Episteme: Knowing Your Patient

Listen to ASCO's Journal of Clinical Oncology Art of Oncology poem, "Episteme" by Dr. Michael Slade, who is a medical oncologist at Washington University School of Medicine. The poem is followed by an interview with Slade and host Dr. Lidia Schapira. Dr Slade highlights the tension between what is known and unknown and what spoken and unspoken as physicians try to care for our patients without destroying their ability to live with their disease.

TRANSCRIPT

Narrator: Episteme, by Michael J. Slade, MD, MSCI

I know you know, must know.

The tides have woken you

night after night after night,

borrowed blood flowing in

and now out, unaided

by your dwindling marrow.

You must know your story

is read and written

in a perfecta tense.

You must know the end

somewhere deep in

your empty bones.

Still, you speak of summers,

of fish caught or lost beneath

the calm surface of a distant lake.

"There's nothing to do

in December," you say,

skin pale in the cool light

leaking from the door.

It's late now, deep in the evening

and my knees ache as I nod

and wonder about a different world

where you were not you

and this was all decided months ago.

"Day by day," I mutter and shuffle

to my next door, leaving you alone

to wait on the cataclysm, on

that night when the blood

of strangers runs wild

and catches your breath,

that night in the ICU, where

they wait, tube in hand

as you sweat and shake, where

I still promise to care for

you knowing, knowing you

will never wake again.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Michael Slade, a Medical Oncologist at Washington University School of Medicine. In this episode, we will be discussing his Art of Oncology poem, "Episteme."

Our guest's disclosures will be linked in the transcript.

Mike, welcome to our podcast and thank you for joining us.

Dr. Michael Slade: Thank you, Lidia. It's great to be here.

Dr. Lidia Schapira: It's a pleasure to have you. Let's start by talking a little bit about your relationship to writing prose, poetry. Is this something that you've always done? Do you want to share with us a little bit about what it means to you and when you have time to write?

Dr. Michael Slade: I'd say, I have absolutely no formal training as a poet or honestly in anything else, but this is something I've done since college. And especially starting in medical school, this was really a deliberate practice for me to try to find a way to unload some of the harder experiences that we can go through as medical providers.

Dr. Lidia Schapira: It's interesting to hear you say that. Many of our authors have talked about using their writing as a way of processing emotionally difficult experiences and just very important meaningful experiences. But there's so much artistry in your work. I just wanted to ask you a little bit more about that. How do you find the relationship to not just the writing as a way of processing, but as art that you want to share and publish. I've seen that you've published poems, quite a few of them in the last year alone.

Dr. Michael Slade: Yeah, I would say the publishing piece of this came very far down the road for me, that I've been writing for over a decade before I think I even submitted anything for publication. And for me, the ability to publish is more of a- Is a way of putting yourself out there and as a motivation to really re-examine what you've written and not just scrawl it on a piece of paper and sort of stick it back on a shelf somewhere, but to be able to go back to some of these experiences and really delve a little bit deeper, both with the language, but also what was the experience? Why was this meaningful? And often things that end up in print for me are things that I've been playing with for a number of years. It is just sort of an ability to go deeper there is the reason why I have published some of these works.

Dr. Lidia Schapira: I am very interested in the theme of time and your use of pronouns. There's a lot of negotiating. What is yours and what is your patients'? I assume the "I" is the oncologist, right? In this particular case, since the readership of JCO are mostly clinical oncologists, it's sort of meant to be an affiliation with a reader. And there's a lot of "I," but then there's a lot of mine. Can you talk a little bit about how you have chosen to address the patient directly and your colleagues directly and put yourself out there using first person as well?

Dr. Michael Slade: I think certainly, as I wrote this, and I tend to write a lot as I come off of sort of tough stretches of clinical work, and as I wrote this, I think, I was trying to capture a little bit of the anguish that I think a lot of us feel as oncologists, especially around this question of what we know and what is knowledge for the oncologist. The reality is the things that we know sort of above the neck tend to be very statistical, that we say, "Oh, the chances of you responding," "The chances of you surviving," "The chances of you being cured," it's very numbers based, but it's probabilistic. And when we talk to patients and often when we talk to ourselves, we really use this idea of knowing in a very different way, that we know that something's going to happen because of our past experience or because of what we're seeing right in front of us. I think that's something that I think a lot of oncologists probably identify with very closely is that what do we do when we feel like we know something in a way that's almost deeper than the academic way that we speak of knowing.

Dr. Lidia Schapira: Let's talk about that. And that is, in fact, the title you chose for your poem. Why not just use the word knowledge? Tell us a little bit about that choice.

Dr. Michael Slade" When we talked about knowing, both academically and my background before I came to medicine, as I trained in philosophy, we talked about epistemology or episteme. Often, we talk about knowing both in medicine and in sort of the wider philosophical discussions, we talk about it in this very abstract way that if you were to sit down with a patient and really try to unpack it, they're not going to have any idea. This isn't relevant to practical life in a lot of ways. They want to know, "Am I going to be cured?" "Am I going to have this side effect?" "Am I going to make it out of the hospital?" And the type of knowing that we do within science is not that type of knowing. It's all probabilistic. And to me, I think, trying to pull back a little bit, and by using the sort of Greek root, it sort of places this idea of knowledge at a remove that I think is useful.

Dr. Lidia Schapira: Mike, I've often used the analogy that poetry is almost like abstract art sometimes, because it invites the reader to imagine things. So if we think of this poem sort of as art, can we walk through this together and take it from the top and see what we see or what these ideas trigger? You start directly by addressing the I know, you know, you must know. And then you present the case, if I got this right, of somebody with a dwindling marrow, that's an empty bone, so an inefficient marrow. And I assume, since you're a bone marrow transplanter, that means this patient had a disease that was incurable here, and you sort of insist that you must know. Tell me a little bit about that tension, that emotional tension that comes up for me as I read that, those opening lines where you're sort of insisting that you must know something that you're not sharing with me that you know.

Dr. Michael Slade: I think for me, that's really trying to express the gap that can emerge between those of us who do this professionally and our patients who have to live through these experiences. And we can say, "I have seen this story play out so many times, and I know things are not going well. I know how this is going to end." But for the patient, this is, obviously, every patient is an n-of-1 with their own experience, and they may have had family members with similar diseases, they may have had friends. They may join these really wonderful patient support groups where people can sort of talk about what the process of cancer treatment is. But for the patient, they are living through it day to day. And we may feel with our accumulated knowledge that it's very clear how things are going and that either their optimism or pessimism or sort of whatever the patient's base emotional reaction is to the clinical situation is fundamentally incorrect. It's like you have to put these pieces together in the way that I do. And the reality is that there is a huge gap that can emerge between us and our patients, and it can lead to frustration and anguish and a lot of negative emotions, I think, from clinicians that aren't aimed at the patient, but they're really aimed at the fact that we feel like we're not talking about the same situation. I think that's what that first piece of the poem is really trying to capture, is that anguish at that type of gap.

Dr. Lidia Schapira: And you say it very clearly. You say, "You must know your story is read and written in the perfect tense." It's almost like you're shouting it here, right?

Dr. Michael Slade: But in sort of a weird, obscure way that if you tried to tell a patient sort of a grammatical metaphor for how poorly their hospitalization was going. Most patients, unless they're English literature professors, will look at you as sort of with this, "What are you talking about?" I think, again, it's that gap. It's this very academic, removed way that we often look at this, especially when we're trying to shield ourselves from this very human anguish of knowing that there's this real person in front of you who's not doing well and that you feel like you kind of know how the story is going to end.

Dr. Lidia Schapira: Let's go a little deeper into that then. It's really about your feelings then here. It's your frustration. You want the patient to mirror back to you that they get how bad this is, and they can't because they are trapped in that body, in that situation. And as you just say, and then you say in the lines that follow, "they are coming up for air." They're thinking of the summer and the fish that may be caught or not caught. They may know it somewhere, but they can't quite recite that back to you. And that leads the writer, the author, to voice this inner tension. Did I get that right?

Dr. Michael Slade: I think that's exactly it. And sort of towards the end of that verse, there's also sort of this counterfactual that certainly different choices can always be made in the course of treatment. And especially for us clinicians when we're encountering a patient who interprets their disease a little bit differently than we do, and they say, "Oh, I feel fine. Why do I need chemo after surgery?" Or, "Oh, I feel fine. Why do I need a bone marrow transplant?" And sometimes people will make choices which makes their immediate life better, but we are always stuck in this sort of feeling of, "Oh, man. If only we had done things a little bit differently." I acknowledge that we just can't align our views of the world, but still at the same time saying, "Well, I don't know, things would have been better if you'd listened to me. Maybe you made the right choice for you and your disease process." So it's always that gap between what we know academically and what we sort of know below the neck. And then for patients, their experience is often very different from ours because they have to live through this.

Dr. Lidia Schapira: I'm interested in the physician narrator experience here, and I was really impressed by the fact that you convey the tension on the emotional load. But the only thing that you write and communicate directly to the reader is the physical aching, when you say, "it's the evening and my knees ache," and then you say "I shuffle," suggesting that you're physically tired. I just wonder if you could talk a little bit more about that, the way that you have inserted the fatigue factor of the narrator here, but through the description of physical symptoms.

Dr. Michael Slade: I think there's a little bit of blending there, because I think on the one hand, certainly this emotional anguish, mental anguish can certainly manifest as fatigue, and sometimes can be sort of a little bit of a metaphorical blend there. But I think the other thing that we often really struggle with as physicians and as other providers is how much are we letting ourselves get into the story that the patient is experiencing, but even the story that we're trying to objectively put together. And because, for example, we had a patient who tried a treatment and they had a rare side effect, a lot of us will admit, "Hey, I had a patient with a bad outcome when they got X,Y,Z." Even if the data looks really good because of my own emotional processing or I do my best. And I know a lot of other physicians talk about this, but if you are tired, hungry, under or over caffeinated, having bad things going at home a lot of times for us, we worry about letting our personal lives bleed into our interactions with patients. And that's really challenging because I think we are at our best when we bring our humanness into the clinic room, into the hospital room. We also have to make sure that we're not saying, "Oh, am I just down because I'm tired, and that's why I think this patient's going to do poorly?" Or is it actually supported by the evidence in front of us? So I think the way that the narrator kind of moves in and out of this piece and how much they are a part of the story is a big piece of the poem.

Dr. Lidia Schapira: It is a very big piece of the poem. And as I read some of the other poems you've written, I think that I was also impressed by this construction of the boundaries and the separateness between the patient and the physician narrator and how you negotiate that when you're waiting for a result, when you're waiting for time, when you say it's really the patient's story, but it's yours too. There's a fluidity about this perspective. Did I get that right?

Dr. Michael Slade: I think that's an absolutely wonderful way to describe it. I think fluidity in particular is, yeah, that we think of things as very separate from each other and that I'm me and you're you and there's your family and there's the rest of the team. But all of this stuff, not to get too sort of hippie with it, but there's so much resonance when you're in these relationships that you have with patients. And especially in cancer care, we have very deep, often very prolonged and somewhat intense relationships with patients and their families as they go through this stuff. Boundaries can become blurred. And again, I think it's challenging because sometimes we are at our best when we blur those boundaries a little bit. But there's certainly- you can be pulled into a patient's story in a way that is not helpful for you long term, but even not helpful for the patient short term. And I think that's the challenge. And you're right. I spend a lot of my work sort of thinking about this. And a lot of my professional life is also thinking about this.

Dr. Lidia Schapira: I would say it a little differently. And it's that you are co-constructing an 'us' that is between you and they, or you and he or she, or however you see this. And that's the mind part. Others have talked about cases where there is a deep connection between physician and patient, where the physician is invited to be a co-editor of that patient narrative. I think there's a lot of richness in that. And I think that your work and your poetry certainly takes us right there.

And so with that, I want to take us to the end of the poem, which is terrifying.There's going to be, you use the word 'cataclysmic', which means, this is an upheaval, something violent about to happen. And the way I interpret it is your patient is neutropenic and septic and shaking and rigoring and is getting transfused. And the "They," which isn't you or your team, it's the 'they' are waiting for it too and going into probably an intubation in the ICU. And then there's this promise that you won't abandon the patient while 'they' are going to be doing these things. And we already know how this story is going to end. Is that what you are trying to convey?

Dr. Michael Slade: It's funny because until you sort of read it out, I was like, I didn't realize how much I threw our ICU colleagues under the bus as part of this poem. So if any of you guys are listening, I have immense respect and value for what you do. But no, and this is sort of the big question that we run into with these patients and what's the right response when we feel like we can see the future and then we turn out to be correct. How do we not, I guess, insulate ourselves from that in a way that's not helpful for us and it's not helpful for the patient? And yeah, so that's sort of, as I said, you read the story sort of as it was laid down, but yeah. What do you do? What's the right response when you feel like you're getting to the end and that you feel like you've seen it coming for weeks? And I think that's really the challenge. And the poem sort of suggests an answer to that question. But I think everybody kind of has their own process that they have to go through. As you see, unfortunately, as an oncologist, case after case of folks that- cancer is tough and our treatments are getting better, but I'm a myeloma physician. I have cured zero patients so far. And that's hard at the end of the story. It's always hard.

Dr. Lidia Schapira: It is hard. Can you tell us a little bit about your choice of language and why you keep repeating the 'knowing' and then italicize it at the end, just to add another dimension of emphasis there?

Dr. Michael Slade: As someone who loves language and has always been interested in it from a philosophical perspective, but literary perspective as well, there's really, really sharp limitations to what language can express. And we can unpack and define and redefine and suggest. But there's something- often, we in these situations, run up into a place where words are totally insufficient. And I feel like often what we end up doing and what I end up doing in writing but I think even in our interactions with people, we just sort of use the same words over and over again, hoping that somehow the meaning will morph mid-interaction and suddenly we'll have that connection with someone where they'll hear what we're trying to say. And for me, I kept coming back to this idea of knowing, knowing, knowing. The narrator's trying to express something that they just can't quite get their arms around. And I think the best and the closest I can get to in similar situations is something like this, is trying to write out these experiences in a way that kind of captures that feeling. I hope I at least captured a piece of it.

Dr. Lidia Schapira: Certainly. I loved your writing and I think you did. Despite how difficult it is to talk about this and how difficult it must have been for you to live through it, there's a real gentleness about the way you take the reader through this. And it evolves. Really, it flows beautifully. So thank you for that.

Dr. Michael Slade: I very much appreciate the writing. And I will say to the folks who read the original version of this poem, both in my personal life and then at JCO, this is not the original form the poem was in. So I think other people have layered in their experiences here. And again, I love to see this come out on the other end and say, this is more beautiful than what I started with. So I have a lot of gratitude to folks who have given me some pointers about how to improve this.

Dr. Lidia Schapira: It's lovely to hear you say that. To end this, I would love to hear you tell me a little bit about comments, perhaps, that colleagues or even patients may have made based on work that you've published or what you hope that people will take away from this.

Dr. Michael Slade: I had published maybe one poem back in medical school, and then I published something as a fellow. And I remember in our program, we have this big office and we basically all have cubicles, and we have sort of the computers all set up, and we're in and out, you know, seeing consults and everything else. And I had published something in JCO a few years ago, that was about indirectly the experience of trying to be on call and triage patients and all this. I had maybe three or four different fellows within the week that that was published, sort of stick their head over and be like, "I never read poetry, but I saw your name on this. So I flipped to the back of the JCO magazine and read it." And that captured so many of the feelings that I've had this year in a way that I couldn't put on paper. Again, I've been writing stuff since college and most of it sits in a folder somewhere and it's never read by anybody. So the idea that it could go out into the world and could make people have that sort of sense of catharsis that I'm not alone in this. Somebody else has had this experience and had this feeling.

I've had that same experience with some of my very brilliant colleagues who paint or who participate in other sorts of artistic endeavors. And it's nice to know that there's a community of people out here. We're all just trying to navigate the same stuff. And if we can sort of help each other, if we can capture these experiences and retranslate them in a way that people can process their own, sometimes, grief. I think it's really wonderful.

Dr. Lidia Schapira: Yes. To create a thoughtful community and accompany one another. Well, thank you for sharing your art and your wisdom and your knowing with us today, and please keep writing.

And for our listeners, until next time, thank you for listening to JCO's Cancer Stories, the Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

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Guest Bio:

Dr. Michael Slade is a Medical Oncologist at Washington University School of Medicine.