing to offer once a person was so sick that their death was imminent.

And yet, when I reached my mid-twenties, in the 1980s, I had none of her wisdom and understanding and knowledge of dying, and that was even though I’d just finished five years at medical school. As a newly qualified doctor, I’d spent five years being trained to stop people from dying.

And actually, if a death happened, it was a thing that was seen as a medical disaster. It was a thing that was embarrassing. It was a thing of which we do not speak.

Why the difference? And why within just a couple of generations?

Well, think about what happened to medicine over the course of the 20th century.

It was not worth going to the hospital when you were dying in the 1920s. But by the 1960s, 70s, 80s, and onwards, think of the fantastic progress that had been made, so that people who were so sick that they might die, of course, we took them to the hospital because there were antibiotics. There were really clever anesthetics that allowed surgeons to spend a long time unpicking things during operations.

There were new and very sophisticated treatments for cancers, for heart failure, for kidney failure. There were intensive care units. There was transplantation of organs, some of that pioneered in this very city. Medical progress was astonishing. Taking dying people to the hospital very often saved their lives, and that is fantastic.

And yet, by taking dying people out of home and putting them in the hospital, we changed our understanding of the process. We lost our ownership of the process, and we gave it to healthcare, and we forgot what dying looked like.

So, having been qualified for just over four years, I find myself in a new job. Having originally intended a career in cancer medicine, I have spent the last four years choosing to train in the places where the most sick people were.

And then I realized that actually what was really interesting to me was the detective journey of symptom management and the emotional integration of feeling well enough to live a little bit during the very end of life, and I went to work in a hospice. But I have been working in a big teaching hospital, I had learned a lot of medicine, I had seen a lot of dying.

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We had a patient in the hospice. She was a memorable woman for many reasons. She had been a member of the French resistance during the Second World War. She had married a British airman, she had come to live in England, she had never lost her French accent. She had a cloud of glorious white hair, like a halo. She had piercing brown eyes, the kind of gaze that you feel a person can see your soul. She was self-contained, she was a little bit aloof. In fact, she was a little bit scary.

One day, she told the nurse who was looking after her that she was terrified of dying in agony because if she were to die in agony, she might despair in God. And if she were to despair in God, as a French Roman Catholic, her belief was that that would be a mortal sin, so she would not be able to go to heaven, and heaven was the place she knew her husband was waiting for her. This was a profound existential distress.

And my boss said, “Well, we need to go and talk to her. You should come. You’ll find this interesting.” I was 26. Do you remember 26? It’s that kind of age, the last age when you know that you know everything. So I went along wondering what I might learn because I thought I was quite good at pain control.

That conversation changed my life, it changed my career, and it’s brought me here. Sitting on her bed with me on a little footstool so I can see him and her and the nurse sitting on the chair, he said to her, “I’m concerned that you’ve got worries about what might happen if you’re dying,” and she said yes. She knew him well, she trusted him.

And he said, “I’m sorry to hear that, and I wondered whether it might help you if I describe to you what usually happens as a person is dying.”

And I’m sitting on the stool of all knowledge thinking, “Well, you can’t tell her that because I’ve seen lots of dying and I know they’re all different.” And she said, “Yes, please.”

And he said, “Well, I’ll describe what we usually see, and if it gets too much, you tell me. I promise I’ll stop. The thing that’s really interesting, Sabine, is that as people are dying, it doesn’t really matter what the illness is that they’re dying from, the pattern of events is very similar. We see people becoming more and more tired. It’s harder and harder for them to find the energy to do things. In fact, they recharge their energy not so much by eating and drinking but by sleeping. And as time goes by, what we see is that people sleep more and they’re awake less, and if they want to do something important, they should take a snooze before it.”

She nodded, and she got hold of his hand. “As time goes by,” he said, “we see people are asleep for longer, they’re awake for shorter, and something interesting we notice that they don’t is, maybe it’s medicine time or there’s a visitor, we need to waken them for a period, we can’t waken them. They’re not just asleep, they’re actually unconscious. And when they waken, they tell us they’ve had a lovely sleep. It turns out that human beings don’t recognize when we become unconscious. And so, at the very end of somebody’s life, they’re not just asleep, they’re actually deeply unconscious. And when the brain is unconscious, the only part of it that’s still working is the part that’s working their breathing.”

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By now, she is sitting right up in bed. She’s got hold of one of his hands, and she’s stroking it. She’s nodding at everything he says. And in the meanwhile, I’m sitting on my stool, horrified that he seems to be describing dying to a dying person, and that feels to me to be really not very okay. But she is mesmerized.

“By the time the brain is deeply unconscious,” he’s saying to her now, “the only bit that’s still working is the bit that drives the breathing.” And so, breathing cycles we don’t normally see start to happen. Reflex, automatic breathing, cycles from very deep breaths, becoming shallower and shallower, and then going back to the beginning again.

Cycles of fast breathing that gradually become slower, maybe with pauses, and then back to the beginning again. The person can’t feel their throat, they don’t notice if they breathe out through their voice box, making a noise. Families might think that they’re sighing or groaning or uncomfortable. We’ll always check, but it’s part of this reflex breathing.

Saliva or mouth cleaning fluid won’t irritate their throat, it won’t make them cough or swallow. They just lie there with a little pool of fluid sometimes at the back of their throat. It’s not in the way, air is moving in and out of their lungs, and it bubbles through that little film of fluid. But families can mistake that for drowning or choking.

So one of the things that we’ll do, Sabine, if your nieces and nephews are here, is we will make sure we explain to them what is happening to you. She’s stroking his hands, she’s nodding, she is absolutely taking in everything that he says.

And then he says, and I think, “Oh my goodness, he’s going to the last breath.” And then, during usually one of those phases of slow breathing, there’ll be a breath out that just isn’t followed by another breath in. There is nothing special about the last breath. It’s so not like on the television or in cinema. There’s no rush of pain at the end, there’s no sudden panic, there’s no feeling of fading away.

Sometimes we who work in palliative care, and I’ve subsequently discovered this to be true, sometimes we will walk into the room where a family has been around a person who is in the act of dying, and we’ll realize the person has stopped breathing and the family hasn’t noticed yet because the Hollywood finale that they’re waiting for hasn’t happened.

She got hold of both of his hands, she shook them in hers, and then she pulled his hands to her face and she kissed them. And then she closed her eyes, she laid back on her pillows, I just watched her relax, and in her own inimitable and aloof way, she told us that we were no longer required.

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And my boss said to me, “Are you OK?” I said yes. And I went to the kitchen to blow my nose and dry my eyes, and think about what just happened.

Two huge ideas exploding in my brain at the same time. One is, how have I never noticed that? That pattern that he has just explained, I have seen hundreds of times. But I was the most junior doctor, it was my job to stop the person dying, remember? So I was so busy worrying about this person’s oxygen levels and that person’s pulse and this person’s kidney function that I didn’t stand back and see that there’s a pattern going on here.

We can describe the process of ordinary human dying, and it’s as much a process as the process of giving birth is. It has stages, we can recognize them, we can pace ourselves, we can work out where we are in it. But even more fascinating was that realization from watching Sabine’s reaction, that we can describe ordinary dying to a dying person and it shines the light of understanding and information into that dark place where all their fears and imagination were at play.

I’ve gone on in my career in palliative care to have that conversation thousands of times, countless times. I always offer to stop. I’ve never been stopped. But what happens at the end is that relaxation, that moment of, well, that isn’t what I was expecting, followed almost immediately by, can you tell my family that? Can you tell my wife, my husband, my kids, my parents? That’s not what we’re expecting, and I think we can do that.

So losing the wisdom really matters, and we can’t leave it to palliative care people or even medical people to reclaim that lost wisdom one family at a time. This is a massive social public health issue, and I invite everybody who’s listening to step up.

The reason my grandmother understood about dying was that she’d seen it alongside people who knew it, who described to her as the process was happening, what she was seeing so that she would understand and not be afraid. And it requires all of us who are mortals, all of us who love other mortals to step up, to say enough. That is not a medical event. It’s a social event.

It’s a deeply personal event, and we can understand it, we can describe it, we can console each other, we can accompany each other, we can reclaim dying.

Thank you.