Instant Genius - What it’s really like to die

Episode Date: April 25, 2018

People used to die at home and everybody recognised the process, and now people die in hospital largely with doctors and nurses trying to stop it from happening. So we don’t see how gentle the normal process of a life winding to an end can be. Hosted on Acast. See acast.com/privacy for more information. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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largely with doctors and nurses trying to stop it from happening. So we don't see how gentle the normal process of a life winding to an end can be. You're listening to the Science Focus podcast from the BBC Focus magazine team. We're the UK's best-selling science and technology monthly, available in print and in several digital formats throughout the world. Find out more at sciencefocus.com or look out for us in your app store. Hello and welcome to the Science Focus podcast. I'm Alice Lipscomb Southwell, the production editor of BBC Focus magazine.

This week we tackle one of the last taboos. Death is the only certainty in life that we all share, and yet it remains something that few of us like to talk about. One person who's hoping to change that is Dr. Catherine Manix, an author and pallative medicine specialist whose book, with the end in mind, describes her experiences of treating patients during the final weeks, days and moments of their lives. Shortlisted for this year's Welcome Book Prize, Catherine describes what it's like to be with someone as they die,

what her patients can tell us about how to live, and why, ultimately, the process of dying can be much more peaceful and gentle than we're often led to believe. She talks to staff writer James Lloyd. So first of all, Catherine, could you tell me a little bit about your medical career and your background? What's your specific area of expertise? Okay, so I have worked in palliative medicine, which is the medical part, the doctoring part of palliative care since 1986. In fact, palliative medicine didn't become a recognised specialty until after 1986.

So I'm older than the specialty, which makes me feel quite old, really. but my training before them was I actually was working towards becoming a cancer doctor. So I did medical school and then I did different medical specialties around hospitals, which is the normal way into a cancer career. And then I did do a year working in our regional cancer centre. But I just found that the patients who were not going to be cured, but who had intriguing symptoms that they, could only live well if we tried to manage those symptoms well.

They were more interesting to me than the new and very exciting potential cures for cancer that were coming along that we had lots of academic, clever doctors chasing. I thought I might like to help find the cure for cancer, but it turned out that this was far more interesting. So I did a kind of sideways move at that point out of oncology, at quite a junior level in oncology. and there was a local hospice built around the same time. So I wrote to them and said, got any jobs.

And they interviewed me and said, well, yeah, okay. Come and train in palliative medicine with us. So it was all very lucky, very happenstance. And I just loved it from the very beginning. And so you went on to become a specialist in palliative care then. Yeah. For those who aren't familiar with the term, Can you explain what palliative care is and what its aims are essentially?

Yeah, with pleasure. So palliative care is care that is about trying to get the best possible management of a condition to allow somebody to live as well as they can. So that might be physical symptoms like pain or itch or breathlessness. Or it could be emotional symptoms like being anxious or feeling very sad and worried about the future. wondering how you're going to tell your family, what's wrong with you, those sorts of things. Or it could be the social impact of the illness, like it makes it difficult for you to manage running your life the way you used to, have a financial impact or a mobility impact, and also that kind of existential, spiritual part of being human. And I don't mean that in a religious context necessarily, although for some people it is a religious context,

but just the idea of who we are and what we're worth and what we're about. So palliative care thinks about each individual person in terms of physical, emotional, social and spiritual care. And to start off with, it was very much a cancer type of patient that we would see, and it was very much at the point where cancer treatments had stopped working, and it was inevitable that the person would die, that we would see them. But over the 30 years that I've been in palliative care, I'm really glad to say the recognition of our symptom management expertise means that we're brought in earlier and earlier to help people who are feeling wretched and who can be helped to be less symptomatic, even with an illness that they're going to be living with for a long time. So they're not dying. We see people very early in their cancer journey sometimes who are going to have treatment that's intended to.

to cure them, but the symptoms they've currently got that have made the cancer get diagnosed in the first place are so severe that they can't tolerate the curative treatment. So you might have a palliative care team working alongside a surgical team or an oncology team to enable somebody to have radical surgery or quite strong chemotherapy drugs and keep them well enough to get through the treatment to be cured. So you're not obliged to die just because you've seen a palliative care team. And I That's a really, really important message. It's not a death sentence, basically. I know.

That was the next thing I was going to talk about, though, was death. Because it is, I would say, the main topic of your book, and it's something that you kind of tackle head-on, really, in your book. Death is something that most of us don't like to talk about, myself included, really. Why do you think it remains such a taboo topic? I think it's becoming increasingly taboo, and I think it's quite complex. So, although I've said you're not obliged to die because you see a palisional. care team. You know, the simple truth is that a lot of the people we see do have advanced and life-threatening illness. And so over a lifetime in palliative care, I've seen an awful lot of people

die. And something that I've become aware of is how little people prepare themselves or their families for the whole sequence of events that's going to happen, not just the death, but how it's going to be to be progressively less well. People do talk about after they've died. They make a will they plan their funeral, those sorts of things, but they don't talk about the dying itself. If you look back 100 years, then life expectancy was much shorter than it is now. So changes in sanitation and preventative medicine and just the development of the health service and the technologies that we have now are enabling people to live into their 70s and 80s, and 90s. And it means that there's a whole generation of people who still have all of their

siblings and both of their parents, even when they're in their 50s and 60s themselves. And that's a huge change. So the first thing is that because we're living longer, we don't see people dying during our childhood and our teens and our young adult life, as people would have done 100 years ago. So dying is unfamiliar. The next thing is that because we've got really fabulous medical treatments and technologies now, we can stop people from dying in their prime of things that used to kill people. So infections can be treated with antibiotics and organs can be transplanted and kidneys can be replaced with dialysis machines. You know, there are lots of wonderful things that we can do that prevent somebody who would previously have died from dying.

and not just prevent them from dying, but allow them, restore them to full health, get them well enough to carry on living until the next life-threatening event happens to them. The problem is that because we send people who are sick enough to die and who could be restored back to health to hospital, it means that we carry on doing that, even when we have somebody who now has multiple things wrong with them is increasingly frail, whose organs are starting to wear out, instead of stopping and taking stock and saying, I wonder whether actually an intensive care unit and a ventilator or major surgery

or full-on cardiac resuscitation that's going to break all the ribs in this frail elderly person. Is that the right thing to do here? We haven't stopped to think, and it's very hard for the doctors to stop. to think at the point where somebody's in extremis. You can't kind of stop cardiac resuscitation to say, excuse me, are you sure this is what you want? So we have a new problem in healthcare, which is at what point do we start to recognise

that the person's body is starting to fail and therefore it's appropriate to have some conversations that say, where should our priorities be? Should we be continuing to push for length of life? Or should we be now talking to you about not pushing for length of life, but focusing on the comfort of the life that is left? In your book, you talk a lot about the, that we don't have, because death is quite a taboo topic, we don't have an understanding of death, I think. So I think one of my, most eye-opening bits from your book is where you say that normal death is less painful than normal childbirth.

Would you say that that's one of the greatest myths around death? Yeah, I think so. I think that because of those changes we've just talked about, that people aren't seeing normal dying. People used to die at home and everybody recognized the process, and now people die in hospital largely with doctors and nurses trying to stop it from happening. so we don't see how gentle the normal process of a life winding to an end can be. So the first thing is that the process of dying itself is not an uncomfortable process. It doesn't make you breathless. It doesn't give you pain. The difficulty is that, of course, if we're dying, we're dying of something.

We're dying of an illness. And if it's a heart disease or a chest disease, then it might be that we're breathless. and if it's a disease that's got lots of cancer spread into your bones, for example, it might be that that's causing you pain. So it's very important that there are people around who know how to manage the symptoms of that illness. But in the same way that birth is a normal process that everybody understands, dying is a process that can be understood and managed. It's a sequence of events that happens in a reasonably consistent manner from one

person to the next. And if you think about that kind of birth, death comparison, we know that if a mum who's about to give birth that's had good antinatal care, then she is far more likely to have a safe delivery. We're never going to promise her a comfortable delivery, but a safe delivery, because the antinatal care will have shown people what special things need to be taken into account here. Is the baby the right way up? Is it facing the right way around? Is the placenta in a safe place? Or is it low down? Do we need to do a cesarean for everybody's safety? Or can we have a trial of labour? Well, in the same way, if your doctors and nurses have got to know your condition and how to palliate the symptoms of your condition well during the last phase of your life, you can enter that process of dying with the symptoms of the illness well controlled. And then the only adjustments that need to be made are as the process of dying progresses, people become progressively less conscious. And so that's not the same as falling asleep.

But we are almost always fully comatose and unconscious by the time we take our final breaths. And that happens for short periods in the run-up to dying as part of the process. So we might need to change the way we give drugs if somebody's not consistently awake to swallow tablets. But good palliative care is lining you up for being able to die relatively comfortably. And certainly we know that women who have, you know, pain on a 0 to 10 scale, pain during labour is somewhere between, I don't know, 6 and 400, they still go back and have a second and third child. pain is part of the human condition.

Some days you have toothache, some days you have headache. The last day of your life won't be any different. It might be that there is some discomfort because that's the human condition. But the pain will not make you die and the pain is not being caused by the process of dying. And it should be possible to identify its cause and manage it. So if death for a lot of people can be a almost comfortable kind of process, does that mean that a lot of fear, a lot of our fear around death is kind of misplaced then in a way? Well, I think it does. I think we probably don't talk about it because we haven't seen it. And because we haven't seen it, but we're intelligent creatures as human beings, we don't tolerate a kind of vacuum of knowledge. We make assumptions and treat our assumptions as facts. So where do we? get information about dying from? Well, we watch it on soap operas. We see it on Hollywood. We read

horrible reports in the media. We play death as entertainment in games. So we've got all of these odd thoughts about death and dying. And they're very, very atypical. But because they're the only experience we have, we assume that everybody's death will be a little bit like that. And that, you know, to make good drama, you have to choose atypical dying. Because normal dying is actually a very gradual fading. And to be honest, if you're not the person it's happening to

or one of the people who loves that person, it's not going to be good drama. It's not terribly interesting. So if there's nothing to see, there's nothing to show on a screen. So that's not what film producers choose. So the myth gets perpetuated. And nobody goes away and says, you know, when my dad died, it was really gentle. And, you know, we watched his breathing change.

And somebody explained to us that sometimes the breathing, which gets just, it's automatic driven by your brainstem towards the very end of your life. It can be quite noisy because all of the tissues in the back of your body. throat are now very relaxed because you're deeply unconscious. So there's kind of snoring and funny noises. Kind of rattle, can't they? Well, I'll talk about the rattle in a minute because that's slightly different. But there are noises that people think could be groaning. And of course, if you thought that somebody was groaning and you loved that person, you'd be terribly upset. And in fact, it's just very, very deep breathing at a very automatic level through very relaxed muscles in the throat that are vibrating and making these noises. So actually it's really important

that we explain that to people. So just as a midwife will explain to a mum before she goes into labour that, you know, you'll have these contractions and they'll get stronger and you'll feel you want to push and explain the sequence of events. So doctors and nurses need to be explaining to patients that at some point during the dying process, you will be unconscious and then you're breathing will do this odd automatic thing that can make noises and we need people to understand that it almost certainly doesn't mean you're distressed. Now, if your family think you're distressed, we'll definitely come and check in case you are, but almost certainly it won't mean that. Now, you talked about the rattling noise and now that's a slightly different thing

and it's a really important message. The rattling noise is called. The rattling noise is called. when people are very, very deeply unconscious. They're so unconscious that they allow saliva or bits of phlegm in the lungs to just lie at the back of their throat and they don't try and clear it. Now, if you or I had saliva or I'm working my way through a cup of tea here while we're talking, I had a bit of tea in the back of my throat, you would hear me coughing and spluttering and trying to clear my throat. and it's a reflex. If you can feel it, you can't suppress the reflex. It automatically happens.

Right. If you are so deeply unconscious that you can't even feel that there's saliva in the back of your throat, then you won't attempt to clear it and the air that's going in and out of your lungs will bubble through it. And it makes a rattling noise. Right. I see. Okay. Now that tells me that my patient is deeply unconscious.

Very relaxed, not feel. their throat at all. But actually, if you haven't been part of that explanation because, you know, you're the son who's just arrived from the other side of the world and there's a story in the book that describes this, then you will walk into the room. You'll find everybody else sitting around looking contented. You'll find this person that you love, lying in the bed, making this not pretty noise. And you'll want to know why on earth somebody isn't doing something about it because he sounds as though he's having a horrible time. So it's really, really important that we help people to understand the process of dying and the odd noises that they might experience

and help them to recognise that that's part of being unconscious and it doesn't mean that the person is experiencing distress. So we talked there about the idea that we shouldn't fear death as much as we do because it isn't, you know, a horrible, painfully excruciating experience for possibly a majority of people. So if we shouldn't be afraid of death, how should we approach it? How should we think about it? Oh, what a good question. So we can't stop the idea of being separated by death from being something that is sad for people who love each other and they're going to be separated. And we can't stop it from being anxiety. provoking in the sense that you might wonder how your family are going to cope afterwards,

and you might wonder what happens after dying. Some people are very frightened of the idea of oblivion, and some people are very comforted by it. Some people have great depth of faith in an afterlife, which comforts them, and other people have faith in an afterlife that frightens them. So there are some things that we can't explain. And so I'm not saying this is going to be easy or that there will never be moments of anxiety on the route. But we need not fear that the process of dying is terrifying, uncomfortable, feels like choking, is associated with crescendos of pain. None of that is what we see. So I guess the part of what we need people to start to think about is at what point would they like to start to have the conversations about if I'm not going to get any better than this, do I want to continue having treatment that is simply stringing out my living and now is extending my dying?

or do I want to start to think about having treatments that are entirely focused on helping me to have fewer symptoms from my illness whilst I allow natural dying to happen? Or some kind of halfway house between those things. Okay, I also wanted to learn a little bit more about your own personal experiences, working in this area. Over your career, you've obviously been with a lot of people during their final moments. I was wondering, how did you deal with the emotions that must. they must get stirred up during these times. Do you have to try and keep an emotional distance from

what's going on? I guess is this something you get better at, the kind of further along in your career you get? I should have an answer for this question, shouldn't I? I get asked quite a lot and I'm still working out what it's about. So first of all, I think that medicine is a very, very rich arena of very diverse specialties and our individual personalities will suit different careers. So, I probably wouldn't have been a great cardiothoracic surgeon because I'm not great when I'm terrified and their job is terrifying. But I am very calm at a time when other people are terrified and that's probably a good attribute in palliative care. So I think that because there is this balance all the time between seeing families at a time that is very sad for them, but it's also very close and rewarding and important for them.

And because very often I meet people who think they're never going to feel well again, they're just going to have pain or be breathless or have tummy ache until the day they die. And of course, the science of palliative medicine has a lot to offer those people. So they feel well again for a period of time. I think what happens is there's a balance between the challenge of repeatedly seeing patients who you may have become quite close to actually now reaching the ends of their lives and dying. And the reward of seeing those people be well enough to make decisions and be in the place of their choosing or make a second decision if things change and they need to.

So it's not that the dying isn't sad. that there are enough other good things happening that in a really rewarding career. I'm terribly glad that I did it and I can't see myself having been as satisfied doing anything else. So you're helping people to have a good death in a way. You describe yourself, I think it's a death wife in the book.

Well, it's something that occurred when I was out with one of my colleagues one day and we were in a lift with a midwife. So for, remember when babies used to be, stolen from hospitals. So our child protection rules in our hospital were that no baby who was born in the hospital could be moved around the hospital without being in one of our maternity cots escorted by a midwife, even if, as this child was, they were escorted by both parents. So this midwife was taking this newly born baby and these beaming parents down in the lift to take them to the front door of the hospital. And they had their

new little car seat and they were going to take their baby home. Everybody was so delighted. And my colleague and I got into the lift and they were all standing there beaming. And we were feeling pretty pleased with ourselves because we just managed to very complicated scenarios around deathbeds and had managed to enable families who were struggling in different ways to be able to get alongside the process and be less frightened and be with a person who they loved dearly who was dying. So as we're getting into the lift, my colleague said to me, I love our job.

And I'm saying, yeah, I do too. You know, isn't it fantastic, those wonderful moments, that great affirmation that we can get when we can enable a family to come together in that way. So just as we were approaching our floor, this midwife said to us, so what do you do? and my colleague said, oh, pretty much what you do, really.

And then we stepped out of the lift. And this midwife just caught sight of my colleague's badge, which obviously said palliative care specialists as we stepped out of the lift. And she just looked completely astonished. And I thought, do you know what? She's so right. The parallels are so many and so great. And there's something really important and special about those moments of a family

forming around a birthbed and a family affirming itself around a deathbed. So obviously you get to know some of these patients and then you see them get closer to the end of their life. Do you find that people's personalities and their outlooks change as they get closer as they get nearer to death? I guess people's fundamental personalities don't really change. So grumpy people stay grumpy. And, you know, cheerful people stay relatively cheerful. But there is an interesting change that comes over people, which is that they stop worrying about the small stuff,

that there's something about realizing that you're reaching the end of your life that seems to make people think about viewing things benevolently and being compassionate with people. So we notice when we go, I've worked in a hospital palliated care team for the last 10 years. And you pitch up on a ward to say, I've come to see Mr. So-and-so or miss such and such. And the nurses will say, why do you always come and see the nicest patients? It's always our nicest patients you get. You think, well, what's that about?

And I think what it's about is they're just normal people, of course. But they're at this really special point in their lives where they understand what's really important. So these are the patients who will notice that the nurse looks tired. or will ask a doctor how they got on when they went to do that job interview or those exams last week, that kind of thing. And I think it's that they are becoming a kind of more magnificent version of their usual selves. So they still have grumpy moments. But there's something very wonderful and loving really about the state that so many people get into, as they know they're approaching the ends of their lives.

And it's really about them and their dear ones. They want to tell people how much they've meant to them. They want to give thanks. They want to tell people that they love them. But it kind of bubbles over and we all bask in it a little bit at this way. So it's a really very special thing. I was wondering, have your experiences affected the way you live your own life and the kind of things that are important to you in life, do you think?

I guess they must have done. But I was wondering in what way has your life been affected? Well, my kids would tell you that we talked about death a lot and grown. But actually, what's come to pass is that when they have been then accompanying relatives on deathbeds, and they've had that experience, they weren't frightened about it. So they actually do know what to expect. And that's a gift that they can take into their adult lives. So when they have to deal with deaths of other more senior family members and then eventually deaths of their own.

parents, I can be a bit more confident that they're not going to be frightened of the conversations that we might need to have around about that time. I guess knowing that life is temporary, makes every day special, makes every day precious. And some of the time, I can manage to live in the moment in that way. But, you know, I'm not a really great human and I'm very good at just drifting off and getting anxious about things. And then something will happen at work that will just remind me, oh, yeah, that isn't really that important, is it, in the big scheme of things? So, yeah, maybe I'm a little bit better at being mindful in the moment.

And the last question I had for you, Catherine, is what changes would you like to see in the way we talk about death, you know, as a kind of society with our families, with our friends? Yeah, how would you like that to change? I think until we can have better understanding of what normal dying is like, there's not much point in changing the conversation. Because if you get people to talk about dying and what they're talking about is Hollywood dying, then you're just promoting the myth. So what I would really like is some good accessible material that says, guys, it's like this. So just like on the Arches last year, there was a very, very long piece about coercive. control that was very intelligently put together about domestic abuse. We need some good,

proper, dying stories in soap operas and in novels and in documentary dramas. And so I've written this book, which is just stories. It's not technical. It's not medical. It's just trying to put back into the public domain stories about people living while. they happen also to be dying. And you've read the book. You know, some of the stories are quite early on and the people have only just found out that they're not going to be cured from this illness.

But it goes through with different people and their families and several of them are actual deathbed stories. Just to try and help people to be a bit familiar with the normal process because until we understand that, we can't have intelligent conversations that help us to comfort each other and prepare each other. for the very ends of our lives.

That was Catherine Manix talking about her experiences in pallative medicine. Her book, with the end in mind, is available now. In the April issue of BBC Focus magazine, which is on sale now, we search for exoplanets by taking a look at Project Blue. This audacious plan has a single goal in mind to photograph an exoplanet in the habitable zones of the nearest sun-like stars in the hope of finding a potentially habitable planet. Plus, you can find out more about real-life robocops, how freezing patients could save their lives,

and how geoengineering might cause a climate war. Did you enjoy this podcast? If you liked what you heard, then why not subscribe and leave us a review? You can find us on iTunes, ACAST, Stitcher and many of your favourite podcast apps. Thank you for listening to the Science Focus podcast from the BBC Focus magazine team. We're the UK's best-selling science and technology monthly, available in print. print and in several digital formats throughout the world. Find out more at ScienceFocus.com or look out for us in your app store.

This podcast is sponsored by Name, Audio and Focal. The texture and emotional depth of music can be lost through digital sources or poor signal. Name Audio believes you can have digital precision with analog warmth. Alongside French acoustic specialist focal, name creates high-end audio systems, combining innovation with craftsmanship. So you can listen to music, just as the artist intended. Discover more at name audio.com. Ambition comes in all shapes and sizes.

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