On Death, Dying, and Writing: In Conversation With John Troyer

While Freud posited that it is impossible for us to imagine our own death, John Troyer believes we should at least try. Not only should we attempt to imagine our own death but we should propose and share how we might like it to happen.

For this episode of the MIT Press podcast, I spoke with Troyer, who directs the Centre for Death and Society at the University of Bath, about his new book, which charts the relationship of the dead body with technology through history, from 19th-century embalming machines to the death-prevention technologies of today. We also discussed the growing field of death studies, how our relationship to technology is redefining existing categories of life and death, and the profound effect of Troyer’s personal experiences on his own writing and research. A stream and lightly edited transcript of the podcast can be found below.

Sam Kelly: Hi John. Thanks for speaking to me today.

John Troyer: Of course. Thank you for inviting me.

SK: You’re the Director of The Centre for Death and Society at The University of Bath. You’re the son of a funeral director and you’re the author of this new book, “Technologies of the Human Corpse.” Before we talk about your book specifically, I wanted to ask you about death studies. It’s an area that MIT Press is publishing in more frequently and it seems to be growing in popularity. Could you tell me your thoughts on this?

JT: Absolutely. Death studies as a recognized field or a discipline has been around for over 20 years now, largely in the U.K. as an interdisciplinary field involving arts and humanities, as well as social and human sciences. Simultaneously, there’s been another kind of death study in the United States, which has focused mainly on death education. Specifically, with an emphasis on psychology. Nonetheless, there’ve been overlapping fields since the 1970s. As for the popularity now, there’ve been people who’ve been working on the topics of death, dying and the dead body in this way since the 1990s in academia. If I’m honest with you about it, I think that it’s always been a field of study for people in academia. What we have lacked is departments or research centers.

The Centre for Death and Society, was founded in 2005 and was launched at The International Conference on Death, Dying and Disposal, which is a semi-annual conference that took place at The University of Bath that year. Prior to this there wasn’t really a research center of its kind, certainly in the U.K., that undertakes interdisciplinary study centered around these topics.

However, there’s been a constant flow of individuals working in the field. The popularity or the visibility of the field comes and goes. Human death is a constant. As humans, we keep dying. We’re pretty good at it. And it’s because of this that it’s a constant topic. Death will always be there. Dead bodies will always be there.

What you see happening is editors and journalists who suddenly decide, “Oh, this is an interesting topic. No one’s written about it,” but actually, it has been written about more often than not. In my own personal experience as director of The Center for Death and Society, I’ve been interviewed multiple times by different reporters from the same newspapers who don’t realize that their own newspaper has published the same exact story they’re writing, a couple of years previously.

Now that’s not to say it’s unimportant. However, what I would say is that there is a popularity or again, a visibility, that comes and goes. But that the beauty of death studies as a field, it’s always there.

SK: Death also forms foundational topics in many other disciplines and areas too doesn’t it? Its central to psychoanalysis, sociology, law, biological science, and others. Are there areas you’ve been surprised to find yourself working in?

JT: The Center for Death and Society is in the Department of Social and Policy Science, which is a social science department. I’m not a social scientist. My post is technically in sociology but I was very clear when I was hired that I was not a sociologist. My background is arts & humanities, critical theory, science & technology studies, bio-ethics, a whole number of things. But not sociology.

We have a new group of colleagues at the center who are criminologists. They are interested in looking at deaths in prisons as criminologists. We’re now working with them on a very pressing topic related to end of life care for the elderly prison population. This is just one example of a multitude of directions you can go with death studies.

SK: The writing in your book varies between different forms of writing. You chose to include poems and memoirist elements in “Technologies of the Human Corpse” and that decision fundamentally changes what kind of book it is. You could tell me how you think it changes the book?

JT: Sure. “Technologies of the Human Corpse” is a book that has taken on many forms and many iterations before it finally got between the covers at MIT Press, as it were. Parts of the book started 20 years ago. Other parts of the books started less than two years ago.

Twenty years ago, I was working on the connections between the dead body and technology; specifically, how living humans use technologies to create different kinds of realities or appearances for dead bodies. Things like embalming or photography. Asking what those 19th-century relationships are? I actually began some of this stuff when I was in grad school, I wasn’t interested in anything that could be described as technological determinism because I think that’s tricky. You don’t ever want to blame the technology or say ‘the technology is doing this’ because it’s not. It’s the humans using it.

But along the way this book had one university publisher, which will remain nameless, totally flake on me in what I regard as a very unprofessional manner. Then Matt Browne, my editor at MIT Press, contacting me and MIT Press rescued me from wilderness with this book.

Whilst this was all happening my younger sister Julie was diagnosed with brain cancer at age 42. Glioblastoma multiforme cancer on the right side of her brain. She lived in Italy and had lived in Italy for many years as a school teacher, and as I was ‘working’ on this book she suddenly (and I should perhaps put working in scare quotes because I wasn’t working on it like I should have been) got ill and put into focus end of life questions, death and dying questions that were part of my own biography. As you said, my father was a funeral director and I had grown up around death and dying but not in this way.

As we begin to get closer to the book being done Matt (here Matt Brown deserves enormous credit as my editor) told me, “You know, John, I think it’s a good time for your book to come out. I think the time is right,” he also said, “You know, you have to write about your personal experiences with this book somehow,” which I had resisted because I don’t think of myself as a memoir person. Matt said, “You need some autobiography in this because you are a big selling point for this book.” So, I agreed.

My sister was diagnosed with brain cancer and suddenly I said, “I need to write about my sister dying.” I wanted to include a series of poems called “Watching my Sister Die” (which didn’t start out as a series, but it became a series that continues today.) Me and Matt agreed to intersperse those between the chapters. Again, it is to MIT Press’s eternal credit and flexibility in doing something that is irregular for this type of book.

The decision to include that material profoundly changed the book and I agree it’s a different book now. The preface begins with the line, “I needed to finish this book before my entire family died,” and the coda is about planning for death, planning for funerals. Which is something my sister and I had talked about in July of 2018 when it was clear she was dying. In fact, it was clear she was dying in April of 2018 when we were all in Italy for her birthday and it was clear that would be her last. It was her 43rd birthday, and then in July of 2018, that would have been July 13th that’s when I told her she was dying.

I think it was the experience of telling my sister she was dying (in part because it just wasn’t being talked about by her medical team) that made me realize I needed to write about it in that way. She died on the 29th of July, 2018. Incorporating all that material into the book became very important to me. I think it became important because I began to reflect upon whether or not those of us in the field of death studies engage with our own experiences in the ways we tell other people to do.

That becomes one of the great paradoxes of people who work in end of life care or death and dying. Are we as good with ourselves as we often tell people to do it themselves?

There’s a postscript to the preface that I added in December, that involved my own father who had a massive cardiac arrest at the Minneapolis Saint Paul International Airport. He and my mom had just returned from a cruise in The Bahamas and were in the airport. He had a massive cardiac arrest and died. Thankfully he was resuscitated in the hospital and then spent the next two weeks in ICU, then another week in another part of the hospital, and then another month in rehab.

He’s back home now, so the story ends out pretty good. In fact, I’m in Wisconsin right now with my parents visiting them to check on them for some medical appointments and he’s okay. He made it, but we didn’t know if that was going to be the case. Of course, when I write the postscript, it looked like he wasn’t going to make it.

The reason I mention this is because we had prepared for this scenario by creating advance directives for both my parents. They declared that I had power of attorney for healthcare decisions in writing and my mom and I were both confronted with a situation, in which my Dad kept hitting all the gray areas in all of his advanced directives.

Meaning he said, “If this happens, then this should happen,” but he kept defying all the possibilities, which was good, but it meant we weren’t entirely sure where to go with what decisions to make. Ultimately, we made all the right decisions. We did all the right things. We prepared in all the best ways we could, but even then, it was not as clear-cut as you might imagine it could be.

SK: That actually leads onto the next thing I wanted to ask. There are instances in the book where you explore the way technology complicates categories surrounding what some people might think of as the most binary of opposition, life and death. How does technology challenge those categories?

JT: I’ve been reflecting on this, particularly in my dad’s case more than you can even imagine. In his advanced directives, he has this sentence “I direct that I’d be permitted to die naturally. Any use of life-sustaining procedures shall be short term,” in parentheses, “One week or less.” That’s the quote.

This begs the question, what is a life-sustaining procedure? What is a life-sustaining technology? This is both an abstract theoretical question, one that I would absolutely throw at my undergraduate final year students. But in my dad’s case, it became very real because we had to make a decision. We had to decide, for example, does he get a feeding tube, which would be put into his stomach and because if he didn’t get the feeding tube, he would die due to a lack of nutrition.

However, is that a life-sustaining procedure that could begin as short-term but become long-term, if so, have we then just violated what his pre-existing wishes are? In his advanced directive, it stipulates that “I would prefer not to have something like a feeding tube, especially if I’m in a persistent vegetative state.”

He also stipulates that if it’s deemed to be medically necessary by medical staff, that’s something like a feeding tube could be used. Then there is a surreal moment in which my Mom and I are in my Dad’s hospital room, he’s out of the ICU now, he’s in a regular hospital room under observation for neurological damage. We’re talking with the weekend medical doctor at my Dad’s bedside and we’re going through the advanced directive, talking about the feeding tube. I said, “My Dad’s got this thing about if it’s medically necessary,” and we’re talking to her, and all of a sudden, my dad out of nowhere speaks and says “Yes, it’s medically necessary.” He was following what we were talking about so we say, “Okay then” and put a feeding tube in.

That is a life-sustaining procedure, and we had to do that because if we didn’t do it, he would surely die. He’s since had the feeding tube apparatus removed. That happened two weeks ago. It was short-term. He was actually then able to get onto regular food very quickly. But had we not done that, he would’ve died and he wouldn’t have recovered the way he has.

The reason I’m bringing all this up is because in my own imagining, before this entire situation had happened, I would have said no feeding tube in part because we tend to imagine these scenarios in which things are very almost clear-cut.

I’ve spoken with my dad’s medical team about this because he had a ton of doctors working on him, but particularly his cardiologist and the cardiologist’s physician’s assistants. I said I had a blind spot; I had always assumed the scenarios I would be presented with would be very clear cut. That is a situation I know doesn’t happen and I know professionally doesn’t happen. However, I always assumed it would be that in my own case. This has opened up my own lack of flexibility in an area I’m always talking about we need to be flexible in. That has been a really interesting experience. It’s not one I would have anticipated.

When we talk about these technologies around life, end of life care, life and death, dying, life-sustaining, life support, it becomes a series of contingencies and scenarios that in many ways the world of evidence-based medicine can only give us clues to. However, a lot of it just comes down to, what do you want to do? And that became, a period of conflicting information for me because I was always looking for what the readings say? What you know, what does his EEG say? What kind of brain activity do we have? All those things. They all supported that things were moving in a productive, positive direction.

SK: Examples like the ones you just mentioned are perfectly illustrative of why it makes sense to write a book in this way. Removing them completely removes a whole dimension of what’s valuable about the field.

JT: I agree. I mean I’ve already joked with Matt and I’ve said, “If we get to a second edition or a paperback, I already know what the first line of the epilogue is, which is my dad didn’t die,”

At the same time this is all happening there’s another element of this, which is that my Mom has very early-stage colon cancer. She’s having surgery in a few weeks to have that removed. That is in early April. Again, this is something to negotiate with our parents as they age. I’m also aware that I’m the lone child now and the person who’s been tasked with making these decisions.

In my mom’s case it makes complete sense. It’s very early stage. If it’s not removed, it would actually become a huge problem, but it’s not now. That’s absolutely reason to do it, so the cancer doesn’t escalate to the point where she would need something like chemo or radiation, which I know she would not want to do and I would support that as well.

As much as I know as a bioethicist, a science technologies academic and a death studies academic, that there are all these questions about what is life-sustaining? What is not life-sustaining? What is life support technology? I will tell you; I had not really confronted those questions properly until this all happened.

SK: A text that you talk about in your book as having a huge influence on you is Lyn Loughlin’s book, “The Craft of Dying.” The MIT Press republished this title in April of last year, featuring a new introduction from you that features in “Technology of the Human Corpse.” Could you just talk a little bit about the influence that book has had on your research and writing?

JT: Lyn Loughlin’s “The Craft of Dying,” which was first published in 1978, is one of the foundational texts for contemporary and modern death studies. It’s also one of the least read and most overlooked texts for modern death studies. There will be a small group of individuals and colleagues who have been in death studies longer than myself who will be familiar with it, but it’s a book that was not being read by a new generation of death studies academics until MIT Press republished.

It’s so foundational because what some might describe as the death moment, for lack of a better term, traces a lot of its roots to a shift that took place in the 1970s. Key shifts in things such as life support technology have a huge influence on what we, in the West considered as dying? What is living? What are all those questions?

There are shifts in a number of areas; in biomedicine, biomedical sciences, life support. Suddenly, there’s this idea that you could extend life beyond limits that had been in existence previously. This sets in motion an enormous field of study around human mortality. In the US context, this is also partly a reaction to the Vietnam War. In fact, one of the books that’s often heralded from the early seventies is Ernest Becker’s “The Denial of Death.” Unfortunately, this becomes the canonical texts from the 70s, which is okay but I think Becker is wrong and a lot of things, which is heresy depending on who you talk to within death studies. What Becker writes in ’73 is a very good critique of the Vietnam War and it makes complete sense in that context.

However, Lyn Loughlin was a young sociologist at University of California Davis. She is interested in what’s coalescing in the 1970s around death studies. And, sociologist that she is, she decides to survey it. What makes her book so essential is she’s in the middle of this moment documenting the 1970s in the 1970s. In doing so, she creates a book that acts as a critical engagement with a number of death movements at the time, including the death acceptance movement, the natural death movement, the death with dignity movements.

What she says is that death has now become a social movement that’s very much in line with the other social movements of the time, the 70s that would be second-wave feminism, the early environmental movement, queer and racial politics. It’s creating a whole new framework of what death and dying can become.

In the late sixties what we finally begin to see is the emerging proliferation, although slowly, of spaces called hospices. Hospices were a radical notion in their time, a space where people enter and they know they’re going to die, that there’s no other way to describe what’s going to happen. That was a radical proposition.

But what Lyn says is, and I think this is the thing that all of us who work in death and dying today need to keep in mind, and this was where Lyn Loughlin’s book became the most valuable part for me. She’ll describe that there’ll always be a thanatological chic (thanatology a way of saying the study of death, taken from the Greek word Thanatos for death.) And that thanatological chic is something that gets picked up by what she would describe as the upper middle classes as a topic of interest.

I think her book has only gotten better with time. I don’t think she got anything wrong. My grad students, who are working in the field are reading this book and they’re amazed at what she has picked up on in the 70s. If you squint just right, you would say she had written that book last week because what she tapped into was just a profound series of social movements, politics and ideologies that continue today.

SK: Was there an overlap between what she wrote about and radical psychiatry moment?

JT: Sure, absolutely. I also want to suggest that I think the 1970s, more broadly are having a big moment.

And this is something again, that Matt Brown and I have talked about. Something that comes out of the late sixties and early seventies around death and dying, but also psychiatry is an exploration of hallucinogenic drugs. The psilocybin mushroom was being tested as a way to help people in grief and bereavement. That’s in the late sixties, right?

Then it never goes anywhere because these drugs then are all outlawed, banned and we entered into the war on drugs. We’ve now fully returned to this line of inquiry; there are drugs that could possibly be used to help people who are experiencing severe grief and bereavement that may not be as detrimental as some of the drugs that are used now. But that the research just stopped in the 70s, you can go back and read big articles in the New York Times in the 1970s where they are writing about these possibilities. This was front page, national newspaper coverage and I think that when we talk about any radical rethink of psychiatry, a radical rethink of psychology – a lot of that is happening in the social ferment of the 1970s and death and dying are 100 percent part of that. Absolutely a part of that.

I think that there’s a legacy of tension between death studies and then psychology and psychiatry in part because there have been differences in arguments around Freudian or Neo-Freudian takes on death and dying. Also, there’s a series of disagreements within the literature and medicine around death and dying, but then also too in psychology and what death and dying means a psychological model. I think that those debates all start in the 1970s and continue today.

SK: Before we finish, is there anything you would like the reader to come away from your book with?

JT: I would encourage everyone, if an author can ever say this, to read my book of course but I would also encourage anyone who wants to read my book to read Lyn Loughlin’s book.

I would like to add that at the end of my book, in the coda where I talk more again about my sister dying, there’s a whole section on how to think through the questions you need to ask yourself and your family members about end of life care. There’s a set of questions about funeral planning and final disposition of human remains planning and I would encourage everyone to think through those questions and ideally write down their answers. Once you write them down, make sure your next of kin knows where those answers are.

Everyone should go through those questions and make sure the people who will have to make the decisions know what your feelings are.

It’s important to add that you can change your mind. I talk about this my sociology of death students, and I’m like, ” I know when you’re 20 and you’re thinking about, geez, do I want any kind of life support or resuscitation when I’m like 50 or 60?” At 20 you think, “God, no, that sounds terrible.” But as you approach 40 or 50 you begin to think, “Well, that maybe doesn’t sound so bad. Maybe a little bit of resuscitation. Maybe a little bit of life support? let’s see.”

Your attitudes can change. Your ideas can change. I think that as it stands, we are only going to enter into a period of increased spectrum of death and dying. There’s going to be the need for even more flexibility and a greater understanding on the part of family members. There will be more questions of what is acceptable to the individual as well as the family member’s? And that’s a question that really starts in the 1970s. It continues today and I think those questions have become only more challenging and profound.

SK: Thank you for talking with me John, and for writing a profoundly moving and fascinating book.

Sam Kelly is the host of the MIT Press podcast and a member of the Press’s publicity and marketing team.

John Troyer is Director of the Centre for Death and Society and Associate Professor in the Department of Social and Policy Sciences at the University of Bath. He is the author of “Technologies of the Human Corpse.” He grew up in the American funeral industry.