Trying To Remember How We Saw Patients on That April Morning

Cancer Stories: The Art of Oncology

In "Trying To Remember How We Saw Patients on That April Morning" by Mikkael Sekeres, an oncologist reflects on virtual visits during the COVID-19 pandemic.

TRANSCRIPT

SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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SPEAKER 2: Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

SPEAKER 3: During the past few weeks, I have become a reluctant participant in virtual health care, not because of any Luddite tendencies when it comes to technology. I just miss the physical intimacy of my patient visits. The app on my phone buzzed and flashed a green banner notification that a patient had just entered my online waiting room when I was in the midst of an actual in-person visit.

My in-person waiting room has soaring ceilings, well-spaced furniture, and muted color tones, and artwork by [INAUDIBLE] and Spencer Finch, whose Trying to Remember the Color of the Sky on that September Morning graces the National September 11 Memorial Museum. The tragedy of a cancer diagnosis, in which a rogue cell metes out punishment on an unsuspecting body, or of this pandemic, in which a virulent guerrilla virus exploits a naive immune system, and of the more than 2,500 people who died during the terrorist attacks on the World Trade Center, have their similarities.

Everyone sitting in my in-person waiting room is now masked, captive to both the malignant golem of cancer and to the coronavirus pandemic that has already claimed more lives in New York than the 9/11 attacks. If only the mask could protect them from both. I imagine my virtual waiting room to be way groovier, though, with swirling, vibrant colors, a less hypervigilant, party-like atmosphere, and no masks.

People can actually sit next to each other in my virtual waiting room, lean in as they engage in conversation, sotto voce, without masks, and appreciate seeing the subtle beginnings of a smile as the lips curl at a joke anticipated or bon mot received. You remember, like how we all used to interact only a few weeks ago.

I said goodbye to my in-person patient as she walked to our infusion area to receive chemotherapy and left for an unoccupied exam room to greet my virtual patient. I pressed the Next Patient button in the app, and his face soon came into view, filling my phone screen. He's in his 60s and lives with his wife of about 40 years in northeast Ohio, where he's a minister at a small church.

Another patient of mine, also a minister, had once described what I did for a living as being similarly pastoral to his own line of work, as I gave counsel, relieved suffering, and generally ministered to the sick. It was one of the nicest compliments I had ever received. My patient had myelodysplastic syndrome, which in its most aggressive forms can slay a life in a handful of months.

Luckily for him, he had a lower risk version of the disease, one that was so indolent that he didn't even need treatment for it. Yet another patient had once referred to this flavor of MDS as Mild Displeasure Syndrome. He didn't enjoy fighting the traffic to come see me in Cleveland every few months, nor did he appreciate having to pay for gas or parking. Otherwise, though, the disease didn't afflict him too much.

He had gone to a laboratory close to home a few days earlier to have his blood drawn, and his counts were unchanged from a few months earlier. He wore a dark fleece shirt and sat in what looked like a comfortable, ladder-back wood chair. A watercolor painting hung behind him on the wall of his home. I asked him how he was holding up in these strange times and realized I was still wearing my mask from the previous in-person patient visit. No risk of infecting my virtual patient, so I slowly removed it as he answered my question.

[SIGH] OK, I guess, he grimaced, probably feeling the weight of all he had undertaken recently to modify his lifestyle. I stay in, mostly, and conduct services virtually now on Sundays. This was at a time when some states were still allowing religious gatherings, highlighting how science, politics, and theology can often be at loggerheads with each other.

I think you're doing the right thing for the health of your parishioners and yourself, I told him, trying to be supportive. He grimaced again, the difficulty of the choices he was making evident. My focus was on the physical health of my community, but his was on the spiritual health of his flock, people whose need for his leadership had become acute.

It's hard, you know. I FaceTime members of my congregation, which has been fine. He didn't sound convinced of the ability of the technology to transcend his usual connection with the members of his church. But I held a graveside service last week, and people just can't help wanting to be next to each other and me at a time like that to comfort and console.

If this had been an in-person visit a few weeks earlier, we would have been chatting at a distance of a couple of feet, and I would have grasped his arm to support him, to let him know that I understood this pain. That's what we do for our patients. Instead, I nodded, smiled warmly, and again tried to support him with words. But I missed the physical contact.

I asked my usual questions about any symptoms of his MDS, which remained non-existent, and about the precautions he was taking to guard against COVID-19. I told him his laboratory values looked great. Then my eyes drifted again to the painting on the wall. I asked him about it. For the first time, his face relaxed into a natural smile.

Oh, my father painted that. Here, let me show you. He lifted his phone up and focused it on the painting, which now filled my screen. It's a fishing shack in Turbat's Creek, Maine. He paused, giving me time to absorb the image of the ramshackle building with red wood lap siding, by what may have been Cleeves Cove decades ago. One advantage of these virtual visits is how I get to make virtual house calls and see how my patients really live.

It's beautiful, I told him, calming. A simpler life, he answered, as we reflected on the difficult decisions we both had to make in the midst of the pandemic. It was really good to see you, I told him, meeting him in the eye as best I could. It had helped me spiritually to know he was OK. You too, he said sincerely. I hoped I had done the same for him medically.

LIDIA SCHAPIRA: This is Lidia Schapira, your host for Art of Oncology, Cancer Stories. With me today is Dr. Mikkael Sekeres, who is a professor of medicine and the director of the leukemia service at Cleveland Clinic. Welcome, Mikkael.

MIKKAEL SEKERES: Thank you, Lidia. It's a pleasure to be here.

LIDIA SCHAPIRA: It's a pleasure to have an opportunity to chat with you. And today's talk is about your most recent work published in Journal of Clinical Oncology about practicing oncology in the COVID era. Tell us a little bit about your reflections and what led you to write this piece.

MIKKAEL SEKERES: Well, I embarked on this piece based on a patient interaction I had where I saw somebody in person, and as we're learning how to provide virtual care to people, we have interspersed with our in-person meetings virtual meetings. I specialize in leukemia, as you mentioned, so most of my interactions are in person because people have to get blood drawn. And as much as virtual technology has progressed, we still can't draw blood over Zoom.

I'd seen a patient in person and then switched to this virtual world and realized actually how dystopian our lives have become. Not only are we trying to treat a terrible, terrible diagnosis of cancer, this malignant golem that ruins people's lives and causes everyone to hit the reset button, but we're also doing it in the midst of a pandemic. And we're struggling to do this while we're also newly wearing masks and sometimes face shields and trying to navigate technology, multiple serious diseases, and provide personal care.

So this piece started with an interaction over video. And part of it involves this fantasy about what our actual waiting room is like and what our virtual waiting room could be like. Our actual waiting room people cautiously sitting, separated by at least 6 feet, covered with masks, not making eye contact, nervous about being in an enclosed space with other people, as opposed to a virtual waiting room, where, my word, we're actually doing things like sitting next to each other and interacting and whispering things to each other and actually laughing.

And it's amazing how much laughter has not been part of our patient interactions because we've been so nervous and our patients have been so nervous. And then in the piece, of course, I get into what it's like to have a virtual visit with a patient.

LIDIA SCHAPIRA: That's so interesting. So much to unpack there. Let's talk a little bit about the stress that you feel conducting these virtual visits. Can you tell me a little bit more about that and how that has evolved over the last three or four months? Because let's remember, you wrote this when it was still fresh. And now, unfortunately, we've all become more experienced in conducting these virtual meetings.

MIKKAEL SEKERES: One of the biggest stress points for me-- and I don't think I'm unique in this aspect of caring for patients-- is the inability to touch somebody. I think a lot of us go into oncology-- and let's face it. We are staring down the scariest diagnosis a person can get. And I always tell the story about how when I a long time ago wrote a book about cancer, I, being a good Jewish grandson, of course, the first thing I did was give it to my Jewish grandmother, so she could fell over it with her friends.

I hand it to her. She saw that it had "cancer" on the cover and immediately hit it in her bookshelf. Because it was from a generation when they never mentioned cancer above a whisper, for fear of invoking it. So we're facing this. And I think the reason we take this on, in addition to the fact that I think we're good people, is because we like that intimacy. And there's an intimacy in caring for a person with cancer, where they are letting us in to probably the most momentous part of their lives to be a part of it, reluctantly.

They don't want us to be a part of something that involves cancer, but they're letting us in. And we're seeing them make decisions and address these events that people really only face once or twice in a lifetime and be a part of those decisions and those events. And I think we're drawn into this empathically and want to touch them, want to hold their hand, want to hug at the end of a visit.

And amidst COVID, we can't do that anymore. So there's this artificial separation that none of us is used to. And I think that's why I've seen some of the smiling and some of the laughter disappear from these visits.

LIDIA SCHAPIRA: In a way, the laughter and the smiling can be present when you're doing it remotely through video and not when you're physically with somebody because you have to keep your distance and your masks. And yet it's bizarre because you can actually see that with a camera focused on somebody's face, you can see their expressions. But there's something that's just missing that we can't do.

As you said, we can't draw blood through Zoom, and we can't touch through Zoom. And many of us have gotten to rely on our ability to touch patients to convey some of our good positive feelings towards them. And so we're left without that. And I think that is stressful as well.

Tell me a little bit about how you process some of these experiences and the role that writing has in your life as a means to help you process some of these experiences. I mean, clearly you write also to share with others. But writing also, for many of us, has a way of helping us sort of understand what happened and has some sort of a therapeutic value, wouldn't you say?

MIKKAEL SEKERES: I think writing is the way that a lot of us process this deluge of humanity that we're faced with every day we see patients. Right? It's an incredible experience to be part of somebody's life when that person is facing down the scariest thing we can imagine. And it really is. We use the word "privilege." We say it's a privilege to be part of their lives.

But in this case, it really is. We're invited into a person's life in a way that they really only invite their closest family members. So when we face this all day long, I think we need a way to process it. And sometimes we process it by decompressing with a colleague or going home and venting with a colleague.

Hopefully we don't process it in ways that are dangerous to ourselves through substance abuse, but that really does happen. I process it through writing. And I know that I have to write about something when I leave a patient's room and my stomach turns. And my stomach turns because there's a point of tension. And I think all writing starts at a point of tension. And it's turning because I can't figure out something that happened in the room. It's something that bugs me.

And maybe it's the way I reacted to something that a patient says. Maybe it's the way they reacted to me. So I know that when that happens, there's a story there that I need to process. Or at the very least, there's something I need to process and talk through with a friend or with my wife. And stories start at that point of tension, and ideally they work backwards and forwards.

Because the point of tension isn't starting point zero in a story. It's somewhere in the middle. And it's our job to figure out what preceded it and then what's going to follow it.

LIDIA SCHAPIRA: That's amazing. So it requires a measure of self-awareness that you've probably cultivated over time. When did all of this become so clear to you, that when you feel that there's something about that visit that you need to process that triggers the physical sensation, that that sends you to your desk and to your keyboard?

MIKKAEL SEKERES: I don't think there's one seminal point when you have insight into yourself. I think over a lifetime, you hope you get better insight into yourself. But I'm constantly reminded that there are blind spots that I have, as I'm sure everyone has. When I was a resident, I had this wonderful attending. And there was one point I came out of a patient's room, and I said to her, you know, there was this interaction that occurred, and I just don't feel comfortable with that.

And she said, ah, your Spidey sense went off, didn't it? And I said, what do you mean? And she said, well, it's just like Spider-Man. When Spider-Man senses danger, his Spidey sense goes off, and he needs to investigate what's going on. She goes, always pay attention to your Spidey sense because it means there's something you have to unpack there.

So I think it really started very early in my career when I realized that she called it a Spidey sense. I call it that turn in your stomach. There's something you have to unpack, you have to explore. And maybe in doing so, you recognize something that's there in your patient that you never knew was there before. But more often, you're recognizing there's something in yourself that you hadn't seen before.

LIDIA SCHAPIRA: My follow-up question to that is, when do you decide that you want to share it with others and publish it, and when do you decide that this is just for you? This is just helpful for you to vent or process.

MIKKAEL SEKERES: Well, as you know, I have had the extreme pleasure of being one of your editors for Art of Oncology, so we all see a lot of essays, a lot of people who write about experience. Because there are a lot of people who are processing this deluge of humanity that they see. There are certain essays where someone is processing, and they successfully process it but haven't communicated it effectively to an audience.

And I think the reason is that when we're writing-- and I'm sure you do this too-- the most important person in the essay is your patient. It's not you. So I recognize-- I hope I recognize when I write that if I have an instance where it's about my patient, I'm really celebrating people, not saying, oh, this was a really hard patient to deal with. A hard patient to deal with, that means that I'm having trouble with it. That doesn't mean my patient is a hard person.

And taking ourselves out of those essays and out of those experiences and focusing on just the wonders of humanity is when there's an essay that should be shared with other people. If it's about my problems and how I screwed up during the patient interaction, then I think it's worthwhile sharing with other people also if I'm exposing my own vulnerability. The time it's not OK to share with other people is if you're blaming the patient.

Patients are blameless. The original definition of cretin and cretinism, they were Christlike. They were born without sin. Our patients are not born of sin. They have a terrible diagnosis. It's our job to try to fix it or to try to help them along a journey where they've made decisions that align with their goals. They're never to blame.

So if an essay comes out and a patient is blamed, that's when you put in a drawer, don't let other people see.

LIDIA SCHAPIRA: I see. Putting it in a drawer just dates us, right?

MIKKAEL SEKERES: [LAUGHS]

LIDIA SCHAPIRA: I have said that to some aspiring young writers. I said, you should put this in a drawer for six months and then revise it. And then I realized that it sort of fell flat. It did not land in the way it was intended. Tell me a little bit more about what writing means in your life. And I have a very specific question, which is that you published a lot of research.

So for original research, we cultivate a certain writing style, and we are sort of in a hurry to get it published as quickly as possible, whereas with these reflections, the writing is different. The style is different. And we need that little extra processing time or maturity, and so sometimes it's better, actually, to wait. How do you think about these things?

MIKKAEL SEKERES: So I don't make as much of a division between scientific writing and creative writing because there's creativity in scientific writing. And I look at it-- it's almost like a game. How efficiently can I communicate information and waste as few words as possible in a manuscript? And how can I communicate something that I think is just amazing, this scientific finding or this nuance of a study, to somebody else so they'll think it's amazing also?

I think those aspects are actually very similar between scientific writing and creative writing. The difference, as I think you're leading up to, is that often, we write something creatively, and we've processed. We feel so much better after it. And I've been guilty of this also. You feel as if it's just been handed down from the mount. This is the word of God on paper or on your screen, right? And it is perfect. And any ability, any attempt to modify it would be like modifying the Ten Commandments.

But in reality, first drafts are just that. They're first drafts. I once heard from somebody-- I love this concept that writing-- in most of life, we have these George Costanza moments. So remember in Seinfeld, George Costanza would be in an interaction. There was one episode, and then afterwards, he would go, oh, I wish I had said this instead. Oh my God, as he's complaining to Jerry and anyone who's listening to him. He wishes he had the chance to modify that instead.

Writing is the only time we can undo those George Costanza moments. Where we put things down in our first draft and we think, oh, this is the word of God. Put it away. Put it in your electronic drawer. Then go back to it a week later and you read through it and you go, oh my God, this is embarrassing. I wish I had said this instead. Well, you can say that. You can change it.

So my advice to writers, particularly creative writers, is don't submit it immediately. Put it in your electronic drawer for a week, two weeks. Go back to it. Look it over. You'll have that George Costanza moment during that time when you can correct things. Then go back to it again and make it something that's really special to submit.

LIDIA SCHAPIRA: And my last question, to wrap it up, is have you thought about writing for a lay audience or for a broader audience? I know you've published a lot of assays in journals and that you write for The New York Times. What is the next step for you?

MIKKAEL SEKERES: So I write in that way because I am the product of two English majors. I'm the only doctor in my family. And when I went to medical school, I learned all these complicated Latin terms and put on my armor of being a medical student with these new terms but who really didn't know what he was doing and would use these terms around my parents. And they would regularly rebuke me on the phone for using complicated language and tell me I had to simplify things and explain things clearly.

So I gravitated towards writing for a lay audience because I am the product of a lay audience and had to speak to them. I have written a book called When Blood Breaks Down, Life Lessons from Leukemia, with the MIT Press, where I write in long form about three patients who are composites of patients I've seen over my career who have different types of leukemia. But really to get to that nugget of how we communicate with patients, how these conversations actually go, and how people make decisions, and how being part of our patients' lives makes us such better human beings.

LIDIA SCHAPIRA: Well, thank you so much for that. I look forward to reading the book. Is it out yet?

MIKKAEL SEKERES: It is. It's out now.

LIDIA SCHAPIRA: Excellent. I'll need an autographed copy, sir. So thank you so much for chatting with us. This ends our podcast today for Cancer Stories, The Art of Oncology, in a wonderful conversation with Professor Mikkael Sekeres. Thank you so much, and I'll see you next time.

SPEAKER 2: Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

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