How are we supposed to die?
As a resident physician and fellow of Duke’s Theology, Medicine, & Culture Initiative, I’m convinced that this question will only become more pressing for Christians. Medicine is among the most powerful forces shaping how we speak and think about human life—particularly birth, sex, and death. The pandemic has obviously brought the latter to the forefront, but modern medicine has been setting the goals and limits of that conversation long before COVID-19 arose.
Dr. Lydia Dugdale is an internal medicine physician and clinical ethicist at Columbia University. Prior to her 2019 move to Columbia, she was Associate Director of the Program for Biomedical Ethics and founding Co-Director of the Program for Medicine, Spirituality, and Religion at Yale School of Medicine. We recently explored her new book The Lost Art of Dying: Reviving Forgotten Wisdom. Our hope is that sharing this conversation—conducted over the course of several weeks—would spark readers to take up these questions with their doctors, neighbors, and spiritual leaders.
Brewer: Hey Lydia, thanks so much for sharing this conversation. Tell us a little about your story—your journey through ministry, medicine, ethics, and how you came to write about death and dying, both in editing your first book Dying in the Twenty-First Century and now this book The Lost Art of Dying.
Lydia: Thanks Brewer. I grew up in a household where talk of death was very common. My grandfather had been a bomber pilot in World War II. His plane malfunctioned and crashed during flight training. Later he was shot down and taken prisoner of war. He endured forced marches in frigid temperatures and starvation conditions. Throughout his life he remained keenly aware of his mortality and was quick to engage others on the subject of theirs. I suppose that frank conversations about living and dying well are in my DNA.
I grew up in a working class midwestern Christian family. I won’t bore you with the long version of how I ended up in medicine, but the short answer is that compassion and a desire to help others have been driving forces in my life. However, once in medical school, I began to realize that the very technology we use to save peoples’ lives also has the potential to cause significant harm.
I started wondering whether there couldn’t be a better way to help my patients physically prepare for death while also engaging broader existential questions. About a dozen years ago or so, I stumbled across the ars moriendi—which is Latin for the ‘art of dying.’ The ars moriendi refers to a body of literature that developed during the aftermath of the mid-fourteenth century outbreak of Bubonic Plague that decimated Western Europe. The ars moriendi were essentially handbooks on the preparation for death that took on practical, relational, and spiritual issues. The earliest versions were influenced by the Western church, but subsequent iterations were adapted for other cultures, including non-religious groups. With the Protestant Reformation, there emerged Protestant versions, later non-religious versions. By the time of the US Civil War in the 1860s, the historian Drew Faust explains that the ars moriendi had largely become divorced from their theological roots. Dying well wasn’t just for the religious; it was for everyone.
This was my attraction to the ars moriendi—it aims at living well in order to die well. And I wondered whether we could revive the idea. My first book is an academic attempt to wrestle through the question together with smart colleagues, and the second book aims at articulating a modern ars moriendi.
Brewer: Wow. It’s interesting that your attempt to revive the ars moriendi also follows in the wake of pandemic. It’s seems to me we’re perfectly primed to hear this. That said, I’m only a resident, but I’ve learned quickly that modern medicine makes it difficult to imagine an art of dying well. The medical machine will “drive ever forward toward the objective”—to borrow a line from Wendell Berry—unless, as you write, someone “speaks up and presses pause.” So I guess two questions here: first, what is “the objective” of the medical machine? What is it driving forward toward? And second, how have you seen speaking up and pressing pause done well? Have you pressed pause yourself? Are there ways patients might “press pause” that we simply can’t do as clinicians, and vice versa?
Lydia: I’d say the objective of the modern medical machine is two-fold—medical mastery and economic productivity. Doctors master their own craft, their specialty. That mastery is iterative. It’s constantly defined and redefined with regard to research findings, new treatments, but most of all, with regard to what is economically viable. At the risk of sounding cynical, what’s rewarded most is that which is financially lucrative. That’s the objective. And I think that’s where Wendell Berry ultimately points. I’ll add that these objectives—mastery and productivity—are not my aspirations for medicine. But these are the forces that dominate. I have seen patient after patient consumed by the medical machine and spit out as skeletons of their former selves. Dying people whose vital functions are maintained by aggressive medical technology. I’ve witnessed this more times than I can count, and I’ve wanted a better way.
Anyone can attempt to interrupt these forces and “press pause.” I have certainly done this as a doctor. I’ve facilitated difficult conversations between my patients and their cancer doctors in which I’ve essentially made it clear that further chemotherapy will do nothing to help my patient survive or feel better. Patients have brought me piles of medical records and a list of recommendations from an outside hospital where doctors don’t know them, and I’ve gone through everything in detail to help my patients determine just what makes the most sense for them to pursue and what they can skip. I’ve worked with the families of elderly patients to limit treatments, hospitalization, and futile surgeries. In instances such as these, sometimes I initiate pushing the pause button and sometimes my patients or their families do. But we work together to halt the medical machine. The ars moriendi were tools for patient empowerment that relied neither on medical nor social authorities. The books enabled patients to anticipate their finitude and prepare for death within the context of community. That’s the sort of collective effort we need to stave off medicalized dying.
Brewer: Your story of sparring with the oncologist is really powerful. You’re pressing pause in the path of that which moves toward whatever can be done.
I think too about what pausing suggests about time, particularly when medicine can be so tuned toward efficiency. You write early on that health care systems aren’t structured for what Victoria Sweet has famously called “slow medicine.” What is slow medicine? Perhaps asked another way, what is “fast medicine,” and why are health care systems structured in this conveyer belt, “disassembly line” sort of way?
Lydia: So many questions all at once! I’ll start by saying that many doctors have described medical practice as a conveyor belt. A patient walks into the hospital for treatment for one issue and is picked up and whisked along as the passive recipient of more and more interventions. But rather than medicine working toward the whole of the patient, specialists effectively disassemble the patient into his or her individual organ systems.
Here’s an example. An elderly woman falls and hits her head. No one saw her fall. The emergency room doctors consult the neurologists to make sure she didn’t have a seizure. They also perform a CT scan of the neck and brain, to make sure there’s no bleed from the fall. The CT reveals a nodule in the thyroid gland and non-specific findings in her brain. The neurologists now want an MRI of the brain and plan to monitor her for seizures. The emergency room doctors discharge her with more brain testing, a neurology appointment, a thyroid appointment, and instructions to follow-up with her primary medical doctor. All of these visits result in more testing, more interventions. And what started with a little old lady tripping on a rug has become a brain problem, a thyroid problem, a home safety problem, and so forth. She’s been disassembled into her respective organs before she’s even had a chance to ask questions.
Slow medicine is the antithesis. It asks us to pause, to consider the whole, to ask what is absolutely necessary and not merely algorithmic. Slow medicine rewards humanness over efficiency, vulnerability over invincibility.
Brewer: That is beautifully put. I think of Jeffrey Bishop’s recent description of the analytic mind as that which works like a scalpel. It “ana-lyses”—literally “cuts.” Whereas the religious or intuitive mind is that which works symphonically, recognizing that the whole is greater than the sum of its parts.
Slow medicine reminds me too of the way my dad practices. He is a family physician and loved your book—it’s been fun to process it with him. I think it’s given him some hope amidst the COVID-19 pandemic specifically, but also a way to articulate a frustration he has shared with me for years regarding his older patients, just not knowing how to age, let alone die. Expecting more from medicine that it can (or should) provide. He wonders who will teach the art of dying. It seems that there is so much being said about sexual ethics and the political life and racial justice—all crucial —but when was the last time you heard a sermon about how to die?
Lydia: Oh, great question! You know I’ve moved around a bit for school and training and jobs. But one of the conversations I always have with my pastors or priests is about that very question. When was the last time you preached on preparing well to die? I have to say, they’ve been very responsive, as have other clergy people who’ve read my book and contacted me. So I’m hopeful there will be some momentum to bring this conversation into the life of congregations.
Brewer: I hope so too. That leads well into my next question. You suggest that we die best in community. Said another way, it may be impossible to die well alone. And I can say, at least as a resident, the most disturbing deaths I’ve been a part of—the ones that haunt me I guess—are the ones where the patient is alone. When you’re called in at 3 AM to pronounce the death of a patient you yourself have never met, who is dead in isolation in the ICU, unaccompanied by friends or family or even their attending physician. The ars moriendi was never meant to be practiced alone, and yet we live in what has been called in various ways an epidemic of loneliness. All of this—the epidemic, ICU realities, and now the COVID-19 pandemic especially—seems to undermine the possibility of communal living leading to communal dying. How do we reconcile these things?
Lydia: I like to make the distinction between dying alone and lonely dying. Many people die alone, and it is not necessarily a tragedy. Imagine, for example, that three generations have been visiting with great grandma. She is clearly dying—weak, not really interactive. She’s the type of person who has never wanted to be a burden; indeed, she’d much rather bear the burdens of others than trouble anyone else. Great grandma waits until the entire family leaves for the night and then falls asleep never to awake. The nurse discovers her at 3 AM and calls you to pronounce her death. But her dying alone was not a calamity; it was consistent with how she lived.
Now contrast this with what I take to be the greatest tragedy of the COVID-19 pandemic—policy-inflicted lonely dying that results in dying alone. Patients who are scared out of their minds by a novel disease are whisked into hospitals that forbid their families from entering. As they struggle to breathe, they don’t know if they’ll survive of if they’ll ever see their families again. And many didn’t. This wasn’t simply the case for hospitalized patients. Many of our seniors and folks with disabilities who live in various sorts of care facilities were essentially cut off from family, sometimes even spouses for a year or more. And many failed to thrive. They lost weight. They developed bed sores. They languished. They have slowly died over this past year in isolation and loneliness. And we caused it—“to keep them safe.” This is something to mourn. And it’s something never to repeat.
Brewer: That’s a helpful distinction (and a harrowing reminder).
Continuing on this note of loneliness, as a medical student I was struck by how “respect for autonomy” was emphasized as the chief principle of medical ethics, subtly suggesting that it is a life of autonomous independence that both clinicians and patients should strive for. And yet there is a rich conversation afoot about recovering a language of dependency in medicine. Another Wendell Berry quote comes to mind: “There is, in practice, no such thing as autonomy. Practically, there is only a distinction between responsible and irresponsible dependence.” How do you imagine us, as patients and clinicians, holding both autonomy and “responsible dependency” in tension in the healthcare space?
Lydia: I ask my patients to name someone whom I could call if they ever became too sick to make their own medical decisions. That very question forces the shift from rugged individualism toward responsible dependency. Most patients can name someone, but some have trouble. Sometimes patients tell me they don’t know who would be willing to talk with their doctor. I say that’s fine, but then their homework is to go home and think about it and tell me at our next appointment. Again, it’s a nudge toward dependency.
What’s challenging are the patients who tell me that when they lose their physical independence, they want me to help them die. Those who have asked me this often don’t have many people on whom they could responsibly depend. “My only living relative is my adult son, and he has a busy and important career. I could never be a burden on him.” That sort of thing. I typically respond—albeit gently—by saying that I’ve pledged to heal, comfort, and accompany my patients, not to make them dead. And the charge to cultivate responsible dependency remains the same.
Brewer: It seems like there is a great deal of practice that would be necessary to recover a responsibly dependent, communal ars moriendi. As you write, “community will not spontaneously appear at the deathbed; it has to be cultivated over a lifetime.” Do you think Christian communities should literally “practice for death” in some way?
Lydia: No question! That’s the story of the season of Lent, the 40-day period of praying and fasting in anticipation of the Christian holy days marking Christ’s death and resurrection. The season of Lent kicks off with Ash Wednesday when the faithful are reminded that from dust we came and to dust we will return. Lent then becomes an annual reminder of our own finitude and dependence. It is a call to live well by looking to Christ. At the very least Christian communities could rehearse for death each year during Lent.
Brewer: That is a great reminder, though I’m hoping to press a bit more concretely here. For example you draw on the Jewish tradition beautifully, in particular the acts of tahara and sitting shivah, which strike me as particularly embodied and practical ways of rehearsing for death. What has struck you about the Jewish tradition in your work on dying, and can you maybe give us a sneak peek of tahara and sitting shivah?
Lydia: As my rabbi friend says, “Of all the things Judaism does well, it does death the best,” and I believe this to be the case. The Jewish tradition divides traditional mourning into stages that follow the natural progression after a death from shock, to a period of receiving condolences and community support (shivah), to gradual reentry into normal life. At twelve months, something called yahrzeit marks the year of mourning, and the bereaved are to cease their weeping. Curiously, psychologists today deem one year to be the appropriate length for normal grieving after a death.
You ask about shivah specifically. Well, it refers to a seven-day period from the time of burial in which the family of the deceased are to do no work. The seven days comes from the biblical story of the man Job, whose friends mourned in solidarity with him for seven days and nights after Job experienced profound loss. Job’s friends sat in the dirt with him, which is why shivah is often referred to as sitting shivah. Even today friends and neighbors come to the house of the bereaved and literally sit low (sometimes on boxes, sometimes on the ground) and mourn. They bring all necessary provisions, but they aren’t to speak unless spoken to. Traditionally, people don’t shave or shower. Mirrors are covered. The idea is not to mask the rawness of death’s wound.
Tahara is the Jewish ritual of preparing the dead body for burial, which is carried out within twenty-four hours of death. Within traditional Jewish communities, volunteers are specially trained to purify the body for burial. Men attend to male bodies and women to female ones. The ritual is incredibly intimate. The volunteers begin by calling the body by its Hebrew name and apologizing in advance for any indignity it might suffer. During the first washing, in warm water, every part of the body is washed with care, as if it were still alive. As they wash, the volunteers sing love songs from the Hebrew book Song of Songs. The second washing is in cold water. Finally, the body is immersed in the mikveh, or ritual bath. Then it is dried, wrapped in a shroud, and placed in a casket.
Brewer: That’s unbelievable, and just so, so beautiful. Do you have a sense of why we don’t practice such rituals within the Christian tradition, at least in the American context?
Lydia: Actually, I learned recently that there is a version of tahara practiced in the Eastern Orthodox Church—a ritual washing of the dead body in anticipation of burial. From my limited reading, I believe it is less involved than the Jewish ritual. I’m hoping to meet with an Orthodox priest soon to learn more.
Brewer: This also reminds me of how you attend to funerals as transformative rituals. You quote Thomas Long, that the point of a funeral “is not to uplift the audience but transform the cast.” It seems like funerals should recover the seriousness of both lament and celebration and not simply “celebrate life” alone, as may be in vogue today. What marks a funeral that is only uplifting the audience, as opposed to one that “transforms the cast”?
Lydia: Funerals are meant to point to deeper truths—truths that are worth seeing. If the storyline of a funeral is all about the deceased and what a wonderful guy he is, then the message stops there. Even if he’s the richest, most accomplished, smartest—you name the trait—guy in the world, a funeral that is all about him never takes us deeper.
By contrast, a funeral that transforms the cast—and remember, all in attendance are part of the cast—that funeral is telling a larger story, a story that draws all of us into it. In the book, I tell the story of Dallas megachurch pastor T. D. Jakes, who spoke at Aretha Franklin’s funeral. He recounted the time he and his wife attended the Grammy Awards. Luciano Pavarotti was supposed to sing but fell ill. So Aretha Franklin took his place, singing the popular aria from Giacomo
Puccini’s opera Turandot, “Nessun Dorma,” which means “none shall sleep.” Jakes goes on to hammer home the point that although Franklin’s body was on display in the casket, she was not in fact there. Just as she sang at the Grammy Awards years earlier, she was not asleep. She had risen. That was the truth Jakes wanted the cast to see.
Brewer: Shifting perspectives from the church to the examining room, I find in the clinical setting that imagining an ars moriendi with patients gets collapsed into what is often a very brief, very checkbox-y conversation about Advanced Directives, Healthcare POAs, code status, and the like. Maybe this is just a function of being a resident, but especially on a busy clinic day, it’s hard to dedicate time to helping patients think about death. Even if you do make the space and speak candidly and creatively, I’ve found many patients just stare at you with a kind of hesitant chuckle: Why you bringing this up now, doc? You trying to tell me something? How have you been able to protect and nourish these conversations with your patients and colleagues and students?
Lydia: I’m not going to pretend that I do any of this perfectly. But I have cared for some of my patients for many, many years. And the conversations build over time. It starts with the question, “Mrs. Smith, it’s flu season, COVID, etc., and if you became so sick that you’re unable to make your own medical decisions, whom should I call to discuss your medical decisions?” I follow this quickly with a, “Of course I’m not saying this will happen. But I just need to know whom to call.” If patients are able to name someone, I then ask if they’ve ever discussed their medical wishes with that person. And the conversation builds from there.
As you know, Brewer, the Medicare Annual Wellness visit requires that we ask about medical preferences for the end of life. I’ve had thousands of these conversations, and I’d say that fewer than a handful of times patients have gotten upset. On the whole, patients want to talk about dying and death, but they don’t know how to get the conversation started. I like to say that these conversations are akin to talking to adolescents about the birds and the bees. Everyone knows it’s important, but it’s really awkward to get started.
Brewer: Yes haha. That’s a great analogy. I find that patients just want candor—not flippancy—but a sort of gentle intentional directedness, particularly the elderly.
You quote Abraham Joshua Heschel during one of my favorite parts of your book, and I’m reminded of another line from him here: “The test of a people is how it behaves toward the old.” One of our geriatricians here likes to remind us that the largest population in America over the next few decades will be those greater than 65 years old: “You’re all going to be geriatricians whether you like it or not,” he says. How should we be preparing for a new era of elder care, especially with the ars moriendi in mind?
Lydia: That’s an interesting question in light of medicine’s commitment to mastery and productivity. Elder care is conducive to neither, which is why we face a geriatrician shortage. I’m afraid this means that health systems focused on lucrative subspecialties will end up neglecting the basic health care of a majority of the population.
But you ask how we should prepare for a new era of elder care, and the answer lies with Victoria Sweet’s articulation of slow medicine, which we discussed earlier. To care well for the elderly, we must undo a lot of what medicine has done—remove medications, relax testing guidelines, etc. But it’s less efficient to explain why a ninety-five-year-old doesn’t need his cholesterol-lower medication than to continue to refill the prescription.
Brewer: Yes so true. I know it’s easy for me to focus on what I can potentially do rather than step back and see what I should not do—what I can undo. Hence Berry’s objective.
That same geriatrics attending of ours also likes to quip, “Everyone dies poor and everyone dies alone.” His argument is that because modern medicine has become—in a sense—too good, it keeps folks alive well past retirement, where even the most prepared and wealthy eventually run out of money. Most families cannot bear the financial burden of home care, and so they end up alone in a nursing home. This happened to my grandparents at the end of their lives. My grandfather was a physician himself, and a good one, a wealthy one. My grandmother a nurse. But the last several years of their lives they literally ran out of money, and it was painful watching them retreat into smaller and more unfamiliar spaces as they approached death. In some ways this was allegorical and parabolic, but in other ways it was just painful. Are we dying poor because we’ve lived poorly, or is it simply the expense and complexity of living long into the dying process?
Lydia: Some die poor because they lived poorly by choice—lack of exercise, poor food choices, and tobacco or excessive alcohol lead to a host of medical ailments which require constant monitoring and intervention, which cost money. But it’s also true that we live longer. Living longer doesn’t necessarily mean we have to spend more on health care, but it can certainly mean that. And this depletes bank accounts.
The last chapter of my book provides concrete advice for mitigating excessive engagement in health care in older age. Aim to avoid procedures, surgeries, and hospital stays for the frail. Insist on data from doctors regarding the benefits and harms of particular interventions, especially for older folks. Think twice about cardiopulmonary resuscitation (CPR) and prolonged life support. Make decisions with older family members within the context of family or communities of support.
Brewer: Yes, I love the close of your book and “thinking twice about hospitalizations,” specifically noting the three ways patients tend to die: a healthy life with a slow decline, a healthy life with a swift decline (sudden illness or dramatic event), and finally an unhealthy life with a slow decline—what we often call “revolving door” deaths where those with organ failure or chronic illness spend decades in and out of the hospital in increasingly short intervals until they die. What are questions patients can ask to avoid or rethink hospitalizations?
Lydia: Oh, now we’re getting super practical! In the book I put forward the idea of something called “frailty assessments” as a way of helping us gauge whether our loved ones (or ourselves!) are too weak or deconditioned to tolerate medical interventions, surgeries, or even hospitalization. There are 5 questions. Have you lost ten pounds or more in the past year without trying? Do you always feel exhausted? Do you have trouble gripping your coffee cup? Do you walk slowly (as in 6 or 7 seconds to walk 15 feet)? Are you physically inactive? If a person is sixty-five or over and answers “yes” to 3 or more of those questions, that person is considered frail and unlikely to benefit from aggressive medical interventions. Obviously, this sort of thing isn’t definitive, but if Grandma, for example, is assessed as frail, you might want to rethink that hospitalization or medical intervention.
Brewer: What if one does rethink hospitalization and now your loved one is at home, dying? We’ve moved, as you write, from “the coffin and cradle equipped farmhouse” to dying in the hospital. The statistic being something like 80% of patients want to die at home but 80% will actually die in the hospital. I’m reminded of the deep attraction of dying at home, surrounded by family and friends (that is what I long for even now), and yet the sheer unlikelihood of that—and the difficulty and complexity and coordination of rendering a living room as a home hospice room—beautifully captured in Atul Gawande’s Being Mortal film, but horrifically captured in Matthew Teague’s “The Friend.” What makes it so difficult to avoid hospitalization and die well at home?
Lydia: It is difficult to die at home once the door has been opened to the offerings of modern medicine. For example, I know people who’ve intended to die at home but then opted to go to hospice, because their ground floor rooms couldn’t accommodate a hospital bed. But here’s a question: why do we need hospital beds in our homes to die well? It’s true there are some conditions where a flexible bed with siderails significantly decreases the discomfort of dying. But for many people, a regular bed with plenty of pillows could provide the same scope for adjusting position.
Once patients are offered the hospital bed, however, it’s hard to turn it down. It’s somewhat akin to telling a child that she can have a fancy remote-controlled car, or she can continue playing with her Matchbox cars. Obviously, the new toy is much more exciting. Human beings are wired that way. To answer your question, then, it’s the “stuff” of dying—the accoutrements—that often prevent us from dying at home. We believe we need a host of devices that purportedly make dying more comfortable, and those devices come with institutions.
Home hospice services typically require that family members be present around the clock for a dying person. The hospice agencies want to know that someone is keeping vigil, as it were. But this is difficult for many families to do, especially when they also have work outside the home. And since patients and families have been socialized to expect the support of professionals (that is, home hospice agencies) in care of the dying, it is difficult to envision care of the dying in any other way.
I have a physician friend here in the US who originally hails from Latin America. She and her family live together with her mother and until recently, with her grandmother. As her grandmother declined and her dementia worsened, they kept her at home. My friend’s mother provided most of the care. When she stopped eating and drinking—common when advanced dementia approaches death—they did not take her to the hospital for fluids or a feeding tube. Rather, they continued to attempt spoon feeds (which she ultimately refused), kept her clean and in good company. She passed from sleep to death in her little bed that she shared with my friend’s mother, the same way that people have died in homes for eons. No hospital bed. No visiting hospice nurse. No morphine. She just fell permanently asleep. This sort of death is countercultural in the US today.
Brewer: Yes. It seems so countercultural as to be shocking. It reminds me of the countercultural arguments in Paul Griffith’s “Defending Life by Embracing Death.” He also writes that death and dying should be closer to home. Children should be permitted and encouraged to see dead bodies and the dying process from a young age, and we should seriously reconsider closed caskets and the use of cremation. It seems like we are surrounded by more fictionalized death than ever before (perhaps that plays in to how we imagine the deathbed as requiring hospital tech?), but ironically with less visibility of actual death and dying at the same time. Should children be permitted and encouraged to see dead bodies and the dying process? No more cremation or closed caskets?
Lydia: There’s no question that children should be involved with care of the dying and preparation of dead bodies. I wouldn’t go on record saying that we must have open caskets, in part because I’m not a fan of embalming, but if we actually revived care of the dead body within our own homes, it wouldn’t matter whether the casket were open or closed.
I remember taking my young daughters to visit my grandfather on the nursing floor of the senior living center where my grandmother still lived independently one floor above him. My grandfather was reduced to a stick figure of his former self. He was ninety-four, in diapers, dependent on nurses to move from his bed. He had lost his false teeth somewhere. Always a jokester, he tried to get my daughters to laugh, but they found him frightening and strange. And he was a little, even to me. We lived a plane ride away, and I knew that it was likely the last time we would all see him alive. But I lamented that my daughters didn’t spend more time with him as he declined. If we all had been able to walk toward my grandfather’s death with him, we would have seen him grow smaller and frailer, and his near-death state would have been far more familiar and less frightening.
Brewer: My grandmother also grew frightening as she died—lots of venous ulcers, tracts, bed sores. But those wounds became a sort of gathering space for our family. My mother cleaning the wounds, my dad and uncle and I holding her body, my sister and cousins singing, weeping. Not all moments were like that, obviously (sometimes it was just ugly)—but it became an occasion for something familiar, healing, and moving.
Speaking of fear and familiarity, you point to the memento mori, asking whether we might approach the end of our lives differently if we had spent the last eighty years with a painting of a skull hanging on our living room walls. Are there ways we can recover this? If not a literal skull then something else? Thomas Howard writes in Christ the Tiger about the simple realization that his leather shoelaces will outlast him. Jane Kenyon of the long grey hair found in the pail while scrubbing the kitchen floor. Ordinary things can be unexpected reminders of our finitude. At the same time, I suspect these things are unlikely to be as memorable as a skull. It seems like the memento needs to be somewhat out of the ordinary and disruptive. I’ve come to use a piece of petrified wood on my desk as a memento mori, and I suppose I’ve been intentional about placing photographs of my paternal great-grandfather and grandfather (both dead) right next to photos of my two young boys, but those things are not extraordinary even if they are intentional. Are there ways we can recover the memento mori? Do you have one?
Lydia: Haha. I have all kinds of memento mori, not least a bookcase full of books on death. I was underway with my first book project when my oldest daughter was learning to read. She’d read the titles of my books on death, dying, disease, and decay, and then she’d go to preschool and talk about it. Needless to say, the principal was not thrilled.
The key to the memento mori is that they have to move around. If it’s a picture on the wall, I stop looking at it. But if we move the art or the old photographs around, there’s impetus to see them anew. This is why books on death are such a great memento mori; I’m constantly reading and re-reading different ones, trading them out for new ones. There’s always a new book on death to remind me of my mortality.
I also reflect on my own aging as a sort of memento mori. Changes to my fingernails, teeth, vision, joints—all function as memento mori if I take the time to think about it. And I do. My patients’ stories also function as memento mori. I find myself reflecting on their new and abrupt diagnoses, accidents, and other traumas over the course of the week. My mother was recently in a car accident and miraculously survived. She’s still here, shaken and battered, but very much alive. But it was a reminder that at any moment any of us can die.
Brewer: Oh wow. I’m glad she lived. Perhaps on that note we can turn to death explicitly? You suggest that we might “die into life” rather than away from it. Can you say more?
Lydia: The poet Christian Wiman says to die well is “to believe that there is some way of dying into life rather than simply away from it, some form of survival that love makes possible.” He says this is true for the atheist as well as the believer. I understand dying into life to mean going deeper. As we prepare for death over our lifetimes, and as our capacities wane, we should grow in our relationships, in our cultivation of virtue, in our understanding of what gives our lives meaning. Dying into life leads to survival not annihilation. For the atheist, that might mean questions of legacy, of indelible impact on children and grandchildren and communities. Believers might also be interested in question of legacy, but religion of course adds further layers to the sort of survival made possible by love.
Brewer: Yes, I love the other Wiman quotation you use: “Even atheists want to die well, or want those they love to die well, which has to mean more than simply quiet resignation to complete annihilation.” Frankly, I see this in both Christian communities and on the medical wards—a sort of too-easy flippancy toward death or a totally jaded acceptance of it. The former is so comfortable with death that it begs the question of what exactly life is really for, while the latter seem so comfortable with death that it begs the question of why we’re practicing medicine at all. What’s the problem with quietly resigning or merely accepting death?
Lydia: If death were merely loss of the individual, it probably wouldn’t be a big deal if we quietly resigned. But death nearly always tears a hole in the community fabric. Death creates a void. It harms. It stings. This is the reality of loss. A dying person may very well accept his death, but the onus is on him not to do so quietly. His community stands to benefit from understanding how he makes sense of his dying, why he accepts it, etc. Resignation to complete annihilation sidelines the community.
Brewer: Hot button here on the theme of annihilation: You write powerfully that “physician assisted suicide merely extinguishes fear by extinguishing the person who fears.” I can’t help but think of Stanley Hauerwas who wrote in a similar rhythm that we increasingly “eliminate suffering by eliminating the sufferer.” You’ve debated folks like Timothy Quill on physician-assisted suicide (increasingly reimagined as “physician aid in dying” or PAD). Can you maybe give us a brief lay of the land in this debate? Why should this be something we pay close attention to?
Lydia: Look, I’m a physician, a healer of bodies and a comforter of the dying. I use the tools of medicine to guide my patients toward health and flourishing. Using my tools to make patients dead is to misuse—some might even say, to abuse—the trust patients have placed in me as their doctor.
The arguments in favor of physician-assisted suicide draw heavily on individual rights to self-determination or autonomy. They are an extension of the “my body, my choice” rhetoric, and they have validity. If we truly are lords of our own bodies, then why not put an end to ourselves before suffering gets the better of us? The most immediate problems with this argument are that (1) we do not die in a vacuum. Death always causes suffering for those left behind; and (2) advocates of physician-assisted suicide expect health care professionals to do the duty of making them dead. As I mentioned, this is a misuse of the power of the doctor.
But there are other concerns with physician-assisted suicide. Vulnerable patient populations—whether racial and ethnic minorities, those with disabilities, those with dementia, the illiterate or uneducated, the poor—have always faced discrimination in health care. Even going back to Plato, doctors treated slaves differently to how they treated free people. In countries where physician-assisted suicide and euthanasia are normalized, it will make sense to facilitate the deaths of those who are a tax to the system. Canada legalized medical assistance in dying in 2016 for those with terminal illnesses, and recently expanded those eligible to include people with mental illness and disabilities, even if they are not near the end of natural life.
Brewer: Sort of inverting the question from intentionally killing life to intentionally prolonging it, I’m thinking back to the first few pages of your book, where you point to a Harvard study that found that patients who have high levels of support from their religious communities are more likely to choose aggressive life support and die in intensive-care units at the end of life. They were also less likely to enroll in hospice. What’s going on there? Why are Christians in America choosing aggressive measures at the end of life and avoiding hospice?
Lydia: Well, the Harvard researchers wanted to understand exactly that question. Why is it that folks who describe themselves as highly supported by their religious communities behave as though medical technology is their only hope and salvation?
They had a number of hypotheses, ranging from belief in miracles and divine healing to the sanctity of life. So they decided to test these hypotheses by asking religious leaders what they understood about medical care at the end of life. It turns out that clergy understood very little. They tended to overestimate potential benefits of medical interventions and underestimate potential harms. The researchers concluded that in their zeal to encourage faith in God, religious leaders might inadvertently guide their flocks toward unhelpful treatments that cause greater suffering.
Brewer: Why do you think patients bring their existential or spiritual concerns to you, their primary care doctor? And how would you advise clinicians to respond to patients who raise spiritual or religious questions—particularly at the end of life?
Lydia: I’ve met very few people who were 100 percent convinced that the material world is all there is. Even people who hate the idea of God or who say they hate God still find a certain dis-ease when they think of an all-powerful or all-knowing divinity. Having said this, it makes perfect sense to me that among the host of concerns my patients bring to their office visits, existential concerns would be included. Whether it’s the terminal diagnosis or death of a loved one or one’s own horrible disease, our finiteness makes us think differently about the meaning of life and what happens when we die.
Patients mention these concerns all the time, and doctors can respond to them if they keep their ears open. I never initiate the conversations, but when patients drop these questions about meaning and purpose and hope or despair, I ask a follow-up. How do you make sense of the meaning of life? How were you raised? On what resources do you draw for strength in difficult circumstances? What gives you hope? Clinicians can start with these questions and let their patients take it from there. It’s not preaching but merely responding with empathic questions to the existential ponderings patients raise.
Brewer: Those are great questions. I’ve personally found the question “what do you hope for” to be particularly generative.
I want to shift gears here as we near the end, from keeping open our ears to keeping open our eyes. I love your story about encountering the Isenheim Altarpiece and I also love that piece. You give us elements of an ekphrasis and it’s funny but also moving to walk alongside you. And yet, just as I have a hard time imagining Sir Luke Fildes’ classic The Doctor in our hospitals today, it’s hard for me to imagine something like the Isenheim Altarpiece in our churches today. I think specifically of how the Instagram aesthetic—that crisp, ultra-hip, golden-hour standard—dominates the social media of our institutions and churches alike. I used to do our church’s graphic design, background slides, etc and I also used those images, but I remember trying to smuggle in these starker depictions of Christ’s suffering and old rich works and running into pushback. People don’t want to see John the Baptist’s head on a platter or St. Anthony’s demons, and yet clearly these works of art remain transformative in a way that the nice sunset cross image simply is not. Why is that? What was so powerful about the Isenheim Altarpiece? Do we have eyes to see something like that today?
Lydia: Artistic masterpieces are not readily digestible. I spent days researching the Isenheim Altarpiece prior to traveling to France to see it for myself. And then I spent a whole day with the images in person and hours writing about it afterward. I still haven’t exhausted the altarpiece. By contrast, Instagram images are designed to be consumed in an “instant.” So it’s not that people today lack the capacity to work with these older works of art; it’s just that they take some effort.
We definitely have eyes to engage older works. We sell ourselves short to suggest otherwise. Instagram images might be polished, but they aren’t all pleasant. If we’re willing to be challenged and to grow—which many people are—than we can spend some time with the masterpieces.
The Isenheim Altarpiece is spectacular on many levels—its underlying narrative, the way the painted images disrupt and challenge that narrative, the use of color, the painter’s skill, the carpenter’s mastery, its multiple panels, its use as art therapy. It’s an incredible work.
Brewer: I totally agree that we sell ourselves short. I think it just takes time, patience—a willingness to surrender. It never ceases to amaze me what happens when you “press pause” in the art museum and force yourself to read the same painting for longer than the token five minutes. When you treat each piece as a you would a favorite album or movie or book, amazing things begin to happen.
On that note, I have to ask about the artwork you included in your book. You’ve mentioned before that your original vision for the book was to pair each piece of artwork with each chapter, much like how the woodcuts of the original ars moriendi would have accompanied each of its sections. Why artwork for this book? What is your relationship with the artist Michael W. Dugger? I suspect, given your attention to Isenheim and Wiman and the artwork of your own patients, that you think artists have a vital role in helping us recover a new ars moriendi? If I could continue down this line, I’m convinced that your inclusion of artwork renders the claims you’re making for a new art of dying more visible or actionable in some way that otherwise could not be without the presence of the artwork—something about the staying power of a work of art to prime and shape the moral imagination. This effect is somewhat lost by their bundling in the back of your book, but I still think the force is there. Do Dugger’s lithographs do a kind of moral work in and of themselves?
Lydia: Early in the process of writing the book, several people insisted I needed images. It didn’t take much to persuade me. One of the earliest versions of the ars moriendi was illustrated so that the uneducated could also participate in the work of preparing for death. Most people in the West today are literate, so images aren’t necessary for that same reason. But visual representations do “speak” to some people more powerfully than words. It made sense that if I intended to write a modernized version of the art of dying, I needed to include images.
Michael Dugger is the artist who drew the images for my book. He works in mixed media, and although he did the renderings in ink, we had initially talked about doing woodcuts—like the original ars moriendi images. We later abandoned this idea because it was so time-intensive and costly. Michael is also a firefighter and paramedic and has seminary training. I’ve known him for decades, since before he became my brother-in-law, and his work has constantly occupied that space between life and death, religion and secularism, beauty and decay.
Do artists have a vital role to play in recovering an ars moriendi? I believe they could have an important role to play if they choose to accept. But as with so many people, some artists don’t want to face the discomfort of mortality head on. The invitation is open though.
I will digress for a moment and explain how the images came to be bundled in the back of the book. My publisher was very supportive of images to accompany each chapter, but some of the images proved so disconcerting that the press wanted to do away with them. It was too late at that point to reimagine a third of the artwork, so I petitioned instead for the creation of a “Gallery” at the back of the book to house all the art. Many people have told me that although they wished the images would be placed at the beginning of the corresponding chapter, they also found the Gallery at the back a helpful review of the book’s content. So the jury’s out.
You ask whether Dugger’s art does moral work? The answer is definitively “yes.” As I write in the book, “There is a way in which art stirs us to moral action. Beauty provokes desire, to be sure, but art can also prompt other responses. In the case of the ars moriendi, the art of human finitude provokes anticipation and preparation for an inevitable end.” When we see images that stir something deep within us, we are forced to respond. I’m hopeful that the images provoke a host of responses, from facing decay of the body and mortality squarely, to consideration of ritual and belief, to renewed commitment to personal relationships.
Brewer: Wonderful. Totally agree. Last question here, Lydia. And let me again thank you for this time and your attention to these questions. Really a joy and a mark of your generosity.
It seems like someone could read your book and think “Man, I want to practice an art of dying. I want to love my parents well when they die, help my community learn to die, and I hope to die well myself” and yet find the next step perhaps overwhelming. Similarly, it seems like a resident physician or clinician could also read and think, “I’ve seen a lot of ugly deaths, a lot of lonely ones too, and I want my patients to die well, and yet I can’t see how.” What’s the first step here? Sit down and write out a ritual? Contact loved ones and deep friends and pray and create an ars moriendi together? Talk to our pastors about creating an ars moriendi study to just have a space to address how Christians die? Is this the kind of thing that needs yearly renewal, in which we, in a sense, “rehearse our roles” should death or illness come unexpectedly?
Lydia: A big misconception about the “art of dying” is that it is for the end of life. But the thrust of the ars moriendi is living well in order to die well. That means we all can start today by identifying what gives our lives meaning, work to grow in those areas, nurture relationships with the people we hope will one day be at our deathbeds, invest in community, etc. It can also mean learning more about what cardiopulmonary resuscitation (CPR) entails and talking with our doctors about how to make sense of medical technology.
For those with religious traditions, it is an invaluable exercise to try to write out one’s funeral, making a list of songs, hymns, Scripture or other readings that you’d love at your funeral. And then consider: why those readings? Why that music? And who would you want to participate? Who would officiate? Who would speak?
And yes, the whole point of the ars moriendi is to do this work in the context of community, so if you’re a religious service attender, it is exactly the right idea to take this up with your clergy person and church or synagogue. I personally think it would be terrific if Christian communities could learn from their Jewish brothers and sisters how to prepare bodies for burial and take this work once again upon themselves. The work of preparing for death needs to be repeated again and again, built upon, refined. Congregations might repeat it every Lenten season as they repent and renew commitments in anticipation of Christ’s death. You’re right that the tasks of the ars moriendi are not a one-off. The work of preparing to die well is the lifetime work of living well.
Brewer: Thanks, Lydia. Really a gift.