The Lost Art of Dying | Dr. Lydia Dugdale

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The Lost Art of Dying | Dr. Lydia Dugdale

February 2, 2021

Lydia Dugdale — Medical Doctor, Physician, and Ethicist — discusses the Lost art of Dying in this interview conducted by USC student Quincy Guenther. • Like, share, subscribe to, and review this podcast. Thank you!

Transcript

Welcome to the Veritas Forum. This is the Veritaas Forum Podcast, a place where ideas and beliefs converge. What I'm really going to be watching is which one has the resources in their worldview to be tolerant, respectful, and humble toward the people they disagree with.

How do we know whether the lives that we're living are meaningful? If energy, light, gravity, and consciousness are in history, don't be surprised if you're going to get an element of this in God. Today, we hear from medical doctor, physician, and ethicist, Lydia Dugdale of Columbia University, as she discusses the Lost Art of Dying in an interview with University of Southern California student Quincy Guenther. My name is Quincy Guenther and I have the pleasure of interviewing Dr. Lydia Dugdale, and she's the director of the Center for Clinical Medical Ethics and Associate Professor of Medicine at Columbia University.

She also founded the Program for Medicine, Spirituality, and Religion at the Yale School of Medicine, where she was also Associate Director of the Program for Biomedical Ethics. Hopefully I got all that right. She's written a book called The Lost Art of Dying, Reviving Forgotten Wisdom, and it explores practice of dying well from historical, philosophical, theological, and artistic perspectives.

It's really an awesome read. And particularly interesting to me, as like many of you who are tuning in, you've been able to see kind of on the news COVID deaths over and over and over again. And then particularly in my life, I've had some people at, I go to a really small church that I attend.

And a couple of my parishioners or co-pouritioners have had some sort of like scares in the last couple of weeks. One good friend of mine has come to cancer, and another one actually had a heart attack that he survived. So it's been like really kind of a maybe tumultuous times for a lot of people.

And in terms of having to think about that, it's become sort of come to the forefront of a lot of our minds. So thank you so much for coming on. Yeah, my pleasure.

Great to be here with you, Quincy. Yeah, and I hope this will be super useful and insightful to all of the viewers. Yeah, so I'd love to start on a more personal note and ask you a little bit about how you became acquainted with the topic and specifically like what it was like to grow up with your grandpa if you could describe him and like what that was like.

Sure, yeah. So I talked about my grandfather in the book, but he, my grandfather was a World War II bomber pilot and he flew B-17s. But while he was in flight school, his plane crashed during takeoff, the engine malfunctioned.

And his flight instructor actually was beheaded during the crash, lost his head. My grandfather suffered a public fracture, multiple spine fractures, was hospitalized for a couple of months. And then he was supposed to have an honorable discharge, but he really wanted to serve and he ended up being granted permission to return.

And then became a pilot was a bomber in World War II and then was shot down during World War II over a potato field in Germany was taken prisoner of war and then, you know, stayed for a while in the prison camp during the coldest winter on record in Germany that year, Germany in Poland. I think he was forcibly marched different places. But anyway, so this was this extraordinary man who was a real go-getter, kind of a larger-than-life personality.

He was hilarious. He loved to make jokes. But he also always talked about his death.

He was always thinking about his mortality. I think he felt that he sort of escaped death so many times. So one of the first orders of business after he returned from the war married my grandmother, they got cemetery plots.

And so it's just from the beginning, it was sort of we have our stuff in order. You know, he was on good terms with the undertaker, having conversations with the undertaker. He was always threatening to write us in or out of his will.

One of the grandchildren got a new tattoo. Up and out of my will, it was out of the stuff. So death was just in the water, you know, so to speak.

It was a part of our conversation. And it wasn't something that was scary. It was just a reality.

It was a fact of life. So I think that framed me. It made me not really afraid.

It wasn't taboo in my household. We could talk about it. And even as a kid, right? I mean, it's yeah.

So it's pretty amazing. It's not something that it's not a shared experience for me, but I can imagine. I guess I can try to imagine what that would have been like.

So maybe that moves us towards what you've written about, which is this lost art of dying. And so two questions. So for our viewers, what is the lost sort of dying that you're referring to that you're referring to? And then in terms of this art, has it been lost? And what why do you think that it's been lost? Sure.

Yeah. So I'm a medical doctor. As you said in the intro, I know a bunch of people have joined since the intro.

So I take care of adults, which in adult medicine tends to be a lot of older folks, especially baby boomers and sort of all the way up. In that context, I have taken care of many patients who I would say have not died well. And this was something that from the very beginning of my medical training really affected me.

So this not dying well, you know, often manifest as kind of languishing in the intensive care unit with sort of a tube in every orifice, as they say, and sort of these prolonged hospitalizations where everyone knows, you know, this patient is not going to get out of the hospital alive. And yet at the same time, no one wants to give up hope, especially the family, right? So you're stuck in this sort of difficult place of having technology to keep people alive, sort of indefinitely almost, it can feel that way and certainly feels that way for family. And yet not seeing it lead to sort of a flourishing, not seeing it lead to a good result and certainly not to recovery and restoration of previous life.

So this was something that I'd seen so many times in the hospital. And the other aspect of this is that so many of my physician colleagues themselves were unable to talk to patients about their mortality. So I had colleagues who knew for sure their patients were dying.

Maybe it was widely metastatic cancer that was refractory to multiple rounds of chemotherapy. They knew their patients were dying, but they wouldn't even say it to their patients because my colleagues themselves are also afraid to die, are also afraid to talk about death, right? Just not all doctors are sort of comfortable talking about it. And so I had these experiences again and again and again.

And in the back of my mind, I kept thinking what would help patients be able to acknowledge their finitude, that is their finiteness, right? Their mortality, the fact that one day they will die without getting hung up on the sort of morbid aspects of it, but also sort of enabling them to plan kind of like how I saw my grandfather do this. He sort of, you know, got his stuff in order throughout his lifetime, right? My grandfather had his funeral written, the songs and the readings and all that. He had that written 20 years before he died.

I mean, the man was, he was ready, right? And so you ask about this lost art. So this lost art then is actually something that I stumbled upon more than a decade ago now. And it's called the Ars Mauryendi and Ars Mauryendi is Latin for the art of dying.

And it refers to a body of literature that developed during the aftermath of the mid 14th century bubonic plague outbreak that took the lives of up to maybe as many as two thirds of Western Europeans. And these were really handbooks on how to prepare well for death. But it was, it was the stuff he had to do throughout life.

It wasn't kind of saving it up for the end. You know, I'm dying now I need to figure it out. But it was what do I do throughout my life to anticipate my finitude and prepare well.

And I thought, Oh, wow, you know, this is amazing. What if we had some sort of modern iteration of an Ars Mauryendi? Yeah. And one thing that was particularly appealing to me is that the Ars Mauryendi, it even though it's initial version came out of the Western church, it was actually quickly adapted by all different religious and non religious groups.

And so you know, suddenly everyone not suddenly by the 1800s, I would say, most people regardless of background had some version of a handbook on preparing well for death. And they were really very popular for about 500 years. And it's only been in the last 100 years that this art of dying so to speak was lost.

Right. And so that's what I seek to revive, you know, to resuscitate if you will, this, this lost art. Yeah.

And you talk a little bit about in the book, the hospital system and sort of the development of society and how that's played into sort of the disappearance of the heart. Could you like talk a little bit about maybe what you think has happened there and why that's sort of faded into the background? Sure. You know, there are a few, there are many things.

It's kind of a complicated story of how we went from dying at home to dying in a hospital. In part, it has to do with, well, it has to do with many things. I'll just, since we're in the era of COVID, I'll say this, you know, the 1918 flu pandemic really wreaked havoc on society.

And that was at the very tail end of World War One. So you have World War One, massive loss of life. Right.

Then you have the flu pandemic, massive loss of life. And the last thing anyone wanted, especially in the United States, was to get hung up on death, right? By the time you hit the 20s, which was a time of immense economic prosperity, the last thing people wanted to do was think about it. They wanted to get on with life.

They wanted, you know, they wanted the cutting edge. They wanted the newest thing. So there was cars and there was dancing and women got the vote, right? There are all these things happening.

And life was to be lived and we didn't want to think about our mortality. And then you go from that to the discovery of antibiotics. And then you move from that to the development of our first attempts at cardiopulmonary resuscitation.

So resuscitating, you know, people whose hearts have stopped. And then organ transplantation and chemotherapies, which were able to rid bodies of cancer that previously had killed people, you know, and so on and on and on. And suddenly, by the late 20th century, this idea that we were finite being sort of, it had faded, it had really faded.

And it was easier to think about the next cure. And we see that right now with the coronavirus, right? What are we hung up on? We are hung up on getting that vaccine and getting treatments. But we're not really talking about the fact that we're finite creatures and we need to anticipate and prepare well for our inevitable deaths, because mortality is still 100%.

No matter how you spin it, we're all going to go at some point. Great. Yeah, yeah, totally.

So in terms of, I guess, a part of that transition too is the modernization of this concept. And that, right, you talk about in the book how the Arzmory India, that time doesn't exactly apply to now, and that there's some changes, especially in terms of how they address fear back then. But I'd love for you to go into a little bit about what is fear, so it seems to be pretty much ubiquitous in the experience of death, in that, you know, whether or not you're kind of gunk ho, there's something that's totally unknown and that may be unknown forever.

I mean, it doesn't seem like we're going to know what that looks like at any time. But could you talk a little bit about, you said on the book, one quote that I love, he said that it, man, like the fear of death, it manifests itself as two sides of the same coin. And I was really, really, really interesting.

So could you talk a little about how fear plays in with this more modern concept of the Arzmory India, and those two sides? Yeah, so, so that, that particular, that particular quotation, I'm referring to fear of death with the desire to live, right? So both of them are pushing it back against extinction. Yeah. Right.

And those are the two sides of the same coin, the fear of death and the desire to live. And I think those two things get very confused, and rightly so, as we think about the end of our lives, especially if we're in the hospital. So what is fear of death? Fear of death is, you know, dread of the unknown, which is, you know, totally, you know, your first day of college.

I have to say, probably my most frightening day, the day that I really remember my knees just shaking was as a new doctor walking into the hospital that first day, I'm just saying, oh my goodness, yeah, just because I have the MD does not. Yeah. And that, yeah, just really a sense of, wow, this is, this is the end of it.

So right. So fears and so fear of death, then dread of the unknown with this disarmed sense of personal extinction, right? What this, what's going to happen? Right? What does it mean? I cannot imagine what it means to not exist. Right.

And so that's fear of death. And so when we think about our own mortality or our own finitude, then we're, we're not wanting to go there. And we're still wanting to live because life is good.

And we're beings in relationship and we have families and friends and, and careers aspirations and hopes and dreams. Right. We have all of this stuff that makes us very human and leads to our flourishing.

And we don't want to give that up either. Right. So whether, you know, heads is fear of death or, or, you know, tales is, is desire to live.

They, it really is, it's, it's hard to know which has a more pool on us, which is why it gets really confusing about making some of these end of life decisions. You know, do I go on a respirator? Do I have CPR? Those kinds of questions that come up a lot with, especially with older patients. So, so I talk about fear of death in the book because I think it's something that we moderns, right? People in modern life really deal with.

Or it's out there and we just choose to ignore it. Yeah. I talk in the book about how fear of death has sort of been there since the beginning, but it wasn't something in the late Middle Ages that people got particularly hung up on.

Right. And part of the reason is because death was a factor. Right.

Right. I mean, this question of, can I avoid death? It was, it was a stupid question, right? That was not a relevant question in the late Middle Ages. They saw too much of it.

But for us, we sort of, you know, we're always waiting for the next fix, the next magic bullet. And so the fear of death then is that thing that's, that's kind of haunting us in the background. Yeah.

Yeah. So you talked a little about your first day in the, in the, in the clinic. So I'm pre-med.

So I still have that one to look for. We'll see how that goes. You won't know what you're doing when you get there.

Trust me. It'll be okay though. Yeah.

It'll look cool. So, you know, anyway, you also talk a little bit about how fear can manifest itself. Like maybe the most common conception or perception of fear is as its manifestation in the fight or flight response.

And you talk a little bit about two examples in the book. One of Susan Sontag was one of the people you talked about. And so she, she sort of approached it as like a battle.

And then the other sort of maybe the other side was the physician assisted suicide route where you kind of tried to control a little bit more of that part of your life. So would, could you go into those a little bit and talk about that whole thing? Sure, that whole thing. Yeah.

So, so I, if you think about it, you've, I mean, everyone probably has heard this fight or flight, right? This language of fight or flight. And so when we are scared, when we are afraid, are, there are two responses. We either get out of there or we start fighting.

And you see this with animals all the time. You know, they either run away or they start to fight. And that's, it's, it's instinct.

It's instinct. But it's also, well, you'll learn this in medical school. It's also the way we're wired and all this other stuff too.

All this medical stuff that explains it. But so when we think about fear of death, there is a way in which we fight it. And so I give the example of Susan Sontag who is just a really incredible writer and public intellectual, you know, really a big name in the 70s and 80s.

And she, she's so fascinating. She had three cancers over the course of her lifetime. And she was a fighter, but she was also someone who was somewhat abandoned as a child and had the sort of, you know, holding on to life was what really mattered for her.

But when she got the third cancer, which actually was a cancer that developed because of the treatment she, earlier treatment she had for her earlier cancer. She, she told everyone around her, her son, who is wrote, wrote a memoir about her death. And, and, and the rest of her community don't tell me that I'm dying.

And she went through treatment after treatment after treatment. And it got to the point where her son describes her sort of just laying in bed completely emaciated full of sores and just sort of taking in pills and pills and pills. And the thing that was really troubling for him is that he never felt that he or their, her close friends could really properly say goodbye because they were never given permission by Susan Sontag to say that she was dying.

So that's the sort of fight mode. And, and I had a lot of patients, maybe not quite as extreme as, as her son describes it, but a lot of patients who've, who've died that way. Just, they're just don't want to hear it.

They just don't want to hear it. They refuse to believe that this is the end. So that's the fight.

And then the fight or flight, the, the flight is, is getting away from death. And how do we do that? Well, this is where I, I talk about physician assisted suicide, which is maybe an older name for some people call it assisted death or aid and dying. It has several different names.

Death with dignity is another, another popular descriptor. And that is when patients, in a sense, patients people take control of their dying process by receiving in states where it's legal, a lethal prescription for a drug that they can then self ingest to end their lives on their own terms. And I describe that as flight because it really does allow, you know, escaping the unknown.

It, it facilitates that control and allows you to escape when a lot of people think about their dying and they get nervous about it, they're, they're worried about, am I going to be in pain? You know, is someone else going to have to wipe my behind? You know, these kinds of questions that are very sort of unsettling for people who like to be in, in control. And so this, this is how the, the flight of the fighter flight can manifest. I don't, I don't, in the book, I don't go into, you know, massive detail on it, but that's, that's what I'm referring to.

Yeah. And something else that was really interesting to me about Sontag was that she was sort of, I think you said, like she, she really looked into death closely and she would go to different places and kind of really studied. And she wasn't like ignorant of the concept or anything.

She was almost successful with it. But still that, that, that distinction in her own mind wasn't made between, you know, herself and her interest in terms of acknowledging like her finitude, which is really interesting. Yeah, I don't know if this is, is exactly right, but there's a sociologist that talks about death as the pornography of death.

That it's so taboo. We don't want to go there. And you're exactly right.

Susan Sontag was obsessed with death. She kept a skull on her writing desk. She visited cemeteries.

She had a list of her favorite cemeteries that she would go to. She had this fixation with it and yet she wouldn't talk about it. So it's, it's, you know, I mean, the pornography references is, you know, probably not the most illustrious one, but, but the point is, is that it was something that really affected her very deeply and yet she wouldn't talk about it, especially when it came to her own death, right? Yeah.

Yeah. Yeah. And so somebody else in the book, you mentioned that she had referred to the work of a poet, Christian Wyman, I think is how I was going to pronounce.

And yeah, Chris, yeah. Yeah. Yeah, which I really like is said, so I want to sort of breach this concept of dying into life a little bit.

Because it's on that actually when I read the book, confused me a little bit, I just, I didn't totally get it. But the quote here, which I thought was really interesting, it was said, at the same time to die well, even for the atheist, is to believe that there is some way of dying into life rather than away from it, some form of survival that love makes possible. So I wondered if you could explain a little bit this concept of dying into life and what that means for us.

Yeah, I mean, I think that Wyman does a really wonderful job of defining it poetically, right, which is dying into life is figuring out what survival means in death that love makes possible. Okay. Now, there are people will have, I mean, the book is not prescriptive.

There's nothing in the book that really tells you what, what, you know, Dr. Dugdale thinks right, right? That's not the point in the book. I wrote the book because I wanted to, in a sense, give my patients tools to die better. But part of the tool is encouraging people to think through these questions themselves.

But there's a way in which if we can die into life, if we can walk toward the fear and sadness in community, right, because I do make the case that dying, dying a lonely death is not a good death. And there's a whole chapter on that. I'm certainly dying alone, you know, if you die alone after your whole family just leaves that it's not, that's not a big deal.

That's not a lonely death. But I'm talking about the lonely deaths, which I really spend quite a lot of time on. But so, so in the context of community, as we walk with courage toward the terror and the sadness, toward the holes that death inflicts on our lives and in our communities, that's, that's, we're dying, right? We're seeing those holes rip us apart.

We're aware that this is the end. And yet, we have hope in the survival of some sort that love makes possible. Now, what is that? Well, that's what people need to wrestle with themselves.

You know, certainly there are, there are people who hold the view that your body is like, you know, a machine. And when you die, that's it. It's the end.

It's like the computer, the computer crashes. It's done. It doesn't work anymore.

You throw it in the trash or you recycle it with IT, whatever. But there's, there are some people who hold that view of life. But that, in some ways, feels very nihilistic, right? It feels very hopeless.

And I think what Wyman's point is in this essay that I quote is that, you know, no one wants to die poorly, even the atheist, he says. So even if you hold, you know, no hope for anything after this life and this life is all there is, then how is it, what survives? And maybe that's just memory. Maybe that's the, you know, what you create with people prior to the end.

But that's the challenge, the challenge is to figure out what form of survival love makes possible, love will make possible. Maybe you need to take a step back and say, what does love mean? Do I even have love in my relationships, right? Do I need to do some hard work of mending relationships prior to the end? You know, those, these are all the questions we need to be asking. In, in earlier iterations of the Rs.

Mauryendi, the, the, the time sort of as the end approached was really a time of bringing community together and time, a period of reconciliation. So are there relationships you need to mend? Well, you know, don't wait until you're, you're dying, right? Now is the time. And so to start to develop these practices over the course of one's lifetime will, will lead toward a, toward a better death.

And that's really the point of the Rs. Mauryendi is that if we want to die well, we have to live well, but then we have to attend to what it means to live well. And some of that is relational, some of that is facing our fear.

You know, some of that is, is thinking through things like, what, you know, what do we believe? What gives us meaning? What gives us hope? Is there a role for ritual? You know, what does ritual mean? So all, all of these elements come together to have, but, but we need to take them, address them now and not wait until the end. Yeah. Yeah.

And one of the really interesting things to that, but totally shocked me was that there could actually be something of a difference in the medical outcomes for the people who address their finitude. You cited this Harvard study where, well, maybe you would want to explain it a little bit. But that those that chose the palliative care option with, I think it was non small cell cancers, it's survived a little bit longer than those who had tried the more intense treatments.

Yeah. Yeah. That's right.

It was, it was a really well known Massachusetts general hospital study from several years ago, but they were looking at this cancer, really bad cancer, non small cell, lung cancer. If any of you have read Paul Kalanithi's book, When Breath Becomes Air, that's the cancer that he had. So it can be, you know, it's often lethal, it's always lethal, but it's often affects young people.

It's just a terrible cancer. Anyway, so they randomized the study participants into two groups and half just got standard care, which meant that if they want in palliative care, if they wanted to have the, this, for those who don't know, the palliative care team are those who come in and help attend to all of the other symptoms in addition to the cancer, right? So these will be the psychological symptoms, the spiritual concerns, things like, have you pooped today? You know, are you drooling too much? Stuff like that. Palliative care helps to make people feel more comfortable and help them address these, these sort of big concerns.

And then the other, the other half had early palliative care. So it was either sort of standard palliative care only if you ask for it, or early palliative care. And interestingly, those who were randomized to the early palliative care group actually lived two months longer.

And now this is, this is a cancer where, you know, prognosis is less than a year. So if you get two more months of life, that's a big deal. And in addition to that, it tended to be that those who were in the aggressive palliative care arm also had less chemotherapy and reported a much higher quality of life.

So stay away from the doctor, less chemo, more palliative care, live longer, and enjoy life more. So, you know, it surprised us in the medical profession. We were, we were pretty shocked.

But yeah, it was good news. And it makes sense. Yeah, yeah.

Yeah, still, yeah, it's still really interesting to think about in terms of medical interventions and then, you know, it's be with your family, decide what you're going to do and how you're going to treat people and finish up, you know, all that sort of stuff prior. And you end up living a little bit longer. It's really interesting.

So you mentioned community. I'd love to go into the role of community in dying a little bit and how you see that playing out through the Ours Moriendi and maybe also how that might have changed in terms of maybe also to address ritual and how maybe some of the rituals that were performed a little while ago in maybe traditionally religious communities or different cultural communities, how that might have changed to today and how but the ritual like can still be inherently useful in that process. Sure.

I'm just going to ask you, Quincy, are we okay to keep going? I can talk about this stuff for a long time. But I also, I don't want to overstay my welcome. Oh, yeah.

Maybe let's go until 1135. I don't know. I thought it was going to be until 1140.

Okay. All right. All right.

All right. So the role of community and then the role of ritual. So I have a whole chapter on community and essential to the Ours Moriendi, this art of dying was the role of community both in helping to prepare the dying person for death, but also in that act of preparing the dying person for death, they themselves would rehearse for their own deaths.

So one description, one way that the Ours Moriendi was often portrayed was as a great drama. And the dying person was the central actor in this great drama. And so everyone had a role to play in the drama.

And, and, and there was no such thing as dying alone, really, in the late Middle Ages, really all the way through. That's, and I described in the book how that, how industrialization really led to more of this phenomenon of dying alone. So, so community central, and I can say a lot more about that, but, but with community comes ritual.

And what is ritual? Well, ritual is a, is a word that we have for, you know, rights is another way to say the same thing, but for these practices that we have developed to help us transition through sort of uncharted waters, okay, to help us navigate those uncharted waters. So, for example, we have a lot of rituals surrounding graduation, birth, death, marriage, right, these major points of life where we are entering the unknown, we have no idea what we're getting into. And so what does ritual do? Ritual helps us navigate that.

And probably some of our best ritual then is surrounding death, because when death comes, especially if it's a complete shock, it's so disorienting. And especially the first, the sister, then there's kind of these periods of how disorienting is that first 24, 48 hours, absolutely mind-numbingly disorienting. That first week, such intense grief, that first month, things still don't feel normal.

And then by the time you get to a year, you start to start to see how life can get back to normal, that the wounds are still there, they've healed a little bit, but they're still scarring, you know, that sort of thing. And so, there are just some really incredible rituals. I have a chapter on ritual in part to prompt people to think about sort of modern practices that have developed, but also what there's some of the depth, the the meatiness, the weightiness, the profoundness of some of what has been done in the past.

And so the chapter is not at all exhaustive, but I draw really heavily from Jewish and Christian death rituals to describe some of what is possible. Yeah, yeah, that's really powerful stuff. And I think that, to be honest, that would have been really useful for me, like when Rebecca passed just a couple of weeks ago to have some sort of a structure to go to in terms of how to process, because it's a demean, it did sort of feel like, especially being down here away from family, it's totally different.

So powerful stuff and hopefully, yeah, our listeners are listening carefully, because I do think that undergoing some sort of process, we surround ourselves with the community and have some sort of structure fall back on community really useful. If you like this and you want to hear more, like, share, review, and subscribe to this podcast. And from all of us here at the Veritas Forum, thank you.

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