Despite the bloom and new life of springtime across the U.S., in many cities, the sound of sirens is a constant reminder that death looms near. The coronavirus pandemic has, in a matter of weeks, taken more than 170,000 lives worldwide. More losses are expected among the nearly 800,000 Americans who have tested positive for the virus and the countless others who haven’t been tested but who have it. Difficult decisions about when to sustain life, and which lives to sustain, are plaguing families and overworked medical teams alike.
Lydia Dugdale, director of the Center for Clinical Medical Ethics at Columbia University, is perhaps prepared more than most to face death. As an outpatient primary care doctor and a medical ethicist, she is used to seeing people die and to weighing the existential questions that arise at the end of life. In addition to her medical degree from the University of Chicago, she earned a master’s in ethics from Yale Divinity School, and she co-directed the Program for Medicine, Spirituality, and Religion at Yale School of Medicine.
Dugdale has also spent more than a decade recovering ancient wisdom from the tradition of Ars Moriendi, which translated from the Latin means “the art of dying.” Beginning in the fourteenth century, as the bubonic plague ravaged Western Europe, the Ars Moriendi was a handbook on how to prepare for death. “A central premise [of the handbook] was that in order to die well, you had to live well,” writes Dugdale in a new book, The Lost Art of Dying. “Part of living well meant anticipating and preparing for death within the context of your community over the course of a lifetime.”
In between shifts in New York’s emergency overflow clinics in early April, Dugdale spoke to Katelyn Beaty about how to grapple with mortality in light of COVID-19.
Religion & Politics: What does daily life look like on the frontlines of New York’s health-care crisis?
Lydia Dugdale: I’m new to Columbia [University] and was about to begin taking care of my own panel of patients when the pandemic broke. Since I don’t have a regular clinical home established yet, I’ve been working in every capacity possible to try to help. That has largely manifested as working in the emergency room overflow clinics. We have set up a couple of different clinics to divert patients who are headed to the emergency room but perhaps aren’t severely ill. They need guidance, counseling, assurance that they have the virus or not, and instructions on what to do next. The hospital is admitting only the sickest patients, so if we can keep those patients out of the emergency room by seeing them in this ancillary mini-emergency-room clinic, that helps to reduce the burden on our emergency doctors.
In addition, I’m a medical ethicist and the director of the Center for Clinical Medical Ethics at Columbia and the associate director for the clinical ethics committee at New York Presbyterian Hospital, so between the former role, which is a lot of teaching and mentoring students, and the latter role, which is making these decisions at the bedside, there are just a lot of ethical questions on the table right now. The media has covered many of them, specifically: What do we do about shortages of equipment, shortages of ventilators, shortages of personal protective gear? Do we resuscitate patients with the virus or not? Everybody is working together to try to come up with guidance and best practices and also to make decisions in accordance with the law that don’t discriminate against the elderly or disabled.
R&P: How do you respond to debates that, crudely speaking, pit saving as many lives as possible against saving the economy?
LD: I prefer to use the language of long-term health rather than economics, because if I use the language of economics, it seems like I’m saying that we don’t care if people die now because we’re more worried about the economy. That’s not at all what I’m saying.
Sociologists and medical researchers have long shown that economic indicators directly correlate with health on many levels. It’s not only that socioeconomic status correlates with health, but education levels correlate with health, access to fresh fruits and vegetables correlate with health, whether people live in food deserts and can only buy their groceries at a pharmacy which sells canned and packaged food correlates with health. All of these things are tied to economic wellbeing. There’s a real tension there, and I don’t know that any of us has an easy answer for it. Certainly, it makes sense to me that once someone has had coronavirus, that person should be able to go back to work. And I have seen novel plans put together that would mobilize a post-sick workforce.
There are several things we still don’t know: Can you become re-infected with coronavirus? There’s a possibility because viruses mutate, but most of us believe that you probably are sufficiently immune once you’ve recovered from coronavirus and that you probably won’t become desperately sick again. Is it possible for a person to spread germs even if he or she is not sick? Yes, we know that’s true. We all carry bacteria and viruses on our bodies all the time. So, it’s not that the need for vigilance goes away. But there is a way in which we’ve had so many people get sick, and especially so many young people. Can we get those people back to work to try to help mitigate long-term detriments to health that we see as a result of an economic downturn?
R&P: Based on your training as a physician and as an ethicist, what is the central calling of medical workers during a pandemic?
LD: My fellow physicians have been proving themselves hardworking and committed and selfless during this time in ways that I don’t know that any of us could have predicted. It’s been incredible to watch people step up, and to see tens of thousands of people come out of retirement. And folks coming out of retirement tend to be older, so they themselves are at higher risk for getting sick. But yet they see that no other time in our lives, this is the opportunity to serve with this skillset that we have. So, I’ve been really impressed.
Even before the pandemic, my favorite role to occupy with patients is to help relieve anxiety and fear. There’s so much anxiety around health at baseline on a good day, and the pandemic has amplified that. Oftentimes what is most fearful for patients is the unknown, feeling disempowered, not having access to information, or not knowing how to make sense of the information that is out there. I’ve really been grateful for the opportunities I’ve had to spend with COVID patients already, just explaining to them what to expect, what to watch for, how to care for themselves, how to care for others, educating them, answering their questions. The language is often accompanying people on their journey of illness. I’m hopeful as we know the majority of people do recover, but also we need to prepare people for the possibility that they won’t recover or their loved ones won’t recover.
One of the most important things we can do right now, while we try to give hope, is also to prepare our patients for the worst and for the possibility that recovery is not possible, and therefore if they cannot recover, they need to prepare for their deaths. It’s hard for everyone to have these conversations, and doctors are socialized to focus on cure and treatment and quick fixes and solutions. Doctors are not socialized to sit with someone and say, “This is a very serious illness, and I’m afraid there is nothing else that we can give you to delay death.”
R&P: As the coronavirus spreads, many of us now know someone who has died or know someone whose loved one has died. And yet a central claim of your book, The Lost Art of Dying, is that most of us don’t know how to think or talk about death. What factors have contributed to us becoming “inhospitable to the art of dying,” as you write?
LD: It was very common for maybe the last 500 years up until the twentieth century to anticipate and prepare for death. Part of what it meant to live well was to prepare for death even while a person was still healthy. Around World War I, the United States suffered devastating losses, then it met with the influenza pandemic at the end of World War I. We rolled from that into a period of significant economic progress in the United States, and by the end of the 1920s, we started having medical discoveries, penicillin, and then things really picked up.
Over the course of the twentieth century, medicine went from being something of an art of holding a patient’s hand, and presence, to having significant tools to delay death, and in fact to sort of get rid of death altogether. So by the 1950s and 60s, we have early intensive care units, by the 60s and 70s, organ transplantation is picking up. … HIV/AIDS came on the scene in the 1980s, and then we developed treatments that essentially turned AIDS from being a lethal disease into a chronic illness just like diabetes. There’s this sense that the medicine of the last 70 years has made it possible for us to live without death in view.
Traditions of caring for the dying and the dead have been professionalized. Older folks go to nursing homes or they have in-home caregivers, but it’s not the family necessarily who is providing that direct care. And similarly, caring for a dead body is done by a funeral home director or mortician, but not cared for by the community. We’ve outsourced our care for the dead and the dying.
R&P: You say that we need a modern Ars Moriendi, a handbook today to prepare well for death. What in your view are central elements that need to be in a handbook of this sort?
LD: The Ars Moriendi was a body of literature that developed in the aftermath of the bubonic plague that struck western Europe in the mid-1300s. Interestingly, it developed we think out of the Catholic Church, but it was quickly picked up by Protestants in the 1600s and by Jewish individuals and then finally by mainstream secular society by the 1800s in the United States. At its core, the Ars Moriendi focused on an acknowledgement of finitude that one maintained and cultivated throughout life, in the presence of community. So, it’s this idea that we need to be thinking about our mortality even now while we’re healthy, in the context of communities that can help us make sense of the questions that pondering mortality necessarily evoke.
In fourteenth- and fifteenth-century Western Europe, the social authority was the Catholic Church … Most people came under the auspices of the Catholic Church and so it was easier to articulate then what it is that folks should believe, what practices they should have, what rituals, etc. Now, things are significantly more complex in terms of the makeup of society, which is why a modern Ars Moriendi, or art of dying, really needs to leave it up to individual faith communities or philosophical communities to work out their own answers to these big questions. It’s not like they have to come up with new answers. This work has been done; people have been thinking about these things for thousands of years and writing very thoughtfully and richly and wisely about them, but it is up to the work of individual communities to dig into that and talk about it.
R&P: How would you respond to the attitude that we’re here to enjoy life and that developing a handbook on death is overly morbid or negative?
LD: We live better if we live with a view to the end. We make better choices; we care for one another better. It’s when we don’t recognize limits that we tend to be much rasher as individuals. So, there’s a way in which limits or boundaries help us value the time that we have all the more. And then valuing time translates into all sorts of things, like how we nurture relationships or how we spend our time or give away our money, or not.
In my experience as a doctor, it’s my patients who have never wanted to squarely face their finitude who arrive at the end of their lives completely panicked and unprepared and regretful. That’s partly why I wrote the book: I wanted to help my patients prepare before they got to that point, because I had walked that final road with too many people for whom death was absolutely petrifying.
It’s not that people aren’t fearful when they face death; fear is a natural response to something we’ve never experienced, and none of us has ever experienced true death. Even people whose hearts have stopped on the operating table and maybe they saw white lights … that’s not the same as being dead and not coming back.
At the same time, fear and dread and disorientation are so much greater for people who have never given any thought to this and then suddenly find themselves languishing in an intensive care unit showing only signs of deterioration and not improvement. The coronavirus has done a lot to wake society up to think about their finitude.
R&P: What are unhelpful ways that religious communities talk about death?
LD: It is common for people to fear death, no matter how well they’ve worked out their answers to questions about life and the afterlife. This sort of fear combines apprehension about the unknown with fear of self-extinction. What’s unhelpful is when religious communities suggest that fear of death means a person’s faith is weak or absent—to put it bluntly, that the individual is damned. I don’t hear this sort of rhetoric so much these days, but for many years it was a common refrain in some Christian communities.
R&P: Beyond talking regularly about mortality, what are specific rituals or routines that religious communities can use to help congregants prepare for death?
LD: For those who belong to liturgical traditions, the liturgy itself is full of references to the preparation for death, especially throughout the season of Lent. The key for practitioners is to pay attention to the content and meaning of the liturgy and not merely to recite it by rote. For congregations that don’t have a formal liturgy, it’s even more important that clergy preach and teach on the preparation for death. If our communities are to help us make sense of life’s big questions, then it falls in part on leaders of our communities to facilitate these conversations.
Religious communities would also benefit from a thorough study and discussion of rituals related to dying and death. For example, why do we send the bodies of the dead off to the funeral home? Would it benefit our communities to learn again to care for and prepare the bodies of the dead, as with the Jewish tradition of tahara? Why has the body traditionally been present at a funeral? And where should the body be placed in the sanctuary? There are well-worked-out answers to all of these questions, and we can learn much if we care to investigate the work that’s been done.
Part of what ritual does for people is to provide a script and plan for navigating uncharted waters. Communities would benefit from rediscovering and adopting the catechisms, prayers, and texts of bygone eras to help prepare well for death.
R&P: As you have written this book and are regularly witnessing death in a medical context, how has meditating on death changed how you live?
LD: I grew up with a grandfather who was shot down and had two plane crashes and was a prisoner of war and talked about death all the time. The conversation has never been far from my consciousness, since the beginning.
As I have done my scholarly work on the preparation for death over the last decade plus, it’s become a part of our conversation in the family, more acutely with the pandemic. My children are ages 8 and 10, and we’ve talked about it quite often, actually … We’ve worked hard to talk clearly and honestly about the number of lives being lost and how there’s no guarantee that Mommy or Daddy will necessarily be alive at the end of this. We live in New York City in a relatively small apartment and are all under lockdown as the city is, and it can be very easy to get on one another’s nerves. At the same time, our constant refrain has been that we need to treasure our time and care for one another well, because we don’t know how long we have together. That’s become part of our daily conversation.