Interview with Jesse Soodalter, M.D.

On Tuesday 11 November 2014, I attended a workshop entitled “Never Say Die: Euphemism & the Language of Death” that was held in Stuart Hall. The workshop consisted of several panelists who spoke on the role of euphemism in talking about death, bringing to bear on the matter their respective areas of expertise. The speakers included UChicago linguistic anthropologist and Professor of Anthropology Michael Silverstein; Monica Malec, M.D., the Clinical Director of Palliative Medicine at the UChicago Medical Center; Malynne Sternstein, an Associate Professor in the UChicago Slavic Studies Department; and Peter Cook, an Associate Professor in the Columbia College Chicago ASL-English Interpretation Department. This workshop was the first in a series known collectively as the Living Mortal project, about which one can find further information at the following link: http://neubauercollegium.uchicago.edu/faculty/living_mortal/.

The Living Mortal project, sponsored by the Neubauer Collegium for Culture and Society, is the brainchild of Jesse Soodalter, M.D., a Fellow in the Section of Hematology/Oncology at the UChicago Department of Medicine. After the workshop was over, I asked Dr. Soodalter for an interview. She agreed, and I have transcribed my interview with her below.


MH: So I wanted to ask you, what does you professional work as a doctor entail? You’re a Fellow in the Hematology and Oncology Department.

JS: Yeah, so hematology is blood medicine, both blood cancers and so-called “benign” blood cell diseases like sickle cell disease and various kinds of anemias, and oncology, of course, is cancer. So, mostly I focus right now on treating multiple myeloma, which is a kind of blood cancer. But I’m actually going to be shifting focus a little bit, and I do some work on sickle cell disease; and I’m shifting more towards that.

MH: And how has your work as a doctor shaped your interest in death, or vice-versa?

JS: Very significantly. You know, the kind of genesis of this project [the Living Mortal project] for me was really during my first year of fellowship, which was the first time…you know, I had been a resident previously, training in general internal medicine. I was interested in oncology and hematology, but I would see patients with all different kinds of diseases. And then during the first year of fellowship was really the first time that I was seeing all patients with cancer all the time. So every time you went in an exam room, there was someone with cancer. And the kind of emotional load of that and the kind of burden of bad emotion and suffering and kind of connecting to people in this very kind of dark, difficult time in their lives was very overwhelming; and so in the beginning part of my first year of fellowship, I was really struggling, thinking: “Did I, you know, have I made the wrong decision? Can I live with this amount of death and suffering and bad emotion in my life?” And simultaneously, all through my medical training, once I got into the clinical setting, I had found that the times when I did connect with patients and their families around death and the end of life and was able to help them sort of find their way to what could be counted as sort of a “good” death, quote unquote, were far and away the most satisfying experiences that I have had in medicine. You know, you really felt like you were kind of touching people’s lives in a really watershed moment and helping to make a really horrific—potentially horrific—thing as, kind of, maybe as little horrific as possible, if not actively good.

MH: Right and, actually, you mentioned [at the workshop] the various recent death-related movements: the Death Café movement, “Let’s Have Death and Talk about Dinner;” and I was actually reading about—

JS: [Laughs]

MH: Let’s have death and talk about dinner…[laughs] “Let’s Have Dinner and Talk about Death,” excuse me; and they were mentioning how it was…it started with these people who met on a train—

JS: Right, I read that website too.

MH: and one of them mentioned how 75% of Americans want to die at home but only 25% do; and I was wondering, you know, I wanted to ask you: what do you think are the most important discussions that we should be having about death but are not having?

JS: So, that’s a great question. You know, I think that probably, there are a few different answers to that question; a lot of which are kind of life-stage dependent. So, you know, for people who are struggling with a serious illness, for people who have cancer, or even for people who are just being adults and getting older, both thinking and talking about what kind of end-of-life they would like to have—we would like to have—is the most important thing. You know, thinking about, if I were to have a serious illness that couldn’t be cured, how aggressively would I want to be treated? Do I want my life to be extended at all costs and potentially at the cost of significant discomfort, symptoms, suffering etc.? You know, thinking about things like chemotherapy. If a catastrophic event happened, and I was suddenly unable to communicate—if I had a heart attack, if I had a giant blood clot—would I want to be resuscitated, put on a breathing machine, kept alive in an intensive care unit? Which, in our healthcare system, is what happens by default if you don’t say that’s not what you want. So if a random person drops dead, essentially, on the street or in the hospital, or wherever, the default thing that happens is that we rush in and do a lot of very, very aggressive resuscitation measures: we pound on chests, crack ribs, put tubes down throats, put people on lots of medications. And I think that people have an image of that especially from the movies and TV. My favorite was the scene in Casino Royale where Bond has a heart attack and defibrillates himself.

MH: Oh yeah, I remember that.

JS: And then he sort of runs out of the car and jumps into the fray.

MH: I think he was poisoned by some type of flower or something.

JS: I don’t even remember; all I remember is he put the pads on and essentially shocked himself.

MH: I forget the name of it now.

JS: In any case, our picture of how a code situation—that’s a code blue—goes and how somebody comes out of it, and is smiling and sitting up in bed and thanking everybody who saved them, it is quite sort of different from the reality. And I think that people—even while over the last, say, 150 years; the technological capacity of medicine to extend life and to prevent various deaths has increased exponentially, I think that people even still have an unrealistic expectation of what technological medicine can do for them. And the reality is, unless you’re someone young and healthy who has some kind of freak, bad heart rhythm that causes them to have sudden cardiac death; if you go into a code situation like that, you’re not coming out of it in good shape. You know, you’re probably not coming out of it cognitively where you were; you’re coming out of it probably with broken ribs, etc. And I think that people should understand, kind of, what these aggressive measures mean, so that they’re able to make informed decisions about whether that is something they would want should the time come.

MH: And I feel as though—especially because you were mentioning how we have this notion of people sitting propped up and smiling and happy—

JS: with the nasal flow of oxygen and, like, a surgical cap on!—

MH: Yeah, and it’s important to remember that technology can’t necessarily add to or restore the human element of life or the joy of life; not everything can be so broken down to material processes; and that is what I feel is so important to think not necessarily, just can you live, but what kind of life do you want to live? And understanding that technology has its limitations in providing that.

JS: Absolutely. And, you know, I think we live in a culture—particularly in contemporary America—where we totally lack an idea of the concept of “enough.” There’s no such thing in American culture as enough wireless minutes, let alone “life minutes.”

MH: [Laughs]

JS: And so all the rhetoric around us is about more life and very little is about what kind of life and how well do you live. We have, for instance, a lot of ways to treat cancer. If someone is diagnosed with cancer, we can often have four, five, six lines of chemotherapy to give them before they even, sort of, start to venture into clinical trials. But what cost the potential to—not financial cost, but cost in terms of human suffering and symptom burden that an individual is likely to pay in exchange for the possibility of getting more days or weeks of life—is something we don’t talk about nearly enough.

MH: So, I wanted to ask: What do you think should be—is—“enough”, in your opinion?

JS: [Laughs] 76 years, 6 months, 5 weeks, and 4 days.

MH: Is that the average…?

JS: No, no; I just made that number up, and it was not real.

MH: I understood that, yeah.

JS: Sorry, did you finish your question?

MH: I just wanted to get an idea of what your personal views on resuscitation were, like what you would want for yourself and your relatives if they were in that situation?

JS: It’s a great question, and it’s one that I think I would answer differently at different stages of my own life. I’m relatively young; I’m middle-aged and fairly healthy. And I think that if something catastrophic were to happen to me, and I were to be coded, I could reasonably expect to come back from that well. So right now, I’d say: “Yes, by all means, code me. You know, bring me back!” And very often, I think, from a perspective of being someone who is abled, we, sort of, look at the prospect of being disabled in some way, and we have an instinct to think: “Without these abilities that I have, the ability to walk, the ability to shower myself and feed myself, etc.; life wouldn’t be worth living.” And I think those are assumptions that we need to question, because it’s certainly been my clinical experience that as people kind of move from being healthy through stages of being less healthy and less able, they still really want to be alive. [Laughs]

MH: [Laughs]

JS: You find that the life you didn’t think was worth living, when you’re actually living it, you still want. And so, it’s hard—I recognize that it’s hard: it’s hard for me; I think it would be hard for anyone—to sort of proleptically say, “This is the line for me.” I-I can say with absolute confidence that if I were unconscious and with no reasonable expectation of being brought back to a decent cognitive state—you know, if I were in a permanent vegetative state, if I were in a coma; and the experts taking care of me do not feel that I have a reasonable chance of coming back—I would not ask to be kept alive artificially like that.

MH: I also wanted to ask: What is the goal of the Living Mortal project, in your opinion? In your mind, what do you have as the goal of the Living Mortal project series of workshops? And other than the fact that the series is all about death, how is it a furthering or a realization of your interests in death and dying?

JS: So, my hope for the Living Mortal project is that it function as a genuine intervention, both clinically and culturally. I am maybe wildly over-ambitiously hoping to effect a shift in public and clinical conversation about death and our collective ability and belief in our own ability to talk and think about death in an effective way. And that has ramifications in the clinic, in that I really would like to find ways to help people have discussions with their doctors and nurses about their preferences for end-of-life care well in advance of the last days and weeks of their lives because—as you observed—most people would like to die at home and most people die in a hospital or a nursing home; so we’re clearly failing to communicate about that incredibly important point. So I would like to see us be able to communicate about that better and be able to measure improvement in those outcomes. And then culturally…my hope—and again probably grandiose—is that we might be able to start conversations about death in ways that encourage people to engage with the fact of their finitude instead of buying into this very sort of American capitalist myth of infinite choice, you know this sense that we’re given all day every day, that we have infinite choices available to us, you know 57 kinds of wireless plan—

MH: [Laughs]

JS: and that we’ll be able to keep on choosing indefinitely. I would like to see, to help give people space to recognize that, in fact, all of our choices are finite. You know, our every gesture is one of a finite number. And my bet is that—and the ethical component of this whole project in a sense—is that with that recognition, we might be able, in a sense, to weigh our individual choices as something more closely approximating their actual value in life. Does that make sense?

MH: It does, and one of the things that really struck me about the whole idea of end-of-life-care is that it’s sort of antithetical to being motivated and ruled by technology in that end-of-life care is really very personal and isn’t looking forward—because the person in question is going to die soon—but is about “What makes you most comfortable?” And so I really like the sort of humanitarian aspect of it, as opposed to perhaps the more scientific—you could say—aspect of medicine. And I really appreciate that. And so, the first workshop was about the language of death and euphemism—how people euphemize death in different cultures, different settings—and I was wondering, how did you find the speakers for that workshop; and how do you plan on finding speakers for future workshops? Also, what can we expect as the themes of the future workshops?

JS: Sure. And if you’ll just let me jump back one second to your previous comment, I want to stress that I’m definitely not anti-technology. I don’t have any investment in the actual content of the choices people make about their end of life. So, if you—in the consciousness of your mortality and finitude—decide that come the bad day, you want to go down on a ventilator in an ICU with all the machines beeping and the full court press, more power to you. I have absolutely…I am not…you know, this is not death panels.—

MH: [Laughs]

JS: [Laughs] This is not “nobody should be resuscitated,” by any means. I think however anyone decides that they want their end of life to be, as long as they make that decision and it’s not made for them by default, I am happy with that. So I just wanted to clarify that, so that it didn’t sound like I was saying that everyone should have a Do Not Resuscitate order tattooed on their chest. So in terms of the workshops, I have been kind of collecting a stable of faculty collaborators for about a year, just a little over a year, now. What was then called the Arts|Science Initiative, run by Julie Marie Lemon, hosted what was called a “Pop-Up Lab” for us last year, where we invited a bunch of different faculty from different disciplines, and we had a dinner, and we just talked about death in general. And we had an art historian and some artists, a curator, some historians of medicine and American culture, a classicist…

MH: From the University of Chicago?

JS: Yeah, they were all U of C faculty. And we just sort of sat around for three hours and chatted about death, and everybody kind of trotted out their own disciplinary, like, stuff about death, and everyone took turns blowing each other’s minds with their own disciplinary expertise. And that was kind of the germ of the idea that we might really get somewhere talking and thinking about death if we did this very, kind of radical, maybe messy interdisciplinary mash-up of discourses. And so, some of my key collaborators come out of that original session, and then in the intervening time, I’ve just been sort of getting in touch with people sort of through each other, through talking to different faculty members, through Neubauer—who are the sponsors of the workshop series—and once you sort of work your way into the labyrinth of the faculty, connections start to multiply.

MH: I see.

JS: So for the first workshop, Monica Malec—the palliative care doctor—is one of my research mentors, and Malynne Sternstein has been one of the original collaborators on the project. And actually, the idea for the euphemism workshop was the two of theirs. And then I had met Peter Cook through…he was a visiting Neubauer Fellow last year, and he’s just such an amazing, dynamic, you know, warm human person—

MH: He’s very vivid, yeah.—

JS: that it was really important to me to get him involved; and the language and euphemism workshop seemed like the most interesting and potentially fruitful in terms of thinking about communication and different modes of language. And then, Michael Silverstein, I just thought that we needed a linguistic anthropologist if we were going to talk about euphemism. And so, like, I’m kind of embarrassed to admit that I had no idea what a rock star Michael Silverstein is. I just was looking at the Anthro page faculty listings, and his publication history was exactly what I was looking for; so I sent him an email and said, “Hey, would you be on this panel?” And then I found out later that he’s the god of linguistic anthropology, so that was kind of funny. [Laughs]

MH: [Laughs]

JS: And we were incredibly lucky to have him. I think he was phenomenal on the panel. The next workshop will be on January 22nd. It’s called the Imaginary Funeral: Image, Artifact, and the Work of Mourning. And it will be about that. It will be about the images and artifacts that we make of and for and from our dead, from death masks to trophy heads to Victorian hair art; and trying to think about what kinds of work those images do for us. Are they indexical? Are they images in the sense of faithfully representing the physical presence of who’s gone? Are they like affect reliquaries? Are they fetishes? Are they totems? So we’ll have, in some senses, a similar structure [to that of the first workshop]. There will be a group of panelists, who’ll each speak for just a few minutes in a way more like presenting evidence than making an argument—just sort of showing some images, making some observations—, and then really open it up for what I hope will be very, kind of egalitarian discussion. I really want to encourage these sessions to be not kind of Q & A between experts and audience but experiments among co-investigators. So, that one will be held at the Gray Center [for Arts and Inquiry] and Midway Studios. And I think that will be really, really interesting; so it will be a good time. Upcoming workshops thereafter I don’t have dates for yet, but there will be one about the debt to the dead and the ways in which we feel obligation and sort of spend toward that obligation at the cost often of considerable sacrifice among the living to acquit some perceived debt to the dead and what are the kinds of different modes of that. And that will have a wonderful economist, and we’ll have a terrific chaplain who is also an anti-racism outreach educator and activist. And I think that will actually be a really exciting, political panel. And then the last two will be in Spring Quarter, and there will be one on aesthetics and materials with regard to the dead, which should be a hands-on kind of workshop. And the final one will be about—and these later ones don’t have titles yet; they’re still kind of…sketchy—but the last one will be about death’s attractions and the ways that, instead of avoiding death, we kind of run towards it. So everything from Freudian death drive to the rise of torture porn and increasing body counts in mainstream cinema to religions and belief systems in which death is an absolutely natural part of the life cycle and not something to be horrified about at all. So that will really be the last one.

MH: I look forward to attending them.

JS: I think it’ll be fun.

MH: And my last question actually is—because this was one of the most salient points, for me, of the last workshop—there was this remark you made when you were introducing all the panelists about how death is, ultimately, a way in which all humans are the same, and I was wondering: Do you think that death should, perhaps, serve as a unifying trait for humankind? As something to bond over, the fact that we all have to die? Do you think that’s something that should make us closer, in a way? Or make us empathize with one another more?

JS: It would be lovely if it did, certainly. I mean, the amount of unseemly scrambling over resources that we do and the sort of climbing over each other’s backs to get at, you know, material gain is a little bit dwarfed by, you know…

MH: the finitude.

JS: Exactly. So, I would love if that were a way that people could find to treat each other more as we deserve.

 

 

 

 

 

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