Lydia Dugdale: Death

2-13

Commons

January 26, 2017

Lydia S. Dugdale, M.D., is an Assistant Professor in the Department of Internal Medicine at Yale School of Medicine. She is the Associate Director of the Program for Biomedical Ethics at Yale School of Medicine, a member of the Yale- New Haven Hospital Ethics Committee, and director of the faculty bioethics journal club. She cares for patients and teaches medical ethics. Her book, Dying in the Twenty-First Century: Toward a New Ethical Framework for the Art of Dying Well was published by MIT Press in 2015.

* Ars moriendi refers to a genre of literature that developed during the aftermath of the Bubonic Plague, which struck Europe around the 1350’s. The plague was so devastating that up to twothirds of Europe’s population died. Generally, about one week separated the first signs of illness from death, leaving little time to prepare. At the time the plague struck, Europe’s leading social authority was the Catholic church. Because there were— according to the church—potential eternal implications of not properly attending to the dying or dead, there emerged a genuine need for laypeople to know how to care for the dying and to bury the dead. The church responded to this need by issuing a handbook on preparing for death. In the early 1400’s, this handbook was translated and circulated widely throughout Europe.

1 Why is your work relevant to a broader audience outside of your specific discipline?

The phrase ars moriendi is Latin and means “art of dying.” The central thesis of the ars moriendi* is that one dies the way one lives. If you want to die well, you have to live well. This means that you have to be able to ask questions about what it means to live well. The ars moriendi genre of literature was adopted by Protestants, then by Jews, and eventually by nonreligious society more broadly. It was very popular until about World War I. When I was in medical training I was struck by how poorly people die. I recall successfully resuscitating dead patients who later told me that they wished they had never been resuscitated. I have had many patients tell me horrifying stories of loved ones dying highly medicalized deaths in intensive care units, surrounded by an overwhelming number of machines. I was struck by the amount of suffering that even the best-intentioned physicians can facilitate while trying to keep patients alive. Part of the reason I ended up putting together the book was that the ars moriendi seemed a novel way to anticipate and prepare for death. Those who live their lives cognizant of their own mortality and aware of the finitude of medical technology, will have a very different sort of life and a very different sort of death than those who live in denial of finitude. Part of what I love about the ars moriendi is that it starts at the beginning of life. All of life is about preparing for death. The original ars moriendi offered scripts for each member of the community. One of the images of the ars moriendi is that of the dying person as the central actor in a great drama in which every member of the community has a role to play— including children. By being present at the bedside of a dying person, even children can begin to think about death and prepare for it. I think it’s really important to recognize that in many cases human relationships have gone from being real relationships to being negotiated deals and exchanges. In medicine, this idea of the doctor-patient relationship goes back to ancient Greece and Hippocrates: its essence is that the physician has the patient’s back and cares about how a particular treatment will affect the patient and his or her community. Increasingly, the word that is used in medicine to describe clinicians is that of “provider.” You come to me for a service, I provide that service; I am your provider. I wonder how that language is affecting the way doctors see their patients. I know my care is different if I think of my patients as human beings with stories and histories and families and communities… it’s very different if I think of a patient as someone who is there for a service.

2 What are the “commons” that your specific work fights to preserve, protect, contest, or share?

When you asked that question I was thinking that “commons” would mean the good death. When there is no hope that a technological intervention can turn an ailment around, a highly medicalized dying process can often lead to a bad dying process and death. I would say that the good death is the commons toward which I strive both in my scholarship and especially in conversations with patients. Talking about the preparation for death is something I do with all my patients on Medicare, because Medicare asks that I at least start this conversation with them.

3 What is at stake in your work? 

All of our disciplines need to be able to ask questions about why we are doing what we’re doing and to what end. What are the goods that we are pursuing and are they good? Are the goods good? This might seem obvious, but we often don’t ask that question. Because if we’re just pursuing the next project to keep the lights on, if I’m just taking care of patients to generate revenue for an institution, that can actually be a bad good, or a good good for a less good end. In medicine, there’s no shortage of suffering to try to alleviate, but the bigger challenge is how to alleviate suffering while not commodifying the interaction, to continue to see my patients as the human beings that they are. I think medicine does a poor job of asking questions about goods and ends. We’re so busy on the hamster wheel of producing and generating revenue that we lose sight of why we’re doing what we’re doing. Our communities are huge parts of not only helping us live well such that we die well but also helping us to respond to the voice that calls us to what we do. The word “vocation” implies that there’s a calling on our lives; there’s a purpose for us. So if I’m doing what I’m meant to be doing, then how do I do that with all of my heart and all of my strength? How do I do that to the best of my abilities? What is my community like that is encouraging me to run the good race? How do I take care of my patients well, my clients well, my community well, my self well? I think architects are as much victims of poor self-care as physicians are. [laughter] Those are the questions that we need to be asking and I think that the only way we can realize an ars moriendi in the 21st century is if we ask those questions. Because if it’s just about “do I resuscitate or not resuscitate?”, “do I die in the hospital or in hospice?”, then we’re missing the point. We’re not asking questions about goods and ends.

4 What are the physical spaces that potentially perpetuate or exacerbate the issues your work seeks to redress?

I think that there’s a real tension between the institution and the home. The institution wasn’t a possible location for death in the 1300’s and 1400’s. In fact, it’s only become the location for dying within the last hundred years. Institutions, particularly huge medical complexes, quickly strip people of what makes them unique and members of a particular community or culture. People are assigned patient numbers and room numbers. They might even be identified by their disease. The efficiency [of] the large institution requires that everyone be made the same. One challenge for both doctors and architects is to rescue particularity from the sea of sameness, so as not to lose sight of the individual as person.