What happens as we die? | Kathryn Mannix (re-release)

0:05Hey listeners, it's TED Health and I'm Dr. Shoshana Ungerleider. In a world fixated on prolonging life, we often overlook the profound journey of its final chapter. In her TEDx Newcastle talk, palliative care physician Dr. Katherine Mannix invites us all into a crucial conversation about life, death, and the poignant moments in between. Blending empathy with expertise, she explains how modern medicine has helped us and failed us when it comes to confronting death. And she offers insights that reconnect us with a long-lost wisdom. Then join me after the talk for my own personal story of how one patient's death changed my life forever and led me to found endolproject.org, a platform dedicated to making end of life a part of life.

1:12human 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 hospital had nothing to offer once a person was so sick that their death was imminent.

2:26And 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.

3:05Why 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 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 hospital because there were antibiotics. There were really clever anaesthetics 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.

3:48There 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 hospital very often saved their lives, and that is fantastic. And yet... And yet, by taking dying people out of home and putting them in hospital, all. 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've spent the last four years choosing to train in the places where the most sick people were.

4:45And 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'd been working in a big teaching hospital. I'd learned a lot of medicine. and I'd seen a lot of dying. 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'd married a British airman. She'd come to live in England. She'd never lost her French accent.

5:31She 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.

6:16This was a profound existential distress and my boss said well we need to go and talk to her and 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 as you're dying.

7:04And 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 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.

7:54In 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. Or a period, we can't waken them. They're not just asleep, they're actually unconscious.

8:35And 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 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.

9:22But 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.

10:04We'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.

10:51And 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 a room where a family has been around a person who is in the act of dying and will 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.

11:53She 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.

12:22And my boss said to me, are you okay? And 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 a 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.

13:18It 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?

14:19Can 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.

15:17Death 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.

15:46That was Catherine Mannix at TEDx Newcastle. You know, I'll never forget the day I was still green from medical school when I met a patient in the emergency room. We're going to call him Mr. Jones. He was an older man who'd been a university professor, and he had a life story that could fill a novel. But here he was, frail and scared. He had lung cancer. His family was huddled in the corner nearby, and I knew they were all really scared. He'd arrived in the emergency room with severe shortness of breath. This left him unable to walk even short distances. So I looked at his labs and his chest x-ray.

16:39I noticed that fluid had built up in his lungs, which was a grim sign for someone with his kind of cancer. Mr. Jones was a kind man. As we talked about his symptoms, this really beautiful rapport developed between us. I explained to him that his condition had gotten worse and that we could make him feel better temporarily by keeping him in the hospital. But it was clear to me, his cancer had advanced. I took a step beyond the usual conversations that I had with patients that night, and I ventured into some more personal territory. I asked him about his understanding of his diagnosis and what he envisioned for his future.

17:28Tears started welling up in his eyes. He said, I've had an incredible life, a loving family, and all I want is to be at home with them. This plea was simple, but profound. Can I please go home? All I want is to be at home. And as I talked to him, I realized something crucial was missing from my medical education. Sure, I could read a chart, diagnose a disease. But what about understanding Mr. Jones the person? He wasn't just a case study. He was a father, a husband, a teacher. This hit me hard. How had I, and perhaps the medical field in general, overlooked this simple but profound desire? This realization for me was a gut punch.

18:28We're trained to fight diseases, but sometimes the fight isn't always what the patient wants. Mr. Jones wanted to spend his final days in peace, at home, not in the sterile environment of a hospital room surrounded by strangers. So with the help of a case manager and a social worker, we were able to get him home with hospice care. And he passed away a few days later in the place that he loved most. As I reflected on this experience, I realized the importance of two key elements in providing care that aligns with patients' wishes. First, having early conversations about their hopes and values. It's critical.

19:15It's about understanding their life goals and not just their medical needs. Second, the role of palliative care is invaluable. This care goes beyond symptom management. It's about nurturing the patient's mental, their emotional, and spiritual well-being. And recognizing that extending life is not the only priority. And palliative care should ideally start at the time of a diagnosis, years upstream from the end of life. Patients like Mr. Jones who engage in advanced care planning, meaning making their wishes known around serious illness and end of life, are less likely to spend their last days in a hospital or receive intensive care that may not add value to their remaining time.

20:07Palliative care has consistently shown to improve patients' quality of life, and in some cases, early palliative care can contribute to longer lives. For their families, being involved in these kinds of discussions can also be incredibly healing, reducing emotional strain and uncertainty. Unfortunately, there's a real lack of training in medical school on how to gently deliver bad news or how to guide patients through end-of-life care. According to the Journal of the American Medical Association, nearly 70 % of doctors feel unprepared for these conversations. my experience caring for mr jones was a moment that reshaped my entire approach to medicine i began to wonder what if our first question to patients wasn't about their symptoms but about their lives what if we started with what matters most to you instead of what's the matter with you.

21:15I've come to believe that a patient-centered approach isn't just beneficial, but it's essential, especially in end-of-life care. The conversations we're not having, the questions we're not asking, they're not just oversights. They're missed opportunities to provide care that aligns with what our patients truly need and want. But here's the thing. It's not just about changing how we talk to patients. It's about changing how we view them. They're not just bodies in beds. They're people with stories, fears, hopes, and dreams. Sometimes our job isn't to extend their life at all costs, but to make their remaining time, however long that may be, as meaningful as possible.

22:07Mr. Jones and so many patients since then have taught me that ensuring a good death is as important as ensuring a good life. Because at the end of the day, how we care for the dying says a lot about how we care for the living. And maybe, just maybe, in helping our patients find peace in their final days, we'll find a little more peace on our own.

22:37And that's it for today's episode. Thanks so much for listening. TED Health is a part of the TED Audio Collective. I'd love to hear your thoughts about the episode. Send me a message on Instagram at ShoshanaMD. This episode was produced by me and Costanza Gallardo, edited by Alejandra Salazar, and fact-checked by Vanessa Garcia-Woodworth. Special thanks to Maria Lages, Farrah DeGrange, David Biello, Daniela Balarezo, and Michelle Quint. I'm Dr. Shoshana Ungerleiter, and I'll talk to you again next week.