Enhancing Death, Enhancing Life: A Q&A With Daniel Sulmasy

What is the topic of your research for the Enhancing Life Project, and has there been anything in the news or in public discourse recently that has struck you as particularly relevant to the topic of your research? 

My work concerns enhancing the life of dying persons. When we think about a project called “Enhancing Life,” we have to remember that everyone dies, that people who are dying are still living, and that their lives are worth enhancing because they're part of our human community and we have obligations to them that are equal to those that we have to others. Dying has been in the news a lot lately: particularly—and I think unfortunately—regarding the legalization of assisted suicide. 

With regard to the topic of assisted suicide: in what ways is the framing of the public debate surrounding this issue perhaps not the most productive? In what ways do you think that those debates could shift productively? 

I think it’s largely framed as a question of "consumer rights." I think we've been stuck with this framework since the ‘60s, when people used to be kept on ventilators against their will. Bioethics more or less invented autonomy as a principle of medical ethics—recognizing the autonomous wishes of patients not to be treated seemed to be the way to go in order to prevent people from getting end-of-life treatment that was really not helpful. But we've been stuck with that framework for a long time, and so the ethics of care at the end of life has been cast as a continual battle between the doctors’ wishes to treat patients or to keep them alive and patients' wishes to be relieved of their suffering—it's pitched in this adversarial way. Assisted suicide becomes a matter of, "I don't want to live anymore, and you, doctor, are depriving me of my right to kill myself." But the approach I take in my own project is thinking about what it is that is actually going to enhance the life of a dying person. Looking at in that way, I think, helps us to see the ways in which asking about euthanasia and assisted suicide is really the wrong question about care at the end of life—what we really want to do is to ask how we can make the lives of persons who are dying better, and what we can do to establish the conditions that help them to flourish as human beings even as they are dying. I think that's a healthier way to look at it than to frame it as a question of rights. 

How have your experiences as a medical practitioner, talking with patients who are actually being faced with end of life decisions, informed your research? 

The research method for my projectis primarily philosophical and theological, and fairly theoretical. I bring to the table the theoretical skills to be able to try to reconstruct the way we think about care for dying persons—but in addition to those theoretical skills, my way of thinking about these questions is necessarily informed by my experience as a clinician. 

One of the things that I think I'm adding to the discussion that most philosophers and theologians can't is a philosophy of medicine: asking what medicine is, what its goals are, where it fits in society, and how it has obligations to all sick persons, including those who are dying. That way of thinking is drawn immensely from my own experience. For instance, I'm writing about what I call the "canons of therapy." No one who’s been doing research about medical ethics for the care of the dying has asked questions like: What does it mean to be in a therapeutic relationship with another person? What are the rules that tend to govern that? To think about these questions as a clinician, and try to theorize what I have done for 30 years as a clinician, helps immensely in informing the way in which this project develops and progresses. 

This is certainly one of many topics wherein a cross-disciplinary perspective could be particularly helpful. What are some limitations you've encountered in the extent that the medical field might be resistant to more kind of theoretical developments, or limitations to applying practical clinical experience to theory? 

I described the project once to a physician, a prominent person in care at the end of life (who thinks like a physician even though she's now mostly doing public policy about these issues)—and she said, "Kind of far from where the rubber meets the road, huh, Dan?" And I said, "Well, what I'm actually trying to do is to find out whether we can make a new material for our tires so they run better when they hit the road." 

The initial reaction of clinicians is to be almost allergic to anything theoretical. This is odd, because no one would say that the theory of nucleic acid replication and post-transcriptional methylation is "too theoretical" and therefore shouldn't be used in thinking about genetics and diseases. So, I try to explain that just as the basic and biological sciences have something to contribute to medicine, so too theology and philosophy have something to contribute to medicine. To incorporate these insights well is going to require a degree of theological and theoretical sophistication that clinicians are used to demanding of their science, but not used to demanding of their ethics. 

Have you incorporated Enhancing Life Studies into your pedagogy thus far?  

I've already done one Enhancing Life Studies course for our post-doctoral fellows at the McLean Center when I began the project at the University of Chicago. Many of the topics that I'm dealing with in my research formed a sort of “mini-course” during their summer intensive: they had sessions about assisted suicide, about withholding and withdrawing life-sustaining treatments, about decisions regarding life-sustaining treatments for persons who are unable to speak for themselves, and about questions regarding the treatment of symptoms and something called the "rule of double effect." The students were mostly physicians, along with a few philosophers, theologians, lawyers, and social workers–and even a chaplain. This course helped them understand better the theoretical framework for approaching issues in care at the end of life, but it had more of a clinical spin to it. I've now moved to Georgetown University, and this fall I'm going to be teaching a graduate seminar in the philosophy department, in more depth. 

What are some assumptions that people tended to bring into your more "clinical" course, and what are some things that they found surprising about the approach of the course, or some ways that the framework that they were using to assess these issues may have shifted a little? 

I think one concrete example of how that happens is that a lot of people, even clinicians, think that it's natural for people to be depressed as they're dying—and it is not natural. If they are depressed, they have a psychiatric syndrome that can be treated just as it can be treated in someone who is not dying. It's important to recognize that dying people are still living, they are human beings, they are patients like the rest of our patients in medicine—they're not a different kind of thing. All the rules that apply in medicine don't suddenly go out the window because a patient is dying. 

How do you anticipate bringing in some of the insights from teaching medical practitioners into your upcoming philosophy seminar, and what are some of the ways that those courses might be both similar and different? 

It will be the opposite of the problem that I had with the clinicians—the students will be largely young graduate students in philosophy who have probably had very few experiences ever seeing anybody who's terminally ill. They might be young enough not to even have had grandparents die, let alone parents, and have almost certainly never been in a position of actually delivering care to them. It's going to be very important that their theorizing be grounded in reality. I'm also opening this course to medical students—I don't know if I'm going to be able to get any medical students to take the course, but if a few come, they can help me. Otherwise, it's going to rely on me to remind the students: "That's not how people behave. That's not how they think. Where did that come from? Why are you saying that?" and to make sure that they realize that their theorizing has weight, because it affects how people live while they're dying. We've got to make sure it's grounded in reality. 

What might be some of the materials you might use to "bridge the gap" between theory and practice? 

Most of it is going to be anecdote—which is often shunned these days, particularly in medicine. People talk about it as a “poor source of evidence.” But in fact, people live within a narrative—the narrative arc of their lives, constituted by concrete stories of actual experiences of how they actually learned about the world and about other people. So in order to ground the course in reality, I'm going to supply anecdotes that come out of my own clinical experience in caring for patients at the end of life. This is not a new method—if you read Aristotle's Nicomachean Ethics, one of the most common examples Aristotle uses for how to do practical reasoning is medicine.  

How does The Enhancing Life Project serve to broaden the scope of discourses—particularly religious discourses--that become relevant to medical science? 

My own view is that human beings are, in many ways, intrinsically spiritual creatures—at least in the broad sense of encountering transcendent questions about meaning, value, and relationship. Even an atheist has to at least confront those questions—even if they decide that there are no transcendent answers, they still have to confront them. Questions of meaning—like "Why MY child?", questions of value—"Why do I have this defect? Doesn't anybody care about me?", and questions of relationship—when people are facing serious illness they often search for forgiveness or reconciliation. These questions are timeless, they're human, and everyone has to confront them. 

A lot of discourse, particularly surrounding scientific advancement, tends to point to the fact that we feel like we're "moving past" those transcendental questions you mentioned, based on the advancements we've made in technology. How does your research respond to that assumption? 

It's a sort of foolish way to think about it. One way of phrasing it is: even if we do engineer stem cells well enough that people can live longer and longer lives, indefinite ongoingness is not the same as eternity. More of the same—to just be here forever—is not enough for any human being. Even in science, there are mysteries. Good scientists appreciate them, but often can't write about them within the structures of their own disciplines. One such mystery is: What's the axis about which the double helix of DNA is wound? I think the mystery of the person is at the center, and persons are not reducible to nucleic acid sequences.