Jennifer Cohen and Lydia Dugdale
Jennifer Cohen 0:03
Welcome to Voices in Bioethics. I’m Jennifer Cohen and it’s my great pleasure to welcome physician, bioethicist, author, and professor Dr. Lydia Dugdale to the podcast. Dr. Lydia Dugdale is an internal medicine primary care doctor. She is the Dorothy L .and Daniel. H Silberberg Associate Professor of Medicine at Columbia’s Vagelos College of Physicians and Surgeons. She also serves as Associate Director of Clinical Ethics at NewYork-Presbyterian Hospital/Columbia University Irving Medical Center. Prior to 2019, she was Associate Director of the Program for Biomedical Ethics at Yale University. Her scholarship focuses on end-of-life issues, medical ethics, and the doctor-patient relationship. She’s the editor of Dying in the Twenty-First Century published by MIT Press in 2015, and is the author of The Lost Art of Dying: Reviving Forgotten Wisdom published by HarperOne in 2020. Lydia, thank you so much for joining us today.
Lydia Dugdale 1:00
The pleasure thanks for having me.
Jennifer Cohen 1:02
Lydia, your book, The Lost Art of Dying, makes the argument that modern culture has lost some wisdom and some practical skills that are crucial to the human experience. And this loss of knowledge is causing an enormous amount of emotional and physical distress. You begin the book with a graphic, rather heartbreaking description of what multiple full codes or code blues look like on an 84-year-old man dying of metastatic prostate cancer in the hospital. First, can you describe for our listeners who may not be familiar with that medical term what a full code is, and why you decided to begin your book that way, why that served as an example of what we have forgotten?
Lydia Dugdale 1:46
Sure. So a full code refers to full resuscitative measures that are possible, both within and outside of the hospital. But what we can do inside of the hospital is a little bit more intensive than for example, what an EMT could do out on the field. But it involves typically reviving the heart, so the heart in such individuals would have stopped, which means the person was dead. And the team comes and starts chest compressions, also known as CPR, and at the same time secures an airway. Because clearly oxygenation is important to try to resuscitate a body, a dead body. And so in securing that airway, that involves placing a breathing tube, also known as an endotracheal tube into the person’s airway, and then hooking that patient up to a ventilator machine if the heartbeat is successfully restarted. So there’s sort of this, it takes a team of people because it’s many things going on at once. We’re working on the heart, we’re working on the breathing, we are injecting medications into the veins to try to get the heart stimulated, there are medications we can use to stimulate the heart. And in addition to that the team is trying to secure usually a large IV access, which is more than you typically get when you go to the doctor. This would be a much more invasive, we call it a central IV or a central venous catheter that can be used for stronger medication. So there’s, there’s all these things going on at once. All of this has been administered to a dead body, keeping that in mind, with the hopes of bringing that person back to life. It is most of the time not successful, and it is more successful in the hospital than outside of the hospital. But even if it is successful in the hospital, it is still highly probable that that patient who has been resuscitated won’t survive to hospital discharge. And so that’s the story that I use to open the book. And I use this story because although we doctors and those in health care do resuscitate a lot of bodies, we do attempt to bring many people who are dead back to life, that’s part of what we do. It is rare for us to do that three times in the same night. And this was a patient that I met and of course in the book, I say I met him as a dead body before I met him as a man, right. I was a part of the code blue team. I was a part of that team that was called to resuscitate patients whose hearts had stopped and it was in the middle of the night. And so I was called to his body before he was alive, you know, after he had died. And when we resuscitated him, we knew full well even from just hearing his story and seeing him – very elderly, very wasted, bones were riddled with cancer – we knew this wasn’t going to go well. And yet it was very much the wishes of the patient and his family that we you know the language is “do everything possible.” And yes, we successfully restarted his heart twice, only to have it stop again that same night and our third attempt at resuscitation failed, as we knew it would have been unlikely for him to survive the night. So this phenomenon is, is it’s labor intensive, it is emotionally intense. It’s physically, it’s not physically taxing in terms of the labor intensity, although there is that, but it’s also, it’s a bit gruesome to be perfectly frank. And for those of us in healthcare, it feels often feels wrong to be obligated to attempt resuscitation on a body that we know won’t survive, you know, the night or the hospital stay. Unfortunately, it’s it’s not uncommon for clinicians to be required to Attempt Resuscitation, even against their own judgment that this is perhaps a bit foolhardy, or this is really a shot in the dark or sometimes clinicians will use the language of this as a “Hail Mary,” you know, this, we’re just trying anything we can. But that often feels wrong to us, because we know it’s not, it’s not going to have a good outcome for the patient. And in the meantime, we’ve sort of inflicted this kind of violence on a dead body to try to resuscitate it. So you know, it’s hard. And I guess I would say that when we are called to the bedside of 40-, or 50-year-old man whose heart has stopped, that feels like a much more hopeful outcome. But when it is someone who’s chock full of cancer, cancer that’s been refractory to treatment, and is otherwise rather wasted away, that that doesn’t feel right. And so it was it was early experiences like this that really shaped me and got me thinking about how we die. And wondering if there weren’t a better way both to prepare my patients to die well, but also to care for the dying in the hospital and outside of the hospital.
Jennifer Cohen 6:56
So the book is, is how I read it is offered as a modern version of a medieval texts known by its Latin title as the Ars moriendi, The Art of Dying. Can you give us a sense of the content and function of the Ars moriendi in Middle Age in the Middle Ages?
Lydia Dugdale 7:14
Sure. So yeah, so I was struggling with this question of of how we die, how I kind of teach my patients about dying well, keeping in mind that the word “doctor” means teacher, right. And I do think that a part of good doctoring is also making sure our patients are well informed, which comes through good communication and good teaching. So I was puzzling over this for years and years, to be honest with you. There has to be a better way. There has to be a better way. And I was sort of always had my antenna up for a model, or an approach that would be more effective. And one day I was reading through a bunch of end-of-life bioethics materials, and there was a sort of throwaway comment to the Ars moriendi in one of the journal articles I was reading and I thought, “what is this I don’t even know what this is.” So I started doing a little bit of research and found out that during the aftermath of the bubonic plague that swept through Western Europe in the mid-1300s, this particular outbreak of bubonic plague is considered more devastating than any other in possibly in recorded history. Historians have estimated that perhaps as many as two thirds of the population of Western Europe succumbed to this particular outbreak of plague, although, you know, now it is felt that that’s probably an overestimate. But a more conservative numbers still 30%, which if you think of one out of three people dying from COVID, for example, it’s hard to imagine that loss of life, we don’t know anything like that. So society is completely devastated and disrupted, all social structures are shaken. There was no one who is exempt from the plague. For example, in contrast to COVID, were primarily older folks and sicker folks died from COVID primarily. That wasn’t the case with bubonic plague, everyone was sort of equal opportunity, you know, to die, quite frankly, it spared no one. And especially it didn’t spare the social authorities. Although it is true that the wealthy who had villas in the countryside where there weren’t the infected rats had a higher chance of surviving, and then those in the city. It’s also true that the social authorities often stayed in the cities and in the urban areas and succumbed. What this means for Western Europe in the late Middle Ages is that the leading social authority at the time were the clergy of the Catholic Church. Now actually, it wasn’t even the Catholic Church, it was sort of the Western Church, because this is before there’s the Catholic/Protestant split. So this is the social authority. Were there other religions in Western Europe at the time? Absolutely. But this was the dominant social authority was was the clergy of the church. And so after the plague sweeps through, and everyone is who survives is trying to kind of collect themselves and rebuild society. One of the first petitions from the people, keeping in mind, probably 80, 85 percent of the people were illiterate or semi-literate, one of the first requests was that they had some guidance on what to do if if plague came back. And if it wasn’t plague it would be something else. But there was this sense that we just faced massive loss of life and we weren’t prepared, and the people who typically prepared us also died or they left town. So there was this urgency for a for for empowerment of the individual and individual communities, families, communities, parishes, neighborhoods, to be able to anticipate their mortality and prepare for death. So the church was in a real mess after the plague, but eventually, the first publication that the church issues post plague is a handbook on the preparation for death, referred to generally as the Ars moriendi. But there there was a longer title felt to be drafted. It’s an anonymous text, but it was felt to be drafted, perhaps by someone who was, you know, affiliated with the church. So it there’s there’s this early kind of medieval Christian underpinning to this first version. But what caught my eye about the Ars moriendi is that it was a handbook that quickly attracted the attention of a broad audience. The handbook was translated into all different languages. It’s spread all over Western Europe, there were versions picked up by Protestants. So in true sort of Protestant form, after the Protestant Reformation, they created their own versions. By the 1800s there are known Jewish versions, and ultimately, you know, straight up secular versions, just non- religious whatsoever. The former president of Harvard University, Drew Faust, has a lovely book on the Civil War in the United States, dying during the Civil War. It’s called This Republic of Suffering. And Drew Faust talks about how, by the time of the Civil War, the 1860s, in the United States, whether you were from the north or the south, whether you were religious or not, part of being brought up well meant that you anticipated your mortality and prepared for it. So now we might have, you know, estate planning or people talk to a financial advisor, or, you know, my baby boomer patients are thinking about long term care options, right? All of this is kind of part of getting your stuff in order as you age. But there was a broader understanding that was kind of really grounded in this medieval Ars moriendi, that you die the way you live. So for, for example, for soldiers during the Civil War, if they wanted to be known in their dying on the battlefield, as a person of courage, or a person loyal to his country and his family, those sorts of sentiments. They thought about how they wanted to live such that their lives, set them up – their living, set them up for dying in a way that they would be remembered. So it’s almost like legacy work in advance, but not the kind of legacy work I give this money to these charities or that sort of thing. But it was the legacy of character, the legacy of virtue, right? I want to be known as a generous and gentle and helpful person, okay, well, then I need to cultivate those sorts of attributes in anticipation of my mortality. But there was also, you know, other aspects to it. For the religious it meant very specific obligations, or duties or prayers, protocols that needed to be followed. It also meant that the fear of death was mitigated, because there was this sort of lifelong anticipation, of mortality, of one’s finitude. And if you’re walking through life, not hung up on the morbid and the, you know, the mortal, but you’re you have an eye to the end, you make decisions that are different in light of knowing that you will one day succumb to your finitude. I suppose it’s a little bit like the college student who knows she’s going to graduate and has to do certain requirements to be able to graduate. It’s a little bit like that. We know that it’s all going to end at some point. And so what do we want to have accomplished? Not just the material things but also the character, the relational, the religious, the spiritual, all those different aspects about of what it means to be human? How do we want to get that stuff in order so that we die well, so when I came across this Ars moriendi, seeing it as something that yes had its origins in the Western Church but didn’t stay there, was adapted and adopted, met the needs of a plurality of people, and helped equip them to face their mortality. I thought, wow, this is really interesting, right? This is what we need today. And the other piece that I love about it is that this was a handbook that recognize that the priests might not be there, the social authority might not be there, just like the doctor might not be there. And so we need to put the handbook in the hands of the people who need it, right. We need to get that information out to the community to the nonprofessionals so that they can do the work of preparing themselves in the event that the doctor or you know, other authority fails them on this front.
Jennifer Cohen 15:45
Fascinating. Let me pick up on that last point, because I, I read your book as not only a guide for the dying and their loved ones in the communities around them. But your message also seemed to be addressed to to your colleagues in medicine, you write, quote, “in failing to guide patients to die wisely, doctors fail at the professional commitment to do no harm.” Can you expand a little on that? You’ve mentioned it already that a doctor should one of the roles should be instructing patients. But do doctors bear ethical responsibility to help their patients die well?
Lydia Dugdale 16:20
One hundred percent. I often find myself railing about this in ethics committee meetings, when physicians take great lengths to avoid telling their patients that they’re dying. I’m not going to point any fingers to particular specialties, but there are some specialties that are known to be so keen to keep people alive, that they themselves advocate for heroic measures. This isn’t even coming at the patients or their families insistence that doctors are advocating for heroic measures without any transparency really that that the patient is dying. So oh, goodness, there are so many examples. I’ll just say that one time I had a colleague say to me, you know, Lydia, I don’t know why you write about death. I don’t know why you’re so interested in that. She said, “I myself am so afraid to die. I do whatever I can to avoid that conversation with patients.”
Jennifer Cohen 17:16
I was so glad you brought up that point in the book, because I agree that does not get enough attention. You quote the late physician and bioethicist Sherwin Nuland, who wrote, “of all the professions, medicine is the one most likely to attract people with high personal anxieties about dying. We become doctors because our ability to cure gives us power over the death of which we are so afraid.” It’s so fascinating and I think if patients understood maybe a little bit of that psychological insight and how it plays out, possibly in decision making with patients, it would really it helps patients to know that. So I was so interested to see you bring that point up in the book and grateful.
Lydia Dugdale 17:59
Yeah, no, that’s right, Jennifer, I’ll just say that. I’m so I’m a primary care doctor. And I, when I was at Yale, I had a huge practice with thousands of patients. And one of the things I would do every year for the annual I was required, actually, by Medicare to ask if patients wanted to talk about their end of life wishes. And while the patients were in the waiting room, they would have sort of a checklist where they could go through the the information and you know, update their medications and things like that. And there was a question, do you want to speak with your doctor about end of life wishes? And invariably, they would almost always check “No.” And then they’d come in to see me. And of course, I knew them, and I’d say, you know, “Mrs. Smith, you checked ‘No,’ here. We don’t have to talk about death. But let me just ask you one question. If you got so sick, that I couldn’t talk to you about how to handle your illness, with whom should I speak? Who would you appoint?” And Mrs. Smith might say, “well, so-and-so.” And I would say “well does so-and-so know what your wishes are?” And so I would kind of try to take this, you know, backdoor approach. I’m not talking to you about death. But I do want to know, with whom I should speak if you were too ill to speak for yourself, because I want to make sure that I respect your wishes. And then, oh, you don’t know what it means to die in an institution? Well, let’s talk about that. And let’s talk about the conversation you need to have with your, you know, with your surrogate decision maker or health care proxy. So I would try to do that. But again, it’s my same colleagues, also primary care doctors who would say they checked “No” on the checklist. We’re done. We don’t need to go there.
Jennifer Cohen 19:35
Okay, so you identify six principles to your modern Ars moriendi and I’d like to go through as many of them as we can. You brought up the first one already finitude, you write “by focusing on fixes we ignore finitude.” Can you expand a little bit about what you mean by finitude and how it differs, if you feel it does, from death.
Lydia Dugdale 19:56
Yeah, so I suppose finitude is a way of talking about that which leads up to death. Right? So death is the kind of the ultimate line. Either you’re dead and done in a strictly biological sense, or, you know, death is the, as the philosopher Søren Kierkegaard says, the threshold between life and uppercase life, right? So if you take a view of the afterlife and death might just be a threshold, but regardless, it’s this big line of demarcation. However, finitude is this idea that we are finite creatures, that we are living against the backdrop of an hourglass where the sand is slowly running out every day. And it’s the recognition that eventually the sand is going to run out. But we’re we’re we’re living against the backdrop of a ticking a ticking clock. And you know, there’s a way in which a lot of people say well, of course, one day I’m gonna die, but we don’t need to talk about that. Now, I get that all the time. We don’t need to talk about that, of course, I’m going to die. I get it. I get it. We don’t need to talk about it. Well, actually, no, we do. But it’s not so much to fixate on death itself, your lack of being itself. But how does that change the way we think about our living? Right, so it’s really about invigorating our living, living with intention living a life of reflection, right? What does it mean to live an examined life is the language sometimes people use that we examine things when we are up against the clock, when there’s no sense of finiteness our value of life is very different. It’s just that you hear these stories all the time, someone had a near death experience, and suddenly transforms the way they think about X, Y, and Z, right? Or, you know, the middle-aged exec has a heart attack, and he decides to quit his job and spend more time with his family, et cetera, right. We hear these things all the time. Well, a sense of our finitude does help us to examine our lives and reevaluate what’s important, it helps bring into relief, that which we value.
Jennifer Cohen 22:11
Okay, second principle: community. I think dying alone is one of the saddest prospects of human experience. What does it mean to die in community?
Lydia Dugdale 22:23
Yeah, and I’ll say that was probably the I think that’s gonna go down as one of the greatest tragedies of the COVID pandemic. You know, for 20 months, our nursing homes were in lockdown. Twenty months. It’s extraordinary what that did to folks. So, you know, community is critical. And it’s something that takes work when in earlier ages, such as the Middle Ages, when people lived in villages and didn’t travel very far, community was imposed upon you. But now we have to cultivate community. The average American moves, I think, every five years this statistic is. So if you want a community, you’ve got to work at it. And one, one exercise I often ask people to do is to think about themselves at their deathbed. This is probably one of the more morbid activities. But who do you want with you when you’re dying? Women who give birth often think about who they want in the hospital with them when they’re giving birth? Who do you want with you when you’re dying? And then ask yourself, what is the state of those relationships now? And what you know, do those people even know that I love them so much that they are the ones I would want with me? How am I investing in their lives? How am I letting them know, how am I working to build those relationships. And it’s not just, you know, that intimate family or friends of the people at the deathbed. But there’s also a way that we can think of community a little bit more broadly. I live in New York City, I have a community in my apartment building, there’s a community of you know, food delivery people and Meals on Wheels, their support groups and buddy systems for the aging. But then there’s also this level of biomedical community. Particularly patients who suffer from cancer or other chronic diseases that are progressive, such as heart failure, get to know their medical teams very, very well. And that can be a sort of extension of their intimate community, can be this biomedical community. But whatever the level of community from the most intimate to the sort of, you know, the outer layer of the onion ring, it takes work, and we need to be intentional about it. It’s amazing. You know, I published this book two years ago, how many people have written to me about this notion of community, especially people in suburban areas where they don’t really live close to that many people. They’re starting to rethink what does it mean to intentionally be in one another’s lives when we’re not even physically in proximity with one another. So it definitely takes work.
Jennifer Cohen 24:51
Third principle: context, sort of dying in a hospital or dying out of a hospital is the way I understood that chapter. And you write, “the hospital is no place for the sick and dying the hospital exists for the acutely ill.” Why is the hospital no place for the dying?
Lydia Dugdale 25:09
Well, so you know, as you know, I kind of hedge on that. So the acutely dying, you know, ideally are would be at home or in a hospice where the family would have more support than what is available in an acute care setting. At the same time, I hedged on it, because sometimes it is practically impossible to realize that. So I think of a friend of mine, whose family gave me permission to write about her and I write about her in the book, change her name, but she actually had wanted to be at home. But it just the logistics of that she was dying so quickly from cancer, young mom, the logistics of that would have been impossible. And then she would have it would have been hard for her to get any rest with the little children around. So then there was this question of getting her to hospice. You know, honestly, they weren’t even sure they’d be able to get her there, because partly because she was a young mom and they, the doctors, were so eager to try to do everything they could to stave off death, that by the time hospice was on the table, which is often typical with patients, she was really, really, at death’s door. So so sometimes it just makes sense to be in the hospital. I had another patient that I write about, who also gave me permission to write about her and use her name, Diana, and Diana had terrible lung disease, it was idiopathic and progressive. Idiopathic, meaning we don’t know what caused it, it was progressive. And she knew at some point, she was basically going to suffocate to death. I mean, that would have been the sensation. And she really wanted to die at home, and she had everything set up to die at home. But ultimately, the breathing difficulty was so bad, she could not imagine not having a nurse, literally, you know, outside her door. And in the end, she died in the hospital, and felt that that really made sense for her. She tried going home, but the breathing was just too bad. So you see, sometimes it does make sense. And partly it makes sense because what we can do for patients really staves off death for so long, that in the end, they’re they’re quite impaired and do need that higher level of acute care to help them be comfortable, as with my patient, Diana. But overall, if we can, you know, get people to places where they and their families feel more comfortable and more supported, that’s a wonderful, wonderful goal.
Jennifer Cohen 27:35
And is this ability that you just mentioned, to stave off death, is that related to what you call the rescue fantasy that goes on a lot of times with dying patients in hospitals?
Lydia Dugdale 27:46
Yes, certainly. I mean, there’s the rescue fantasy, and sometimes it’s a fantasy. And sometimes it’s the reality, right? I mean, I think the fantasy is that we can always we can always bring somebody back. That’s the fantasy. And the truth is, we can’t always do that. You know, we harbored no rescue fantasy. The third time we were resuscitating my patient that I write about at the beginning of the book, we had zero fantasy about that. But there are other times we you know, let’s do another surgery. Let’s transplant another organ. Let’s try another round of chemo even though the last four rounds did not work, right. That’s where the fantasy can come in. When it’s yet another yet another yet another but this what this really does, I mean, the body is an extraordinary thing, we can maintain the vital functions of the body, long after any sort of natural ability for the body to stay alive. It is not uncommon in any academic sort of sophisticated academic health center to have actively actively dying people being their vital functions being maintained with life support. That is not uncommon. That’s kind of this rescue fantasy.
Jennifer Cohen 28:57
Yeah. Next principle is: confronting fear. And you describe how the Ars moriendi in the Middle Ages assisted readers in understanding that the dying would face certain you know, in the language of the time, temptation, sinful temptations, such as despair, impatience, pride, and the Ars moriendi helped people prepare for those types of emotional states in the dying. But you make a point of noting that one temptation not mentioned is fear, which seems to be the dominant emotion around death in the modern world. How do you account for that difference?
Lydia Dugdale 29:33
Sure, I think if you grow up knowing that several of your siblings died before age five, and not many of your relatives lived past 50, and last year the village you know, a little ways away people died of whatever cholera, you know, whatever the disease was. Life felt very precarious in the pre-modern era, and the precarity of life meant that death was always there. In the book I write about these traditional German mountain houses where they were crafted with both a cradle for the baby and a coffin, that those those were ever present objects in these traditional German houses. And the idea was that life and death, birth and death are part of regular existence. So if that’s the case, why do you fear death? You know, I mean, sure, there’s some apprehension, but everybody’s going to die. And we’ve seen it so many times, right? I mean, not not in the modern era, but I’m now I’m putting us into the pre-modern era, the pre-modern families had seen death so many times. Death occurred in the home, they took care of the dying in the home. The burials happened, they dug the graves, right. I mean, that people were very, very connected with the dying and that’s what we’ve lost, right? That’s what the medicalization of death has effectively hidden deaths from view. And we don’t see it, so not only is it something that we haven’t experienced, we aren’t seeing it. We’re not taking care of the dying and the dead. It creates great consternation and fear.
Jennifer Cohen 31:26
Are people afraid in your experience of pain and suffering, or the loss of control or the loss of dignity?
Lydia Dugdale 31:33
Yeah, I mean, people, it’s interesting. So if you look at the data on why folks in Washington State and Oregon, the two states that legalized physician assisted suicide or death with dignity, as it’s often called, legalized at the the earliest in the United States, in those states, people often say that they fear loss of autonomy and dignity, that they’re no longer able to do the activities that that give their lives meaning. Around 85 to 92 percent of people say that when asked if they want these lethal drugs, because of pain, only about 25 to 27 percent of people say that. So while we often think you know, you hear about a painful death, you think, ooh, who wants to die that way? It’s actually that’s not what really gets people. And you know, truth be told, there’s almost no pain, we cannot treat, we’ve gotten so good at pain relief. Now, it may be that for some intractable pain, relieving that pain involves making the person unconscious, that may very well be the case. However, we can relieve pain. But people are worried about, you know, frankly, having someone else have to clean up after them wipe their behinds, right? They can’t get out and do what what they like to do. They’re dependent on everyone. Americans in particular hate the idea of dependence, right, that’s just antithetical to our strongly independent, you know, culture. So those factors, I think, combined to make people more afraid, I’ll say for doctors, doctors are often just afraid of dying in the hospital. I think we’ve spent too much time in it and really don’t want to end up in one of these sort of highly medicalized everything going down the drains situations. And I would say for myself, that is that is definitely true. And I know, I know, there’s a literature out there that talks about how doctors don’t want to die in hospitals.
Jennifer Cohen 33:30
Interesting. You, I hope I don’t misunderstand you. But I think you sort of hint in the book that you don’t think it’s possible to die without fear. So is the goal then to acknowledge the fear or to try and manage it?
Lydia Dugdale 33:46
Yeah, so I think what I don’t want to do is to turn whether there’s fear or not, or some kind of fear barometer or measure into a translate that into whether you’re dying well or not. So there was, in the 1700s I think now, the Methodist were really hung up on getting people’s last words right. So that that would be that would show that they were dying, full of faith in God that he had their souls. This really stressed people out some people because if they had if they were afraid of death, and didn’t mean that they hadn’t worked out their stuff with God, maybe it just meant that they had apprehension about something they’d never experienced before. That’s normal. That’s normal. It’s normal to have some degree of healthy anxiety about something we’ve never experienced before. So I don’t want to say oh, if there’s fear, if there’s an a, you know, on a scale of one to ten, if you have fear between five and ten, well you’re screwed, right, that’s not where we’re going with this. Recognizing that fear is okay, but that we don’t want that fear to be crippling, to be paralyzing. And that’s where I, I use some of the work of the poet Christian Wiman to talk about how we need to walk into the fear that we need to sort of lean into it, press into it with courage with those we love, and that that helps to mitigate the anxiety, the consternation, it helps to lesson it. But but it’s, again, it’s the work of the community together with the one who is facing death, talking about it.
Jennifer Cohen 35:28
Beautifully said, The next principle is the body and confronting the frailty of the body. And this is the whole book I found fascinating. But this was a really interesting chapter on what it means to meditate on the capacity, the inevitability of the frail, suffering body most of us will inhabit. Or if we, if that doesn’t happen, we will at least be be aware that other our loved ones or friends are also becoming frail, their bodies are decompensating in the medical language. And the way humans have tried to confront that, again, as you were describing in the Middle Ages, to ignore that was not possible. But in the modern age, it has become a bit easier to turn away from frail bodies. You discuss this way that you encountered that type of meditation in the Middle Ages, with the 16th century Isenheim Altarpiece? Can you just talk a little bit about that experience? Why you felt compelled to make this pilgrimage to this piece of art?
Lydia Dugdale 36:33
Yeah, so I had learned about this masterpiece that it had been commissioned and dedicated to those who suffered from plague. And I thought, oh, I’m writing this book that kind of riffs off the bubonic plague and the need to in this model for preparing for death I should go see this masterpiece. Turns out that it was dedicated to victims of two different diseases: one that was known as St. Anthony’s fire, one known as the bubonic plague. And it’s a it’s a multi-layered piece, because it’s actually an altarpiece. So there are all these doors that would open and close depending on the feast day. Most commonly, it was, you know, a sort of classic crucifixion piece. What was really fascinating though, is that the body of the crucified Christ was riddled with the boils and lesions of disease, you know, whether it was St. Anthony’s fire or bubonic plague the commentators are a little bit back and forth on that. But so you have this kind of plague infested Christ on the cross. That’s the main image. But what struck me when I went to see this and it really is a gorgeous, gorgeous piece. It’s housed in this former convent in France, that’s now a world class museum. And so many people have gone and seen this piece and had been transformed by it, including to me, you know, Martin Buber, wrote an essay titled The Altarpiece, you know, Buber, being a great Jewish scholar and philosopher. He was so moved by this image of the crucified Christ with a plague infested body that he wrote an essay kind of commemorating his viewing of it. So it was fascinating to me that people would be so moved. But what I found really interesting was not I mean, it’s gorgeous, the whole thing is gorgeous, but not that first kind of image of the crucified Christ. But there was this other image of St. Anthony again, the altarpiece was dedicated partly to this St. Anthony’s fire disease. So they had an image of this St. Anthony, who fighting all these devils in the wilderness. Another story, which I won’t tell but in the corner of this painting of Anthony getting ravaged by demons was this kind of horrible, little, subhuman, decaying creature sitting there, painted into the corner of this image, and there’s a small note tacked to a stump that is essentially the cry of this horrible little creature, asking “why is no one coming to heal my wounds?” And what really struck me about that image is that that’s, that’s the cry that I’ve heard so many of my patients say, you know, I’ve taken care of patients with these horrible, horrible disfigurement and horrible wounds, horrible pain and sadness. You know, our our decay of the body isn’t always only physical, right? It takes a toll on us. And how often do we look away? Right? We see someone on the street with something badly disfigured and we look away. Even doctors, right? We don’t want to stay in the room of the patient with a horrible wound that that’s stinks. You know, we do our job and we leave the room. And there’s a way in which all of us can be tempted to look away from our own physical finitude or we can pay attention to it. And we can allow it to transform our sense of our living in our dying, right. If our physical finitude then becomes a little, you know, like a little flag waving or a little light going off saying, “pay attention to me pay attention to me, you are mortal,” be aware of that. And how do you need to live differently in light of that. That’s what I think our physical, you know, decline should do. So your your typical middle aged person might not have a whole lot, might just need reading glasses and have some joint issues. But it’s coming more is coming or it right or maybe your your even kids, they have cavities. Well those cavities are emblematic of decay, you know, or kids need glasses, or there’s all these things that we can ignore or sort of quickly try to normalize. And that’s fine. It’s not that it’s not that normalizing wearing glasses for a kid is the wrong thing to do. That’s absolutely fine. But it does nod in the direction of our finiteness. And I think just being aware of that this is just about being aware and and then asking ourselves, what do we need to do differently?
Jennifer Cohen 41:13
Last concept is spirituality and ritual. And you make the case throughout the book that although the Ars moriendi came out of this religious tradition, dying well is not just the domain of the devout. You also point out very interesting studies that show actually, the more religious people are, the more they’re prone to choose aggressive life support, which is its own incredibly interesting topic. But having said that, what do you feel we can learn from religious traditions around death in the secular world? You got some wonderful examples in the book?
Lydia Dugdale 41:47
Yeah, well, I interview a rabbi who says, you know, of all the things Jews do, well, we do deaths the best. And I love that because I, I grew up in the Judeo Christian tradition. And, you know, I don’t know that I have seen death done very well. I was just talking to my mom yesterday and she said something about so-and-so couldn’t have an open casket and in the book, and my mom’s read my book a couple of times. But in the book, I also have a sort of side note on embalming which I just am not a fan of, not to not to cast, you know, you’re not to cast judgment on it. But I personally am not a fan of it. And I thought, Mom, how could you read my book a couple of times, and, you know, have a throwaway comment about bemoaning the fact that so-and-so couldn’t have an open casket, although you can’t have open caskets and not be embalmed. But that’s very, very rare. Yeah, so the role for spirits, spirituality and ritual, I think that there’s so much that the religious traditions have developed over thousands of years of practice, written down thoughtful ways to think about the body and the value of the body and what the body represents in community that we can learn from. The Jewish tradition has so much wonderful teaching on grieving. And it is so interesting to me that the time periods are sort of recommended or prescribed for grieving occurs, you know, there’s 24 hours after death, you want to have the body buried, and then there’s the first seven days for Shiva for really sitting low and mourning and grieving, and then you mark the first month and then you mark the first year. And in psychology, if you talk to psychologists or psychiatrists, they’ll talk about normal grief within a year, you know, normal grieving, kind of is about about a year. So there’s probably psychologists got that from Judaism is my guess. But even within the Christian tradition, there’s this idea of having the casket. Traditionally, you almost never see this anymore. But the casket traditionally, was brought to the front of the church between the pews still stayed between the pews. Why? Why not put it up front where it’s kind of a casket on display? They kept it in the in the center aisle between the pews, because it was the location, it was the last time that the deceased person was going to worship in the context of his or her community, right. So they were, the casket was kind of placed among the people. And that I mean, these things I didn’t know any of this as to until I took a class on the liturgy of death, which was also fascinating. And I learned that there were just so many different ways that people have thought very deliberately, about everything from how to handle bodies, what to say, how to pray, how to bury, how to grieve, and there’s just a lot of wisdom that we can glean and learn. We live in an era where it’s kind of you do you. And that’s fine. I mean, that’s fine, but there is a wealth of wisdom that comes from thousands of years of deliberation and we shouldn’t ignore it. We should try to learn from it. I think it would help us die better for sure it would also help us live better.
Jennifer Cohen 45:07
And my last question, Lydia, as we’ve discussed, the Ars moriendi was compiled following the Black Death of the bubonic plague in Europe in the 14th century. Do you think COVID has had any change any impact on our collective thinking about dying? Can you tell yet?
Lydia Dugdale 45:24
I wish it had had more. You know, I published this book a few months after the first wave, and probably gave 150 book talks at this point, and have spoken with so many different people about this. There’s still a lot of wanting to just get on with life. I don’t know that the numbers have been so significant that it’s completely changed the way we think about our living and dying. I wish I could say it were different. I know I have some colleagues who work on end of life stuff who think that younger people are more open to talking about it now. And there have been a couple of articles. There’s an article in the Wall Street Journal, you know, generation, whatever it is Z now thinking about their mortality. I think there are a couple of pop up this and that, but we have not seen sort of a societal awakening to the need to prepare for death. I’m certain of that. I wish it were different, but sadly not.
Jennifer Cohen 46:24
Lydia Dugdale, thank you for writing such a thoughtful, thought provoking, timely book and for your work helping countless patients best of luck in the future.
Lydia Dugdale 46:34
Thank you. So nice to talk with you.