EP. 129: THE LINK BETWEEN LOVE AND LOSS

WITH RACHEL CLARKE

Sep 11

WITH RACHEL CLARKE

A journalist-turned-palliative care physician shares how we can make sense of our finite existence, why love and loss are inextricably linked, and how our memories can honor those who pass away.

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Episode Summary

To the best of our knowledge, humans appear to be unique among animals in our awareness of mortality — at least in our capacity for existential reflection about death in an abstract, cultural, and symbolic sense. With this capacity comes profound psychological experiences, from our search for meaning, to our struggle with grief, to a yearning for the spiritual.

Our guest on this episode is Dr. Rachel Clarke, a palliative care physician based in the United Kingdom who entered medicine after an initial career in journalism. As she would discover, her love for language and storytelling has turned out to be one of the most important ways she helps patients heal in some of the most devastating moments of their lives. As a writer. Dr. Clarke is the author of multiple best selling books, including Dear Life: A Doctor's Story of Love and Loss (2020), Your Life in My Hands: A Junior Doctor's Story (2017), and Breathtaking (2021), which was adapted into a TV series of the same name. Her writing, imbued with both grace and grit, invites readers to confront difficult truths about mortality, suffering, and the inequities of the healthcare system, while also offering a vision of medicine that is as deeply human as it is healing. Over the course of our conversation, we discuss her journey to medicine by way of journalism, her reflections on the moral imperatives that drive her work, the power of storytelling in comforting patients, why suffering is inextricably connected to love, and more.

Dr. Rachel Clarke is a palliative care doctor in the National Health Service (NHS) and the author of three Sunday Times bestselling non-fiction books. The most recent of these, Breathtaking (2021), was adapted into an acclaimed television series, broadcast on ITV in 2024. It reveals how she and her colleagues confronted the height of the COVID-19 pandemic. Dear Life (2020), depicting her work in an NHS hospice, was shortlisted for the 2020 Costa Biography Award and long-listed for the 2020 Baillie Gifford Prize. Your Life in My Hands (2017) documents life as a junior doctor.
Before going to medical school, Rachel was a broadcast journalist. She produced and directed current affairs documentaries focusing on subjects such as Al Qaeda, the Iraq War and the civil war in the Democratic Republic of Congo. She continues to write regularly for the Guardian, Sunday Times, New Statesman and Lancet among others, and appears regularly on television and radio. Inspired by a visit to Ukraine during the conflict in late 2022, Rachel founded a UK-registered charity, Hospice Ukraine, which supports the work of local palliative care teams in Ukraine.
Her new book, The Story of a Heart, is a moving and unforgettable story about how one family’s grief was transformed into a lifesaving gift.
In this episode, you will hear about:
• 3:12 - Why Dr. Clarke switched careers from journalism to palliative care
• 9:46 - The challenge modern doctors and patients face when it comes to thinking about mortality
• 15:09 - Supporting a patient’s psychological suffering through conversation
• 20:31 - Grappling with what Dr. Clarke calls the “essential paradox of being a human being” — our awareness of mortality
• 33:41 - The experience of watching a person die and the reverence we hold for the bodies of the dead
• 43:05 - The doctor’s dual responsibilities of navigating both science and human emotions
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and healthcare executives those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging, and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Tyler Johnson: [00:01:02] To the best of our knowledge, humans appear to be unique among animals in our awareness of mortality, at least in our capacity for existential reflection about death in an abstract, cultural and symbolic sense. For better or worse, this capacity comes packaged with profound and complex psychological experiences, from existential anxiety and our search for meaning, to our struggle with grief and a yearning for the spiritual. Our guest on this episode is Dr. Rachel Clarke, a palliative care physician based in the United Kingdom who only entered medicine after an initial career in journalism. As she discovered, her knack for language and storytelling has turned out to be one of the most important ways she helps patients heal in some of the most devastating moments of their lives. As a writer. Dr. Clarke is the author of multiple best selling books, including Dear Life A Doctor's Story of Love and Loss, and Your Life in My Hands A Junior Doctor's Story. Her 2021 book breathtaking, was adapted into a TV series of the same name. Her writing, imbued with both grace and grit, invites readers to confront difficult truths about mortality, suffering, and the inequities of the health care system, while also offering a vision of medicine that is as deeply human as it is healing. Over the course of our conversation, we discuss her journey to medicine by way of journalism, her reflections on the moral imperatives that drive her work, the power of storytelling in comforting patients, why suffering is inextricably connected to love, and more. Dr. Clarke reminds us that in the moments of greatest vulnerability, there lies a profound opportunity for connection, compassion, and ultimately, transformation.
Tyler Johnson: [00:03:04] Rachel, thank you for taking the time to join us and welcome to the show.
Dr. Rachel Clarke: [00:03:10] Thank you very much. It's a pleasure.
Tyler Johnson: [00:03:12] You know, I know that you have written many, many words about this very question, but nonetheless, I'm going to go ahead and ask you. We ask almost everybody to start out with, how did you end up in medicine? What was what is your origin story?
Dr. Rachel Clarke: [00:03:25] Well, my route was particularly circuitous because I came from a family of doctors and nurses going back through many generations, and I was one of those kids who was good at science at school. So that means all your teachers say you're good at science, do medicine. And I also had a bit of a weight of family expectation on my shoulders as well. And I was really worried I was choosing medicine for the wrong reasons. I was also a child who loved writing, drawing, art, and in fact, when I was very, very small at junior school, I had to write age seven, a little book called All About Me, in which we wrote what we wanted to be when we grew up, and I wrote a writer and drew a picture of myself writing a book so very prescient. Um, I chose English arty subjects, did an arts degree, and spent a decade working in television as a broadcast journalist making current affairs documentaries. But all the time I have this nagging fear that I had made the wrong decision. Partly, I always felt like a bit of an imposter as a journalist for various reasons, but mainly I have this love of and fascination with medicine that grew and grew and grew as I got older. I used to talk to my dad obsessively about his interest in cases that patients that had struck him. And I just realized in my late 20s, I was still just about young enough to give it a go. So I did the science A-levels by myself at the end of a long day at work in TV, got my place at medical school, and then abandoned my career as a journalist to start out at med school. And literally from day one, sitting there, middle of the front row of the lecture theater, you know, I was Tracy Flick with my hand up, asking a thousand questions. I was in my element. I just loved it. And I felt like I was home. This is what I was born to do and have never stopped feeling that since.
Tyler Johnson: [00:05:39] Yeah. We somehow seem to have a proclivity on this program for finding the people who were torn between being writers or philosophers or theology, theologians or whatever, and doctors, and then somehow end up doing some version of both. So it's a pretty comfortable story for us. So then once you got into medicine, how did you decide what you wanted to do and what did you end up doing? What what did your your medical practice end up becoming?
Dr. Rachel Clarke: [00:06:08] So I think I had an unusual perspective from medical school from that point onwards, by which I mean, first of all, I was a decade older. So in the UK, as I'm sure you know, it's an undergraduate degree. So most people are 18, incredibly young to start out as a doctor, as a medical student, I was nearly 30, and I also had been the kind of current affairs journalist who had a real passion for bringing to a public stage the stories of people who were typically overlooked and not heard or silenced. So I, I would go off to the Democratic Republic of Congo and make a film about the civil war there, and thrust that story onto the world stage and sort of demand that people listened, heard these voices. And I think at medical school, it was immediately apparent to me that patients as a whole, but some groups of patients in particular, are vulnerable and their voices are not heard. They are easily overlooked or silenced. And one of the groups of patients for whom I could see that was very clear was patients with terminal illnesses. So if you are dying in a UK hospital, there is a very good chance that you will be somewhat marginalized, overlooked. You can't shout loudly for yourself. You can't advocate for your needs. You don't have a kind of a condition that attracts celebrity support. A lot of noise in in public Discourse, and I could see these patients in great need who often were suffering not because they were dying, but avoidably, because they weren't getting the medical care they needed. And that immediately sort of drew me to those patients.
Dr. Rachel Clarke: [00:08:06] And I also knew that I wanted to work in a specialty where the patients were very sick indeed, were very unwell. And I think that was partly because I had chosen medicine late in life and given up another career to do it. I wanted to be working in a branch of medicine where the stakes felt really high. They were life and death, and there was something potentially really profound you could do to help your patients. And palliative medicine. The specialty I chose is just the most wonderful specialty for that. It's not sexy. It's not high status. You know, if you want to impress people at a at a party, definitely choose neurosurgery or cardiothoracic surgery. No one is impressed when you say you're a palliative care physician. They look a bit shifty and awkward and say, aha, that must be really depressing. I adore it because it's a branch of medicine where you are working with the whole patient, perhaps more than any other. A patient is confronting this radical disruption of their life, what it means to be them. They have discovered that their life, which they sort of imagined would go on forever. Even though we know we're mortal, we're brilliant at living in denial of that. They've learned that their life is going to end sooner than they want, and all the disruptions and just losses that go with that are psychological, as much as physical. And so it's an incredibly rich and wonderful part of medicine to inhabit.
Tyler Johnson: [00:09:46] Yeah. You know, it's interesting. We were speaking with one of our guests. This was a number of of a few months ago. But we observed together that one of the ironies of practicing medicine in 2024 is that so on the one hand, I was talking actually with a friend who was diagnosed with cancer yesterday. I promise I'll bring these threads together in a second. But I was talking with a friend who's not really involved in medicine, whose mother was diagnosed with cancer. I was having this discussion yesterday with them, and I was trying to describe to them the technology of car T cells. So for people who are listening, who may not be familiar with that, this is a thing that we do now sometimes in cancer, particularly in lymphoma and leukemia, where we circulate your blood outside of your body, we distill down this one very specific kind of white blood cell, this one specific kind of immune cell. Then we put it through this very complicated process to teach it to especially recognize cell surface receptor or a cell surface marker on cancer cells that is hopefully not present on other cells. Then put the white blood cells back in your body and allow the now educated white blood cells to hopefully attack the cancer cells while leaving everything else alone.
Tyler Johnson: [00:11:01] And somewhere in describing this to this layperson friend of mine, they got this incredulous look on their face like I must be describing science fiction. Which, yes, I mean, it sounds unbelievable. It sounds like science fiction, right? We're going to take your white blood cells out of you, train them to attack cancer, and put them back in. It sounds like something from Isaac Asimov or whatever, but the observation that we were making with one of our guests a few months ago is that the technology has become so advanced, and we have become so good at manipulating the human body in ways that can often rescue people from the direst of circumstances. That I think the sort of unwritten curriculum has now become that any failure of us to make our patients effectively immortal is either a failure of the people researching the therapies, or a failure of the people delivering the therapies, or a failure of somebody, but in any way, it is a failure, right? So that the lack of immortality of our patients means that we are failing. And that is both an awfully heavy and, of course, an absurd weight to be placed on ourselves. And yet we seem to do that all the time, if without quite saying it out loud.
Dr. Rachel Clarke: [00:12:20] Completely agree. And of course, the other potential failure that I think sometimes patients feel themselves is actually their mortality is their failure. And I'm sure you encounter this often in oncology, as I do in palliative care where a patient is exhausted, they don't want the next round of chemotherapy. The last one made them feel rotten and sick, and the next 1st May only give them a few more months of extra life. And actually, secretly, they'd really rather spend that time living as richly as they can for a smaller period of time than endure yet more toxic treatments. But they're terribly afraid that if they if they say that to their families, their loved ones, they may be sort of cajoled into keeping going. They're letting them down. They're too weak, or actually, they're just failing. They're failing as a human being. And I see that often where a patient sort of you ask them what they want, would they like to carry on and have more treatment, and they don't even want to answer that question on its own terms. They're trying to answer that question in terms of what they think their family wishes for them. And of course, invariably you talk to the family separately and they say, we're really worried. Dad's tired, he's exhausted, but we don't want to suggest, you know, stopping treatment because maybe in that case, he'll feel like we're giving up on him.
Dr. Rachel Clarke: [00:13:49] And sometimes the most valuable thing you can do in that moment is not prescribe or not prescribe anything at all. It's to bring people together to have that conversation themselves. I think one of the things that I wish I had been taught at medical school, and I wish was taught now to medical students, is not just every conceivable fact about the treatments. Of course, we need to know the 10,000 ways in which a liver goes wrong and the thousand ways in which you can fix it. But I wish I had been taught the vital importance of the judgments we make about whether or not to intervene and how we make those decisions. And crucially, more than anything else, I wish I had been taught that the only person who really matters in those discussions is the patient themselves. They're the boss. It's their body, it's their treatments. And we have to enable and empower our patients to make those decisions for themselves, giving the best guidance we can. But it's it's really difficult. And of course, withholding a treatment is a much harder thing to do than offering it in most cases, as a doctor, it's much easier to say, yeah, let's try X rather than suggest X might not be the best way forward.
Tyler Johnson: [00:15:09] Your discussion of making those difficult decisions reminds me of Sunita Puri, who has been a guest on the program and who is also a palliative care doctor who's an author, has told us that when she teaches her fellows, and also, I think they do a fair amount of teaching to other doctors, as I gather, is common with palliative care doctors trying to help people to see a different perspective. One of the things that she often says is sometimes you need to be the bird in the tree, and sometimes you need to be the bird above the trees. And I think that that is true in a lot of different ways. Actually, one thing that I have noticed with a lot of medical trainees of the current generation is that it can sometimes be hard. They're so good, even if we're talking about delivering aggressive, invasive care to a patient, they can be so good at analyzing the, you know, evidence around making all of the particular decisions in a particular algorithmic tree that sometimes it can be harder, actually, and paradoxically, for them to zoom out and just say, okay, but broadly speaking, what is wrong and what are we trying to do to fix it? And how likely is that to work? Right? Like the big picture, sort of take home points from the case can sometimes actually be harder than the the very, very small decision points with all of their related data.
Tyler Johnson: [00:16:27] And so I think that Doctor Puri's observation about being the bird above the tree sometimes is very, very important. By the same token, I'm also brought to think about the fact that I, as an oncologist, a medical oncologist who works a lot with palliative care doctors. I find that there are frequently times when I have come to see a particular case in a particular way, and having someone who is looking at the case from a different vantage point and who is not quite so on the inside in terms of, you know, this cancer knowledge and that cancer knowledge and this clinical trial and that Kaplan-Meier curve and this median overall survival benefit and all of the things that are sort of the way that oncologists talk about the world. Having somebody who doesn't bring that as their first framing to whatever the question is, is often deeply valuable. And I feel like that's often what the sort of the palliative care doctors bring that sometimes medical oncologists lack.
Dr. Rachel Clarke: [00:17:28] Mhm. Yes. Although that's, that's not very nice to your specialty to, to suggest it's a lack. It's, it's they're complementary perspectives aren't they. Sure. But yeah, I completely agree. I think there's something very, very valuable in taking that sort of huge step back. Now you're far flying far above the tree and starting out with a patient. When I meet a patient for the first time, I will tend to talk a little bit with them about the kind of person they are. What's their situation at home, what's important to them, what matters to them? And a really powerful question, even in a first conversation with a patient, I find, is particularly if they have a short prognosis, is the question, what are you most afraid of at the moment? The question are you afraid? Is is a bit crass. If someone knows that they're in the last weeks of their life, they're very likely to be afraid. But that particular question, what are you most afraid of is so powerful? Because it invites a patient to confide with you their deepest, darkest fear and just the act of verbalizing what that is immediately has the potential to denude it of some of its power, because there's nothing as frightening as what the human imagination can conjure. It's kind of limitless. So if you think about sort of suffering and pain at the end of life, there are no limits to that.
Dr. Rachel Clarke: [00:18:57] But if you confess that that's your greatest fear, and then in a conversation with someone who has seen many people die, start to talk about how you can be helped with that fear that can be very valuable. I think words in medicine, we all know words are crucial. We have to be able to communicate clearly and comprehensively and empathetically. But but I think words in palliative medicine particularly have this immense power because you can use them to literally take away. Melt away some of a patient's suffering. If they're terrified of what life will be like when they are dying, and you can have conversations that reassure them on that front. You have literally managed to do for their psychological suffering what morphine does for their pain simply through a conversation. And I think that's as a wordsmith, as a as a journalist for ten years. That's something that I take very, very seriously because I know that words are a superpower. Rudyard Kipling, who wrote the Just So stories and The Jungle Book, famously said, words are the most powerful drug known to mankind, and I think that's completely true. There are certain kinds of anguish in our patients that a simple attention to what your patient is telling you, the words you use in response can have immeasurable power.
Tyler Johnson: [00:20:31] So speaking of words, I want to turn back now. So at the beginning of our conversation, you mentioned this interesting analogy, which is that you feel like the stories that you bring from your palliative care patients are analogous in some ways to stories that a journalist might bring from a faraway country. Right? I know admittedly very little about the Democratic Republic of the Congo. I don't know what the politics are like there. I don't know what food they eat. I don't know what the landscape looks like. I don't know what the weather is. I assume probably hot, but I really have no idea when I don't even know those big picture things. I certainly don't know anything about the daily travails of a person who lives there, or poverty, or crime, or governmental corruption or whatever the things are that you might, might report on from there. Which is just to say that if you go there and you learn about those things and then you report about them. Then that is a way for me to come to know them vicariously through you. And I feel like as a palliative care doctor and and I see this to some degree, though perhaps less so as a medical oncologist. What is so unusual, as you point out, is that you spend your life living, as it were, in the foreign country of the sort of the borderlands that lead up to the realm of death.
Tyler Johnson: [00:22:03] Right. And that's very unusual. We've done a remarkably good job in polite society of and you sort of alluded to this obliquely previously, of pretending that death doesn't exist. And then when it happens, sort of hiding it away. Right. It's sort of a almost like a dirty word that we sort of ignore. And then, you know, when it happens, the person is off to the mortician. You know, we maybe see the body or don't, depending on whether the casket is open or closed and have the funeral and and that's that. And we sort of move on with our lives. Right. Which is very different from how it has been through most of history when death was a much more present reality. And so I'd like to spend our last, uh, 35, 40, whatever we have left minutes talking a little bit about what you have learned by being a frequent companion to people who are traveling to that place. And I wanted to start this at the beginning of one of your books entitled Dear Life. You talk about this person who I guess was a, I think, a drama writer or something, a Dennis Potter. He sort of televised a program about his own approaching demise, which you watched with your father, and you recount watching that.
Tyler Johnson: [00:23:18] And so you quote him as saying, the only thing you know for sure is the present tense, and that Nowness becomes so vivid that almost in a perverse sort of way, I'm almost serene, he said, the paradox prompting a lopsided grin. You know, I can celebrate life last week, looking at the blossom through the window. When I'm writing, I see it as the whitest, frothiest blossoming blossom that there ever could be. And I can see it. Things are both more trivial than they ever were and more important than they ever were. And the difference between the trivial and the important doesn't seem to matter. But the nowness of everything is absolutely wondrous. So that's the finish of the quote from this, Mr. Potter. And then you write for a moment, and I knew it was the same for dad. You're watching the program together with him. I felt like I had been handed the key to everlasting happiness. Experience. The world with the heightened intensity of a child. Inhabit now, not tomorrow, or a sad trail of yesterdays. Sees it live the moment like it is your last. Needless to say, the humdrum anxieties of everyday existence soon blotted out any narrowness from my mind.
Tyler Johnson: [00:24:33] As Potter himself put it so beautifully, we're the one animal that knows that we're going to die. And yet we carry on paying our mortgages, doing our jobs, moving about, behaving as though there's eternity. So I see that passage as very interesting in the sense that you begin with an idea that I think is common to many people who think about death for a moment, which is this idea that if you think about death, it will supercharge your ability to, as we like to say, live in the now or what have you. Right. But then you also return then to this idea that even if you feel supercharged by that idea, you can only hold on to the charge for a few minutes or a day or whatever. And then you're back to the mortgage and back to, you know, getting to work on time and whatever. So talk a little bit about what it's like as a person who confronts the reality of death, often to grapple with what I imagine almost feels like sort of the burden of the idea that you somehow should be eternally living in the now, or with the incandescence of childhood, as you say, versus the reality of, you know, paying the mortgage and cleaning the dishes and getting to work every day.
Dr. Rachel Clarke: [00:25:44] Right. And, uh, not an easy question to answer, but I will give it a go. So for me, what you've just articulated is the essential defining paradox of being a human being. So we're the one species that knows from the moment we're old enough that we are going to die. We can pretend to ourselves that's not going to happen, but we do all know it. And what that entails is, is monstrous, if you think about it for a second. That means that every single thing, every single one. Every person that we love in the world, one way or another, is going to slip through our fingers, no matter how tightly we try to cling on to it. Everything that we cherish in the world is going to be lost to us one way or another. So to some extent, I think our modern cultural kind of denial of death, it's it's even a taboo word. You know, the BBC sometimes will refer to a prominent person as having passed away rather than died. Always incenses me, I always tweet about it and say, please say what's happened. But you can understand that response because actually, I have immense sympathy with people who find it difficult to talk about death and dying because of the enormity of what being mortal entails. For us, it entails a staggering and exquisite quantity of loss of grief. And there's an incredibly close proximity for me between death and love. By which I mean, if someone you love dies or you know they're going to die, the more you love that person, the more exquisitely painful that knowledge is going to be. And when that person dies, the more you love them, the more the pain of grief is going to hurt you.
Dr. Rachel Clarke: [00:28:01] And to some extent, the quantity of grief of pain is commensurate with the quantity of love. It hurts as much as it should hurt. If they are your father, your wife, your child, you know. God forbid. Then the extent of the pain, the agony is absolutely Fitting, commensurate with the extent of the love. And now all of this love has turned into sort of terrible pain. It's become love with nowhere to go, because that person, that beautiful thing, is no longer in the world. And I think we constantly, as human beings navigate that tightrope. The more we invest in the world, the more we love it. And I don't even mean people alone. I mean every bit of this beautiful world, if we love the environment, if we love trees and rivers and polar bears and all the things that we as a species are denying or rather sorry, killing, then we are opening ourselves up to pain. The more we love it, the more we are going to suffer from the grief and pain of loss. So in a sense, the more you invest of yourself into the world, the more you're opening yourself up to pain. However, the only alternative to living like that is to say, okay, I don't want to go there. I'm not going to love anything. I'm going to protect myself. I'm going to build up walls and barricades, and that way no one can hurt me. Thanks very much, because I've put a lead box around myself. I'm just fine. I'm on my own. I'm protected. I'm not investing.
Tyler Johnson: [00:29:46] I am a rock. I am an island.
Dr. Rachel Clarke: [00:29:48] Exactly. And that's no way to live at all. And I believe that that is the terrible knife edge that we are all struggling to walk upon as human beings. And one of my favorite writers is the is the British poet Ted Hughes, married to Sylvia Plath. And he famously wrote a letter to his son where he addressed this fact. And he wrote in this letter, the only calibration that counts Ounce is how much heart you invest. How much you ignore your fears of being hurt or humiliated or caught out. And he goes on and he writes. The only thing that people regret is that they didn't invest enough heart. They were too scared. They didn't love enough. They didn't care enough. That's what people care about at the end of their life. And I carry those words around with me at work, in the hospital, and they are utterly true. On your deathbed, no one gives a damn about how much wealth they accrued, how much status they acquired. They don't even care that they never got published in the New England Journal of Medicine, although I'm sure many listeners are dreaming of that. The only stuff they care about is the people they love. That's literally it.
Dr. Rachel Clarke: [00:31:08] And so for me, the Dennis Potter challenge of how do you maintain the narrowness of life, how do you live in the moment when you still need to empty the dishwasher and, you know, fill up the car with oil? Is the defining sort of existential challenge for all of us as human beings. And it's really hard to do that is the answer. It's it's so hard being living as a as a mortal human being. And I think we we try to do it with our little faltering, feeble hearts, with as much courage as we can muster, ideally with other people close around us, because nothing is as powerful, I think, as the love of the people we care about. We do it the best we can and we fail and we're rubbish. And we think, God. This entire week, all I've thought about is whether or not I'm going to do well enough in my med school exam. I can't think of a single experience I'll ever remember from this week. We all fail. We're we're frail and fallible, but we try our best. We keep investing our heart. And the beautiful thing, paradoxically beautiful thing about working in palliative medicine is I am surrounded by people for whom that challenge has never been more acute, but also never been easier because they are living in proximity of death.
Dr. Rachel Clarke: [00:32:38] They know that their death is coming. So all of the irrelevant, extraneous stuff is stripped away, and they are able to treasure and savor the now ness, because suddenly the shift of perspective of having a prognosis of weeks or days means only the important stuff remains. And I guess I try to learn from that myself. Not not so much as a doctor, just as a human being. I try to cherish the good stuff, and definitely a lot of the things that, you know, I'm in my early 50s now, the things that some of my friends get bothered about, like their gray hairs and their wrinkles and the fact that they can't fit into their size eight dresses anymore. Sod that stuff. If you are lucky enough to have a wrinkle or a gray hair, then you need to just get out there and live your life. Because I look after patients in their teens and they never get those things. So you struggle and you try your best and you fall short, but you keep investing your heart.
Tyler Johnson: [00:33:41] Yeah. You know, I listeners have heard me quote before, but I am still always touched by this scene, as you may be aware. C.s. Lewis, you know, spends his life talking about the reason for suffering in the universe and whatever in this very sort of abstract, distanced way. And then, quite late in his life, falls in love with a Jewish poet from New York, who then, just after they marry, is diagnosed with metastatic cancer and basically is confronting her mortality in effect on their honeymoon. Yes. And as portrayed in the play Shadowlands, as they're sort of on their honeymoon, staring out at the English countryside, she brings up her cancer diagnosis and the fact that she doesn't have very long to live. And he says, what are you doing? Don't talk about that. Now we're on our on our honeymoon, in effect, you know, I don't want to think about that. We'll think about that later. And she sort of pauses for a minute and then looks at him knowingly and says, no, but Jack, which is what she calls him, you don't understand. The pain, then, is part of the happiness now? Yes. Right. In other words, as you say in some way, that is, I think, difficult for us to articulate and even harder for us to accept or really understand. Suffering and love are I don't even know if it's so much that they are inextricably connected as it is that they are the same thing. Right? As you put it. The depth of our love for anything, right? The the depth of our appreciation of a sunset heightens the difficulty of the sun finally setting completely in the sky, going dark, right? Everything from that small, fleeting moment all the way to the depth of the love that we have for another person, and then the the fact that eventually that person will die.
Tyler Johnson: [00:35:27] There's a doctor here in the Bay area whose writing resonates with me. Who? Speaking of that, The Fact of Death wrote, sometimes when I work in the hospital, I am called to pronounce a death. That is, I must certify that a patient has expired, and this is what I find. Within seconds, what was previously a person transforms into a body, nothing more. Death halts, the breathing stills the heart, extinguishes the spark and robs the face of laughter, anguish, joy or sorrow. Molecularly, as soon as the heart stops, the body's cells become deprived of oxygen, and without that nourishment, cellular breakdown quickly ensues. At the bedside I see lying before me a lifeless, motionless corpse, a collection of cartilage, bone, nerve and sinew with no order or purpose, no coordination or movement, no control or beauty. Suddenly, what was just a being consists more of meat than meaning. And as an oncologist who has seen my patients die, it is striking that a person can that that can happen, right? It almost seems unimaginable if you think about it for a minute, right? If you think of a person who is sitting next to you, your significant other, or your dear friend, or your child or your parent or whatever. The idea that that thing could actually happen to them seems almost impossible to wrap your heart and mind around. And yet, as a palliative care doctor, that's something that you confront. Maybe not literally every day, but all the time.
Dr. Rachel Clarke: [00:37:03] Very, very regularly. Yeah. And I remember having this very specific thought when my father died. He died at home of cancer. He had a beautiful death. As good as a death can be with his family around him. You know, symptoms really beautifully controlled. And immediately after he died, I held his hand and I could feel the heat from his body cooling, and I. I was desperate, desperate to hold the heat of his life within his hand as it cooled, enclosed in mine. I wanted to almost scream with the horror of his heat, his life ebbing away, feeling that process happening. And of course, I couldn't stop it. And I felt his palm cool, of course. And then gradually his whole body became cold. And I think there is something both prosaic about that fact. It is the one thing that's guaranteed to happen to every single one of us, and absolutely devastating about that fact. Simultaneously, I would slightly push back on the idea that once a person has died, they are reduced to just stuff that that deliberate use of the word meat, which is very challenging, very provocative. And I have no doubt that was used deliberately and with care, because of course, that's not how we treat a human body immediately after a person has died or a long time after a person has died. We treat human bodies with an immense amount of respect and reverence and all of those rituals of mourning, some of which are public rituals, are all about treating this object as something that is more than an object.
Dr. Rachel Clarke: [00:39:07] So we still treat a human body as something that has value, that deserves respect, that cannot be treated, cannot be defiled. It would be, you know, almost sacrilegious to to do something unspeakable to, to a human corpse. And that's an immense taboo that that crosses different cultures, different ages around the world. And interestingly, you know, in Canada or in Ireland, when sometimes indigenous peoples or in the case of Ireland, women who were sort of locked up in religious institutions for for the crime of having a child out of wedlock when those children died in institutions and were sort of buried in mass graves, which years later are dug up, we are horrified as a society and as individuals, that human beings, bodies could have been treated with such utter disrespect, discarded as though they're nothing more than rubbish. And I love that fact because it's not logical. It's not practical. You know, probably if you're another species, if you're I've mentioned polar bears, if you're a hungry polar bear, I have no doubt you'll eat the corpse of your dead child because it might keep you alive. And that has to be done. But of course, we are not. We are not any other species. We we treat dead human beings with care and solicitude and respect and and love precisely because we're creatures of story as well as logic. And the care and respect we show towards each other transcends death in a way that is really fascinating and wonderful.
Tyler Johnson: [00:40:52] Well, in in a sense, it almost it feels like our societal way of doing the very thing that you were doing with your father. Right? It is as if we are societally insisting that we will imbue this even lifeless body with a sense of remembrance and an enduring sense of respect and meaning, whatever is happening biologically, this will always in some sense be or represent the person that we know and love right? And we will never let the warmth completely ebb away.
Dr. Rachel Clarke: [00:41:33] Precisely. And so a dead human being actually will never be just a lump of meat, because it has an afterlife that exists in us, the people who are still living, and that afterlife goes on. Just to mention my father again, something he did probably two days before he died. We were chatting and he was in bed and I was lying next to him, chatting to him. I sort of let myself down terribly because I suddenly burst into tears and just said, dad, I don't want you to die. I was like a child. The thought of him dying was just too much. And it was actually a fortuitous, in a way, moment of weakness on my part, because it allowed him suddenly to fully occupy the role of father and protect his daughter in a way he hadn't been able to do. I had been protecting him for a long time at that point and caring for him. He took my hand and said, don't cry, Rachel. And he took my hand and placed it on my chest. And he said, I will be in there. That's where my afterlife will be, and it's the only thing that matters. And he placed my hand with his big father's palm on top of it, on top of my heart, and gave me comfort by saying that's where he would still live on. And of course, that's wholly unscientific. There's no logic to that at all. But he was absolutely right. And of course, still does. He still lives on.
Tyler Johnson: [00:43:05] Well, and to your point, and one of the things that we have reinforced repeatedly on the podcast, it is, in fact, if I had to choose the theme of the podcast, which is probably a silly endeavor, but if I had to, it would be that there are things that do defy logic. They defy biological reductionism that nonetheless, as best we can gather, you know, we're always straining at bits of light in the dark, but nonetheless, as best we can gather, do seem to be true. Right? And I agree with you that in taking care of many patients who die, perhaps the most persistent truth that feels like it forces itself upon me is precisely that. That none of us can be reduced just to molecules and electric currents and mental algorithms. Right? The whole is more than the sum of its biological parts. And exactly how that is the case, or sort of how it all fits together or what it means is maybe impossible to understand and certainly impossible to articulate. But I feel like oftentimes the deep fear that we have created around death is precisely because we are afraid that if we confront death, we will find that there is nothing more to it but that that that absolute biological reductionism obtains in the final analysis. But my observation, as you in effect, allude to with that very poignant story discussing that encounter with your father, my experience has been precisely the opposite of that, that in fact, when you confront death in its naked reality, when you see loved ones gathered around the bed of a person who is dying, it is precisely the contradiction of that thing that we fear. It is that while it is true, on the one hand, as you pointed out earlier, that love and suffering are perhaps different manifestations of the same force, it is also true that as a person approaches death that does not somehow negate or abolish or eradicate the love that has defined their life, right? If anything, it heightens it and somehow makes it so that it means even more.
Dr. Rachel Clarke: [00:45:32] Mhm. I completely agree, and I say that as someone who comes from a very I'm quite a militant perspective in the sense that I, I'm an atheist, I'm a sort of hard scientist by nature in many ways. I can't bear any kind of mumbo jumbo, you know, pseudoscience can't bear it. My husband loves listening to podcasts about UFOs and strange phenomena, and I just tear my hair out and beg him not to. It sort of offends me, but I also think that it's so self-evident that a biological, reductionist framework only helps us understand ourselves. To a degree. It's incredibly powerful. It's the bedrock upon which good medicine is based. But if you really want to understand a human being, you can't do that remotely by looking at a at a molecular level. It just doesn't give you the information you need. What you need to do is sit down and read Anna Karenina or another wonderful book, by which I mean meaning, stories, motivations. What drives a human being, what propels us forward in this strange world are love, hate, jealousy, envy, these incredibly powerful emotions. They are what shape the world they are, what shape one human life. And a biological reductionist model of explanation just doesn't help with any of that.
Dr. Rachel Clarke: [00:47:09] So to my mind, we have two different heuristics or frameworks through which to understand human behavior, and they complement each other. And I think the wonder of medicine, the thing that makes medicine so endlessly captivating and magnificent for me as a doctor, is precisely the marriage of science and humanity that is the essence of all good medicine. You cannot be a brilliant doctor if you are only about the science. You have to be an empathetic, humane human being to be a good doctor. And the marriage of those two is the thing that sets medicine apart from almost any other career. I suppose to some extent all parts of healthcare require a way of working that is both hard scientific and sort of human emotive. But that's it. That's why medicine is magnificent. That's why I wouldn't want to spend my life doing anything else. And it's why I look forward, genuinely look forward to going to work every day. Because I bring to bear all of my kind of scientific, empirical training and all of my humanity to the task of helping this patient right now in front of me. And it's a privilege to do that.
Tyler Johnson: [00:48:34] Yeah. You know, I spend I'm a medical oncologist, as I said, but I spend a lot of my minutes and hours at work doing medical education. So I work a lot with medical students. And then I, I direct the the oncology fellowship program at Stanford. And one of the things that I'm very conscious of, but I have become much more conscious of it in the course of working on this podcast is that, especially for medical students, we have a very conscious way we as medical educators, of teaching them a form of reductionism in the sense that we teach them how to look at a patient and think about the patient in terms of organ systems, and think about a patient in terms of symptoms. And then, you know, anyone who has been through medical school will know terms like the one liner and the problem list. Right. And let's be clear, right, I'm a drill sergeant. As far as those things with my medical students. Right. I will just make them be very disciplined in learning to break their patients down into constituent biological parts, because they need to do that to understand what's going on, pathophysiologically, and how to try to put things back together. However, I fear that sometimes what we do Inadvertently in doing that is we teach them to be very good reductionist thinkers, and then we forget how to teach them to see the humanity again, and especially with the rigors of training and the lack of sleep and the burnout and moral injury and all of the 9000 things that you add on top of that, I fear that we somehow, we sometimes inadvertently leave them seeing the enterprise of medicine as a fundamentally reductionistic science, and forget to teach them how to add back in the humanity and the art.
Dr. Rachel Clarke: [00:50:33] Precisely. So, in essence, you go through your 5 or 6 years of medical school, and what's unintentionally taught to you is that human beings are actually on the margins of your job as a doctor. You know, they have been pushed into the periphery. We don't think about human beings. We don't think about life and death. You're far too busy trying to learn 3 million facts. And of course, you need to know those facts. You need to. You've got to be hard as nails. You've got to be good at your core diagnostic management plan job. But I think what happens is and like you, I do a lot of teaching with medical students and young doctors. I love it, but I think you come out of medical school and your comfort zone, and you probably don't have a very big comfort zone at all. Maybe your zone is one molecule big. It's that reductionist process, isn't it? It's trying to come up with a problem. List the solutions. God forbid you sit down on top of trying to do all of that and have a conversation with a patient in which you tell them that they're going to die or what they are thinking about, given that they've just been told that news by someone else. And the other thing that you're not taught very often, or perhaps at all at medical school, is the fact that medicine is a is the art of finding a medium between objectivity and detachment and empathy.
Dr. Rachel Clarke: [00:52:10] You tend to learn the first of those in medical school. But the truth is, when you're a practicing doctor, you're working with real people, whether you feel equipped to do that or not. So if you try to behave like a sort of brilliantly erudite automaton as you go through A and E or whatever part of medicine you inhabit, you're going to run into psychological difficulty because you're going to be seeing children who are really sick, people who are dying, people who are frightened. And you have to find a way of navigating that territory with humanity and sensitivity, because otherwise you will not be a therapeutic doctor. No one will want to see you, because you'll be cold and hard, and nobody tends to say to you, as a medical student, this is really hard. You might think that diagnosing why this patient is short of breath is the hardest challenge, but you'll get really good at that. That will be bread and butter eventually. But this challenge of steering a path between hard and soft, objective and subjective, being detached and being involved emotionally, that is the number one challenge. And anyone who pretends that it's easy, they're either fibbing or they're so burned out that they've lost touch with themselves as a human being and therefore their patients as well.
Dr. Rachel Clarke: [00:53:40] So that's one of the things I try to encourage students to think about, because if we don't talk about that, you can end up accidentally teaching students that somehow this must be easy. And if you find it difficult, you're not a proper doctor. You're not a good doctor. Whereas every great doctor I know struggles at times with their emotions. You know, personally, I'm regularly involved in heartbreaking situations at work, and I make myself as hard as nails in the moment. Because if, for example, I'm telling a young child that mummy is dying, my emotions don't matter in the moment. I have got to do the best possible job I can of supporting that child, and then I can cry in the car on the way home, or I can talk to my team and feel upset with a colleague at work, and I will allow myself to feel once I'm removed from the clinical situation. But the strategy of pretending that didn't affect me because I was hard as nails in the moment. That way lies burnout and mental health problems. So the more we can talk about this and the fact that it's one of the very specific things that makes medicine both an extraordinarily wonderful job and a really hard job, I think the better, you know, let's have that conversation.
Tyler Johnson: [00:55:08] Yeah, I think that's a beautiful note to end on. A reminder to all of us. And I think especially, you know, one of the beautiful things about medicine is that because the training path is so long, virtually all of us, unless you are the, you know, wet behind the ears, brand new medical student on your first rotation, all of us are in some kind of a teaching capacity, right? Whether it's the senior medical student teaching the junior or the intern teaching the senior medical student, or the supervising resident to the intern, whatever it is. And I think that all of us, in whatever role we are currently teaching, If we can take moments to emphasize and normalize what you were just discussing, the fact that it's hard because it's meant to be hard, and actually that the difficulty of medicine in sort of a parallel way to the fact that suffering is a measure of love. The difficulty is a measure of medicine's meaning, right? It's hard because it's real. It's hard because what we are doing matters, and because we are in the thick of the human experience. And that is beautiful even on days when it's really tough.
Dr. Rachel Clarke: [00:56:31] Precisely, absolutely. That's the essence of medicine, isn't it? And the incredible thing is, as a doctor, as a medical student, no matter how bleak the circumstances, the scenario that a patient faces, there is always something you can do as a doctor because even if there are no treatments, there is nothing to offer. You have yourself, your humanity, and if you are willing to put yourself out there and present yourself to a patient and say, I know your suffering, I am here with you. You are not alone in this moment. You are giving that patient something immense. You are giving of yourself to that patient, and it is so powerful, and it always has the potential to make things a little bit better. What a gift to have a job where we can do that.
Tyler Johnson: [00:57:31] When all other cures have failed our presence and our words will never be gone.
Dr. Rachel Clarke: [00:57:38] 100%.
Tyler Johnson: [00:57:39] It has been an hour that went much too quickly, Rachel, and we so deeply appreciate your writing and all the good you do. And thank you so much for being with us today on the show.
Dr. Rachel Clarke: [00:57:49] Absolute pleasure. I loved the conversation. Thank you so much.
Henry Bair: [00:57:57] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the Doctor's Art.com. If you enjoyed the episode, please subscribe, rate, and review our show, available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.
Tyler Johnson: [00:58:16] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient, or anyone working in healthcare who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:58:30] I'm Henry Bair
Tyler Johnson: [00:58:31] and I'm Tyler Johnson. We hope you can join us next time. Until then, be well.