By American Society of Clinical Oncology (ASCO)
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Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "Just Humor Me” by Dr. Stacey Hubay, who is a Medical Oncologist at the Grand River Regional Cancer Center. The essay is followed by an interview with Hubay and host Dr. Lidia Schapira. Dr Hubay share how even though cancer isn't funny, a cancer clinic can sometimes be a surprisingly funny place.
TRANSCRIPT
Narrator: Just Humor Me, by Stacey A. Hubay, MD, MHSc
Most of the people who read this journal will know the feeling. You are lurking at the back of a school function or perhaps you are making small talk with your dental hygienist when the dreaded question comes up—“So what kind of work do you do?” I usually give a vague answer along the lines of “I work at the hospital” to avoid the more specific response, which is that I am an oncologist. I have found this information to be a surefire conversational grenade, which typically elicits some sort of variation on “wow, that must be so depressing” although one time I did get the response “Great! I’m a lawyer and a hypochondriac, mind if I ask you some questions?” After I recently dodged the question yet again, I found myself wondering why I am so reticent about telling people what I do. While discussing work with strangers in our hard earned free time is something many people wish to avoid, I think for me a significant motive for this urge to hide is that I do not actually find the cancer clinic to be an overwhelmingly depressing place. Admitting this to others who are not engaged in this work can lead to at the very least bafflement and at worst offense to those who believe that laughing while looking after cancer patients is a sign of callousness. I am an oncologist who laughs in my clinic every day.
Of course, the oncology clinic is sometimes a bleak place to work. Cancer has earned its reputation as a fearsome foe, and the patients I see in my clinic are often paying a heavy toll, both physically and emotionally. Many are grappling with their own mortality, and even those with potentially curable cancers face months of challenging treatment and the torture of uncertainty. Yet somehow, perhaps inevitably, the cancer clinic is not just a place of sadness and tears but also a place of hope and laughter.
Although most of us recognize humor and use it to varying degrees, few of us consider it as an academic subject. A few lucky souls in academia have taken on the task of developing theories of humor, which attempt to explain what humor is, what purpose it has, and what social function it serves. Although there are almost as many theories of humor as there are aspiring comedians, most explanations fall into one of three categories: relief theory, superiority theory, and incongruous juxtaposition theory.1 Relief theory holds that people laugh to relieve psychological tension caused by fear or nervousness. I suspect this is the most common type of humor seen in a cancer clinic given the weight of fear and nervousness in such a fraught environment. The second category, people being what we are, asserts that sometimes we laugh out of a feeling of superiority to others. It goes without saying that this sort of humor has no place in the clinician patient interaction. Finally, we laugh at absurdity, or as Kant put it, at “the sudden transformation of a strained expectation into nothing.”2 This last category is also surprisingly fruitful in the oncology setting.
Laughter in the cancer clinic is still to some extent considered taboo. Near the start of my oncology training, I remember laughing until my stomach hurt with my attending staff in the clinic workspace between seeing patients. What we were laughing about escapes me now, but what I do clearly recall is an administrator in a buttoned-up suit striding over to us in high dudgeon. “Don’t you people realize this is a cancer clinic?” she admonished us. “This is not a place for laughter!,” she added before striding off, no doubt to a management meeting or some other place where the policy on laughter is more liberal. At this point, my attending and I looked at each other for a beat and then burst into helpless gales of laughter. We do not tend to think all that much about why we are laughing at something, but looking back now, I think at least part of the reason was the absurdity of a person so unfamiliar with the culture of the cancer clinic presuming that physicians and nurses somehow park their sense of humor when they arrive at work and turn into a herd of gloomy Eeyores.
We oncologists are starting to come clean about the fact that we laugh in the clinic and there is now a modest amount of work in the medical literature addressing the use of humor in oncology. One survey of patients undergoing radiotherapy in Ottawa found that a stunning 86% of patients felt that laughter was somewhat or very important to their care, whereas 79% felt that humor decreased their level of anxiety about their diagnosis.3 If we had a drug that decreased anxiety levels in 79% of patients, had minimal to no side effects when used correctly, and cost the health care system zero dollars, should not we be using it?
Sometimes, it is the patient or their family member who introduces an element of humor into an interaction as on one occasion when my patient was filling out a pain survey which included a diagram of the body on which he was asked to circle any areas where he was having pain. As his wife ran through a detailed list of his bowel habits over the past few days, the patient circled the gluteal area on the diagram he was holding, pointed to his wife and said “I’ve been suffering from a pain in my ass doctor.” His wife looked at him pointedly for a moment before the two of them started laughing and I joined in.
Sometimes, a patient’s use of humor serves to level the playing field. Patients with Cancer are vulnerable, and the physician is an authority figure, meting out judgments from on high. My patient from a few years ago was having none of that. I met him when he was referred to me with widely metastatic lung cancer, a diagnosis typically associated with a dismal prognosis. The patient, however, was not buying into any of the usual gloom and doom that is customary for these interactions. As his daughter translated the information I was providing, he tilted his chin down, fixed his gaze on me, and proceeded to smile at me in a disarmingly friendly way while simultaneously waggling his generous eyebrows up and down throughout the interview. Over the course of 45 min, I became increasingly disconcerted by his behavior until eventually, I was unable to finish a sentence without sputtering with laughter. If you think you would have done better, then you have clearly never been on the losing end of a staring contest. By the end of the interview, all three of us had happily abandoned any hope of behaving with more decorum. Laughter and the use of humor require a certain letting down of one’s guard, and the fact that all three of us were able to laugh together in this interview took me down from any pedestal onto which I might have inadvertently clambered. One study from the Netherlands noted that patients used humor to broach difficult topics and downplay challenges they faced and concluded that “Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter.
If applied appropriately, adding shared laughter may help optimize shared decision-making.”4 Although it could be a coincidence, it is worth noting that several years after meeting this patient, I discharged him from my practice because he had somehow been cured of lung cancer. Perhaps laughter really is the best medicine.
On other occasions, it might be the physician who takes the plunge and uses humor during a clinical encounter. The same Dutch study by Buiting et al noted that 97% of all specialists used humor in their interactions and all reported laughing during consultations at least occasionally.
One of my colleagues, a generally serious sort whose smiles in clinic are as rare as a total eclipse albeit not as predictable, managed to win over his patient with a rare outburst of humor. During their first meeting, the patient listed off the numerous ailments he had experienced in the past including his fourth bout with cancer which had prompted this appointment.
As he finished reciting his epic medical history, my colleague looked at him somberly over the rim of his glasses for a moment and asked “Sir, I must ask—who on earth did you piss off?” The patient was so tickled by this interaction that he recounted it to me when I saw him a few weeks later while filling in for my colleague.
Although humor is a powerful tool in the clinic, it is of course not something that comes naturally to all of us. Attempts at humor by a clinician at the wrong time or with the wrong patient do not just fall flat but can even be damaging to the physician-patient relationship. Even if a physician uses humor with the best of intentions, there is always the possibility that they will be perceived by the patient as making light of their situation. As Proyer and Rodden5 point out, tact is essential and humor and laughter are not always enjoyable to all people, or to borrow a phrase frequently used by one of my patients, “about as welcome as a fart in a spacesuit.” Socalled gelotophobes have a heightened fear of being laughed at, and with them, humor and especially laughter must be wielded with great care if at all. All I can say in response to the legitimate concern about the use of humor being misconstrued is that as with any other powerful tool physicians learn to use, one improves with time. As far as PubMed knows, there are no courses in medical faculties devoted to the fine art of the pun or the knock-knock joke. But even if we physicians cannot all reliably be funny on command, perhaps there is something to be said for occasionally being a little less self-serious.
One must also be mindful of patients with whom one is not directly interacting—to a patient who has just received bad news, overhearing the sound of laughter in the clinic corridor has the potential to come across as insensitive.
Moments of levity are therefore best confined to a private space such as the examination room in which physicians and patients can indulge in anything from a giggle to a guffaw without running the risk of distressing others.
The final reason I submit in support of laughing in a cancer clinic is admittedly a selfish one. While humor has been shown to have the potential to reduce burnout,6 the real reason I laugh with patients in my clinic is because it brings me joy.
The people at parties who think my job must be depressing are not entirely wrong. I have noticed that when I have a positive interaction with a patient based on humor or laugh with a colleague about something during a meeting, I feel better. Surprise! As it turns out, this is not just an anecdotal observation. In 2022, a study was published whose title was “Adaptive and maladaptive humor styles are closely associated with burnout and professional fulfillment in members of the Society of Gynecologic Oncology.”7 The SGO has not to my knowledge been widely recognized up to this point for their sense of humor, but I have a feeling that might change.
Humor is an essential part of the way I approach many situations, and given that I spend the majority of my waking hours at work, it is neither possible nor I would argue desirable for me to leave that part of myself at the entrance to the cancer center. So to the administrator who admonished my mentor and me to cease and desist laughing in the cancer clinic, I respectfully decline. My patients, my colleagues, and I will continue to laugh together at any opportunity we get. Joy in one’s work is the ultimate defense against burnout, and I for one intend to take full advantage of it.
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, Professor of Medicine at Stanford University. Today we're joined by Dr. Stacey Hubay, Medical Oncologist at the Grand River Regional Cancer Center. In this episode, we will be discussing her Art of Oncology article, “Just Humor Me.”
Our guest disclosures will be linked in the transcript.
Stacey, welcome to our podcast, and thank you for joining us.
Dr. Stacey Hubay: Thank you for having me. It's a pleasure to be here.
Dr. Lidia Schapira: It is our pleasure. So let's start by chatting a little bit about what humor means to you and what led you to write this piece and share it with your colleagues.
Dr. Stacey Hubay: I didn't realize how important humor was to me until recently. I just finished a Masters in Bioethics, which was 20 years in the making, and this was the first time I'd been writing anything that wasn't a case report for many, many years. And there was actually specifically a course called “Writing in Bioethics,” and this was the first thing that came to my mind. And I realized sort of how much humor there is in my day to day work life, which, because none of the other people in this bioethics class of 10 or 14 people were working in oncology, they were surprised. So I thought it would be interesting to write about that. And then when I started thinking about it, I realized how integral it is to most of, I guess not just my practice life, but the way I deal with life. And then I could see a thread going back all the way to the beginning of my practice in oncology, and I'm like, “I should write about this.” And I don't think it's unique to me either. I think it's probably many of us in this field.
Dr. Lidia Schapira: It is. So let's talk a little bit about humor in the practice of such a serious specialty as we tend to think, or people tend to think of, as in oncology. You talk about humor also connecting you with joy and practice, can you tell us a little bit more about that?
Dr. Stacey Hubay: I'm just as surprised, probably as anybody, at least when I first went into this field, which is now more than 20 years ago, how much happiness I found in the field. I meant what I said in the beginning of this essay. When I run into people or strangers, you're getting your hair cut or you're at your kid's volleyball practice, and people always say, “Oh, so what do you do?” And I always say, “I'm in healthcare.” And if they start drilling down, eventually I have to admit what I do. And I say, “I'm an oncologist.” And immediately the long faces and people say, “That must be so terrible.” And I'm like, “Well, it can be, but it's not as bad as you might think.” And they're like, “Oh, it must be very difficult.” And I know that avenue of conversation is closed once or twice. I think I did try saying, “You know what? I have a surprising amount of fun in my clinic with my patients.” And they were aghast, I think is the word I would use. And it made me realize sort of what a taboo it is for many people, including maybe some of us in the field, to admit that we sometimes enjoy ourselves with our patients in our clinics.
Dr. Lidia Schapira: So let's talk about that. Let's talk about joy, and then from there to laugh. I think the reason why laughter seems sort of stranger than joy is laughter assumes that we see some levity, humor. And some people would say, there's really nothing funny about having humor. And yet you seem to see it and find it and share it with your patients. So take us into your exam rooms and tell us a little bit more about your process.
Dr. Stacey Hubay: It's funny, when I think about the humor in my clinics, I don't see myself as the one who's necessarily sort of starting it, although maybe sometimes I do. I think perhaps it's just that I'm more open to it. And I think it's frequently the patients who bring it in with them. Obviously, we know patients in the oncology clinic, they're often very nervous. It's a very anxious time for them. And we are in a position of power compared to our patients, they're very vulnerable. And so sometimes the patient makes a joke, sometimes I wonder if it's a way of testing if that kind of relationship will work with you. They're kind of testing you to see if you will respond to that. And it's also a way of them relieving their own anxiety, because one of the theories about humor is just a way of alleviating tension. It makes sense that oncology is a place where humor would be welcome, because it's one of the most tense places, I think, in medical practice, although I'm not sure it's present in other places like at the ICU.
So the patient often brings it in, and then you respond to it, and if you're on the same wavelength, it sort of immediately establishes this kind of trust between you and the patient. It's not something you can do with everybody. Sometimes some people will not be open to that at any time. And some patients, you have to get to know them quite a bit before that starts to come into the mix. But I find with most people, if you follow them for long enough and you have a good working, therapeutic relationship with them, just like you would the people you like, your friends, your family, that comes into a relationship almost unavoidably. And I used to think, “Oh, I'm not supposed to do that,” when I first came into practice. I'm a serious oncologist, which I am, and I can be a serious oncologist. And I also just didn't have the bandwidth for it. I think I was so kind of focused on, I have to know what I'm doing. Early in my practice, I didn't have the mental energy to devote to that. And then as that part became easier, I became kind of more open, I think, to that, coming into the interactions with my patients. And over time, I started realizing that was probably what I enjoyed the most about my working day. At the end of the day, I'd come home and tell stories, and my kids would be like, “It sounds like you have fun at work.” And I go, “You know? I really do. Surprisingly I do.”
Dr. Lidia Schapira: That's so very cool. I think there's so much wisdom in what you just told us, which is that at the beginning, especially when in the first few years of your practice, you really are so focused on being clinically competent that you may be just very nervous about trying anything. And then as you relax, you actually say in your essay that for some people, this may bring relief and may level the playing field. So if there is an opportunity and you're loose enough to find it, you may be able to keep that conversation going. It made me wonder, I don't know if you've had any experience yourself as a patient or accompanying a family member as a caregiver to a medical visit. Have you used humor when you are the patient or when you're accompanying the patient?
Dr. Stacey Hubay: That's an interesting question. I haven't been a patient apart from my routine family medicine visits for quite a long time. But when I was much younger, I was a teenager, I did have that experience. I was maybe 15 or 16. I had some parathyroid issues. And I remember seeing these specialists in Toronto, and they were very serious people. I remember thinking, if I want to become a physician, because it was at the back of my mind at that time, I'm going to be a lot more fun than these people. I'm going to enjoy myself a lot more. And little did I realize how difficult that actually was at the time. But I found them kind of very serious and a little bit intimidating as a 15-year-old kid. I hadn't reflected on that before. I'm not sure if that's something that I'm deliberately pushing back against. I think now if I see a physician as a patient, I probably am much more willing to bring that in if the physician is open to it. But you can usually tell many physicians, you meet them and you're like, “You're not going to even try that kind of thing.” But if they're open to it, I think it would bring me much more fun as a patient as well.
Dr. Lidia Schapira: Yeah. Do you teach your students or trainees or members of your team to use humor?
Dr. Stacey Hubay: That's a very interesting question. How do you do that? So I mentioned, I just finished this Masters of Bioethics, and one of the excellent courses in it was how to teach bioethics, which really was a course about how to teach anything. And most of us who are in medicine, we've spent a lot of time teaching without being taught how to teach. In my own practice of teaching, we mostly use one on one with people coming into our clinics and seeing patients with us. And I think mostly some of it's through observation. I will say to people who work with me that we all have to find our own style. It's important, no matter what your style is, to try and connect with patients, because you're trying to create a therapeutic alliance. You're on the same side. The way that works for me is you don't laugh with people you don't trust. When you're trying to make a plan with people in these difficult situations, I think if you've already formed this alliance where they realize you're with them, they're more likely to believe you and trust your recommendations. I tell trainees, I'd say, “This is my way of doing it. And if it works for you, that's wonderful.” But I can see that for some people it's difficult.
Although even the most serious clinicians, one of my very good friends and colleagues who I mentioned in my essay and I talked about, he doesn't make a lot of jokes with his patients, which is perfectly reasonable, but the occasional time he does, the patients were so struck by it because they knew him as such a serious person. They bring it up, “Remember that time my doctor said this,” and they thought it was a wonderful thing. So it's difficult to teach. It's just how would the Marx Brothers teach someone else to be the Marx Brothers? It can't be done. Only the Marx Brothers are the Marx Brothers. Not that I'm comparing myself to the Marx Brothers by any means, but I think you find your own style. Maybe what I'd like to show trainees who come through with me is that it's okay to enjoy the patients, even in a very serious discussion.
Dr. Lidia Schapira: Yeah, I would almost say that it speaks to the fact that you're very comfortable with your clinical persona in that you can allow yourself to be totally human with them. And if human means that you can both sort of align around seeing some humor or cracking a joke, that is perfectly fine. I have a question for you, and that is that a lot of my patients in my practice, and maybe some of our other listeners come from completely different cultural backgrounds, and many don't speak the same language as I do. So for me, thinking about humor in those situations is impossible just because I just don't even know what we can both accept as funny. And I don't want to be misunderstood. Tell me a little bit about how to think of humor in those situations.
Dr. Stacey Hubay: That's a good point you make. It makes me think about how when I read Shakespeare's plays, we all think his tragedies are fantastic. And when I read his comedies, I'm like, “This isn't very funny.” Or if even when you watch sort of silent movies from the 1920s, I'm like, “Did people really laugh at this?” So you're right. Humor is very much of its time and place and its culture. And even people from the same time and place might not share the same sense of humor. That being said, somehow it still works with the people who are open to it. Somehow it's not necessary, because you've made a very witty joke, or vice versa, that we all understood all its complexities. It's more the sense that we're laughing together.
And I talk about a gentleman that I met in my practice in this essay, and he didn't speak English, so his daughter was translating for us. And nobody was making any kind of verbal jokes or humor. And this was the first time I was meeting him in consultation, and he just kept making funny faces at me the whole time I was talking, and I didn't know what to do. I was completely bamboozled by this interaction. And it actually ended up being sort of one of the funniest visits I'd had with a patient. By the end of it, I could barely get a sentence out. And I thought, this is absurd. This is a very serious situation. This poor gentleman has stage 4 lung cancer, brain metastasis, but he just wouldn't let me be serious. So I think that humor can transcend cultural, linguistic boundaries amazingly enough. Again, if the person was open to it, this person was almost determined that he was going to make me laugh. It was like he'd set out that by the end of his visit, he was going to make sure that we were having a good time. And I was just, “I'm helpless against this. We're going to have a good time.” I remember coming out of the room, the nurses I was working with, they're like, “What was going on in that room? Is he doing well?”I'm like, “Well, in a way, yes, he is doing well.”
At the end of this visit, we were all in a very good mood. But I'll sometimes use sign language, or I'll make some stab at French or whatever it is that the patient speaks, and then they just laugh at me, which is also fine, because they can kind of see that you've made yourself vulnerable by saying, “You know, it's okay if I can't speak your language.” And they just smile and laugh with me. So it's not that it's a joke so much, it's more that they just feel comfortable with you. But you're right, it is more challenging. It's something I wouldn't usually do in such a situation unless I had gotten to know the patient, their family, reasonably well.
Dr. Lidia Schapira: Let's talk for a moment about wellness and joy in practice. What gives you the greatest joy in practice?
Dr. Stacey Hubay: Undoubtedly the people that I see and I work with. When you go into medicine and you train, we all train in academic settings. And I had excellent mentors and academic mentors, and the expectation, because you're trained by people who are good at that kind of work and succeeded, is that you might want to pursue that, too. And it took me a while to realize that that's not where I get most of my joy. I like being involved with research and I appreciate that people are doing that work and I love applying that knowledge to my practice. But I get my joy out of actually seeing patients. That wasn't modeled a lot necessarily to us in the academic setting. It's taken me quite a long time to realize that it's okay to lean into that. If that's what I like about my practice and that's what I can bring to the interaction, then that's what I'm going to do. And I started looking back, it would have been nice to realize, it's okay. It's okay to be a clinician who really enjoys seeing patients and wants to do a lot of that. Again, different kinds of people become physicians, but a lot of the people we had as mentors, they had chosen academic careers because, not that they didn't like patients, they often did, but they really wanted to pursue the research aspect of it. And they would try to cut down on their clinical work and say, “It's nice if you don't have two clinics, you can focus on the research.” And I think to myself, but I like doing the clinics and I like seeing the patients, and it would be a shame to me if I didn't have that.
It's not just the patients, but my colleagues as well, who are also great fun to have around, the nurses we work with. Really, it's the interactions with people. Of course, we get joy from all kinds of other things. In oncology, it's good to see patients do well. It's wonderful to apply new knowledge and you have a breakthrough coming from immunotherapy to lung cancer, melanoma. That sort of thing is fantastic, and it gives me joy, too. But I have the feeling that when I retire at the end of my career, I'm going to look back and go, “Remember that interaction with that patient?” Even now, when I think of when I started in clinical settings as a medical student, I remember, I think it was my first or second patient, I was assigned to look after an elderly woman. She had a history of cirrhosis, and she was admitted with hepatic encephalopathy and a fractured humerus after a fall. I didn't know what I was doing at all, but I was rounding every day. And I went to see her on the third day, she was usually confused, and I said, “How are you doing?” She looked at her arm and she said, “Well, they call this bone the humerus, but I don't see anything particularly funny about it.” I thought, “Oh, she's better.”
That's actually one of the earliest things I remember about seeing patients.
Or the next year when I didn't realize I was going to pursue oncology. And I was rotating through with an excellent oncologist, Dr. Ellen Warner at Sunnybrook, who does breast cancer. We were debriefing after the clinic, and she said, “Someday, Stacey, I'm going to publish a big book of breast cancer humor.” And I thought, “I wonder what would be in that book.” And that's when I got this inkling that maybe oncology had just as much humor in as every other part of medicine. And that proved to be true.
Dr. Lidia Schapira: What was it, Stacey, that led you to bioethics? Tell us what you learned from your bioethics work.
Dr. Stacey Hubay: I think it's because basically I’m a person who leads towards the humanities, and for me, bioethics is the application of philosophy and moral ethics to a clinical situation. And I think medicine, thankfully, has room for all kinds of people. Of course, you have to be good at different things to be a physician. But I always imagined myself, when I went to school, that after a class, you'd sit around a pub drinking beer and discuss the great meaning of life. And I thought, this is my chance to pursue that. And I was hoping to kind of– I didn't think of it as that I was going to this because I was interested in humor and joy in oncology, although I obviously am. I was thinking that I would be able to make a difference in terms of resource allocation and priority setting, and I still want to pursue those things. Things often lead you down a side road. And bioethics, for me, has sort of reminded me of what I like about this work. And because I was surrounded by many people who are not doing that kind of work, who were surprised how much I liked it, it made me think very carefully about what is it that I like about this. So the bioethics degree, it's finally allowed me to be that person who sits around in pubs drinking beer, discussing Immanual Kant and Utilitarianism and whatever moral theory is of flavor that particular day.
Dr. Lidia Schapira: What led you to write this particular story and put it in front of your medical oncology colleagues? Is it your wish to sort of let people sort of loosen up and be their authentic selves and find more joy in the clinic?
Dr. Stacey Hubay: That’s a good question! The most immediate impetus was I had an assignment for my degree, and I thought, I have to write something. But I'd been writing down these sort of snippets of things I found funny. Occasionally, I just write them down because they were interesting to me. And because we often relate stories to people, “What did you do today? What was your day like?” And because you tell these stories over and over, they develop some kind of oral, mythical quality. You're like, “Here's what I remember that was funny that happened, and it might have been many years ago now.” And I think I'd been thinking a long time about writing it down and sort of organizing it that way. And I guess having to produce something as part of this degree program was an impetus for me. But I'd always wanted to do it. And I think the main thing was I wanted to make it clear to myself what it is I like about it. It's actually made it, for me, much more clear. It was sort of a nebulous thing that I like my work and what is it like about it. And this is what I like. I like the joy I get from patient interactions. And then a secondary goal is I hope that other people, if they were to read this, they realize it's okay for us to have joy in our work as oncologists. And there is a lot of doom and gloom in the world and in our practices, but there's always, always a chink that lets the light in, there's always some humor in what we do. And so I hope that if other people can find that, too, that they enjoy their practice and they last a long time and ultimately help patients through this difficult journey.
Dr. Lidia Schapira: Are you somebody who likes to read stories? And if so, what stories have you read recently that you want to recommend to our listeners?
Dr. Stacey Hubay: Oh, I am reading The Master and Margarita because three different people recommended this novel to me over the last three years. When a third person did, I thought, “That's it. Got to read it.” It's a Russian novel from the 1930s that was banned until, I think, the ‘60s or ‘70s. It's like a satire of Russian society in the ‘30s. And actually, what I like about it, I haven't finished it. I'm a third of the way through, as I think it's one of the so-called classic novels, people tell me, but that's funny. A lot of the classic novels are kind of tragedies or romances, and this one is sort of absurd black humor in the face of a difficult situation, which I guess is related to oncology, again. So this sort of oppressive, difficult society, the 1930s and Soviet Union, how do you deal with that? With humor. So I'm quite enjoying it, actually. So I recommend that one.
Dr. Lidia Schapira: Well, you're an amazing storyteller, and I really enjoyed our conversation. Is there any final message that you want to convey to our listeners?
Dr. Stacey Hubay: If you have a chance to become an oncologist, you should do it. It's just the best career I can imagine.
Dr. Lidia Schapira: Well, with your laughter and with that wonderful wisdom, let me say, until next time, to our listeners, 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/podcast.
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. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
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Guest Bio: Dr. Stacey Hubay is a Medical Oncologist at the Grand River Regional Cancer Center.
Listen to ASCO’s Journal of Clinical Oncology article, "Scotch and Pizza” by Dr. Paul Jansson, who is an Emergency and Critical Care Physician at the Brigham and Women's Hospital. The article is followed by an interview with Jansson and host Dr. Lidia Schapira. Dr Jansson share his perspective as a critical care physician and how one question can serve many purposes all at once.
TRANSCRIPT
Narrator: Scotch and Pizza, by Paul S. Jansson, MD, MS
“Would you tell me about J?,” I asked. What was she like? I made eye contact with one of her sons, who looked back at me, somewhat puzzled.
“You mean her illness?” he asked, quizzically. Immediately, I worried that I had lost the family,
all sitting shoulder-to-shoulder in the cloistered conference room. No, I responded, can you tell
me about J before the illness? What was she like? J came to the intensive care unit (ICU) in the early hours of the morning, only a few hours after making her way from the emergency department to the oncology ward. Admitted with a diagnosis of failure to thrive and dehydration, her CT scans made clear the extent of her cancer’s spread. Over the last few months, she had shown remarkable improvement with each serial round of palliative chemotherapy, beating the cancer back and holding it at bay, one round at a time, but it had now spread seemingly everywhere, despite medication, despite molecular testing and targeted treatment, and despite her tenacity.
Overnight, she became more and more confused, her electrolytes deranged from days of poor oral intake, now admitted to an unfamiliar environment. Her lungs, bearing the brunt of her disease, had further suffered over the week as she aspirated. As her breathing became more labored, a nasal cannula progressed to positive pressure ventilation. By early morning, she was unresponsive, and the early morning phone call to her family had led to a panicked reversal of her Do Not Resuscitate/Do Not Intubate order. And so she came to me, mechanically ventilated, blood pressure supported by an armada of vasopressors, her body failing, which brought us back to that small room.
We didn’t have the chance to get to know her before she got sick. I looked around the room, meeting their eyes. We only know her like this. What was she like before all of this?
In my first months of intern year in the ICU, I had seen this technique used in family meetings.
Initially, I adopted it as a matter of routine, copying the methods I had seen used by senior residents and attending physicians. As I came into my own as a physician, developing my own style, I began to see its value. It opened my eyes beyond the Comprehensive Flowsheet and the Results Review spreadsheet that scrolled into infinity. It showed me why I was doing what I was doing and who I was doing it for.
“She loved scotch and pizza.”
The room was silent, and we looked around. Her oldest daughter, a nurse herself by training, had broken the silence. Together, she clarified. I know it’s a weird combination, she said, but she loved scotch and pizza. It must have been something from college.
We all glanced around for a moment, making bewildered eye contact, before the entire room broke into laughter.
“She made a mean coleslaw,” volunteered another brother. “And a great hot dog.”
“She was a fantastic mother,” reported the next.
“She was my soul.” Thus far, her husband had sat quietly in the corner, the face of stoicism. He was a retired physician, a self-described man of few words. A moment of silence as we all looked toward him, across a conference table, barren except for half-used boxes of tissues, surrounded by children on both sides. She was the best thing that could ever happen tome, he continued. Another long pause, until the words spilled forth. When I would leave her to go to work, I felt incomplete. When I returned home, I felt an immense sense of being at peace. When I was with her, I was calm. She made me whole. She was my soul. We sat in silence, the tears welling in my eyes, welling in all our eyes. She was everything that I was not. Kind. Patient. A fantastic cook. We laughed. Then, another long pause as he gathered his thoughts. And now I know what I need to do.
In his stoicism, his silence, his love, he told us what we all needed to hear. As deeply as her loss would rend his soul, there was nothing more that I could do—that anyone could do—to bring back the woman who gave such life, and further treatment would only prolong her suffering. She died that afternoon, surrounded by her family, finally at peace. A chef for the neighborhood. A mother. A friend. A wife. A soulmate. And a lover of scotch and pizza.
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 am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Paul Jansson, an Emergency and Critical Care Physician at the Brigham and Women's Hospital and a member of the Harvard Medical School faculty in Boston. In this episode, we'll be discussing his Art of Oncology article, “Scotch and Pizza.”
At the time of this recording, our guest has no disclosures.
Paul, welcome to our podcast, and thank you for joining us.
Dr. Paul Jansson: Well, thank you. It's a pleasure to be here with you.
Dr. Lidia Schapira: So first, let me ask a little bit about this essay and about your intended audience. This is a beautiful meditation, I would say, on a family meeting that takes place in the context of somebody with advanced cancer. What led you to write it? What led you to decide to share it, mostly with an oncology readership.
Dr. Paul Jansson: This is a piece that I think wrote itself and it was something that came to me as I couldn't sleep in the hospital call room. I was on call the day after this family meeting and lying in the polyester sheets and listening to the air conditioning rumble, I couldn't sleep. And it just came to me all of a sudden that I had to write it, and I had to write it in this exact way. I was working an overnight shift in the intensive care unit, and at 5:00 a.m. sat down at the computer, and this just all poured out, basically, in the method in which it appears today. I think there were very minor grammatical changes, but it really just came out. It was a story that I feel that I needed to tell.
Dr. Lidia Schapira: So why do you think that this meeting and this family impacted you so deeply? I mean, there's a huge emotional connection here, and I introduced you as a critical care doctor, but you sound like a palliative care doctor to me here, sitting with a patient, basically just asking one question and then watching this loving scene unfold. And it struck me that it moved you. Did I get that right?
Dr. Paul Jansson: I think you're absolutely right. Brigham and Women's Hospital is the inpatient hospital for the Dana-Farber Cancer Institute in Boston. And so, by its nature, intensive care medicine at Brigham Women's is a lot of oncology care. And so you are absolutely right in that these conversations are very routine for us. But there was something about this family, the connection, that just stuck with me. I think with many of these conversations, it's relatively routine. It's certainly not routine for the families. But as an intensive care specialist, this is a relatively routine conversation. And to get this level of detail and humor and eulogizing on the part of her husband is really quite unusual and was very profound to me, sitting in that moment stuck with me.
Dr. Lidia Schapira: I was struck, Paul, by the fact that you asked one question, and immediately they're talking about her in past tense. She was. She loved. She did. Did that strike you in the moment as sort of showing that they actually knew exactly what was happening?
Dr. Paul Jansson: Yeah. I think there is a moment in these conversations where the family understands what is happening and what needs to happen. And it's, I think, best if the family gets there on their own and works really well in that goals of care setting. And I think the love that they were expressing for her and the admiration and the appreciation, that was really profound to me.
Dr. Lidia Schapira: One of the reasons why I love your piece is that it takes us from what we are now teaching as a goals of care discussion or a family meeting. And it brings us back more to the art of medicine, the joy of medicine, and the intimacy of these moments. This family was totally ready to accept you in their little circle and start to share things that were really very deep for them. Tell us a little bit about what it was like to be in the room with her husband, who's a retired physician, her daughter, who's a nurse, and the other family members who seem to be sort of helping one another to eulogize, as you said, in the most loving way, their almost gone mother and wife.
Dr. Paul Jansson: I am not an oncologist, and I do not have the pleasure of these longitudinal relationships that many oncologists have developed over months and years and decades for some of these patient physician relationships. And so as an intensive care physician, it's a very quick and powerful bond that we are really forced to make with the families. And so I actually never talked with this woman. She was intubated on the night shift and was brought to the intensive care unit, intubated and sedated, and I never got to meet with her. I never got to sit in the office with her and discuss her hopes and her fears and her journey and all of those things that are really more the domain of the oncologist. But in our specialty, I have to really develop this relationship very quickly, where people will trust a life and death discussion with someone whom they've only known for 15 or 20 minutes in some circumstances.
And so it really is a privilege and an honor to be granted this degree of trust and disclosure and openness about who the patient is and was in the life before I met her. And so sitting in that room, it's always very awkward to start. It's a converted conference room with some boxes in the corners, and there's only, as I wrote in the piece, a box of tissues on the table. And so very quickly, we have to go from, “Paul Jansson, I'm the intensive care doctor,” to these discussions of life and death, and how to negotiate this very fraught transition, I think is really the point that I think you're getting at in the art of medicine. And how do we go from 0 to not 0 to 60, but 0 to 100 with these really life and death decisions? And that's very difficult.
Dr. Lidia Schapira: In a flash.
Dr. Paul Jansson: Exactly. And far sooner than anyone wanted, I think, if any of these families. Everything is so sudden. I even wrote about this in the piece. She had a DNR, DNI in place, and they got the call at 03:00 a.m., 04:00 a.m. however early it was in the morning. And so you can really tell at that moment they were not expecting any of this. They were not ready for any of this. But unfortunately, we were in that circumstance.
Dr. Lidia Schapira: You know, Paul, when I hear you speak, I remember a friend of mine who is an actor and teaches doctors communication skills, and she basically says that doctors and actors have 90 seconds to develop rapport with their audience. And basically in your field or in the emergency room, this actually plays out every day. You're absolutely right, we in oncology often build these relationships, craft these relationships over time. And we probably know the names of all the people in the room and we would know what they do. But you're just kind of walking into the scene. Now that you've had a little time to reflect, do you know what it was that led them to reverse that DNR/DNI decision? Was it panic? Was it not knowing? I think as a reader, I'm struck with the fact that they had a plan, they reversed the plan, and then they quickly just came right back to what the original plan was. Maybe they hadn't expected this to happen so quickly.
Dr. Paul Jansson: I think it's more common than we think it is, or perhaps it should be. And I think every family has a different reason for why this is. And I think for some families it's just they needed more time. And so this was for them a call that was at 04:00 a.m. and they were at home and they weren't with her. And many families just want to be there for the end. I think for some families there's a bit of denial, “Okay, sure theoretically she said do not resuscitate, do not intubate, but we're not at that point yet.” So I think for some families there's that. And for some families, it just takes more time than they're expecting. And that's not unusual in our world, as I think everyone there saw what was happening to her and what we had essentially done to her, intubating her and putting her on all the pressors and doing all these things that were somewhat against her wishes at the end of life, so we had done these things to her. And it just took a little bit more time to realize this was not what she would want and also to give them time to be there. But I think every family has a different motivation, and it's hard to say how you would react with that phone call at 02:00 a.m. It's never what you think it would be.
Dr. Lidia Schapira: Yeah, it's the old president's commercial, right? “Who do you want to take this call at 03:00 a.m. when there's an emergency?” But when it's this personal, I can understand it. I wonder if you can tell us a little bit how it struck you when the family sort of very organically again reached the conclusion and her husband articulated, “I know what I need to do.” What did that feel like for you as the critical care doctor who is quickly trying to lead this family to perhaps what you would consider the most dignified or humane, compassionate denouement for them?
Dr. Paul Jansson: I think the first feeling for me was relief and just knowing that the decision that they had made for her was the right decision. And it wasn't a decision that I needed to make and talk them into or negotiate with them. It was the decision that they knew was right. And I think the other thing that stuck with me so much was the love and humor that they displayed in this. And I think many, many families would cry and be sad, but how many families would sit there and make a joke about this strange food combination that she has from college and how she loves to cook from the neighborhood, and all of these just flashes of humanity and humor that I was not expecting from the family. And then in that moment, we went very suddenly from humor to this profound grief and appreciation and reflection on who she was as a woman and her personality and how well that complemented her husband. And it was just this emotional whirlwind where we go from bad news to laughing together to crying together, all in the span of what was probably 10 to 15 minutes. That really stuck with me.
Dr. Lidia Schapira: Paul, humor me here. I don't often get to interview a critical care doctor, especially on a public medium like a podcast. So speak a little bit to me and through me to our listeners. What can oncologists do to have a good rapport with the critical care docs and nurses who are actually looking after their patients? Sometimes there are all of these moments of anticipated tension, and I wonder if you can just give us a little instruction.
Dr. Paul Jansson: That's a wonderful question. I think honesty and truthfulness is always incredibly important, and taking that relationship that you've built with the family over time and bringing us into that circle of trust and letting us give our perspective. And I am not the oncologist, as I said before, I do not know all of the data and all of these things that is well within your specialty, but I know that the specialty of critical care and what is and isn't achievable, and to have the oncologist team have those developed relationships and ideally some knowledge of what the patient would want and blend that with what I'm able to deliver as an intensivist. I think that the trust together and the working together for what the patient wishes and what we can actually deliver for the patient, that's really what is most meaningful in collaborating with the oncologists.
Dr. Lidia Schapira: Yeah, I say a little prayer for that. I know that I've walked into an ICU and hoped very much that my colleagues in critical care didn't see me as an oncologist in denial, somebody who wanted to be very much a sort of present for their patient. You probably have some of those stories.
Dr. Paul Jansson: There's an interesting tension. Yeah, I think you exactly pointed that out, that there's this tendency to think that the oncologist is always going to offer yet another round of chemotherapy or some clinical trial that can be offered. And on the intensive care side of the fence, we're sitting and counting on our fingers and sometimes toes, how many organ systems are not working, and how we negotiate that hopefulness and optimism with who is in front of us and what we've been dealing with over the last hours and days and weeks. And I think the tension is probably more theoretical. Every time I talk to the oncologist, they're quite realistic. I think more than perhaps is in my mind. So I think there's more of a theoretical disconnect than there is in real life.
Dr. Lidia Schapira: Well, I hope our professions can coexist and work collaboratively for the sake of our patients. Talk to me a little bit about how you might use this very intimate story in your teaching, since you're part of a teaching faculty.
Dr. Paul Jansson: Well, shortly after the preprint was posted, I actually received a letter by email from a faculty member at a teaching hospital affiliated with a cancer hospital, saying that he was going to start using this piece in his discussions about how to have goals of care discussions with his oncology fellows. And I think there are two different purposes of the question that I asked: “Tell me about her.” And I think they serve two distinct purposes. And the first is this humanizing and making a human connection that we talked about. It allows you to make some of that connection that you haven't had the ability to do over the last weeks and months and years. You can really see that patient as an individual person. And I think the second role that this question helps with, particularly for the intensivist, is it really helps to expectation set. And so for many people, the answer to this question will be, “Oh, well, she was running a mile a day, and she loved her pottery and she loved whatever it was that is her passion.” And for some people, the answer may be, “Well, she was having a really hard time lately, and she was spending more time in the hospital than out of the hospital.” And so that can also really help from the intensivist side of things with prognosticating and really being realistic about what we can offer at this moment. That's why I really like this question “Tell me about her,” because it really helps with everything all at once. It lets us make that human connection. It lets us gather some of the clinical information that we need, and it reminds us of why we're doing this job in the first place, and that's to take care of the patient.
Dr. Lidia Schapira: Yeah. My very last question now is this: It occurs to me that you have a lot of these moments, and as you say, you cry, you share in the human aspect of all this. And you're right there, you have a front row seat to this grief and this loss. Do you and your colleagues have any protocol or ritual to help one another and support one another and at least acknowledge the emotional load of your work?
Dr. Paul Jansson: That's an excellent question. I think from the intensivist side of things, when we have the conversation this way, it's actually a blessing to us. I think there's a lot of moral injury, particularly in critical care, and doing things to the patient that I alluded to before, that the patient wouldn't necessarily want, or unnecessarily prolonging life at the risk of suffering. And I think when patients and families realize that this is not what their loved one would want, I think for many of us, this is a relief, and it's a blessing and an honor to take care of patients at the end of life. When it goes like this, we're actually very happy. It's really a pleasure more than a cross to bear.
Dr. Lidia Schapira: Yeah. Thank you so much for sharing your thoughts, your humor, your humanism, your incredible common sense, and I'm so glad that the piece just poured out and that you chose to put it in front of an oncology readership. So from our listeners, thank you so much.
And for those of you who are listening, thank you for listening to JCO's Cancer Stories, the Art of Oncology. Until next time, when we'll find you again. 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. Paul Jansson is an Emergency and Critical Care Physician at the Brigham and Women's Hospital and a member of the Harvard Medical School faculty in Boston.
Listen to ASCO’s Journal of Clinical Oncology poem, "Mandatum” by Dr. David Harris, who is an Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic. The poem is followed by an interview with Harris and host Dr. Lidia Schapira. Dr Harris share how his team honors a patient's spirit
TRANSCRIPT
Narrator: Mandatum, by David Harris, MD
Where does the soul reside
in the darkness of the body?
Does it flicker along the highways of nerves
up the spine
up the neck
to the globe of the skull
or does it pulse, a lightening bug
in the vast caverns of our bellies?
The foot was his answer
his left, to be precise.
The cancer mushrooming from his heel
a small price
for a soul.
We told him
he had a choice:
We would take the foot
or this sarcoma would take
all of him.
But when he chose,
we did not understand.
We told him
a hundred times
in a hundred ways.
We told him
he did not understand
could not understand
so could not choose.
He told us
he once walked
all night through the cold to reach us.
“When I die I want to be
whole.”
The foot
where our flesh greets the earth’s
flesh. Where our weight
collects
builds
presses down.
Where else would a soul
want to be
when we slip
bare feet into sand
letting the cool stream
run over?
We washed and wrapped
the foot in white, clean cloth
then unwrapped it, to wash again.
Washing as the cancer grew.
Washing as the soul flickered.
Each day washing. Choosing
what we could not understand.
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 am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. David Harris, Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic. In this episode, we will be discussing his Art of Oncology poem, “Mandatum.”
At the time of this recording, our guest has no disclosures.
David, welcome to our podcast and thank you for joining us.
Dr. David Harris Thank you, Lidia. It's wonderful to be here.
Dr. Lidia Schapira: Let's start by talking a little bit about your process for writing. You're a published author. We've published one of your beautiful poems in the past. This is, I believe, the second time. So tell us a little bit about when you write, why you write, and when you decide to share your writing with others through publications.
Dr. David Harris: I think my writing starts when I have an experience that feels profound and sticks with me, and there's a certain way that feels in my body. I'll leave a room and I'll say, something happened in there. It didn't just happen to the patient, but something happened to me. It'll be one of those moments, and I think we all have these that we keep coming back to, a patient that we keep coming back to, sometimes even a single sentence that somebody said that we keep coming back to. And over time, I've realized that when I have that feeling, there's some poetry there, if I can sit with it. And I spend a lot of time just sitting and thinking about the story and trying to find what pieces of it are meaningful to me, what images are meaningful. And from there, after a long time just sitting and experiencing and listening to myself, then I begin to write, and the writing piece ends up not taking that long. It's much more of the first piece.
Dr. Lidia Schapira: And tell me, why did you choose poetry? Or do you write prose and poetry, and we just happen to be talking about poetry?
Dr. David Harris: I find poetry to be so much easier than prose. One of the things I love about poetry is that so much is left unsaid. And the idea of writing something with a plot and with dialogue and character development, that seems like a real task and a real feat. There are so many different types of poetry, and the poetry that I'm interested in writing just describes a moment. That's all it is, just shares a moment that I think other people might also enjoy. And so that seems simple.
Dr. Lidia Schapira: So, David, help me translate what you just said for our readers. In a way, many people feel that somehow they don't understand poetry, or they're not capable of fully grasping everything the poet maybe intends. Why do you think people have this feeling about poetry, almost, I will compare it here to abstract art? This feeling that somehow you need something else to understand it? Is that real or is that just a perception?
Dr. David Harris: I think that's the real experience for so many people. And maybe a better comparison than art would be music, in that there's pieces of music that I will listen to, and I'll say, I can't understand this, and they might be masterworks of famous composers, but for me, I don't have the ability to access that. And then there are pieces of music that I love, Taylor Swift, that's kind of my speed. And I think that poetry can be like that, too. I think there's poetry that you need training to be able to appreciate and to understand, and then there's poetry where just your human experience is what you need, and you can read it, and whatever it means to you, that's what it means, just like when you listen to a song. The first time I experienced poetry, and I bet this is the case for a lot of the listeners, was in English class, where I got graded on my ability to understand poetry and talk about a way to take the joy out of it is to be evaluated. I guess they probably didn't pick poems that were super easy to understand, because that's not really the point of it. I wonder if a lot of it comes from these experiences we all had in junior high and high school English, reading poetry. I don't think it has to be like that.
Dr. Lidia Schapira: Good. No, I don't think it has to be like that. So let's talk about your beautiful poem here. What inspired the poem? It sounds like this was an encounter with a patient that really moved you and made you question many of our practices. Tell us a little bit about this person.
Dr. David Harris: Yes. This was a person who came to our hospital with a mass on his left heel, a fungating, bleeding mass. And the sarcoma team we have here, the surgeons and the medical oncologists, felt quite confident that it was a sarcoma without even biopsying it. Confident enough that they recommended a resection even before biopsy as a curative approach. And when they shared this with the patient, the patient refused the curative surgery. And the reason that he refused is he said that if we amputated part of his body, his soul would be lost through the amputation. And in medicine, we're not used to talking about souls, or at least my team is not, and we didn't really know what to do with this. This person had a longstanding history of severe schizophrenia, and when our psychiatrist came to evaluate him, they did not think that he had capacity to make decisions. And there were no people in his life that could be a surrogate for him. So he was a patient without a surrogate. And there were so many complex issues that this brought up for us. We were in the uncomfortable position of having to make a choice for a patient, and that's not something that we're used to doing in medicine, and I think that's a very good thing. There was this discomfort of making this life or death choice for this patient. How could we do that? How could we take that responsibility?
Dr. Lidia Schapira: So let's think about this a little bit from at least your perspective as a palliative care doctor who was brought in, I assume that was your role here, right?
Dr. David Harris: Yes.
Dr. Lidia Schapira: Perhaps as an ethicist or palliative care consultant to bring it all together. So maybe the way to think about it, or perhaps if I imagine how you thought about it, was the suffering that this imposed for this person who was right in front of you. You couldn't change him. You couldn't change his mental health. You couldn't change his decision. But somehow you approached him as somebody, perhaps, who is a sufferer, who has a big problem. Tell us a little bit about how you and your team aligned yourself with what the patient wanted or the patient expressed, even though you understood that, from medical legal perspectives, he lacked capacity to decide.
Dr. David Harris: We spent a lot of time with him. We spent a lot of time talking as a group. Our bioethics team, in addition to me and many of our palliative docs were all really involved. One of the things that really played into our thought process was that he did not have a temporary lack of capacity. And this desire not to have the amputation was not temporary. This was permanent. And there wouldn't be a day that he woke up and said, “Thank goodness, you didn't listen to me and you did that amputation.” And the other thing we thought a lot about is how much suffering do we give somebody if they feel they've lost their soul, and how do we quantify that?
Dr. Lidia Schapira: And if we're talking about souls, I can't help but ask you about all of the religious implications here. In your poem, you talk about washing feet. You give the poem a title that evokes a part of a religious liturgy. Can you tell us a little bit about how that theme came into the construction of your poem?
Dr. David Harris: I think that this will sound a little silly, but as I was sitting here with this story and thinking about it, which is a part of my process in writing, I spent a lot of time thinking about feet because that's where his cancer was. And after we chose to not do the surgery and before he passed away, we spent a lot of time wrapping and unwrapping and washing his feet. And what we chose instead of doing the surgery was- that was what we moved towards. What we chose to do was do wound care and wash his feet. One of the things I think a lot about is the mundane actions that we do as physicians, as medical teams, and how significant and profound they can sometimes be. I think one example that many people have talked about and discussed is the physical exam and how it's not just a way for us to listen to the heart, but it's also this ritual. And for him, when I talked to the nurses who were caring for him, the wound care and the washing of his feet became a ritual. And I saw this parallel with what I learned about the washing of the feet that is done in Catholicism. I am not Catholic myself, and it's not something that I have personal familiarity with, but I feel like there are parallels to what we do as physicians in medical care, caring for the body and what other groups do, caring for other parts of humans. And so I saw that parallel there.
Dr. Lidia Schapira: That's beautiful. Now, can you tell us a little bit about the title? I'm sure it's not something that the readers of the Journal of Clinical Oncology often encounter as a heading for an article.
Dr. David Harris: I know, I was so excited. Poets are famous for having a title that doesn't make any sense. So I think one of the things I hope readers associate when they hear that word that they may not know is the word mandate. And when we think about what we do in healthcare, how does the word mandate come into what we do? And for this case, where we determined he had a lack of capacity, where we chose whether he would have surgery or not, how does that word play into the story? And then, in addition, “Mandatum” as sort of a ceremony of washing the feet, and the significance of that as a spiritual ritual and what we did for him as a medical ritual, and the parallels there.
Dr. Lidia Schapira: David, I wonder if, wearing your educator hat as an educator of fellows, you can talk a little bit about how you bring all of this beautiful and complex philosophy of care, of seeing the whole person, of responding to suffering and reflection, or your reflection through poetry and through the arts, how you bring that to your fellows and how you help them to develop some of these greater techniques for their own enjoyment and for their own development.
Dr. David Harris: That's such a wonderful and thought provoking question and something that I've been thinking about so much this year as our new fellows are joining us. The way I bring it into the room when I'm seeing patients is one of the easiest ways to show them, because we will go see patients together, and they can begin to see how learning about the non-medical pieces of a person can change the whole medical interview and the whole interaction between a physician and a patient. And I think that's something that our fellows leave the year with, and also our oncology fellows, when they rotate with us, they've said that one of the things they leave the rotation with is this appreciation for how all parts of a patient are important in their receiving excellent care.
The second thing you were asking is, how do I help fellows in their personal journey inward. And for me, that's been a journey through poetry, and I feel like that's something I'm still trying to understand how to do, because each person has their own way in, and I don't know if writing poetry- I will say, I'm sure that not everyone's way in is going to be writing poetry, and it shouldn't have to be. And so how can I invite my fellows inward on this journey? Show them how I do it, show them how other people in my department have done it, and then also not force them because I don't think that's helpful at all.
Dr. Lidia Schapira: Yeah, and it doesn't work. This has been such an important conversation for me, and I'm sure it'll be very impactful for our listeners. So let me end by asking what you and your team learned from caring for this person.
Dr. David Harris: One of the things that I'm really proud of my team for is how much time and how carefully we approached the situation. And it was not comfortable to make choices for somebody else. And I remember we all got together on a call, and every single person, med student, resident, bioethicist, nurse, physician, they all sort of shared their own thought process about what should happen. And every single person on that call had the same opinion about what to do. And I was proud of my team for that process. This thing that none of us really wanted to do, that at least we did it very carefully.
Dr. Lidia Schapira: That's a beautiful reflection and really speaks to good leadership in the team and also the value of teamwork of feeling that you can- that you're safe and that you can express your views. And I imagine it must have been incredibly difficult. But thank you, David, for writing about it, and thank you for sending us your work.
Dr. David Harris: It was a pleasure talking to you, Lidia.
Dr. Lidia Schapira: And 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. David Harris is an Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic.
Listen to ASCO’s Journal of Clinical Oncology essay, “It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss” by Dr. Margaret Cupit-Link, who will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, MO. The essay is followed by an interview with Cupit-Link and host Dr. Lidia Schapira. Dr Cupit-Link shares her personal experience with childhood cancer and the importance of educating patients on the known and unknown consequences of their therapies so they can, when possible, participate in fertility preservation.
TRANSCRIPT
Narrator: It Mattered Later: A Patient-Turned-Doctor’s Perspective on Fertility Loss, by Margaret Cupit-Link, MD
I was 19 years old when I had to make one of the most important decisions of my life. The problem was, at 19 years, it was not important to me—yet.
With piercing clarity, I recall the very first time I heard the word sarcoma. My leg had been hurting, and I had just undergone magnetic resonance imaging. The doctor spoke of abnormal tissue. As a pre-med student, I blurted out the words, “it’s cancer, isn’t it,” and waited for him to reassure me. He did not—he could not—reassure me.
The days and weeks that followed are still a blur. There was more diagnostic imaging, a biopsy of my tibia, and placement of a subcutaneous port in my chest. When we learned that the Ewing sarcoma growing in my leg was not metastatic, my family celebrated; meanwhile, I struggled to eat, sleep, and breathe, unable to accept the reality that I was no longer a healthy college student. I was a patient with cancer.
Before my chemotherapy would begin, my mom and I had to give legal consent. Technically, I had to give consent—as if I would choose to say, “no thanks,” to the only treatment that could give me a fighting chance to keep living. With each potential side effect that was mentioned, I felt a piece of my morale slip away. Was I going to die? Maybe. Regardless, I would lose my hair, my appetite, my immune system, and my independence. Should I be lucky enough to live through it, I would be susceptible to a host of late effects from chemotherapy, one of which was infertility. Infertility, I felt, was the least of my worries; it paled in comparison with heart failure, secondary malignancies, and death.
As a 19-year-old, I did not want children. My career goals were my priority, and I had yet to be in a serious romantic relationship. Starting a family was not on my agenda. So, on the worst day of my life, when all I cared about was staying alive, I was told I could choose to undergo ovarian stimulation to harvest follicles in a somewhat experimental process that would delay the start of my chemotherapy by several weeks. Without hesitation, I said no. At the time, I did not realize I was lucky to have had time for such a conversation. My diagnosis and presentation allowed for a small delay before treatment; I would later learn that many patients do not get that luxury.
A little over a year after completing therapy and returning to college, I developed hot flashes, night sweats, and mood swings. On the basis of the levels of luteinizing hormone, follicular stimulating hormone, and anti-Mullerian hormone in my blood and an ultrasound showing ovaries without follicles, I was diagnosed with premature ovarian insufficiency and told it was unlikely my ovaries would recover. I was not heartbroken or even disappointed; I was still so thankful to be alive. I did worry, however, what this would mean for my boyfriend, the person I wanted to marry. To this day I am amazed that he, as a 20-year-old man, was completely accepting of me and my infertility and that never changed, even after he became my husband.
Near the end of my pediatrics residency, I came to understand the term baby fever. My coresidents were getting pregnant, my sister was having a baby, and my husband and I were settled down in our very first home. I visited a reproductive endocrinologist. It had been 9 years since I had completed chemotherapy, and I learned my ovaries were not functioning at all. I was told to plan on adoption—of an embryo or a baby—as I was not a good candidate for fertility treatments.
At first, I did not allow myself to react to this news. How could I mourn something like fertility when I was a 10-year survivor of childhood cancer, had exceeded my career goals, and was married to a wonderful person? Most of the time, and on the outside, I was unphased. I spoke about my desire to adopt with enthusiasm. I was honest about my ovarian failure and made jokes about being in menopause. I celebrated my friends’ pregnancies and came to love my nephew as if he were my own.
I considered the many ways in which I could become a parent, each with its own barriers. Because I had not undergone oocyte or embryo cryopreservation before chemotherapy, having a genetic child was simply not an option for me. I could adopt a baby in need through the foster care system, which would not require monetary payment.
However, I knew then and now that the goal of the foster care system is to eventually reunite children with their families; although I was strong, I could not risk falling in love with a child and losing them to reunification. Private adoption was another option. While it felt unethical to pay a large sum of money in exchange for someone else’s baby,
I would one day have the luxury of being able afford the price tag (at least $20K US dollars [USD] to $100K USD in the United States, depending on the state and organization). Then, there were the options offered by modern medicine—embryo adoption or in vitro fertilization using a donated oocyte and my husband’s sperm. In these cases, even if my body was unable to sustain an embryo, I could use a gestational carrier (surrogate mother). While I knew that having a baby the old-fashioned way was not without its own costs and risks, it was undoubtedly easier than any of my options.
I did not admit—until now—that it hurt to know I would never experience the miracle of pregnancy. It hurt to know that I would never have a child that was half of me and half of my husband. It hurt to know that, even now, my cancer had taken something from me that I could never get back.
My experience with infertility has made me thoughtful about how infertility may affect my patients. As a pediatric oncologist, I am painfully aware that many of my patients who lose their fertility from the drugs I prescribe them will travel the same road of grief I have traveled. I am even more aware, however, that most of my teenage patients are not ready to make decisions about fertility—even when they are forced to do so. In my desire to counsel my patients on this topic, I have tried to imagine a scenario in which the advice of a doctor might have prompted me to prioritize fertility preservation. Perhaps I should have been told that delaying cancer-directed therapy by several weeks would be unlikely to affect my disease outcome. Perhaps I would have benefitted from knowing the complexities of the foster care and private adoption systems. Perhaps fertility preservation should not have been a choice at all, but a standard of care, as it is now.1 What I think I needed to hear, above all, was that I did not understand the gravity of my decision. I did not and could not understand the desire to become a parent that would one day overcome me. If I could go back in time and speak to my 19-year-old self, I would say, “it might not matter to you now, but it will matter to you later.”
Just days before I originally planned to submit this article, after 12 years of menopause, I experienced the unexpected. Seven positive urine pregnancy tests later, my doctor sent me for an urgent ultrasound, and it was confirmed: I was 6 weeks pregnant. At first, I felt I was no longer worthy of writing this article: how could I speak up about infertility from cancer therapy after having miraculously conceived a child? However, I eventually realized my pregnancy was yet another reason I should write on this topic.
Only now, as I hold my daughter in my arms, do I fully understand how much my fertility would come to matter to me.
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, Professor of Medicine at Stanford University. Today we are joined by Dr. Maggie Cupit-Link, a third year Pediatric Hematology Oncology Fellow at St. Jude Children's Research Hospital, Maggie will graduate from fellowship and receive her Master's in Clinical Investigations in June. She will then begin a position as a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri.
In this episode, we'll be discussing her Art of Oncology article, “It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss.”
Our guest disclosures will be linked in the transcript.
Maggie, welcome to our podcast and thank you for joining us.
Dr. Maggie Cupit-Link: Thank you so much for having me. It's an honor to be here.
Dr. Lidia Schapira: It's lovely to have you. I'd love to start just by asking a little bit about your motivation to write and share this piece. It's such an important piece and you really have shown us what was deep in your heart. And then there's this sort of unexpected resolution. Tell us a little bit about what led you to finally finish the piece and share it with the world.
Dr. Maggie Cupit-Link: So I've been writing for a lot of my life as a way to express myself and cope with emotions. And I had cancer when I was 19 and 20, Ewing sarcoma. And during my treatment, I found writing was very therapeutic for me and very healing. So that's when I got really into writing about my personal experience and actually published a book after I finished treatment. But then writing more recently, I was writing about my infertility, which I had from chemotherapy. And I would write about it and journal about it here and there because it was really challenging. And for a long time, I suppressed a lot of those emotions because I didn't think they were helpful. And I felt, I guess, ashamed and embarrassed to feel so upset about infertility as a cancer survivor who has so much in life. So many parts of my life are so normal and full and even more full than the average person so I felt like I wasn't really allowed to grieve my fertility.
And I started to write a piece because I'm part of a working group, a group of physicians working together to learn more about fertility and pediatric cancer survivors, particularly those who have received immunotherapy, because there are a lot of new agents that we don't know as much about when it comes to fertility. And as I was working with this group, I started writing this piece on my own. And then I was about to submit the piece just to the group to show them my personal reflection when I took a pregnancy test and it was positive. So then I took seven–
Dr. Lidia Schapira: -other ones
Dr. Maggie Cupit-Link: I was not, I didn't believe any of them. Then finally I called my sister, and she told me that I was not acting like a doctor, that it was very obvious I was pregnant. And so then I went to see my doctor, but I found out I was six weeks pregnant right at the time of finishing this piece. And at first I thought, “Well, I can't write this piece anymore.” But the more I thought about it, the more I thought, “Well, either way, it shows that us oncologists really need to learn more about fertility.” And I'm very blessed and lucky to have this ending in my story, but it shows that there's a lot of missing information out there.
Dr. Lidia Schapira: That was an amazing answer, and I have about five different topics now that I want to discuss with you. But let's start with the end. And that is your baby. How old is your baby now?
Dr. Maggie Cupit-Link: So her name is Lila Jude. Two days from now, she'll be seven months on June 12. Her name comes from the family name Carlisle. That's where we got Lila. And then Jude comes from the Patron Saint of Hopeless Causes, St. Jude, but also the hospital that treated me and where I've trained, St. Jude Children's Hospital. So that name was very significant for us.
Dr. Lidia Schapira: So I'm getting goosebumps and teary just to hear you tell the story. Let's start a little bit with some of the themes that you touched on. The first is when you've said that you've always used writing as a way of processing emotionally complex situations as a patient, now, perhaps as an oncologist. Tell us a little bit about the book that you wrote about your experience.
Dr. Maggie Cupit-Link: Sure. When I was in treatment, I wrote a lot of entries in my journal, and it was just a way for me to process things. I think sometimes, for me, I don't know exactly what I feel until I write it down and make myself reflect on it, because I'm a busy body. I'm constantly going and doing. And so during chemo, I couldn't really do it. I had a lot of time to sit, and so I needed to write. And my grandfather is a retired Professor of Christian Philosophy. And during my year of cancer therapy, he and I started writing letters to each other because I had a lot of questions, understandably, about God. So the title of the book is actually “Why God?: Suffering Through Cancer into Faith.” And it's a lot about doubt and my anger towards God and what I would see in the hospital around me, the children who were dying from cancer, who even had it worse than me. It felt very impactful to my faith.
But ultimately, through my conversations with my grandfather, he taught me a lot about another way to understand God, another way to understand faith in spite of horrible suffering, which I think is a thing for a lot of people because a lot of people in this world suffer. And so eventually we published a book. During medical school we published it, and it was a compilation of my journal entries intersected with his letters. And so part of it was really personal and raw and journal entry, and part of it was Christian philosophy. So it was an interesting combination.
Dr. Lidia Schapira: Well, Maggie, I will definitely now have to get your book and it'll be on my list for summer reading. So you touch on some of the fundamental, sort of ethical, moral principles of our profession, which is suffering and how we deal with suffering. And you've had a lot of time to reflect and philosophize and also experience this, as well as loss. Can you tell us a little bit about how your experience of loss has evolved over the decade of survivorship?
Dr. Maggie Cupit-Link: I think initially, loss, for me, meant a lot of different things than it does now. I felt like I lost a lot when I was sick because I had to give up a year of college. I lost my tibia and knee bones. I have a prosthetic knee and tibia now, internal, and they function very well, but I don't have a real leg. I lost, of course, in chemo, you lose your hair. I lost a lot of tooth enamel. I lost a lot of friends because I was a teenager, and teenagers don't handle illness very well. People were afraid to talk to me. And then, of course, I lost my ovarian function. For a while, I think I focused on that a little bit more than what I had gained. But over time, it became very obvious to me that despite all the loss that I had during my year of cancer therapy, I gained a lot more. I gained a lot of perspective and a lot of emotional depth. And then ultimately, what directed me to my career decision. I knew I was wanting to be a doctor before I had cancer, but then after that year, I knew exactly what kind I would be if I got through the year.
But I think one thing I've had to learn apart from that is being able to feel loss, even when you have so much. Because I have a lot of gratitude and I have so many good things in my life now with my health and my husband and now my baby and this wonderful career. Even though I have all those wonderful things, I'm still allowed to feel loss sometimes because I will be susceptible to late effects and there will be things in my life that are not quite normal because of going through cancer therapy. And then, of course, the other layer of loss is the people that we lose along the way. If you see behind me in my office, there's a picture of a little boy on the shelf up there. He was my good friend when I was sick. His name is Odie, and he died from hepatocellular carcinoma. When we were sick, he was a good bit younger than me. He was like a little brother to me during therapy.
The loss of his life definitely propelled me forward to try to change more for other kids. And I think one thing I struggle with now as an oncologist and I'm still learning to do, is process the loss of my patients as it happens. I think I'm lucky that when I lose a patient, when a patient loses their life, I still see the beauty in what I was able to provide for them and their family. That's still a gift. I feel that it's important for me to grieve the loss of their lives, and I'm working on finding, like, the best way to do that for me over time.
Dr. Lidia Schapira: You will find a lot of reflections on this topic in the pages of Art of Oncology over the last 20 plus years. I think that is a very, very common theme. I'm really impressed with how well you just understand the importance of this, to stay emotionally healthy and resilient.
My next question addresses that a little bit, and it has to do with processing the early experience of being a cancer survivor. As a young medical student and as a young physician, what was that like for you?
Dr. Maggie Cupit-Link: I think early on, I had a lot of guilt when it came to being a survivor. This concept of survivor guilt, I think you can read about it as well, and I'm sure there are some articles in the Art of Oncology about it. But the idea that, like, ‘why me?’ and when I encounter patients who go through similar diseases or experiences that won't have good outcomes, ‘why? Why me? Why did I get a good outcome and they didn't?’ And so early on, I struggled with that more. I felt guilty about it. I think over time, I recognized that the guilt– I mean, I always knew it was illogical. That doesn't mean we don't feel it. I think over time, I've recognized the guilt as unproductive. And so I tried to empathize with myself about it and acknowledge that I feel guilty. But then instead, what can I do with this feeling that's helpful? So where can I put this? What can I do to make things better for somebody with it? And I think that I've been able to do that better as time has gone along.
I also think that early on in my survivorship, I thought that I had even more ability to understand patients' perspectives than I did. And I learned quickly that everybody's experience, even another 19-year-old with Ewing sarcoma who had to leave college, is so different. And so I've been humbled along the way in learning that just because I understand part of their experience does not mean I understand their experience all the way, and that I should never assume that I do. I should always listen and wait to try to understand more about what's different about their perspective.
Dr. Lidia Schapira: I'm surprised a little and maybe delighted to hear the wisdom in your words. You are so young and yet you know so much. Did you have any mentors during medical school and residency who helped you process this? And then playing it forward, how do you imagine now that you're going to be an attending, mentoring others who may be the young Maggie and come under your tutelage?
Dr. Maggie Cupit-Link: I've had a lot of mentors, for sure, in life. I've been in therapy pretty much my whole life. I'm really lucky that my grandmother is a PhD psychologist and she's a clinical counselor. And so from the time I was a child, if there was ever a problem, I would go see a therapist. There was no exception to that, especially when I became sick. And then in the aftermath of that, I've frequently been seeing a therapist, and that really helps me gain wisdom. I think that's been one big source of mentorship.
But there have been other providers that have been big sources of mentorship for me for this. One was actually a good friend of mine. Her name is Beth. She's a physician, a clinical research physician scientist at St. Jude, and she was a fellow when I was a patient. And we became friends back then. And then when I went back to college afterwards and then medical school, I shadowed her a few times. I did an away rotation with her once at St. Jude while I was in medical school, and during that time, I remember meeting a boy with Ewing sarcoma. And I remember walking into the room thinking, “Oh, this is great. I totally get this. I'm going to be so helpful to his mom.” And I quickly learned that he had metastatic disease, which meant, really, we had a different disease entirely. And that when I told his mother about me, I almost felt like it made things worse because she knew that my outcome was different than her son's was going to be. And I remember Beth afterwards reflecting with me, saying like, “Yeah, it is true. Everyone will have a different story, even if you understand a lot.” I think she told me, “You don't always have to tell people your experience in order to use your experience.” And so that was one of the ways that I learned. I don't have to share everything upfront in order to still have so much empathy and compassion.
And then I've also had the honor to work with many doctors who have just role modeled, listening really well and really good bedside manner and compassion. The physician who treated me, Dr. Pappo, still works at St. Jude, and so I've gotten to work with him a little as well, and he role modeled wonderful bedside manner. And then my primary research mentor as well, Dr. Federico has taught me a lot. And just watching her with our shared patients and the way she tells family news and the way she explains things has been really helpful to me, too. So I would say a lot of mentors and a lot of therapy.
Dr. Lidia Schapira: I like that combination. Clearly, it's been very productive and useful for you. Tell us a little bit about choosing to work in this field after your personal experience. I mean, it sounds like you were headed to St. Jude's to a laboratory to do research even before the diagnosis, but one could easily imagine that you would have chosen to become a dermatologist after this, or somebody who was not totally immersed in this culture of cancer and also a lot of grief and suffering, as we've just said before. Tell us a little bit about your research passion and how these two themes in your life, your personal experience of cancer and survivorship and your research, have meshed.
Dr. Maggie Cupit-Link: Well, I think I knew that I was going to do this career in some capacity when I was watching the kids around me during my treatment. And I think this is one of the reasons why it was so important for me to be treated at a pediatric institution. I know that the AYA population is sometimes treated with adults and sometimes children, and I would advocate that being treated with children is helpful because children are miraculous, resilient creatures. And I remember deciding that I was going to have to fix my attitude during chemo because I was very depressed and very angry and deciding that maybe it would help me if I could just play with the kids in the waiting room and try to distract them and make them have a better day. And so I decided I would try to do that for myself, but ultimately they distracted me and made me have a better day. And so the more I was around the kids, the more I knew that they just hold so much optimism and innocence and light that I feel that we lose as adults. And I wanted to be around it. So in a way it was selfish that I would choose this career because I just wanted to be with them, but also knew that if I was going to go through all this nonsense, I better use it. That was very motivating for me.
And I think it has been a gift from my experience and maybe my therapy and who knows what else that I'm able to take the bad and the grief that I experience personally and use it to feel differently about the grief that I feel as a doctor. I think I feel differently about loss than my colleagues. It's still hard when I see patients suffer, when patients lose their lives, it's still hard. But I think it's hard in a different way than it is for some of my colleagues. And for some reason, I think I feel more comfortable in that space. I think I feel comfortable around that.
Dr. Lidia Schapira: Tell me a little bit more by what you mean by saying that it is hard, it has to be hard, but it's hard in a different way because of your lived experience. Tell me a little bit more.
Dr. Maggie Cupit-Link: I think I'm not uncomfortable around suffering and death. I think I feel very comfortable around children who are suffering and children who are dying, doesn't scare me and doesn't make me feel like I need to turn away, because I feel it's familiar in a sense. And I think I also, having been the patient who received so much comfort and support and love from providers, should I have died, I still would have valued all of that support so much that allows me to value the support that I'm giving, even in the face of death.
Dr. Lidia Schapira : Maggie, you're amazing. Tell us a little bit about your research and your plans now that you're going to be finishing your formal training? Where will we find Maggie in a few years? What will you be doing? What will we be reading?
Dr. Maggie Cupit-Link: Well, I have really enjoyed doing clinical research. Back in college, after I finished therapy and went back to school, I did join a couple different St. Jude labs and did a variety of different things. But I was not a natural in bench research. I broke a lot of things. I'm very clumsy. It was not my area. I was not good at it. And that's okay. I've decided to come to terms with that. I love science itself and it's been really wonderful to get this Master's in Clinical Investigations throughout fellowship because I could directly apply a lot of those skills to my research in clinical research. And so I'm really passionate about writing and helping with trials, clinical trials, but specifically would like to help with trials that focus on acute and late effects of toxicities. One of my major research projects has been creating a prospective study to evaluate the early late effects in high risk neuroblastoma survivors. And I chose that population because they receive all the therapies that you can imagine, the kitchen sink, and some novel immunotherapies that we don't really understand fully yet in mechanism of action, and so things like that, as well as evaluating acute toxicities and interventions for those. I distinctly remember every inpatient chemo that I experienced turning to my mom and saying, “There has to be a better way,” because my burden of side effects was really high. And I just remember saying, “There has to be a better way.” And my mom would say, “Yes, there has to be. You can figure that out one day.” So I do, I hope I can make some small changes in the way we give conventional therapy and the way we handle side effects as well as prevention of late effects.
I am currently collaborating with Children's Oncology Group on one of their projects in the late effects of neuroblastoma, and I hope to continue collaborating with that group as well as my career advances. I'll be an attending physician at Cardinal Glennon Children's Hospital, which is a part of St. Louis University. And I have family here in St. Louis. My husband is a dentist here with his dad. They have a practice together, so it was really important for us to be here. And this hospital is a charity hospital as well, which I really think is a wonderful thing. And that makes me feel a little bit tied to St. Jude, since it's a charity hospital as well. And so I hope to be able to continue some of the clinical projects and some collaborations with the COG as I take care of patients. And I do hope to continue writing other stuff as well.
Dr. Lidia Schapira: Maggie, I have to ask you one last question, and that is that in your piece you say you were 19 and fertility didn't matter to you then, and you couldn't have understood then or couldn't make space for the later. Now that you are where you are and you're dealing with young adults who may be your patients in similar situations, tell me a little bit about how you think about involving the parents perhaps in this conversation or sort of making space to attend to some of these very thorny issues that may have so many repercussions on future health.
Dr. Maggie Cupit-Link: I think it depends on the patient of course. Because, as you know, some patients can't have a conversation about fertility based on medical acuity. But when a patient has the luxury of time, I think that that's just not a discussion I rush through. And I agree with you that using the parents perspective would be incredibly helpful. I think, I've had a few older patients that I discuss this with, and they're all different because I even had a 17-year-old patient who told me she wanted to be a mom for sure. And so she was different than me and that she already knew that was important to her. But when people think it's not important, I just encourage them to think about it more and talk to their parents about it and to remember that who they are today is not who they were 10 years ago, and who they're going to be 10 years ago is not who they were today. And that this is something you can't time travel with. This is your chance to make a decision. And really, the fertility preservation methods, generally, they're pretty safe and not traumatizing. And so it's sort of like, why not just go ahead and do it? Especially if the institution you're a part of is offering it. And I think there are a lot of ways to get funding for that, too.
Dr. Lidia Schapira: Well, you are definitely a champion.
Dr. Maggie Cupit-Link: Thank you.
Dr. Lidia Schapira : I know that our readers and our listeners are going to follow your career, and I thank you so much for your thoughtful essay and for agreeing to this conversation. It's been a real pleasure.
Dr. Maggie Cupit-Link: Well, thank you. I have one more thing to tell you before we end.
Dr. Lidia Schapira: Yes, tell me.
Dr. Maggie Cupit-Link: So after I had the baby, my doctor and I decided we would wait to get on birth control until we saw if I was going to go back into menopause or not. We waited, and then I got pregnant again. And so I am 16 weeks pregnant with a baby boy this time. And so I'll have my second child 12 months after the first.
Dr. Lidia Schapira: Oh, my goodness.
Dr. Maggie Cupit-Link: It is a blessing. But after that, I might have to consider birth control to space some- plan, space some people out a little bit. But we're very excited.
Dr. Lidia Schapira: The gift of your survivorship is now in your 30s. You need to have that conversation about family planning that most people and couples have earlier on. So congratulations. Congratulations.
Dr. Maggie Cupit-Link: Thank you so much.
Dr. Lidia Schapira: Beautiful way to end. And to 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. Maggie Cupit-Link will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri.
Additional Reading:Why, God?: Suffering Through Cancer into Faith, by Margaret Carlisle Cupit, et al
Listen to ASCO’s Journal of Clinical Oncology essay, “Three Days was Enough” by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. The essay is followed by an interview with Thomas and host Dr. Lidia Schapira. Having medically adjacent experience, Thomas shares her personal story of helping her family come to terms with hospice care for her father.
TRANSCRIPT
Narrator: Three Days Was Enough, by Teresa Hagan Thomas, PhD, BA, RN
My dad agreed to receive hospice on a technicality. It happened after weeks of trying to get him home oxygen. My brother drove him to the oncologist’s office, and I helped him get into the wheelchair. He did not complain, but just asked me to hold his coffee mug, smiling because I snuck him a fresh donut. Three months before, dad was well-maintained on treatment for a neuroendocrine tumor. It was not until two separate, non–cancer-related hospital admissions kept him off treatment that the cancer saw a chance to hijack his body, take over his organs, and lead to a precipitous decline.
As we waited for the oncologist, I told dad not to downplay his shortness of breath. But he wanted to look good enough to get chemotherapy the following week, the only way he saw to resolve his lymphedema and keep the cancer at bay. He failed the oxygen saturation test by one point, and having not qualified for home oxygen, we drove home disappointed without further recommendations or support. The sense of defeat was maddening. We were batting down an escalating onslaught of health issues at home only to be turned away from the professional caregivers when we most needed their advocacy. I was enraged that all the work arranging the appointment led to nothing and disappointed for my dad as he sat consumed in his pain and shortness of breath. His oncology team was supportive when his health was stable but did not have the skills or systems to proactively help us manage the dying process. I channeled my disillusionment with the health care system by calling in favors for a palliative care consult, both aware of my privilege but also stopping at nothing to give relief to my dad.
A few days later, my dad and mom were willing to accept hospice care for the singular purpose of getting oxygen. I was sitting next to my dad in his home office, amix of posters from his travels abroad and family wedding photos surrounding us. When he asked for my thoughts about hospice, I carefully laid out what I saw as the benefits—namely, he would immediately qualify for home oxygen and get a level of care beyond what his oncologist could offer.
But as I tried to give him all the words I knew from my professional life, I just saw the man who raised me staring back at me hoping for a way out of the painful, weak state he was in. He was not giving up on treatment or controlling the cancer. I was not going to change that. I wanted that, too. Now his eyes were sunken, all the fat gone from his face, and his entire body working to breathe. His belly was large, the tumor taking over, and his legs swollen with lymphedema. I felt the boniness of his shoulders and back. There was no coming back from this. I was in disbelief that he was dying so quickly, selfishly wanting him to stay but also knowing he deserved a pain free death.
He agreed to enroll in hospice, with the plan that he would unenroll and try to get more treatment. I wanted to be right there with him, treating this as a temporary detour and not the end. I looked him directly in the eyes, searching to see any recognition that he would never get treatment again and that this was it. Not seeing anything, I tried to open the door to discussing death, reminding him how tenaciously he had fought to keep this cancer controlled and acknowledging the need to focus on his quality of life. I desperately wanted to have an open discussion about dying, but his stoic Irish mentality kept us from having that heart-to-heart.
Initially, I was disappointed that my attempt had failed, but now I recognize that achieving a good death did not depend on verbalizing that he was dying. He was living and dying, hoping and accepting, trusting and doing his own thing. Our plan was logical and irrational. I remember thinking people in these situations needed to face reality. Here with my father, being so direct would be counterproductive. He very likely recognized what was likely to unfold, and hospice allowed him the unstated permission to let go. I called his oncologist, and together dad and I asked to enroll in hospice.
The oncologist responded, “We are so glad you finally made this decision.”
By that night, the hospice nurse was sitting at my parent’s kitchen table preparing us. Dad was sitting in the front room, finally relaxing in the plush leather lift chair we impulsively bought for him, with the oxygen machine humming at this side. We grilled the hospice nurse with questions. She kept saying how fast patients with cancer seem to go downhill. She told us without telling us. She gave us breadcrumbs, just enough information to get us through each step of the dying process, giving morphine, getting a hospital bed, giving Ativan, and finally seeing him pass.
Three days after enrolling in hospice, he died at home withmany of our family at his side. Just like the hospice nurse said he would, he died on his own terms: after he had said goodbye to all his siblings, after the infant he and my mom were fostering was placed with his adoptive parents, and after all five of his children were at home with him. He died with dignity, mentally capable until the last hours, and surrounded by love. His exact terms.
I am not sure what conversations were had between my dad, my mom, and his oncology team in the weeks before he died. I do not know if they openly discussed the need for palliative care or hospice. Dad’s providers might have, and my parents willfully or naively missed the clues. I can imagine for the oncology team, discussing hospice meant admitting that the treatment plan had not worked as intended and that they could not meet my dad’s needs. I know for my parents, discussing hospice would give air to the idea of death and therefore was not only avoided but actively discounted. As a researcher focused on palliative care, these dynamics were not new to me. I recognize how the stigma surrounding hospice and palliative care prevents earlier provision of quality end-of-life care. That knowledge did not prepare me when it was my dad dying. Awakening to the reality of dad dying was incredibly difficult when every hour we were managing his frenzy of health issues.
Three days is used as an indicator of poor end-of-life care since people are eligible for hospice when they have a 6-month life expectancy.1 My dad did not openly discuss hospice until days before he died, but the number of days did not matter for my dad. What he was now able to do—because of hospice—during those days mattered more. During his last 3 days, dad meticulously rewrote his will, had it notarized by a hospice social worker, visited with his siblings, and made amends for long-past transgressions, enjoyed his favorite foods—fresh Boston cream donuts and black French press coffee—and spent quality one-on-one time with each of his kids and most of his grandkids. Although death was never directly discussed, neither was the idea of unenrolling in hospice. Hospice was what was allowing him to maximize the mental and physical capacity he had left.
Those 3 days took my family from being stressed to our limit trying to manage dad’s disintegrating health to feeling like we were being led by competent, caring hospice nurses who picked up our phone calls and responded within minutes. Now a year since he passed, I have a newfound appreciation for the complexity of discussing death with families and an even greater desire to advocate for improved end-of-life care for patients with serious illness. Despite his dramatic decline in health, my dad had a good death thanks to his hospice team. Three days was all it took.
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, Professor of Medicine at Stanford University. Today we're joined by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. In this episode, we will be discussing her Art of Oncology article “Three Days Was Enough.”
Our guest’s disclosures will be linked in the transcript.
Teresa, welcome to our podcast and thank you for joining us.
Dr. Teresa Thomas: Thank you. It's great to be here.
Dr. Lidia Schapira: It's great to have you. So let's talk about your beautiful piece, which is very personal. Thank you so much for writing and sending this and sharing this. In your piece, you say that you waited about a year before you thought about writing. Can you tell us a little bit about why you waited and why perhaps for you it was important to take some time to process the experience and then decide to share it?
Dr. Teresa Thomas: Absolutely. Well, I think it would be false to say that I waited a year to write it. I think I was writing it for a year. And like a lot of researchers, I really process things through writing, trying to make sense of the passing of my father, of course, but also what this means for me professionally. It's very ironic that everything that I study in my research, things that we encounter clinically, unfolded right there extremely poignantly with my father. And like anyone, I'm just trying to make sense of it and trying to find lessons learned where we as nurses, healthcare providers, researchers, can push things forward a little bit, which I think is what I was trying to do with the piece because it did raise a lot of questions for me and is making me rethink my research questions and how I conduct myself and what the important areas of our field really are.
Dr. Lidia Schapira: So let's talk a little bit and go deeper into that. First, I wanted to talk a little bit about your vulnerability, personal vulnerability. It's your father we're talking about, and you clearly adored this man who is your father. Can you talk a little bit about the emotional aspect of dealing with the family's acceptance finally, or the family's readiness to call hospice in?
Dr. Teresa Thomas: Absolutely. I mean, it's all of the emotions. When I think about it, it was this very awkward place of being one of the few medically adjacent people. I'm not a practicing clinician. I am a researcher who has a nurse training. So it was this ‘I know enough and the family's relying on me and I'm going to the appointments.’ And being that in between, between the oncology team, my father, my mother, my siblings, people asking questions. And at the same time, I know this story. So it was personal and distant. I knew what was happening, that he was dying. I didn't want to know that he was dying. And it was just a crazy time too. Every day there were a thousand things going on. I didn't put this in the piece, but I was also extremely pregnant at the time, so had hormones going. My mom was getting sick herself with cancer, ironically, right as my father was dying. It was just absolutely insane. And now we're trying to unpack all of that. But to be that person that people are relying on to understand what's going on, to shepherd them, and also not really wanting to know, it was a hard juxtaposition. I knew what should be happening, right? I knew that we should be having these discussions about palliative care. I knew that he was eligible for hospice, I knew he should be on hospice, but I wasn't ready. And professionally, I wear that hat of a nurse and a researcher very reluctantly. When I'm dealing with my health care, and especially someone else's healthcare, I do not disclose, I do not try to interfere. And for Dad, I had to step up and push and interfere a little bit, which is extremely awkward and not comfortable.
Dr. Lidia Schapira: Let's talk a little bit about readiness, because readiness means so many things, but it's such an important theme here, and it's often such an important theme when we look at the literature about end of life communication. Can you talk a little bit about how this experience has informed the way you think about readiness, readiness to accept that it is indeed time for that call to hospice?
Dr. Teresa Thomas: Absolutely. So I think as a researcher and as a clinician, you want that discussion, you want the documentation, you want all the ducks in a row. You need to understand, do they get it? Is their head in that space where they're making plans? Can you think about what you want your death to look like? We need it said, we need it laid out so that we can check that box. And obviously, there's a lot more than checking boxes when this is done correctly and in a patient centered way. We didn't have time for that to happen, and yet everything still laid out. Now, I write in the piece, my dad was just very stoic and had a history of not talking about emotions. And I don't think it's all too different than his generation. And maybe men in general or there are patients that are just like that. There were never those deep conversations with the oncology team. There basically wasn't that conversation even with me.
So beyond that, I mean, beyond just saying we had that conversation, what the piece is trying to say, or what I was trying to say was that it was the things that he did that were more important, he literally rewrote his will in his last days. In his few moments of clarity, he was sitting there. He was a wills and estates attorney. So, I mean, he was fully equipped to do this, but this is what he was doing. He knew that he was dying. He never voiced it. He never made a specific plan. But we had a care team in his oncology team, and absolutely in his hospice team, who just shepherded us and allowed him to do everything that he would have done even if he had had six months in hospice. And that's what was more important. He got what he wanted, and he was allowed to do what he wanted. And that's now how I'm thinking about end of life care and where our field in research and in executing that needs to go.
Dr. Lidia Schapira: I think that's incredibly profound. I think one of the lines that I enjoyed the most in reading and rereading your essay is when you just describe what actually happened and how he relaxed into the chair. He relaxed when he had oxygen. I mean, it wasn't so much what he said, but what you saw there was even the physical signs of somebody who says, “Well, you know, something else is happening here.” There was a transition that you actually appreciated there and captured. Am I right? And did I read that right?
Dr. Teresa Thomas: Absolutely. That was the turning point. I mean, we are a big family. We never make impulse purchases. But my sister and I, we just drove out. We didn't care about the cost. I think my mom gave us her credit card. She never gives us a credit card. And we just said, “We don't care. This is our dad. We're buying this.” And to see him after this, just extremely precipitous decline where every breath in and out and that searching for air and all of those signs, even to take away a little bit of that, absolutely felt so good. And he wasn't totally pain free, but he had oxygen. I mean, the most basic thing you need. So, yes, that was a very good feeling.
Dr. Lidia Schapira: So the labor of breathing can be overwhelming and in a way distressing. Whether we call that painful or not is maybe just a matter of the language that we use.
There's another theme that emerged in your writing, and again, I wanted to hear your reaction to this, and that is failure. You use the term in terms of, in so many different ways, perhaps the failure of the oncology team to develop or deliver or propose a treatment that was really good. They were done. So they- in some ways, there was a sense of failure. It was a bit of a failure of capturing the right moment to make the hospice referral. It wasn't quite what the books say we should be doing. There's a lot of that in the essay. Can you talk a little bit about how you understand failure and how that concept may in some way interfere with our ability to act or appreciate things?
Dr. Teresa Thomas: There were no specific failures as more of a secondary caregiver at the end who stepped in to assist my mom. There were likely things going on that were under-recognized, unappreciated, or because nothing was said directly that there could have been soft leeways into. “Let's talk about hospice.” That, I think, my parents did not want to hear, and that door was closed. That's where additional layers of support in how do we talk about this as a family? How do we introduce, well, hospice isn't end of life care necessarily, but there are additional supports that hospice allows that your typical oncology practice can't provide.
I remember one conversation when my mom called me up and she was telling me that she had just met with Dad's team, and she was saying, the oncologist said, this is the last treatment, that after this, there's nothing left. She was going on and on, and I wanted to basically rip the band aid off for her. And I said, “Mom, they're telling you that it's time for hospice.” “No, absolutely not, Teresa. Hospice was not brought up. Don't bring up that word to your father. All they were saying was, this was the last treatment.” Now we can talk about that with my mom and say, “Do you see what they may have been laying the groundwork for?” And she says, “Yes, now I understand. But at that time and place, that soft entry, that door was not being opened by them.” And I don't think that's untypical. I think that we did the best that we could with the situation that Dad had.
Dr. Lidia Schapira: So, Teresa, I'm struck by the incredibly generous and wise framing that you use to talk about this. You could have said, “Oh, my goodness. It was only three days,” and instead you chose to say, “Three days were enough.” So I wonder how you did this, how you actually looked at it from that perspective, because so much of what happens to us is defined by the lens through which we see it and the words we use to construct the narrative. So tell me how you got to, “Oh, my God. They weren't ready, and there was so much failure,” to, “Hey, three days was enough.”
Dr. Teresa Thomas: The three days were important for me because one year ahead of my dad getting sick, I was writing a paper with one of my mentors, Yael Schenker, and one of the wonderful med students that we work with and we used it as an indicator of poor quality end of life care. Did the patient enroll in hospice within the past three days? And we had these wonderful discussions with Yael and Bob Arnold and Doug White and everyone here at the University of Pittsburgh involved in palliative care about what does that mean? And is this just a random quality indicator with no real world value? And I respect all of their opinions because they do see this clinically, whereas as a researcher, “Oh, this is easy for me to analyze and I have a citation that says this is a quality indicator, so let's use it.” And I thought, “Oh, isn't the world ironic? This is exactly what happened with Dad.” And it was. I mean, maybe part of it is to our Catholic faith, and threes are very important so I think that was a little for my family.
But there was nothing else to do. We opened up, we had conversations, we had heart to hearts. We found when dad was mentally with it, we sat down with him. I gave him his coffee. He always had a doughnut, he was pre-diabetic. Who cares? There was ice cream, there were donuts, there was coffee. All of a sudden we went from, “Don't give Dad any pain meds,” to, “Where's the morphine? Give him some more.” And we timed it so that each one of us kids and his wife and his siblings, we got to say the things that, man, if it was any other illness or any other setting where we weren't there, we would have lived our entire lives regretting not having had that. Would I have wanted him to be around when the son that was protruding from my belly was born a couple months later? Absolutely. Would I have wanted more trips, more meals? Yes, yes, and yes. It wasn't going to happen. And it didn't. That's selfish. I mean, that was a selfish desire.
He lived a wonderful life. He closed out everything in those three days. He said his goodbyes. He was ready to go. And our family is a strong family. We carried my mom through it and we carried each other through it. And for him, he deserved to go without the pain, the loss of control, the loss of being himself. When we moved him into the hospital bed, that was it. We had to help him go to the bathroom within the last 12 hours of life. And I thought, this is not my dad he's going to check out because this is just not how he's going to live his life. Is that worth it? No, that wasn't worth it. And that was him. And that's what the hospice nurse told us. Everyone checks out when they're ready. That's Dad.
Dr. Lidia Schapira: I can't resist the urge to ask you this question of how you're taking this life lesson, this really important story which you framed and articulated so beautifully here for us into your work.
Dr. Teresa Thomas: So my work has always been in patient centered care, as nebulous as a concept as that is, and promoting patient self-advocacy. How do patients say what they need? Which is the great irony, right? That my work is corresponding exactly with what I experience and see. And I think that's probably why I love this research question. And now I see that not just the cancer experience, but framing that end of life care. And what does hospice mean? I think we had the best hospice team in the world. I don't see how any other hospice team could deliver as great care. And then, of course, I'm looking into, is all hospice like this? What are the hospice outcomes? And I realize, unsurprisingly, that we absolutely are spoiled, and this is not what most people experience. So I'm lucky that I'm in a place here at the University of Pittsburgh and with researchers that we have a palliative research center. This is easy for me to pivot into this place and to think about how do we create teams of clinicians, policies at a local level, at a state and a federal level that allow people access to really good clinicians at the end of life - clinicians that understand absolutely there's a medical management part just as much there's a human part that's happening here with the patient and with the family.
What was it that our hospice team did? It's the easy things. They gave us one sheet of paper, one phone number, “Call this number. We will pick up. You do not need to give us your medical record number. You don't have to tell us a history.” We called that number any time, and someone answered our questions. So basic, patient centered care, so basic. How do we do that? How do we do that at a systems level? How do we prepare patients to work with their clinicians when that's not there? These sort of high touch, but very difficult to innovate in clunky segregated systems. It's given me direction, and it lets me feel like I'm helping my family in retrospect, too.
Dr. Lidia Schapira: In some ways, it keeps you connected to your dad.
Dr. Teresa Thomas: Absolutely.
Dr. Lidia Schapira: Yeah. Well, thank you so much. It was a really beautiful, beautiful piece. Art of Oncology is about telling a story. But stories can inspire, stories can lead people to find their own path towards advocacy or research so thank you so much. To wrap this up, do you have a final message for our readers and listeners?
Dr. Teresa Thomas: Everyone has their experience with end of life and with palliative care, maybe, but definitely cancer care, and I just hope that it strikes a chord and makes people think about how we can make sure that families and patients receive the best care at end of life.
Dr. Lidia Schapira: Well, thank you so much, Theresa, for your story and for what you do. And 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 ASCO shows at asco.org/podcasts.
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Guest Bio: Dr. Teresa Thomas is an Associate Professor at the University of Pittsburgh School of Nursing.
Listen to ASCO’s JCO Oncology Practice essay, “Patient is Otherwise Healthy” by Dr. Scott Capozza, Board Certified Oncology Physical Therapist at Smilow Cancer Hospital Adult Cancer Survivorship Clinic at Yale Cancer Center. The essay is followed by an interview with Capozza and host Dr. Lidia Schapira. Capozza shares his personal experience with the long-term effects of cancer treatment.
TRANSCRIPT
‘Patient Is Otherwise Healthy’ by Scott J. Capozza, PT, MSPT
Let me start by saying: I know I am one of the fortunate ones.
Being diagnosed with cancer at any age puts many in a tailspin. I was no different when I was diagnosed with stage II testicular cancer at age 22 years. I was still in graduate school, completing my physical therapy program; suddenly, I had to schedule an orchiectomy, retroperitoneal lymph node dissection, and two cycles of chemotherapy around lectures, laboratory work, and practical examinations. Fast forward 20 years and I have an unbelievably supportive wife who has seen me through so much of my long-term survivorship concerns.
Despite my fertility challenges, we are so very fortunate that my wife was able to conceive three healthy, happy, and strong kids (conceived only through the roller coaster that is fertility preservation and reproduction medicine, which so many adolescent and young adult survivors must deal with and is emotionally very challenging, but that is a discussion for another day). I have a great career as a board-certified physical therapist in oncology, where I can help enhance the physical well-being of patients throughout the cancer care continuum. The journey to this path as a survivor was not a straight line, though that also is a discussion for another day.
What I do not remember signing up for was all the late and long-term side effects of cancer treatment, or maybe I did sign for them in a sort of deal with the devil so that I could finish PT school on time and return to my precancer life of running and being with my friends. We sign on the dotted line to rid the cancer from our bodies, but just like the mortgage, student loans, and back taxes, we end up having to pay in the end. Unfortunately, paying off this debt comes with a high interest rate (a multitude of adverse effects) heaped on top of the principal balance.
And while it would be very easy to blame my hyperlipidemia on my cancer treatments,1 I am pretty sure there is a likely strong genetic component. My grandmother had high cholesterol for as long as I could remember. As your quintessential Italian grandmother, she was 105 pounds soaking wet and ate like a bird (while being insulted if I did not have a 4th helping of her lasagna) but had to take her blasted pills for high cholesterol for all her adult life. She died a month short of her 103rd birthday and was still sharp as a tack until the very end. I will gladly sign on the dotted line for that outcome.
My immediate postcancer treatment years were great. I resumed running and ran several marathons, returned to a relatively normal social life, and started along my career. I met my wife, and she was enthusiastically willing to live her life with a cancer survivor. Marriage, house, kids, job…everything was going great.
Until things started going downhill.
About 10 years postchemotherapy, I noticed that my exercise tolerance was decreasing. It was harder and harder to keep up with friends on our long runs. I felt more fatigued overall. I went from running 10 miles to seven to five to now barely being able to complete two miles. My chest would feel tight as if a vise was clamping down on my ribs. Running up short hills in my neighborhood, which I had routinely done in the past, felt like I was ascending Mount Everest without supplemental oxygen or Sherpa support.
When I brought this up to my primary care physician, he looked perplexed. I am young(ish), no family history of heart disease, nonsmoker, healthy weight, and only enjoy a hard cider once a week. He performed an ECG in the office, just to double check to make sure I was not crazy.
When my heart rhythms started throwing out inverted T-waves, his eyes got larger. He said that I did not fit the description of someone who should be experiencing these symptoms.
“I had cancer, remember?” I remind him although he is very familiar with my medical history and we know each other well.
“Oh. Yeah.” My doctor nods….
My doctor thankfully took my concerns seriously and directed me to a series of referrals to cardiac and pulmonary specialists. Through the Pandora's box which is patient access to electronic medical records, I was able to read his postvisit report. He very accurately described the results of the physical examination and our conversation. He did write in his report that he would be placing referrals to cardiology and pulmonology. It was a very thorough evaluation, and I could tell that he was truly listening to me and not dismissing my concerns. What caught my eye, though, was the opening line to his assessment: “Patient is an otherwise healthy 42-year-old male…”
Otherwise healthy? I have high cholesterol; had to endure heartache and struggle to have a family because of treatment-induced fertility issues; I wear hearing aids because of cisplatin induced ototoxicity; and now, I have to go for a full cardiopulmonary work-up, all because, I had testicular cancer at age 22 years. To me it did not feel like that I was otherwise healthy. To further work up my symptoms, I was scheduled for cardiac testing. I have a new appreciation for what my own patients go through when they have to get magnetic resonance imaging (MRI) after I had a cardiac stress MRI. I had no idea just how tiny and claustrophobia-inducing an MRI machine is, so now I nod my head in agreement with my patients when they tell me how anxiety-producing it is to get an MRI. I had a treadmill stress test and echocardiogram, and these all came to the same conclusion: I have a thickened left ventricle in my heart, which throws off the ECGs but is just my normal anatomy. Phew.
When I went for my pulmonary function test (PFT), though, the results were different. The pulmonologist came in with that same perplexed look, as he is expecting to see someone other than an early 40s, healthy weight individual sitting there. Our conversation went something like this:
Pulmonologist: Do you, or did you ever, smoke?
Me: No.
Pulmonologist: Do you have carpets, rugs, or animals at your house?
Me: No.
Pulmonologist: Do you work in a factory or someplace where you're surrounded by potentially toxic chemicals?
Me: No.
Pulmonologist: Do you think you gave your best effort on the PFT?
Me (slightly annoyed): Yes.
Pulmonologist: I don't get it; you have the lungs of someone with chronic obstructive lung disease, but you don't fit into any of the risk factors.
Me: I had bleomycin as part of my chemotherapy regiment for testicular cancer 20 years ago.
Pulmonologist: Oh.
Yeah. Oh.
This is the crux of long-term survivorship: We look OK on the outside, but inside our body systems deteriorate faster than the noncancer population.2 For pediatric cancer and adolescents and young adult cancer survivors who could potentially have decades of life ahead of them, these late and long-term side effects are a perpetual consequence for surviving cancer. There is no light at the end of tunnel for us; the tunnel extends endlessly, and we grasp for any daylight we can to help us navigate the darkness moving forward. While there have been multiple studies addressing the long-term toxicity sequelae of cancer therapy, there is still inadequate understanding of optimal screening, risk reduction, and management and inadequate awareness of potential late effects among both medical professionals and survivors alike.3
Given the complexity of long-term toxicities for long-term survivors, a multidisciplinary team of health professionals can provide a comprehensive approach to patient care. For me, a key member of this team was the cardiac advanced practice nurse, who called me at 4:45 pm on a Friday afternoon to tell me that my cardiac evaluation was normal. Physical therapists do this by addressing fatigue, balance deficits, and functional decline through our multitude of rehabilitation tools. Cardiologists, pulmonologists, primary care physicians, dietitians, and mental health care workers can all meaningfully contribute to the well-being and long-term care of cancer survivors. The many health care providers in the lives of cancer survivors can also empower through education. However, the education pathway ends up being a two-way street, as so often it is the survivor who has to educate the nononcology provider about our internal physiological needs that belie our external appearance.
As for me, I am trying out new inhalers to help with my breathing. I take a low-dose statin every morning with breakfast. I am now plugged into annual cardiac follow-ups. I do not run anymore, though, as the psychological toll of not being what I once was has affected me more than the physical toll. I march on, trying to be the best husband, father, physical therapist, and cancer survivorship advocate that I can be.
While we may be living clinically with no evidence of disease, we live with the evidence of the history of our disease every day. Like petrified trees or fossilized shells, cancer treatments leave permanent physical and psychological reminders of our cancer experience. As greater attention is being focused on the optimized management of long-term toxicities in cancer survivorship, my sincere hope is that there will be effort to educate cancer and noncancer medical staff alike about the real physical and psychosocial adverse effects as well as advances in treatment that will both prevent development of long-term toxicity and yield better solutions for when they do occur. I hope better options will be available to all cancer survivors with all stages and all disease types in the not-so-distant future.
I am OK, really, but I am not sure ‘otherwise healthy’ really applies to me.
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, Professor of Medicine at Stanford University. Today we're joined by Scott Capozza, Board Certified Oncology Physical Therapist at Smilow Cancer Hospital at the Yale Cancer Center. In this episode, we will be discussing his Art of Oncology article, “Patient is Otherwise Healthy.”
At the time of this recording, our guest has no disclosures.
Scott, welcome to our podcast and thank you for joining us.
Scott Capozza: Thank you very much for having me. This is a great honor.
Dr. Lidia Schapira: I look forward to chatting with you about this. First of all, what a great title. How did the title and the idea of sharing your experience with this audience, the readers of JCO OP and JCO publications, come to you? Tell us a little bit about the motivation and the inspiration.
Scott Capozza: So the title actually came from my doctor's note, as I alluded to in the article, the Pandora's Box, so to speak, of patient access to medical records. I was reading his assessment of my regular wellness visit. And in that visit, I had discussed that I was having some breathing issues and some endurance issues with running, and I just didn't feel myself. And I knew that I hadn't had any significant cardio or pulmonary workups anytime recently. On top of that, we'd already discussed some of my other comorbidities, like my blood pressure, that sort of thing. So his intro line was “Patient is a 42-year-old otherwise healthy male.” Well, that's what caught my eye. I said, “Am I really otherwise healthy? I've got high cholesterol. I have this history of cancer. I am dealing with all kinds of late effects, and we're working those late effects up. And so am I truly otherwise healthy?” And I love my PCP, and he listens to me. And so I'm grateful for him and for him taking me seriously, because not everybody has that. Not every survivor has that person, that quarterback, so to speak.
So that was really what kind of drove me to write the article. It was just an idea that it was in my head. I did not write the article right away. I'm now 48. So this was actually even a couple of years ago. But I think I wrote it because I really was writing it more for the non oncology provider, for the PCPs, and for the pulmonologists and the cardiologists who don't work in the oncology space like you and I do, to be cognizant of these late effects. And just because somebody is a year out from treatment, five years out from treatment, or in my case, 20 years out from treatment, that these late effects are real and they can play havoc with our quality of life.
Dr. Lidia Schapira: So let me talk a little bit about nomenclature and the semantics. You know this field very well, and you know that not every person with a history of cancer identifies as a survivor. But the term is really helpful for us. And in the original article that Fitzhugh Mullan wrote in New England Journal called the “Seasons of Survival,” he reflected as a physician with cancer that you go through different periods in your survivorship, journey or life. Can you tell us a little bit about that and what it's been for you? When did you feel that you were a cancer survivor? Do you use the term and what have those seasons or those stages felt like for you?
Scott Capozza: That's a great question. And for my old patients, I have this conversation with them as well. For me specifically, yes, I do identify as a cancer survivor. I will say, though, that when I was going through my treatments, I did not identify with that word. I also think that because I was young, I was 22, 23 at the time of my diagnosis, and I did not want any association with cancer, that I really did not want that label attached to me. At that time, I was a physical therapy student and a runner. Full disclosure, I'm a Boston Red Sox fan. You can hold that against me if you want. So I didn't want this extra label, so I didn't want it anyway in the first place. I do, I remember having a conversation with my nurses, and they said, “Oh, you should go to this walk or whatever that was happening for cancer survivors.” And I said, “But I'm in the middle of chemo. I've still got my port. And I don't think I should go because I'm not done with treatment.” And so that's why I think it's great that we have, the American Cancer Society and NCI have come out with very clear definitions that say that a person is a cancer survivor from the mode of diagnosis, and I use that for my own patients as well, because they have that same question. They ask me, “Am I really a survivor? Am I really done?” That sort of thing. And I say, no, I go by those definitions now. And so I always frame it as, you have to survive the words “You have cancer.” So that's me with the relationship with the term survivor.
To your other point of the question, as far as the seasons of survivorship. Absolutely. And I think that we see this more prevalently with our younger population, with our pediatric survivors, and for me, as an adolescent, young adult survivor, an AYA. So I have gone through these seasons of survivorship. When I was diagnosed, I was young and I was single and I was finishing school. That's one thing. I was not dating anybody. So when I did just start to date somebody and move towards marriage and that sort of thing, and all of a sudden, now my fertility issues, because of my treatments, now that came to the forefront. So that became a new season, so to speak. How are we going to tackle that? And now as a father, that's a different season because I have three children, two boys, and it's on my mind that they have my genetic makeup. So are they at higher risk of developing testicular cancer because of me? So I'm in a different season now than I was when I was single and 25.
Dr. Lidia Schapira: And so you also talk about having cisplatin induced ototoxicity. And now this latest problem, which is the bleomycin induced lung problem. That is what sort of unraveled this new season of trying to put these pieces together. How have you thought about this and perhaps shared it with your wife and your family? This idea that the exposures you had to toxic drugs which cured you and gave you this fortunate possibility of being a long term survivor keep on giving, that they keep on manifesting themselves. And fortunately, you have, it seems, a very receptive primary care doctor who listens but may not be particularly able to guide you through all this and may not know. So he's sort of taking his cues from you. How do you negotiate all this? The idea that there may still be something that's going to happen to you as a result of these exposures?
Scott Capozza: Being vigilant, I think, is really important. And I think open lines of communication with my providers, open lines of communication with my wife. And also, again, my children are at this point now where I can have those conversations with them. I don't think that I could have done that when they were younger, but now I think they can start to understand why daddy wears hearing aids now is because daddy had to get a certain medicine to help get him healthy, to help get rid of the cancer. So to frame it in that context, I think it makes it easier for them to understand why I have this cytotoxicity from cisplatin. And they even know now with my pulmonary issues that daddy can't necessarily run with them. That was always going to be a goal. I was going to be able to run with my children, and I can't do that. I am still able to bike. It does not stress my pulmonary system as much as running does. So we are able to cycle as a family, and so we are able to do that.
But as far as other late effects that might show up another five years or 10 years from now, those are things that I will continue to have those conversations with my PCP to say, do we need to continue to do cardiac screening every so often? Do we need to continue to do pulmonary screenings, blood work, that sort of thing? I also know that I am very fortunate that I work in the field, so I am surrounded by it, which sometimes is good and sometimes can be a little discerning, knowing what's out there also. So it is an interesting balance to be able to wear both of those hats at the same time.
Dr. Lidia Schapira: I have a couple questions that arose to me reading your essay. Now, I am an oncologist, so I know you know about these late effects. One of your lines is, this is the crux of long term survivorship that is appearing healthy, being labeled as otherwise healthy, but really having these exposures that predispose you to getting other illnesses and diagnoses. Do you think it would help if your PCP and pulmonologist wrote that you had an exposure to bleomycin in requesting the PFTs? Instead of just saying 42-year-old with such a symptom, 42-year-old with an exposure to bleomycin and dyspnea. Do you think that writing that in your chart, instead of just saying ‘otherwise healthy’, just putting cancer survivor, testicular cancer survivor, and adding the exposures every time they require a test, could that in any way have made your life easier as you reflect back on the last few years?
Scott Capozza: That's a really interesting question. I never thought of that before, and I think that could go one of two ways. A, it could be validating, but I could see the flip side of that where it's, you're constantly reminded of it. So I don't know that there's a perfect answer to that. I don't know what I would prefer, honestly. If we could hop back in time and change the documentation, then we make an addendum to the documentation. I don't know that I would really want that because obviously I know it. But do I want to continue to see that every time I open up my chart? I don't know. And I can see how it can be frustrating for my patients that when they get through my chart notifications or whatever it might be, that they're constantly reminded by it, and then that can lead to fear of occurrence, and that can lead to anxiety and depression. And all the things that you and I know, being providers in the oncology space, we know that these are all things also that our patients experience. So I don't know. I'll have to think about that a little more.
Dr. Lidia Schapira: Maybe the next essay you send to us is about shared decision making, even, and how this is used, playing it forward a little bit in the cancer record, it's there and prominent. But in your primary care and other records, how important is that as a qualifier? All of these things are really interesting, and I wonder how you have used your personal experience in treating other patients and whether or not you disclose to your own patients that you are a cancer survivor.
Scott Capozza: I don't lead with it because it's not my story. It's their story. It's their experience. So I never lead with it. I do think that patients are savvy. They do want to know who's on their care team. So I tell this story often that I was working with a young woman with breast cancer. She was still in the middle of treatment. She was very understandably upset. And I was about to say something along those lines of, “I can appreciate what you're going through, because I went through this, too.” And she said, “I know who you are. I looked you up.”
Dr. Lidia Schapira: Wow.
Scott Capozza: Yes. But she followed that up with saying, “And because I looked you up and because you're a survivor, that's why I want you working with me.” So again, it goes both ways. So in that instance, it did, it did work out. So, no, I never lead with it. I think patients a lot of times just figure it out on their own. If I'm working with a patient and we've been working together for a while, we might have that conversation, then it might come up. But again, it's about our patients. It's about making sure that they have the highest quality care. And so that's why they're at the center of everything that we do. So, no, I don't lead with it.
Dr. Lidia Schapira: So as we wrap up, I have two questions. One is, did you share your essay with your primary care doctor?
Scott Capozza: I have not yet. I have not actually seen him since it was published. My annual physical is coming up later in the summer. I was thinking that I would bring it to him to see what his reaction would be.
Dr. Lidia Schapira: That sounds cool. Will you let me know what he says or she says? And the other question is, since you did decide to put your story in front of an audience of oncology professionals, what is your message to them?
Scott Capozza: I think the message, again, is to listen to your patients. And again, you alluded to it a moment ago, the shared decision making, I think that's so critical. I think that's where we are now, and that's where we need to continue to move as a profession, not just in oncology, but I mean, across all health domains. And so I think that for oncology providers specifically, listen to our patients and to validate those concerns, to educate and then do something about it also, I think, is really critical.
Dr. Lidia Schapira: And involving other members of the multidisciplinary team is key. I mean, we acknowledge we need that during treatment, but I think post-treatment, it's equally important to refer people to think about it, to think about referring for rehabilitation or prehabilitation in certain cases. To minimize the baggage that people carry into survivorship.
Scott, thank you. Thank you for writing. I wish you good health, and I thank you very much for sending us your story.
So 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 ASCO podcast shows asco.org/podcast.
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Guest Bio:
Dr. Scott Capozza is a Board Certified Oncology Physical Therapist at Smilow Cancer Hospital at the Yale Cancer Center.
Listen to ASCO’s Journal of Clinical Oncology essay, “The Road Less Traveled: Perspective From an Australian Oncologist” by Stephanie Hui-Su Lim, Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. The essay is followed by an interview with Lim and host Dr. Lidia Schapira. Lim shares her thoughts as an oncologist dealing with a patient that has decided not to continue with treatment.
TRANSCRIPT
Narrator: “The Road Less Traveled: Perspective From an Australian Oncologist” by Stephanie Hui-Su Lim
He had been diagnosed with metastatic colorectal cancer in his late 30s and was responding well to first-line treatment. Physically fit, with a good tolerance to therapy, there was no stigma of sickness or telltale signs of cancer lurking around him. His partner usually attends with him, offers polite nods, few questions asked, but you could sense her underlying nervousness and fear of the unknown. Between the short phrases of broken English and the interpreter talking, consultations were usually pleasant, the right questions were asked, and I would end the consultation by asking how his family was doing back in Vietnam.
Born to Chinese-Vietnamese parents in a city on the outskirts of the capital, he migrated to Australia 10 years ago. He worked hard, exercised, ate a healthy blend of an Asian and Western diet, and check-boxed all the requisites to build a good life.
On this occasion, his cancer was slowly progressing although remained largely asymptomatic. His optimism stayed stable, and he kept his full-time job. I discussed switching treatment.
“Do you have any questions?”
As I shuffled the consent form, information sheets in Vietnamese, pathology form, imaging request, and follow-up bookings, I waited for the interpreter on the other end of the phone to speak. COVID-19 was still lingering, and our face-to-face interpreter service had largely been replaced by phone calls.
My now 40-year-old patient, alone today in the clinic room, looked at me and the care coordinator, then spoke something to the phone.
The voice on the other end said he has no questions, he is “keen to get on with it.”
“Ok then, we'll get him to sign here, and I'll need your healthcare interpreter number too.”
An exchange of words ensued, perhaps some things were repeated over. Then my patient smiled, and waited.
“He says thank you doctor but he doesn't want any treatment.” It was not the answer I was expecting.
I had explained his slow disease progression, multiple lines available, and good tolerability of treatment, maintaining his quality of life and maximizing survival. I had gone through the projected life expectancy at this point, which was still measured in the order of short years if we pursued all standard therapies.
“Can you ask him again? That he does not want any treatment?”
Perhaps the interpreter had not relayed what I said. Perhaps I had not emphasized the benefits of continuing treatment. Perhaps there were misplaced reasons for declining evidence-based treatment, the clues of which I had learned to pick up quickly, gleaned from conversations over family dinners from my own family of migrants.
When my patients decline treatment in a context where the clinical benefits clearly outweigh potential harm, I often feel I have not done enough. If I spent more time talking them through their decision making, guiding them through hypothetical what-if scenarios, then would we have gotten to the same page? Was I sure they were compos mentis? Should I call the other listed relatives and have the same conversation with them?
In his case, he had made a capable and informed decision.
We are used to the well-trodden path of exhausting appropriate standard treatment before transitioning to a best supportive care approach. However, when patients choose the less traveled path where their cancer journey and life expectancy are truncated by choice, we may struggle to understand their decision. I felt a sense of frustration at his polite declining of potential years of life and unfairness when the next patient, unfit and exhausted of all therapies, begged for more treatment options or anything that could give them another extra day. I sought to try to better understand the reasoning behind his decision. I have encountered many culturally and linguistically diverse (CALD) patients throughout my journey as an oncologist and personal experiences in my own migrant family. Our health district has one of the most diverse populations in the state, with one in 10 having limited English proficiency. Almost half the population speak a language other than English.1 We often see as many interpreters as patients in the waiting room, multiple extended family members crowding into small consult rooms, and multitude of language translations of patient booklets being the only recognizable information to new patients in an otherwise foreign cancer center. I understood the importance of cultural awareness, and that cultural differences feed into decision making. But what were the beliefs, concepts, and cultural norms that shape what they do and value? An Australian study investigating the attitudes of Chinese migrant patients toward cancer identified several key areas including the nondisclosure of a poor prognosis, importance of family in mediating between health professionals and patients, incorporation of Chinese culture–specific treatment, importance of interpreters, and psychological and spiritual support.2 Chinese patients use combat strategies on the basis of traditional Chinese medicine, Chinese beliefs of food to maintain health, exercise with Qigong, Feng Shui/spatial organization, and ancestor worship.3 Chinese illness conceptualization includes concepts of karma, fate, and retribution.4 There are recurring themes that arise, with another study highlighting the importance of the Chinese beliefs in fate and luck, ying and yang, stoicism as a coping mechanism, importance of family, fear of losing face, and denial of diagnosis as a means of protecting the family. A common thread of family playing an essential role, rather than a patient autonomy approach, was evident. There is a need to incorporate these beliefs into culturally appropriate programs.5 Sadly, not much is known about the cultural impacts on patient decision making. Research into race, culture, and ethnicity is thought to be too restrictive.6 Research investigating interventions to improve patient-centered care and participation in the treatment process in CALD has found positive effects of culturally tailored video and patient navigator interventions.7 A recent review also found patient navigation as an effective strategy in improving patient care, from screening through to diagnosis, treatment initiation, and likely also in the active treatment and survivorship phase.8 Importantly, cultural barriers were evident. An Australian study looking at CALD needs in outpatient cancer clinics highlighted the importance of recognizing language-related needs and care teams adapting practices and available resources to make it work for CALD communities.9 Work in other CALD groups has also focused on the triadic relationship between the patient, the patient's family, and physicians.10 Latin American women who were less acculturated deferred to their families or friends to make treatment decisions, highlighting the importance of familism as one of the most culturally specific values for Latinas. Loyalty and solidarity among members of the family are integral to decision making. Asian and Latino patients are seen to have a higher rate of patient passivity because of cultural norms that respect physician authority.11 A systemic review of cancer beliefs in minority populations, the majority based in United Kingdom and United States, found low health literacy, fatalism, and stoicism as common themes.12 Decision making in a systematic review, with a predominant African American minority group, found the themes of spirituality, fatalism, and acculturation to be important in the treatment decision process.13 Ultimately, all these cultural beliefs and concepts feed into how patients decide which treatment road they wish to take. Shared decision making models in ethnic minorities have taken into account human values recognized across different countries and the relation between these.14,15
As clinicians, we often focus on the disease, with the goal being to get rid of as many cancer cells as we humanly can and prolong our patient's life expectancy while maintaining quality of life. I often feel we require tangible goals which can be measured in time and percentages, hazard ratios, and survival odds at 2 or 3 years. For the patient sitting on the opposite side of the desk, who are only single points on a Kaplan-Meier curve, goals may be very different, shaped by their own cultural values and beliefs. What numerical value can we place on traveling overseas back home, enjoying conversations over family dinners, rather than going to the cancer center for the next cycle of treatment?
My patient had decided his goal was to return home to his family in Vietnam. I saw him in clinic several times, each time gaining more of an understanding of his decision. I spoke to his partner, we obtained a face-to-face interpreter. We discussed culturally appropriate support groups. He was active in local community groups who provided spiritual and existential support. I enquired about herbal remedies, which he had been on preceding his cancer diagnosis and continued with our pharmacist's approval. We turned to discussing where he was going to be living in Vietnam, potential complications during the flight home, provision of a medical letter, and copies of his tests. He remained uncertain about the prospect of further treatment, that it was hard to access good medical care and did not offer any answers about whether he planned to seek out treatment in the big city hospitals back home. He reassured me he would be fine.
Every time I see a CALD patient, I remember my patient who politely said no, thank you. I wondered if he ever accessed any treatment, how quickly his disease progressed, when and how he died. My initial frustration has evolved into the understanding of how important it was for him to be surrounded by family. I found solace knowing he died with family by his side. The treatment he wanted could not be offered through an intravenous drip or medication. It could only be found in the safe familiarity of family. Every time I see a CALD patient, I try to create a culturally familiar place for them to be treated and place their decision making amid their cultural beliefs, norms, and values.
The theme of last year's World Cancer Day is “Close The Care Gap.” Language, literacy, ethnicity, race, income, education, socioeconomic status, and geographical location are just a few of the factors that contribute to the cancer care gap. We need to have cultural sensitivity in mainstream health care and respect the differences that feed into the decision to accept or decline treatment in ethnic minority groups. Ethnic minorities are defined as nondominant groups, connected by a shared cultural heritage, values, and often language. It is important to note that this is also a relative definition, and my patient in Australia falls into the CALD group, but would be the dominant group back in his home country of Vietnam. Health and illness are not only visceral but also a social and cultural phenomenon. Sometimes, it is recognizing that closing the care gap does not bring us to the same destination, but to walk the road less traveled with them. As the years pass and I reflect on my patient's cancer journey, I have come to understand that as his doctor, it was my job to ensure he understood his disease and treatment options. However, perhaps even more importantly as his doctor, it was my honor to support him down the path he had chosen.
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. With me today is Dr. Stephanie Lim, a Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. In this episode, we will be discussing her Art of Global Oncology article, “The Road Less Traveled: Perspective from an Australian Oncologist”.
At the time of this recording, our guest has no disclosures.
Steph, welcome to our podcast, and thank you for joining us.
Dr. Stephanie Lim: Thank you very much for having me.
Dr. Lidia Schapira: Let's start by talking a little bit about the role of writing and reflection for us in oncology practice. Tell us a little bit about what led you to write this case up and then to decide to share it with your colleagues.
Dr. Stephanie Lim: Yeah, so writing is definitely a creative outlet for me. I also love to paint, and I think there's so much art in the oncology space. There's so much storytelling, the rich and diverse stories that our patients live out in their cancer journey. So I think for me, writing definitely is an avenue for me to process the patient scenarios, to distill what I've experienced emotionally with the patient in front of me, and really to put it down on paper. It's almost a debriefing exercise as well for me sometimes. It's quite cathartic to write and to paint, and I find it's also a way to remember a patient. So if there's something I really don't want to forget, I think writing is a way to almost memorialize that patient's scenario and that patient experience.
Dr. Lidia Schapira: Very beautifully said. So with that, let's go to the case in the particular patient that you chose to write about. And in my reading of your essay, I think you have a message. What is that message for the reader?
Dr. Stephanie Lim: So I think let's take a step back and just go through some of the themes that really resonated with me, that took me quite a few years to go through and think through before I actually wrote it down in this essay. In fact, this essay is an amalgamation of quite a few cultural and linguistically diverse, or CALD patients that I've met and looked after over the years, and those themes just kept recurring.
The first is patients when they said no to treatment. As a clinician, I struggle. I struggle with that when patients flatly refuse what I sincerely feel is the best treatment option for them. I feel frustration, disappointment, even anger and sadness, almost grieving that lost opportunity for potential life lengthening years that the patients may otherwise have. In fact, I was listening to one of your other podcasts the other day, “Knuckleheads”, which, again, resonated with me because it was, again about another story of patient refusal and a different story, but the same theme. And I think when you add the CALD population into it, which is really the theme, the message of this essay, you add another layer of complexity, another layer of cultural diversity and differences to an already complex decision making process. So those two things really sort of challenged me over the years.
And I think the other pervasive theme is that human side. We always talk about the art of oncology, the humanistic aspect, but it's true. So I think the importance of the patient's story and really just paying attention to the background and that lived experience. Someone once told me, medicine, it's a humanistic enterprise, it's not just about numbers and medians. In fact, in the essay I mentioned that the patient in front of me is really just one point on a Kaplan–Meier curve. Medians to them don't really mean very much. There's really no value that we can place on time spent with family. Or in this case, when I tell a patient they've got progression, or try and outline and map out the next treatment plan, and then they turn around and ask me, “Okay, doc. So can I hop on a plane, fly across to the other side of the world and spend three months with my family? Because that's what I want to do.” So I think there's that struggle of trying to really do what's best for the patient in terms of medians and survival and quality of life, but also trying to balance those things that are really hard to put a value on.
I hope the message of this essay is that we can try and understand, identify these things, pay attention to patients, listen to their stories, and really help appreciate those choices. So it's certainly by listening to them and really trying to understand more about CALD and the concepts and values behind their decision making. I've grown to appreciate the choices they make and really helped to support them down what I called the path less traveled, a very unfamiliar path that I otherwise wouldn't have chosen for them.
Dr. Lidia Schapira: So let's unpack all of these wisdoms that you've just told us about. The motivation is clear, the intentions are clear. Let's talk a little bit about your discomfort as an oncologist, because I'm sure our readers and our listeners have experienced that when a patient gives you an informed decision to refuse treatment, why do you think it makes us so uncomfortable? And why did it make you so uncomfortable to have your patient say, “Thank you very much, I understand you, but no thanks”?
Dr. Stephanie Lim: Yeah, I think as clinicians we want the best for our patients. And I think a lot of the time that is what's best in terms of survival, what the evidence says we should be doing, weighing up the pros and cons of treatment. And we map out the lines of treatment for our patients while trying to maintain a quality of life and take into account all their wishes, of course. But I think sometimes we might get carried away with what we want for them or what we feel is best for them. But listening, if you really spend time asking what they really want, it might be something as simple as I just want to spend more time with my family rather than coming to the chemo suite for another infusion. I think as time goes on I'm doing a lot more listening, a lot less talking.
When I started out I was telling patients medians and this is what we're going to expect, this is the 50% survival rates, and a lot of time patients look at me and it means not very much to them. So I think for us there is a root that in our minds we've mapped out for them which we sincerely feel is the best for them. And I think when they refuse that it can be quite frustrating, but also I think, challenging because as I said, it's a path that's unfamiliar. When patients go from diagnosis to, “Well, I actually don't want any treatment,” really they shorten their- as I think I put in the essay, intentionally shortening their survival and choosing best supportive care when they're not there yet is something that I still struggle with, especially in my younger patients.
Dr. Lidia Schapira: So let's talk a little bit about that. And I'm just challenging you in the best possible collegial way here when we talk about honoring our patients autonomy and providing sufficient information for them to really give us informed consent based on being aware of their choices and trade offs. And yet when those decisions don't conform to what we think we would choose or what we've recommended, there's disquiet. And yes, we know that the patient ultimately is the main decider on what gives their life value and meaning, but it's difficult for us. Can you talk a little bit about how you resolve this tension in your practice? Even if a patient is very fluent in your primary language, that's almost a detail. It complicates things here. But it's not the only thing that really, I think, is so challenging and feels so difficult sometimes for the oncologist.
Dr. Stephanie Lim: Yes, I think in the CALD population, there's several other layers of complexity. So yes, the patient is ultimately the person receiving treatment and yes, they are the ones who should be deciding what they want. I think in the CALD population it's more complex because we talk about patient and clinician shared decision making, but there is this triad of family physician and patient relationship that exists in a lot of CALD populations, not only in Southeast Asian or South Asian, but perhaps even in the Latin American population, and that importance of families. So there is not just a patient and a physician, but there is also the whole family that is making that decision.
To complicate things in Asian culture, there is also this autonomy that's given to the doctor. So that belief that the decision making in some ways should be delegated to the health professional because they're the ones who know what they're doing. And a lot of my Asian patients might say, “Well, you're the doctor. You should be telling me what to do.” So I think it's a balance between respecting that, if that is their belief, respecting that doctor autonomy, but also taking into account that triad of decision making with patients, family, and even the wider community. So I think certainly in a CALD population, my approach would be to really understand why they've made that decision, to involve the family in that decision making, perhaps to see the patient over time, over multiple consultations, which we've done with this particular patient in the essay, and really just to understand what the barriers are or what their reasons are for going down a different path to what I've recommended. And I think once that's all unpacked, I think it becomes quite clear and it gets us to the same page.
Dr. Lidia Schapira: So, Steph, if this patient had been 65 or older, do you think it would have been easier for you to accept his decision to say ‘no’ to treatment and go home to be with family, whether or not access to any treatment is available to him there?
Dr. Stephanie Lim: That's a good point. I think I personally do struggle more in my younger patients, patients closer in age to me at a similar stage of life, they have young children, and I think a lot of it is because they are so fit. We feel that they can tolerate so many lines of treatment. I'm almost grieving that lost opportunity, lost time that they may have with their children or their family. So I think definitely in the younger patients, it resonates with me more. I struggle more with that. Having said that, it's still a struggle when older patients who are fit for treatment say ‘no’. But definitely, I agree with you. I think the younger patients definitely are harder to manage.
Dr. Lidia Schapira: I was very impressed in reading your essay with the fact that you remained curious about the person who was your patient. You were curious and engaged and wanted to learn what he was thinking. And you not only wanted to make sure that he understood his options medically, but you wanted to understand the context, as you say, who else was influencing the decision, and still wanted to preserve the relationship. Tell us a little bit about how that evolved over time and what you learned and how you brought yourself to a place where you could accept this, at least not be distressed by his refusal of treatment.
Dr. Stephanie Lim: So I think, again, a lot of it was listening to his stories. Over time, that conversation shifted from me trying to tell him that if you have this treatment, this is what we expect, this is what we could gain. These are the survival years that you potentially could benefit from. So I think the conversation, over time, shifted from that to a focus on his values, other support systems, whether it's the support communities that were in place, the importance of even complementary or Chinese medicines that he was also pursuing, basically trying to unpack all that. And I think our conversations shifted from a lot less talk about treating the cancer to treating him as a person and what he needed.
So I think over time, I basically sat back and listened to him and what he wished to do. And over time, that conversation then evolved into, “Okay, you're going to leave, so how can I best support you?” And even then, I was trying to see if he was going to seek treatment overseas. I was ready to call someone at the other end of the world to say, “Here are the medical records. This is what can be done for him.” But I think over time, I've come to realize that definitely was not his priority. He needed to be with family. He wanted to go home. And as a clinician, as his treating clinician, I think my job was to support him through that and try and understand. So I think over time, just spending that time listening to them, I did understand. I did struggle with it. But I think ultimately, I was at peace with his decision.
Dr. Lidia Schapira: In the essay, you mentioned that your family also migrated to Australia. Do you think that their experience in some way has shaped your attitude towards understanding cultural and linguistic differences? And if so, how?
Dr. Stephanie Lim: Yeah, thanks for asking that, Lidia. So I was born in Southeast Asia. In fact, I grew up in Brunei, on Borneo island, which is in the heart of Southeast Asia. My dad is Bruneian. My mom is Malaysian. I did finish off my high school in Australia and did all my medical training in Australia. So this is through an Australian lens. In fact, the reviewers wanted me to include that, to point out that CALD is a very relative definition. But I think I class myself as a 1.5 generation Australian. So I hope that I do have some insights from my background and my upbringing to understand a little bit more about the nuances, to be able to pick out some of the subtleties when I see patients, when I talk to patients, that complex cultural belief that underpins all their decision making. So I think that definitely, I hope, has enabled me to be more sensitive and to be able to pick out some of those nuances that helps me better understand and frame a patient's decision making.
Dr. Lidia Schapira: And ultimately, did you feel all right with your decision and your patient's decision?
Dr. Stephanie Lim: Yes, I did. So I think ultimately, the goal is to create this culturally safe and appropriate place for patients where they're comfortable, where the clinicians are also comfortable with that final decision that we reached. And I think we got there. But my hope is that with all future patients, that we can create this with the help of patient care navigators, patient translators. It comes from a systems level, a team level, and definitely an individual level to understand, identify these concepts, as I pointed out in the essay, to reach a point where we feel that the patients have had a culturally safe and language appropriate care, that we've explored all the avenues, all their concepts, all their beliefs, and we've reached the decision that we're both comfortable with.
Dr. Lidia Schapira: Well, Steph, it's been a pleasure to chat with you today, and I know that I did, and I know my colleagues have learned a lot from reading your story and wish you all the best. And thank you for sending your work to JGO.
Dr. Stephanie Lim: Thank you, Lidia, it was a pleasure chatting to you.
Dr. Lidia Schapira: And 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 ASCO shows asco.org/podcasts.
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. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Listen to ASCO’s Journal of Clinical Oncology essay, “Knuckleheads” by Dr. Timothy Gilligan, Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. The essay is followed by an interview with Gilligan and host Dr. Lidia Schapira. Gilligan emphasizes the importance of partnering with his patients to understand what they are going through and their reason for rejecting recommended treatment.
TRANSCRIPT
Narrator: Knuckleheads by Tmothy D. Gilligan, MD, FASCO (10.1200/JCO.24.00160)
I was in tumor board when I first heard about him. One of my former colleagues referred to patients like this as knuckleheads, patients who were interfering with our plan to treat their cancer. He needed chemotherapy. He kept refusing. He was going to be referred to me so that I could talk some sense into him.
Preparing to go into the examination room, I realized I was getting ready to use my medical knowledge to try to make him consent to chemotherapy. After all, that is what he needed. If only he would listen to me. I paused and remembered what my mentors had taught me about forming effective relationships with patients and about the communication skills that could engender trust and a feeling of connection. I remembered one of them saying to me “Every time I open my mouth, I risk making things worse.” So I committed to listening and curiosity and humility and entered the room. He had a curable cancer. There was so much at stake.
“What have the other doctors been telling you about what’s going on?” I asked. He said he had been told that his cancer had come back and that he needed chemotherapy now. That additional surgery wasn’t an option.
“I heard that you had some concerns about chemotherapy,” I said.
“Yes, I want to delay it until the fall,” he said.
“Tell me about that,” I responded.
So I got to hear his story. He was a single father with several school-aged children. His wife had recently left him for another man and said a lot of hurtful things on the way out the door. She no longer wanted to be a mother and only saw the kids 1 or 2 days a month. His oldest child was in crisis and struggling in school. The patient was a construction worker who could only work during the warmer months and would be unemployed all winter. As a seasonal worker, he was not eligible for unemployment benefits. He was the sole breadwinner for his family. It was now summer. If he stopped working for 3 months to receive chemotherapy, he would not be able to support his family and had no way to make it up during the winter.
Not really the story of a knucklehead, of another man refusing to take care of himself. It all seemed so unfair to me that I wanted to cry, to have all this land on him at once—cancer, abandonment, a child in crisis, financial instability. He was overwhelmed. I let him know that I saw that, that I was moved by it.
We talked about his cancer and what we would expect to happen if it was treated and what would happen if it was not. He wondered if maybe we could wait 2 weeks and get another scan to see how quickly things were progressing. Medically this seemed safe, and I agreed to his plan. And with the help of the social worker on our team, we started marshalling resources that day to make it more feasible to get him through treatment, which he agreed to begin a few weeks later. He completed the course of chemotherapy, and he has most likely been cured.
He reminded me of another patient I had, an African American woman who had been referred to me by one of my only African American colleagues in my work setting. She had bladder cancer. When reviewing her chart, I noticed that she had been diagnosed 2 years earlier at a different hospital and refused treatment. The chart said that she needed to take care of her children and declined curative surgery for that reason. It seemed like an odd logic to me. Another knucklehead refusing to comply with our plan?
When I went into the room, she clearly did not trust me. I saw skepticism in every aspect of her behavior and wondered whether it was my whiteness that triggered it. I remembered my mentor's words about the risk of opening my mouth when I was not yet sure to whom I was speaking. So I listened, paying attention and waiting for an opening. Eventually she said, “You know, I was actually diagnosed 2 years ago.”
“Yes, I saw that in your chart. I was wondering what happened.”
“Well, I was all set for surgery. And when they were evaluating me for it, this anesthesiologist came into the room. And she stood there looking at me like I was a piece of dirt. And she wouldn’t answer my questions. And I said to myself, I’m not letting her take care of me.”
“Was that racism?” I asked her.
“Yes, it was,” she said.
“It sounds like racism,” I said.
“I know it when I see it,” she said.
After that, there was a striking shift away from the skepticism I had felt from her earlier in the visit. We talked through her treatment options. We set her up to see a radiation oncologist and a urologist who did radical cystectomies. When I called her at home after those visits to see how they went, I heard that the radiation oncologist had won her trust. The urologist had not. “It felt like he couldn't wait to wheel me off to the operating room,” she told me. So she choose bladder preservation with chemotherapy and radiation.
It turned out that she was a foster mother and was deeply devoted to her foster children. She wanted to be there for them. They were not a reason to decline life-saving medical care. And we talked about them at every visit as she made her way through treatment. She, too, seems to have been cured, despite the delay.
What surprised me about these two patients is that no one seems to have heard their stories during their initial encounters with the health care system. The only story that was heard was the story of the tumor, the focus of our tumor boards. And yet it only became possible to treat them when we learned their human story. I wonder whether tumor board is the best name for the conferences that bear that moniker. Does the name predispose us to focus on the disease rather than the person? And while I did get to hear the stories of these two patients, it made me wonder how often I have failed to do so with others on days when I was not being so careful.
What was it that led them to choose treatment? Human decision making is complex and influenced by many factors. I tried to see these two patients and to hear them and to make a connection. I cannot know for sure what made the difference.
This is what I do know: I am not entitled to my patients' trust. It is something I have to earn each time I walk into the room. One way to earn it is to listen and to be responsive to what I hear. I try to remember where the locus of control lies. It is their life, it is their illness, and it is their decision. I can advise them and help them understand their options. Together, we can explore what is most important to them. But I do not get to tell them what to do. If they decline to follow sound medical advice, maybe there is something important that I do not know. If I stop talking, maybe they will tell me.
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, Professor of Medicine at Stanford University. Today we are joined by Dr. Timothy Gilligan, who is Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. In this episode, we'll be discussing his Art of Oncology article, "Knuckleheads."
At the time of this recording, our guest has no disclosures.
Tim, welcome to our podcast, and thank you for joining us.
Dr. Timothy Gilligan: Thank you so much for having me. I'm really happy to be here.
Dr. Lidia Schapira: It's my pleasure. Let's start by talking a little bit about the purpose of writing and publishing this article that, to me as a reader, has a direct message for our colleagues in oncology. Tell us a little bit about the motivation and the intention.
Dr. Timothy Gilligan: So I think there are two pieces to it. One actually was feedback that I heard from medical students, and we would talk to them about their experiences in the hospital with regard to bias and related issues. One of my hats that I wear is I'm a DEI officer for graduate medical education, so I'm involved in that work. We heard two major complaints from students, and one of them was that they heard doctors, whether they were attendings or residents or interns, speaking about patients disrespectfully. And the big kind of ‘aha moment’ for me was realizing that we kind of get indoctrinated into this world where we sometimes let off steam by speaking about our patients in disrespectful ways. And I remembered when I was a junior attending, a senior attending, handing off a patient to me, saying, "Good luck with her. She's crazy." And I was so used to that language that I didn't pay that much attention to it, but I actually ended up forming a very good relationship with that patient.
But after I heard that feedback from the medical students about how it really upset them that we're taking care of these people, and sometimes outside the room, we use language that isn't really respectful. It's not that it was mean, necessarily, but it was less respectful than you'd like it to be if it was someone like your mom or your loved one, your brother, or whatever. And so I started really listening to that, and I tried to pay attention. Did I do that? And could I stop doing it if I did? So that was one piece of this. But the other thing that really motivated me is that the first story that I tell in this article really was my favorite patient of 2023, because I actually felt like, by taking an extra effort to really get to know the person, I was actually able to really get a better outcome for the patient. And when we got him through treatment and he was cured, it felt like such a win.
Dr. Lidia Schapira: Let's pause for a moment and just talk a little bit about the student's comment, because when I just saw the title of the article, I felt a little stung, like, how can we even be using this word to refer to a patient? Tell us a little bit about that. You are the most attentive, respectful clinician that I know, and you publish an article with a word that a colleague described the patient, and to me, it just doesn't pass the bar.
Dr. Timothy Gilligan: Yeah, well, it's funny, because, actually, the person I heard use this language is one of my favorite doctors and is really an amazing doctor. And so good people can use language like that, and I think we need to stop. But I almost used it affectionately because I learned a lot from this doctor. And as the doctor actually had very, very high clinical standards, and I admired that about them. But I'm an expert in testicular cancer. And sort of the word on the street among doctors who test testicular cancers is that the challenge is you have these men in their 20s who don't take their health care seriously and they won't follow your advice. And so they get referred to as "knuckleheads," which is not a word we should be using. But that's where I came from. I didn't make that up. It's a word I had heard in my practice.
Dr. Lidia Schapira: Let's talk a little bit about why you were called in to see this patient. He refused therapy and you were called in to go and have the conversation that will make him accept therapy because refusal of therapy seems unreasonable. Help us understand a little bit about how somebody should think about a patient who refuses therapy. Broadly, it seems your advice is to go in and get the story, and the story will explain things many times, but tell us a little bit more about that.
Dr. Timothy Gilligan: Yeah. The patient was sent to me because I'm the local expert in testicular cancer. And the thought was that the oncologist could get the patient to go along with the treatment that was recommended. And I realized shortly before I went into the room, I was all geared up to marshal all the evidence and all the facts and to explain to him why he needed treatment no matter what. And I remember when I was in training a surgeon, once I was in the room with them, I was talking to a patient and the patient was talking about how complicated it was to get through the treatment. And the surgeon said to the patient, "Well, you know, right now the only thing that matters is your cancer." And I remember thinking, well, that actually may not be true because people have lives. They have to pay their bills, they have a job, they have a family, they have kids they're worried about. For us, it's easy to say ‘your cancer is the only thing you need to worry about,’ but often it's not. And so I think what helped me with the patient was to sort of pause before I went into the room and think, what's the story here? What don't I know yet that I need to know? And how can I find it out?
Dr. Lidia Schapira: And you tell the reader that you relied on advice you'd received from an attending years before, that also warned you that if you say too much, you could be making things worse. If you open your mouth, you could potentially contribute to whatever the tension was that had created this impasse to begin with. So you slowly sort of let the patient tell you the story and you're drawn in. Tell us a little bit about what it feels like to be drawn into this patient's story, somebody who had already been labeled as being perhaps difficult or refusing a life-saving therapy.
Dr. Timothy Gilligan: Well, honestly, I ended up being really surprised. And I think the issue you're talking about that what it reminds me of is when I was early in my career, I found it very confusing that I would have patients who really loved me and was glad I was their doctor, but then there'd be some patients who it felt like they didn't really love me and they wish they had someone else as a doctor. And I tried to figure out, like, I'm doing the same thing. Why am I getting such different reactions? Then, of course, the obvious explanation is I'm seeing all these different people who want different things. And I think going into the room with this sense of, before I say anything, I need to figure out who I'm talking to, because a given approach will work with one person but not with another. And if I can figure out who's who and tailor my approach to the individual, I can have much more success. And so it got me in the habit of trying to really start with listening and listening and watching. When I work with fellows, what I try to get them to do is just really observe carefully. So rather than put their energy into talking, put their energy into watching and listening and figuring out: “Who is this person? What kind of day are they having? What do they need from me? How can I be helpful to them? How can I speak to them in a way that they'll feel like I'm on their side and they can trust me and I respect them?” and all of that. And so the shorthand for me is to go into the room with curiosity and find out, who is this person? And I figured that out not by talking, but by listening to them. That's how I got him to tell me his stories. I just asked him, like, "I hear you don't want chemotherapy. Tell me what's going on." Then I heard this whole story.
Dr. Lidia Schapira: And his story is heartbreaking.
Dr. Timothy Gilligan: It is.
Dr. Lidia Schapira: He's been abandoned by his wife. He's got to support the kids. He's got to work in the summer. And it's not that he doesn't want to live. He just doesn't see a choice here. And you say in the article briefly that you were moved by the story, and tell us a little bit more about what happens to you when you're moved by a story.
Dr. Timothy Gilligan: I became a little bit emotional. I don't think I really cried, but I paused for a moment to kind of catch myself. I think particularly I brought a social worker into the room to help with what was going on and the nurse I work with closely. And I told them the story. I actually thought that ended up being effective. It wasn't really something I had planned, but I wanted to get them up to speed and I didn't want to make him tell the story again. And so I told his story to them and I thought what was effective about that was, first of all, it let him know I really heard it and I got it. And it wasn't the story of the medical facts, it was the whole story. But when I told it, I realized what a sad story it was and how unfair.
Dr. Lidia Schapira: So, Tim, let's talk a little bit about that. In the course of the work that we do, we are deeply moved and touched by the stories of the people that we treat, the people whose diagnoses we are experts in. But their lives are really their own and they share things that are incredibly intimate with us. So tell us a little bit about how you have, over the course of your career and as self-aware as you are, dealt with the emotional load.
Dr. Timothy Gilligan: The other thing I tell fellows is I think it's really important to have hobbies outside of medicine. I think you have to find a way to recharge your batteries. But if you don't care, if you try to protect yourself by not caring, then you're missing out on the meaning of the work.
I have a short anecdote I can share that really had a big impact on me. When I was in my first years of attending, I was treating a man with testicular cancer. And we tried and tried and tried to cure him and kept thinking we were going to be able to, but his tumor ended up being really very resistant to treatment and eventually it was not curable. And he was in the ICU. I think he had an infection, this complication from treatment, but it really was game over at that point. It was appropriate, medically appropriate, to withdraw care. We were just going to torment him to keep him on life support longer. And I went to the meeting with his mother and his sister and this attending who had supervised me, who I admired greatly, one of the people who changed me when I was an intern and I was in the ICU, so he's the ICU attending. I'm there as the oncologist, I'm kind of running the family meeting and I tell them I don't think there's anything more we can do medically, and it's time to withdraw life support. And I started to cry, and I felt really embarrassed because here's this attending who I admired so much, and gosh, Tim Gilligan can't even keep it together in a family meeting. And I felt a little embarrassed. But I really cared about this patient. I'd known him for a year and a half, and the family agreed, and withdrew life support and he passed away. And I ran into his sister about six months later, nine months later in the grocery store while shopping, and we talked for a little bit, and she said that what made them feel okay about withdrawing life support was the fact that I cried.
Dr. Lidia Schapira: It's a beautiful story, and thank you for sharing that. We often talk about the therapy of connecting with a patient, but connecting means connecting at an emotional level. And it's sort of disingenuous to think that we can do that without feeling and personally being affected by that.
When I was training, Tim, before we formally taught communication skills or integrated palliative care and talked about self-care, the advice I got from my attending was that you just go for a run as a way of recuperating. And I remember from a prior interview I did with you that you like to play tennis. Do you go for a run? Do you play tennis? And do you have any other advice for colleagues, especially junior colleagues who are just entering this field and realizing that connection means engagement. And engagement may mean loss and grief because we care.
Dr. Timothy Gilligan: So I do still play tennis. And what I love about tennis is that I can't think about anything else when I'm trying to hit a tennis ball. It's the best I can do. I can't meditate. But tennis is like meditation for me because I'm not obsessed with winning or losing. I do try to play good tennis. I like to hit a good ball, and that requires a lot of attention and a lot of focus, so it gets my head out of it. And then I also just think the stress relief. I mean, I can be aggressive on the tennis court in a way that's not socially acceptable to be aggressive elsewhere. I can hit that ball as hard as I can and not do any harm to anybody. So I think that stress release is really important. I think exercise, the benefits of running. I mean, there are so many benefits, psychologically and emotionally, to exercise and really being in your body. So I think some way of recharging your batteries.
And what I worry is that sometimes you get this model of keeping our distance, our professional boundaries, and not get in too deep, not caring too much. And I actually think, as I said before, that the meaning of this work is caring and connecting. And so then if you're going to be drained in some ways, you have to figure out how to fill yourself back up. The risk is that there's a sort of ethic in medicine where you give everything to your job. But you burn out if you do that. So it's the feeling that it's okay to go play tennis, it's okay to go for a run. It's okay to read poetry or meditate or cook or do whatever it is that refills your tank. I think it's so important in this work to prioritize that and make room for it. Let’s not take pride in being a workaholic and working all the time. What I have observed is that those people become less effective as physicians, at least in terms of the humanism of it.
Dr. Lidia Schapira: I couldn't agree with you more.
I'm wondering if you can also tell us a little bit about how you think storytelling and narratives in oncology can also help create a thoughtful and more supportive community. And that’s a lot of what we do here in publishing some of these stories.
Dr. Timothy Gilligan: Yeah, it’s a great question, and an important one. I'm not going to say anything original here, but I believe very strongly, as many people have written, we understand our lives as stories. We understand narratives. We organize ourselves around stories to a large extent. And one of the things I think that is a powerful question to ask myself often in life is, “Am I telling myself a story? Is that the best story? Are there other versions of that story that may be more true, or other stories that are equally true that may enrich my understanding of something?" And so I think storytelling is complicated. Sometimes we tell ourselves false stories. Sometimes we tell ourselves moving stories. But I think one of the things that we see in this work is that life has sadness in it and life has loss in it, and the solution isn’t to hide from it or protect ourselves from it, but I think just to see the best part of the human experience and sometimes the deep meaning in it.
And one of the beautiful things all of us in oncology see with some patients, not all patients is how, when faced with a life crisis, is the sudden clarity about what really matters. And oftentimes relationships deepen and people appreciate the beauty of their connections with others. Diving in and really hearing these stories, getting to know our patients as people is where the richness of the work is. And that's why people go into oncology. When you read applications from residents who want to be fellows, most of them talk about how moved they were working with cancer patients. And I think hearing their stories is a part of that work. And if we stop doing that, we are missing out on what actually made us go into the work in the first place.
Dr. Lidia Schapira: And that's one of the things that struck me about your narrative in that it's not just a lesson in communication or a plea for listening to patients and treating them humanely, even when they seem to refuse therapy, but that you actually talk about being moved and bringing yourself into this and taking the time to connect with the patients. In addition to the fact that in the two cases that you describe here, by doing that, you actually solve the puzzle. You figured out why it was that they either delayed or seemed to have refused treatment when, in fact, both of these people very much wanted to live and had a lot to live for.
Dr. Timothy Gilligan: Yes, that's right. The second case was a much less typical one for me. What was interesting for me about that was that it was the first time I really brought the issue of race and racism into a conversation with a patient. I struggle with that because I know from the medical literature and I know from talking to people I know, as well as patients I've taken care of, that people do encounter sexism, racism, and other forms of bias in healthcare, and we are often scared to talk about it. The reason I wanted to write about that case was that the patient really handed it to me on a platter. She couldn’t have made it easier for me to name it. And it was amazing to me how it transformed the interview after I named it. I went from being treated like there’s no trust. I tell you, it felt very antagonistic interview up until that moment. And then suddenly we connected. And that was interesting because when she was walking out the door - I didn’t put this in the essay - she looked at me and she said, "Now I know why I was referred to see you."
Dr. Lidia Schapira: What a wonderful, wonderful endorsement. I'm sure that made you feel very good. How do you use your experience and the knowledge that you have accrued over years now of practice to teach your students, residents, fellows, and even your peers to be present, to call out injustice, to form important therapeutic alliances with patients? How do you actually do that every day?
Dr. Timothy Gilligan: I don't think it's easy. I think the easier part of it is to enter the room with curiosity and to be attuned to the fact that there are things that you don't know yet that we need to know, that the patient is an expert in their own experience and the patient is an expert in their own body. And if we go in with that humility, that we have medical expertise and they have expertise in their own self and their own lives, that we can work together as a team and try to break down some of the power differential. I think that helps a lot. I think there are certain questions that can be helpful to ask like, "What has your experience in the healthcare system been?" Because oftentimes, we assume one thing, and the patient's experience has been very different.
I've been influenced recently by work in trauma-informed care. A shorthand sentence for trauma-informed care is that we shouldn't ask, "What's the matter with you?" We should ask, "What happened to you?" And then if a patient is acting in a way that seems odd or difficult to explain, or simply difficult to put up with, we might ask ourselves, "What happened to them that this behavior actually does make sense?” And that if we approach it with sympathy and hear their story, we can work with them more effectively. It doesn't mean we should put up with intolerable behavior, but that oftentimes the behavior or the decision-making starts to make sense if we get more information and find out more and come in with a less judgmental attitude and more curious attitude. It's hard, and I don't have a simple answer, but I do think those tools, curiosity, listening, humility, and recognizing that the patient is a different person with a different experience of the way they are navigating through the world, even if it doesn't make sense to us, does make sense given what their experience has been.
Dr. Lidia Schapira: Tim, I certainly appreciate and am so glad that you continue to think about these problems, that you write about them, and that you make it sound simple for us to connect with our own sense of vocation and to try to bring everything to the bedside, not just a list of new therapies. So thank you for that, and thank you for sending your work to us.
Dr. Timothy Gilligan: Thank you for having me today. It's been a pleasure talking to you.
Dr. Lidia Schapira: And with that, 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.
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. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Show Notes:
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Guest Bio:
Dr. Timothy Gilligan is Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute.
Listen to ASCO’s Journal of Clinical Oncology essay, “The Power of Story” by Dr. Erica Kaye, Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. The essay is followed by an interview with Kaye and host Dr. Lidia Schapira. Kaye shares her strategies to grow the field of narrative oncology.
TRANSCRIPT
Narrator: The Power of Story, Erica C. Kaye, MD, MPH (10.1200/JCO.24.00013)
Everyone knew the baby was dying. The data were overwhelming, indisputable. Widely metastatic cancer, multiorgan system failure, a belly grotesquely distended by tumor and blood and gangrenous guts. “A corpse on a vent,” the nurses whispered outside the room.
Swaddled in the crib, a distorted body hidden neatly by crisp sheets, the baby's sweet face peeked out, cherubic and still. Her mother stared fixedly at her peaceful, doll-like face, and no amount of data presented by the medical team could persuade her that the child was nearing the end of life.
My job was to get the DNR. Swathed in a paper gown, gloves, and mask, I hovered in the doorway. The baby's mother sat in a chair beside the crib, hands over her eyes. I knelt on the floor at her feet. “I don't want to hear it,” she said, without looking at me. “I don't need to know the statistics. My baby will live.”
Oncology is a discipline driven by evidence. Quantitative data inform our treatment recommendations, prognostication, development of novel therapeutics, allocation of resources and funding, and scientific communication. We enumerate and measure variables and outcomes with the imperative goal of advancing science and strengthening our clinical care.
As a research scientist, I believe in the power of data. We cannot cure cancer, optimize quality of life, or improve end-of-life care without rigorous investigation.
Sometimes, though, I wonder if our profession's appreciation for the collection, analysis, and reporting of data causes us to overlook another profound and vital tool at our fingertips—the power of storytelling.
For me, a story is an account of the consequential parts of a person's life. It may spotlight a history of present illness or underscore a lifetime of illness. Sometimes, a story focuses on a singular decision; other times, it zooms out to explore the vast nuances of our complex lives—joy, suffering, love, loss, belonging, grief, and hope.
As a pediatric palliative oncologist, it's my role and privilege to bear witness and make space for the stories that honor people's lived experiences. Over the past 20 years, I've grown to believe that listening to and sharing stories is more than just the bedrock of humanism in medicine. It is also a powerful and effective tool for the effective practice of quality health care.
In my experience—for our patients who are suffering, their caregivers who face impossible decisions, and our colleagues who struggle to do no harm—knowing the data is rarely enough to navigate the terrain of modern medicine. We need stories to find our way, to reach people where they are, to help one another process devastating experiences, to choose a path forward and find the strength to put one foot in front of another.
“I hear you,” I said quietly, looking up at her. Her hands balled into fists, still covering her eyes.
“We won't talk about the numbers today.” Minutes passed, as we listened to the whir of the ventilator. Slowly, her fists unclenched, and her red, raw eyes met mine. “She's not a number,” I said softly. “She's a precious, cherished baby. She's her own person, not a percentage. She has a unique story, and I'm here to listen.”
Arguing for the power of stories may sound poetically naïve, even reckless to some. I've heard colleagues criticize narratives of illness experiences as irrelevant, outliers, or misleading. We are quick to discount stories that do not align rigorously with peer-reviewed published data. The term anecdotal evidence is often wielded pejoratively, with the implication that the anecdote inherently lessens the value of the evidence.
Yet after many years in medicine, I now believe that stories are not just useful, they are essential. Listening to and reflecting on patient stories gifts us an otherwise elusive power to minister to suffering, connect meaningfully, influence decision making, and offer healing encounters, in a way that data provision alone cannot do.
I personally have seen the power of stories shift mindsets, grow solidarity, change culture, and shape policy. Sharing my own vulnerable stories about grief, infertility, pregnancy loss, sexism, abuses in our medical education system, and other uncomfortable topics has opened doors for difficult dialogue, driven problem-solving, and affected systemic changes, both within my institution and on a national level. I think it is our responsibility, as cancer care professionals, to recognize, practice, and leverage this power with purpose.
For me, on an individual level, the repetitive act of listening to stories has fundamentally changed me as a clinician and person. Being on the receiving end of another person's story compels me to slow down, to question my own heuristics and biases, and lean into my own vulnerabilities. The practice of telling my own story deepens my capacity for self-reflection, humility, and mindful presence. Sharing others' stories encourages me to lend compassion, patience, and grace to all of us enmeshed together in this chaotic, messy health care space. Collectively, all of these practices help me reflect on my boundaries, examine ethical situations with empathy, and reframe my role and responsibility as a healer.
As a scientist, I also think that the power of stories extends beyond the bedside. The most rigorous and impactful research studies are often those inspired by the stories of patients and families. Early in my career, I sat down with a group of bereaved parents to hear their thoughts about my research concept. Their vivid stories about communication between the medical team and their family directly shaped my research question and study design for the better. More than a decade later, listening to stories from patients, caregivers, and colleagues continues to help my scientific team develop holistic aims, hypotheses, and methods; implement study procedures that respect the person over the disease; and analyze and synthesize findings that honor and elevate community voices. Storytelling also strengthens my scientific writing, reminding me to not get lost in the weeds and simply tell a narrative that cuts to the heart of what matters to our community.
Yet the art of storytelling carries relatively little prestige or social currency in the field of oncology, particularly when compared with evidence-based practice. Oncology training rightly emphasizes the development of rigorous skills in collection, analysis, and interpretation of data; fewer aspects of our training incentivize us to value the art of storytelling. I worry that this is a mistake.
In my opinion, we spend substantial time teaching our trainees what to say and not enough time teaching them how to bear witness and listen. We have drifted too far from the core philosophy of Hippocrates, who believed that careful listening to patients' stories held the key to revealing diagnostic and therapeutic truths.1 Rooted in Hippocratic principles, the first clinical skill that medical students practice is how to elicit a patient history, listen actively, and reflect on a patient's unique story to develop a problem list, assessment, and plan.
At the core of each patient encounter is the fundamental concept of narrative competence, comprising a clinician's skills with respect to bearing witness to, acknowledging, interpreting, and sharing stories.2 About two decades ago, the field of narrative medicine, or medicine practiced with narrative competence, was popularized and championed as an approach for teaching and sustaining holistic, person-centered health care.3 Today, a growing literature shows us that training and practice in narrative competence has the potential to improve communication, collaboration, empathy, mindfulness, and professionalism in medicine. In the field of oncology, multiple studies have investigated the feasibility, acceptability, and impact of interventions such as reflective reading and writing, oral and visual storytelling through art and music, and experiential learning sessions on narrative competence for cancer care professionals. While mostly single-site studies, the findings suggest that narrative-based interventions can foster mindfulness, emotional connection, and solidarity; improve self-awareness and self-compassion; encourage personal satisfaction, sense of accomplishment, and overall well-being; improve ethical decision making; strengthen collaboration and teamwork; bolster resilience; and mitigate burnout and secondary traumatic stress for cancer care professionals.4-10
Yet clinicians often face barriers to the integration of narrative-based approaches in education and clinical practice. Lack of time, resources, and support are commonly cited as roadblocks to incorporating storytelling in day-to-day activities. Templated notes may hinder the dual, interrelated processes of listening to and documenting patients' stories, reducing lived experiences to a litany of check boxes. Despite these challenges, simple exercises can increase narrative competence with minimal time or effort. Even a short, one-time session of reflective writing can help health care professionals explore and learn from difficult clinical experiences with seriously ill patients.11 For those who don't enjoy writing, the brief act of reviewing patient narratives can be impactful: for example, oncologists who spent a few minutes reading digital stories written by patients with cancer reported positive changes in their patient-clinician relationship, a heightened sense of empathy and intimacy, a greater appreciation of the patient as an individual, and rehumanization of health care work.4
For narrative-based approaches to grow and thrive in our field, though, we need clearer definitions of what constitutes narrative practice in oncology. I suggest that narrative oncology should encompass the purposeful practice of eliciting, listening to, reflecting on, creating, or sharing stories about the cancer experience, told through diverse mediums, with intentional integration of these acts in clinical practice, research, and educational arenas. Narrative-based approaches or interventions in oncology should comprise a spectrum of deliberate activities including reflective reading, interpretation, discourse, and writing practices designed to emphasize and promote self-awareness, compassion, and humanism in cancer care.
I encourage us, as a field, to respect narrative oncology as a unique corpus of knowledge, comprising content experts to inform its relevant applications to education, research, and clinical practice and governed by its own criteria to assess competency and impact. We can appreciate that the aims and skills underpinning expert narrative oncology practice may overlap with other areas of expertise, such as communication skills training, while recognizing the distinct competencies required to engage in, role model, facilitate, teach, and study narrative practice in oncology.
Each time that I listen carefully to a patient's story, or share my own story with others, I feel myself grow as a clinician and as a person. It can be tricky to measure or prove this growth, and some people may argue that quantification belies the spirit of narrative practice. Personally, I believe that, for the field of narrative oncology to grow in legitimacy and impact, we need to develop some consensus standards and collaborative approaches to demonstrate value to naysayers. I am hopeful that oncology, as an evidence-based field, can rise to this challenge. At the same time, we should anticipate a priori that we won't be able to capture every intangible impact, and lack of data must not discourage us from advocating for the importance of stories in cancer care.
Certainly, changing the culture around storytelling in oncology will not be effortless. I believe that a multipronged strategic approach is needed to grow credibility for the field of narrative oncology, and I encourage colleagues to consider supporting the stepping stones outlined in Table 1.
I hope that we are reaching an era in modern medicine when the power of listening to and telling stories need not be controversial; it is time for the field of oncology to be proactive and purposeful about legitimizing, teaching, and practicing storytelling across clinical, education, and research settings to benefit patients, caregivers, clinicians, researchers, and communities.
When I think back on that difficult DNR conversation years ago, I remember none of the data informing our high-stakes medical decision making. I don't recall the odds of further disease progression or third-line treatment efficacy. I do remember, though, each story that the mother shared, as I knelt at her feet, listening quietly. She told me stories about hope and faith. About fear and despair. About family and resilience. In the end, I got the DNR, but I left the room with so much more.
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 am your host, Dr. Lidia Schapira, a Professor of Medicine at Stanford University. Today, we are joined by Dr. Erica Kaye, the Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. In this episode, we will be discussing her Art of Oncology article, "The Power of Story.”
At the time of this recording, our guest has no disclosures.
Erica, welcome to our podcast and thank you for joining us.
Dr. Erica Kaye: Thank you so much for having me. I am so glad to be here with you today.
Dr. Lidia Schapira: It is such a pleasure. Before we dive into the content of this beautiful essay, and a call to action in a way, tell us a little bit about your relationship to writing as a physician both in training and now in practice and also as a researcher and educator. What role does writing have for you as a person?
Dr. Erica Kaye: That is such an important question, one that I am not sure I have ever been formally asked before so thank you. Thank you. So transparently I studied English as an undergraduate and focused specifically in poetry for my Bachelor of Arts degree. And so I spent a lot of time during a formative period in my life thinking carefully about language and writing, about the construction and also the analysis of words and how carefully we choose them to communicate and share a message. And then when I entered into medical school, I spent a lot of time thinking about the power of language, about the ways in which the words we choose convey a profound meaning and enable us to connect with others in incredibly powerful ways. And I was fortunate, through some luck, to encounter the field of palliative care, which is anchored in the power of language and communication. And so for me, it was a natural marriage of the things that I felt so passionate about, learning communication and conveying stories through words and through body language in order to connect meaningfully with patients and families in a very sacred space at the, arguably the most difficult and stressful times in their life.
And so as I now train other students and many come through our clinical and research programs, from undergraduates to graduate and medical students and residents and subspecialty fellows, we really emphasize the importance of storytelling in the work that we do in medicine and in research, and I would argue as people of the world, and try to help students understand that the ways that we construct narratives about our patients, about one another as colleagues, about the world in which we work and live in, the ways that we construct and reflect on those stories, so powerfully influence how we feel in our practice and how we collaborate with one another in the work that we do. And for some of us, we can connect really deeply with that message through writing. And through others, we can act through oral storytelling, or through mindful listening and reflection. So there are lots of different ways to engage in the creation and sharing of those stories.
Dr. Lidia Schapira: So, Erica, let me just go a little bit deeper into this and into the personal meaning for you. You talk about poetry, and the one lovely thing about poetry is that you have to use very few words to get out the essence and meaning of your message. So for you, does writing or reflecting through storytelling bring you joy, lighten some of the emotional burden perhaps that we carry because of the work we do? Tell us a little bit more about it from a very personal perspective.
Dr. Erica Kaye: That's a fascinating question. I am not the kind of person who would say that the practice of writing itself brings me joy, although sometimes it does. But I think, for me, the joy comes in the practice itself, from the knowledge that something I write will connect with another person. And so I think a lot in my practice, as I'm choosing carefully the words that I want to place on a page for others to read or hear, I think about how that might resonate or create meaning making for somebody else.
Dr. Lidia Schapira: So you talk about intentionality as well, right? That seems to be what I'm hearing you say, intentionality and putting effort into actually thinking through this instead of it being perhaps an automatic process. That's incredible. And I would say that the other thing that I'm hearing you say, maybe you didn't frame it exactly like this, is that in the act of choosing your words, in delivering and crafting a message, you're also showing some wisdom or appreciating the wisdom that can come from the proper telling of such stories. Is that- does that get at it, or am I making this up?
Dr. Erica Kaye: I think that’s true. And I also think that I find something sacred about the idea of being able to connect in a meaningful place with somebody who I may not know. And sometimes there's conscious, purposeful direction towards that moment. And sometimes I think it may be unconscious trying to create a message or a feeling for the idea or the hope that someone may receive it on the other end.
Dr. Lidia Schapira: That’s a beautiful thought. Turning back to the title you chose for the essay is about power, so let’s talk a little bit about power. As I see that is one of the central messages that it’s not just about releasing our own emotions onto a page, but it’s also about leveraging some of the power that we have to implement change or to help others. You talk a lot about the elusive power but you also talk about very concrete benefits of storytelling. Can you tell us a little more about how we should think about that?
Dr. Erica Kaye: I love the word ‘power’, and not because of the way in which it’s traditionally used in a unidirectional approach wielded by someone against or on another, but because of the root. So I think of empowerment and how important it is for people to feel like they own and can share their power. And so I think the reason I chose that title was a purposeful and directive reminder to the reader that we all share in this collective power, so that title becomes then in and of itself a form of empowerment.
Dr. Lidia Schapira: That’s a very important and relevant message. You also talk about the fact that telling stories has generally been devalued within our professional community because it is dismissed and put in the same bucket as anecdotes. And anecdotes, we have all been trained are sort of bad when we’re at the bedside making recommendations. Can you untangle that for us a little bit, see story from the anecdotes, and the power that comes from storytelling and how it is different from the aspects of anecdotal medicine that we have been taught to set aside?
Dr. Erica Kaye: I think that’s a complicated question. For me, there is not a whole lot of difference between the data point, an anecdote, which I agree with pejoratively characterized and the story. And a lot of these are semantics and how we choose to present information to shape a message that conveys how we think or feel to influence the people we care about around us. And in our profession of oncology, I think we have over relied on quantitative data points to do that task of conveying a message that’s important to us to influence the people around us, and for good reason because our clinical trials are reliant on these data, that inform our next steps, how we practice, how we advance our field so that we can better care for our patients and families. And I also believe there’s huge value in the anecdote. For me, an anecdote is a story of how an individual experienced something or how we observed someone experiencing something. And I think there’s huge value in listening to our colleagues share an anecdote about something that happened when they treated a patient or hearing a patient or family member share an anecdote about what they experienced in this space. And I think these anecdotes contribute to the practice of medicine as an art and not simply as rote progression to an algorithm founded exclusively on data.
And maybe it’s semantics, but for me, I think, when we capture all of this information and reconceptualize it as a story, it somewhat levels the playing field. For me, when you tell me a story that’s rooted in quantitative data about why this information is important to you and conveys a message to influence someone that you care about, that’s very meaningful, and I want to listen to that story. And similarly, when someone shares a story rooted in more abstract information about their personal experiences, what they see, feel, think, perceive, wonder, hope, worry about, that’s also incredibly important information that I want to create space for and integrate into how I think about sharing a story about something I care about to influence others.
Dr. Lidia Schapira: And you say in your essay that that requires competence or it requires a series of skills, and study and preparation. Tell us a little bit more about how one gets to be competent in telling a story in such a way that you just did that really becomes a tool and is in and of itself a powerful tool.
Dr. Erica Kaye: That is a really important question. And I like to start by debunking the fallacy that I think many of us carry, at least internally, it’s a message that gets socialized, this idea that you are either good at this sort of thing or you’re not good at it. And I think that that is largely baloney. I think that some of us intrinsically tend more towards active listening and the art of storytelling resonates with us. And because of that, we lean into it more and have more opportunities to practice, mess up, think about it, practice again. And maybe others intrinsically are less drawn to it and therefore have fewer of those opportunities to practice, mess up, and try again. I really believe though that all of us have the ability to become excellent, impactful, effective storytellers in medicine and in our lives. And I think that practice is arguably the single most important practical component or ingredient. However, in order to create those spaces for practice, facilitate it, be open to it, I personally think that the most important attributes to name for people, to hold them accountable to our humility and vulnerability, and unfortunately, medicine and science do not incentivize us to lean into either humility and vulnerability. And so I think there are a lot of opportunities for us as we role model in medicine and in science, as we create opportunities for learners, for us to be more verbal about socializing those terms as positive attributes so that we can grow together in this space.
Dr. Lidia Schapira: So, Erica, I am hearing you talking about a cultural change, that the culture is not oriented towards some of these values that you say that are sort or essential or underpinnings for promoting storytelling and opening ourselves up to that more expressive part, whether or not we are wonderful with words as you are or not or struggle to put them together into an understandable sentence. Can you talk a little bit about the table that you provide in your article and the very practical suggestions that help us think more about this in practical terms about, again, moving the culture slightly away from what you described as the status quo which is more aggressive and puts down the story and one that values the story and cultivates traits such as humility, openness, and curiosity?
Dr. Erica Kaye: Thank you. I think, like many things in our world, the answer often lies in growing a new generation, who thinks innovatively and often differently than we have historically. And that doesn’t mean that we give up on ourselves or our peers, our seniors. It means that we empower and listen to the lessons that we can learn from the people coming up after us. And in doing so, they will shape and change the culture in our present as well as for others in the future. And so the table, I think, focuses on a few areas. First, is the idea of integrating the arts and humanities into education earlier, and reconceptualizing what we mandate as essential prerequisites for a career in medicine and science. So, why do we feel so compelled to say that Physics is an absolute requirement in order to apply to medical school, yet understanding the art of communication is not? What are the opportunities at an undergraduate level for us to rethink how we encourage students in this very formative time to begin shaping their influences and prioritizing their interests and what they feel to be most valuable in shaping who they become on their journey?
I also think there are concrete opportunities for us to be empowered at an institution or center level where we can have one on one conversations with our peers, with our leaders about our personal experiences with the power of storytelling, how it shapes our profession in real time and the value that we derive and that we see the potential for learners to derive. And then I think there are concrete strategies for us to think bigger on a national level leveraging our professional organizations, making sure that we have purposeful space for these types of narrative medicine experiences at our national meetings, that we create special interest groups and forums that facilitate and foster the coordination of networking and mentorship and sponsorship around these meaningful topics. And that we think carefully about our avenues for scholarship and hold our medical and inter professional journals accountable to valuing the human centered experience as much as we value population level data
Dr. Lidia Schapira: So, my final question, of course we can go on chatting for a long time but just to bring this podcast to a close, Erica can you think of perhaps an Art of Oncology essay that we've published that sort of opened your thinking up in new ways or that really impacted you, touched you, or moved you as a reader?
Dr. Erica Kaye: Absolutely. There have been many pieces that have touched and moved me, and so without lessening the impact of all of the others, I might mention a piece entitled "Knuckles," about the experience of, I believe, a radiation oncologists, who felt challenged in connecting with the lived experience of one of her patients who came from a very different set of circumstances than her, and espoused beliefs that she found abhorrent and the effort poured into connecting on a human to human level and the ways in which that connection can be so powerful in shaping minds, changing biases, opening our eyes to our collective human experience. I found that piece to be very beautiful.
Dr. Lidia Schapira: I am getting chills and a little misty as I hear you talk about it. So thank you for reading, thank you for writing, thank you for sending us your work and for everything that you do in this field.
Dr. Erica Kaye: I am so grateful that JCO creates this meaningful, important space for oncology healthcare professionals to appreciate the power of story in oncology
Dr. Lidia Schapira: Thank you, Erica. And until next time, thank you to our listeners 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/podcast.
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. Guests' statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Show Notes:
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Guest Bio:
Dr. Erica Kaye is the Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital.
Additional Materials:
Table 1
Knuckles, by Kathryn Hitchcock
Knuckles podcast
Listen to ASCO’s Journal of Clinical Oncology poem, “Etch a Sketch” by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. The poem is followed by an interview with Tong and host Dr. Lidia Schapira. Tong shares her thought process behind her fictional poem, where a mother and daughter receive bad news of a leukemia diagnoses.
TRANSCRIPT
Narrator: Etch a Sketch, by Wendy Tong, MD
You are only seventeen when you first learn its meaning.Just moments before, you sit in a white-walled roomwith your mother by your side. You have been losing weight.You have been feeling dizzy; you have been bedbound with colds.You have been waking up with the taste of blood,finding dried crimson on your pillowand tiny red freckles smattering your skin.
In the middle of the waiting your mind drifts backto when you were younger, when the thing you liked bestto play with was an etch a sketch. You would maneuver the knobsto draw lineographic pictures with an invisible stylus—a whole world of possibility pixelated into a gray two-dimensional screen.If you made a mistake, no matter. The image would blurwith a few simple shakes; if no one saw it, did it ever really exist?
When the doctor returns, you try to brace yourself but findyour defenses dissolving as he delivers the message. This is the moment you learn the meaning of tragedy. It is a fortune-telling, it is a sentence.Your mother’s face pales. You simply stare at the hands in your lap—hands that have just learned to love. Hands that have fumbled to make art; hands that could not help but hold onto hope. A whole world of possibility suddenly goes dark. If only this screen could be shaken, this gritty image erased.
As you watch your mother’s tears fall, you retreat to a safer placeinward, where you are free to sketch the image of the two of youat the kitchen table just that morning, before things changed.
In a single movement you pencil in the harsh slantof your own angled cheekbone. In another, you etch worry linesinto your mother’s forehead for age to deepen.This is not the future that she dreamed for you.
But there are things you cannot capture with two-dimensional strokes.What of the way the sun had hit the glass saltshaker, or the slowing of light. The way refraction had scattered rainbow flecks across your mother’s cheeks like celestial confetti, the grace of an unseen angel.The way the coffee was still warm against your lips. These are the things, you realize now, that will sustain you. You reach for her hand and she grasps back, tightly.
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, Professor of Medicine at Stanford University. Today we're joined by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. In this episode, we will be discussing her Art of Oncology poem "Etch-A-Sketch."
At the time of this recording, our guest has no disclosures.
Wendy, welcome to our podcast, and thank you for joining us.
Dr. Wendy Tong: Thanks so much for having me today.
Dr. Lidia Schapira: So let's start by talking a little bit about your writing, you are going through your medical training, tell us what writing does for you.
Dr. Wendy Tong: I first started getting into writing poetry, or writing in general, about halfway through medical school. I was always inspired to write after a specific patient encounter, sort of as a way to capture something human that I had noticed about them - a specific detail, mannerism, or attitude - something that I wanted to appreciate and remember. When I started, poetry was a good way to capture those little glimpses separate from writing more narrative essays where you are able to get in more of the medical details, history, and the whole complex course. So, I've found solace in being able to reflect on experiences through both mediums. But I do find that it's a good way for me to process how patient encounters went or what a specific patient meant to me, and it's a way for me to remember them as well.
Dr. Lidia Schapira: Let's talk a little bit more about poetry and how it allows you to get these glimpses or perhaps capture an emotion or a scene. Tell us a little bit more about that choice to tell a story, in this particular case, a moving scene, through poetry.
Dr. Wendy Tong: I can still remember the very first poem I attempted to write. It was in medical school, I was actually rotating on a palliative care elective. And this very sick cancer patient, she was a very thin and cachectic, but the first thing I noticed when we walked into her room was she had these amazing nails - glittery, long, and gold and they’re beautiful. So that’s something I noticed and I commented on, and she said it’s what makes her feel human still and what still keeps her going, even though she was so sick. That detail stuck out in my mind, and after I left the room, I ended up typing up a little blurb about this detail I noticed on my phone. And that ended up becoming my first official poem I’d written about a patient, first poem in general, actually. When I'm able to be in the moment or in the present and notice and observe things, I think that's where the inspiration strikes so to speak. It's something human, it’s some kind of connection that I like to reflect on and remember. So, I think that's what makes poetry so powerful and helpful in those ways. Sometimes I don't have a full story to tell, or I just want to capture one moment and how it made me feel. So I think poetry is really powerful in that way.
Dr. Lidia Schapira: You're making a very good case for narrative and medicine and that is all about observation and, sort of as you say, capturing it in whatever art form you use. So my question now is a little bit about that creative energy that seems to be flowing from you, that maybe starts in a moment of connection or in a moment when something just captures your imagination, and then you express it. Tell us a little bit about how you've incorporated that into your life as a physician, maybe starting as a medical student. I'm going to the "Why do this?" What does it do for you?
Dr. Wendy Tong: That's a great question. I'm an only child and grew up loving reading and being very into books. As a child, sometimes my parents would come in and be like, "Why is your light still on?" So I would block out the light from under my room because I'd be up all night reading. When I was young, I wanted to be a writer. At that time, it was just novels or whatnot, but I never really pursued it. So I would take a creative writing class here and there in college, but never found the subject material that made things click for me so to speak. And I remember in my gap year before applying to medical school, learning about the field of narrative medicine, which is still ever growing, and reading Atul Gawande's books, obviously, non fiction, but it opened up a whole new world for me, combining these two passions - writing and medicine. So I don’t think the inspiration struck until having actual patient encounters. The first half of medical school was a lot of textbook learning and classroom. And it’s not exactly inspiring.
It wasn't until my actual medicine rotation that having the human component and specific encounters were very inspiring so to speak. I think it’s one patient for me who made me decide to go into internal medicine, and also later I realized is inspiring me to want to become a palliative care physician actually. And the first patient I started writing about is also the same patient who, in my third year of medical school and on a general medicine rotation, the first patient I’d grown very close to and who passed while I was helping take care of him. We are able, as medical students, to spend a lot more time with patients.
So I remember in the early mornings when it was still dark out, I’ll go into his room while I was pre-rounding and chat with him. He would tell me about how tired he was. He was quite sick. He had neo pulmonary hypertension and high output heart failure, and all these things, he had a chest tube in. And each morning, he would get worse and worse. He would tell me how bothersome the beeping was and how much he hated needle sticks. It was like a harbinger of what was to come because it seemed like he knew what was going to happen. One morning, he asked me about physician-assisted suicide he asked things like, “Why me?” It was a very emotional time, and I still think about it today. That day, our team had gotten palliative involved. He had wanted his code status changed to DNR, and within 24 hours, he had passed away.
I remember when I found out, I burst into tears in the resident room, and I just kept thinking about this patient. And looking back, I think it was in those moments of connecting with him and his wife and family that– I'm not a religious person, but it almost feels like a spiritual or sacred feeling in the room sometimes when you’re talking about life or death. Sometimes you just get this feeling, and I think that's the feeling that both makes me want to write and pursue palliative care.
Dr. Lidia Schapira: I think that's a very beautiful, sincere, and very authentic pitch for why it's really important to allow that space - the space of absorbing what just happened, sort of celebrate the connection, in your case, maybe even memorialize a patient. I wonder if you find that the medical culture and your attendings are supportive of this, or it’s something you sort of push to the side and keep private.
Dr. Wendy Tong: Going back to that day when I burst into tears at that moment, some residents in the room, or my residents were very supportive of me and told me to take care of myself and go home for the rest of the afternoon. Another resident, I think I overheard saying, like, “I just wonder what had happened.” Totally normal reactions. The next morning, what I really appreciated was my senior resident and our attending had let us have a moment of silence before we started rounds. So we all stayed in the room. We reflected a little bit about what the patient meant to us and how his clinical course had gone. We were able to share a moment of silence, which I found really impactful, and I was really appreciative of. That's something I've also noticed on my medicine rotations here or when we are in the ICU and having a lot of stuff happen, my team, and now I am a senior resident, but as an intern, my senior residents would be quite supportive. I just think those moments of silence are so simple to do and very quick to do, but they're really impactful and show that people are aware of how hard this job can be sometimes and that patients who we lose do deserve that moment of respect. Whenever that happens, I'm very grateful for it. It's something I hope I will do myself as a senior resident and in the future, to encourage everyone that it's okay to experience those emotions, and it's okay to pause and reflect. We don't always have to keep moving forward without pausing.
Dr. Lidia Schapira: Wendy, I'm very impressed hearing you talk about how you process the emotional intensity of some of these connections. I wonder if you've shared your poetry or your writing with patients.
Dr. Wendy Tong: That's not something I've done before yet. Many of the poems I have written are about very sick patients. Oftentimes, it's patients I happen to meet while I am rotating on a palliative care elective. I think it says something. One, it's just being able to have the time and the space to notice and sit with people and have those moments of connection. And then to write them down and process it.
Dr. Lidia Schapira: What I'm hearing you say is that you're drawn to palliative medicine. I wonder if that's because in that specialty, we value being with patients and accompanying them. How does that sound to you?
Dr. Wendy Tong: That sounds totally right to me. I think so much of what brings a lot of us into medicine is we say we want to help people. We enjoy speaking with patients and making those connections. I will say, I have noticed that when I'm very busy, very burnt out, and tired, I don't have that spark in me or the motivation or inspiration per se to want to write or to create. So I think it says something that to be at our best and to be emotionally well and able to create, it's best if we are in a good mental space. But for me, when I think back about what drew me to medicine, it's those moments. And I do think palliative care as a specialty is one that intentionally fosters those moments and gives us a little bit more time to do so.
Dr. Lidia Schapira: Wendy, can you help our readers and our listeners understand your poem a little bit more? For some people, reading poetry is like perhaps reading a foreign language. They're not as familiar. Tell us a little bit about this. Bring us to the bedside and what happened there.
Dr. Wendy Tong: Usually, the poems I write would be about specific patients that I've had and specific details about them. This is actually the first fictional poem that I've written in the sense that it's about breaking bad news, and it's written from an imagined perspective of a young leukemia patient hearing their diagnosis for the first time. As clinicians, we do have to break bad news to patients, not infrequently, though it's never easy. And, of course, it's a skill that I hope to work on for quite a while. At some point, I do think we become immune to the emotional heaviness of it, and we might forget or not fully realize what it means or what it truly feels like as the patient hearing bad news for the first time. Especially for younger patients, it's likely their first time hearing something that's often life-changing. So this poem is sort of a reminder, I think, for us as clinicians to try to stay mindful, empathetic, and considerate when delivering bad news, no matter how many patients we've seen that day or how tired or burnt out we are or whatnot. In this poem's case, we don't know exactly what the doctor said, but maybe they could have delivered it differently. And you can say there's a balance between beating around the bush and delivering the message, but there are also nuances in how you deliver it.
Dr. Lidia Schapira: And in this poem, Wendy, you also bring out the delicate balance between the mother and the patient at a very tender age. So tell us a little bit about that. It's more nuanced than just about breaking bad news. It's how the news lands on the mother and the child and how they're responding to each other. Where did that idea come from?
Dr. Wendy Tong: People are still living at home as teenagers, and sometimes parents are still taking them to doctor's appointments. And I think it's important, in general, for patients to have loved ones nearby as support when they're at important visits or hearing bad news. And in this case, I guess it's like a dual response. The patient is hearing the news, the mother, they're also watching their loved one hear the news, but they are also a little distant from it because I think the news is quite shocking. And so they kind of have to retreat a little bit inside. That's kind of what the last two stanzas are about. The lead-up is the patient kind of knows something is going on, but doesn't really know what it is. But actually hearing the words, the diagnosis, having that as a shock, and having those words change their imagination of how their future was supposed to go. So the last two stanzas are sort of a reflection, the patient going to their safe place and thinking about the things that hold them together, whether that is their relationship with their parents or their loved ones, and who are their supports. Small things about what I think makes life important to them or what makes life a good life to live.
Dr. Lidia Schapira: Finding meaning, also, in the experience, in sort of crystallizing for themselves what their idea is of their own future, which has just been shattered probably by the news that was delivered. Does that sort of get it?
Dr. Wendy Tong: I think so. I think so. The poem doesn't go into prognosis or what life will look like. And oftentimes we know now, depending on your type of leukemia, your cancer, your course can look drastically different based on what treatments are out there. But this poem was just trying to get at that initial delivery of the news and how this patient processes it and reaching for the support she has to get her through it.
Dr. Lidia Schapira: So before we wrap up, I have two questions, and the first is very simple and may not have an answer yet. Does writing poetry make you a better doctor?
Dr. Wendy Tong: I would like to think so. I want to be in a space where I am thriving ideally. I know residency, with its ups and downs, may not always be that place, but I hope to have a career where I feel fulfilled. And part of that also means, of course, doing what I love to do. But that also involves being inspired to write and to create. There is something there for me that I know I'm in a good headspace when I want to create.
And the other piece of it, I do think writing poetry and writing, in general, just helps me pause and take things slower. And that act of thinking about what happened, writing, and editing makes me more appreciative. And it does help me remember patients more, I believe. It's like the act of metabolism itself is helpful, I do think. And I hope it would make me a better physician and more observant and more empathetic. That's my hope.
Dr. Lidia Schapira: And tell me, Wendy, we can write to reflect, to process, but then the decision to publish and share with people you don't know is a whole different step. What made you decide that you wanted to share this with the world?
Dr. Wendy Tong: When I was younger and trying to write things, whether it was short stories or fictional creative work, I was always too scared to show anyone. Writing feels quite vulnerable, and it's like the inner workings of my mind. Usually, I'm a private person and like to protect that. But for me, when I read good poetry, it's the simple language but it’s something about the choice of words and their specific arrangement that makes me feel something. And when I feel a certain way after patient encounters, it makes me want to try to capture and metabolize and also share that feeling with people I don't even know per se. But I think for me, poetry is about conveying not just a message, but a feeling across- that feeling is one of the reasons I wanted to go into medicine, and I think it’s going to be one of the feelings that will keep me going.
Dr. Lidia Schapira: And we sure hope it does keep you going. Thank you on behalf of our readers for sharing your work with us. It takes the reader to an emotional space, and I think that it’s a gift that poets have for their readers because it allows the reader to project onto their own emotional space the feelings that they’re having in response to your work. So thank you for that, and keep writing.
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/podcast.
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Guest Bio:
Dr. Wendy Tong is an Internal Medicine Resident at McGaw Medical Center of Northwestern University.
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