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Listen to JCO Oncology Practice’s Art of Oncology Practice article, "Did I Mess Up Today?” by Dr. John Sweetenham, ASCO Daily News Podcast host and recently retired after 40 years of practice in academic oncology. The article is followed by an interview with Sweetenham and host Dr. Lidia Schapira. Dr Sweetenham shares his reflections on his shrinking clinical comfort zone.
TRANSCRIPT
Narrator: Did I Mess Up Today? By John W. Sweetenham
Reflections on My Shrinking Clinical Comfort Zone
Hindsight and the passage of time have made me realize how much this question began to trouble me after each clinic as my clinical time reduced to one half day per week. After 40 years in oncology, I had reached the point where I had to ask myself whether a minimal commitment to clinical cancer care was best for my patients. I decided that it was not. Reluctantly, I left the world of direct patient care behind. Despite the identity crisis that resulted from giving up the foundational bedrock of my career, I felt substantial relief that I would no longer have to ask myself that question after each clinic—I felt that I had made the decision before (hopefully) I really did mess up.
Reflecting on this in the past few months has made me question whether we have devoted sufficient resources to asking the question of how much clinical time is enough to maintain the clinical skills, knowledge, and competency that our patients deserve and should expect from us. Although we can continually refresh our clinical knowledge and understanding through continuing education and maintenance of certification, we mostly rely on our own judgment of our clinical competency—few of us receive outside signals that tell us we are not as sharp as we should be.
There are many reasons why we may choose to reduce our clinical commitment over the course of a career and why it may be important to us to maintain some level of practice. The spectrum of reasons extends from being truly altruistic, through being more pragmatic to those driven by career advancement and self-interest. Many of those have played into my own decisions about clinical commitment, and I will use my own story to describe my journey of changing motivation and growing (I hope) self-awareness.
I entered oncology fellowship in the United Kingdom in 1984. I chose oncology as a specialty because of the unique opportunity it provided then (and now) to combine new scientific discovery and understanding of this disease with compassionate, patient-centered care, which might improve lives for patients and their caregivers. I was trained in the UK tradition, which placed an emphasis on clinical experience and clinical skills, backed up by knowledge of emerging scientific discovery and data from clinical trials. Like many others at that time, I undertook a laboratory-based research project and was inspired by the work of true physician scientists—they became role models for me, and for what I thought would be my career trajectory.
Once I finished fellowship and became junior faculty with a growing clinical and clinical research practice, I quickly began to realize that to make a meaningful contribution, I would not be able to sustain a clinical and laboratory presence—I admired those who could do this, but soon decided that I would need to make a choice. I knew that my primary passion was the clinic and that I did not have the skill set to sustain a laboratory project as well—it was an easy choice, and when I left the United Kingdom for the United States, I left my physician scientist ambitions behind but felt confident in my chosen clinical career path and had no sense of loss.
I experienced many examples of culture shock when I moved to the United States. One of the least expected was the attitude toward clinical practice among many of my colleagues in academic oncology centers. Many sought to minimize their clinical commitment to give more protected time for research or other professional work. I found this puzzling initially, but have since observed that this is, to some extent, a reflection of the overall institutional priorities and culture. There is often tension between the perceived need for protected time and the expectations of academic departments and health systems for clinical revenue generation. Protected time becomes a contentious issue and increasingly has become the subject of negotiation during the recruitment process.
In my early years in the US system, I found this difficult to grasp—why wouldn't trained physicians want to spend as much of their time as possible doing what we were trained to do? I could understand the need to achieve a balance in commitment for those with labs, but not the desire to do the absolute minimum of clinical work. After all, I was not aware of anyone who thought that they could be competent or competitive in bench research with a half day per week commitment to it, so why would anyone think that level of time commitment would be adequate for a clinical practice, especially for those coming straight out of fellowship?
Over the next few years, as I began to take on more administrative responsibilities, my perspective began to change. The earliest signs that my clinical skills might be dulling came to me while on a busy inpatient service—I was beginning to feel that I was moving out of my comfort zone—although I was comfortable with the day-to day care of these patients, I wondered whether there were nuances to their care that I was missing. I had also started to realize that I was taking more time to make decisions than I had earlier in my career and started to wonder whether I was losing my edge. I decided it was time to leave the inpatient service. I continued with 2 full days in clinic for several years, which fitted well with my administrative commitment, and I felt fully back in my comfort zone and working at the top of my game although I no longer felt like quite the same, fully rounded clinician.
The next step in my career took me to a new leadership position, a reduced clinical commitment of 1 day per week, and a growing sense of unease as to whether this was adequate to stay sharp clinically. I was still gaining great enjoyment and satisfaction from taking care of patients, and I also felt that as a physician leader, clinical practice earned me credibility among my physician colleagues—I could still relate to the issues they faced each day in taking care of patients with cancer. I was also strongly influenced by a former colleague in one of my previous positions who advised me to never give up the day job.
That said, there were warning signs that I was becoming an administrator first and a clinician second—I was spending less time reading journals, my time at conferences was being taken up more with meetings outside of the scientific sessions, my publication rate was falling, and the speaker invitations were slowing down. I had to face the reality that my days as a KOL in the lymphoma world were numbered, and I should probably adjust my focus fully to my administrative/leadership role.
As I made the decision to drop to a half-day clinic per week, I realized that this marked the most significant step in my shrinking clinical role. I became increasingly conflicted about this level of clinical practice. It was much more compatible with my administrative workload, but less satisfying for me as a physician. I began to feel like a visitor in the clinic and was able to sustain my practice only because of the excellent backup from the clinic nurses and advanced practice providers and the support of my physician colleagues. My level of engagement in the development of new trials was diminishing, and I was happy to leave this role to our excellent junior faculty. As with my inpatient experience, I started to feel as though my comfort zone was shrinking once again—some of my faculty colleagues were developing particular expertise in certain lymphoma subtypes, and I was happy that they were providing care for those groups, leaving me to focus on those diseases where I still felt I had maintained my expertise.
Looking back, I think it was the credibility factor which persuaded me to continue with a minimal clinical commitment for as long as I did—I was concerned that giving up completely would result in a loss of respect from clinical colleagues. Subsequent experience confirmed that this was true. When I ultimately decided to hang up my stethoscope, I felt some relief that I had resolved my own internal conflict, but there is no question that it diminished the perception of me as a physician leader among my clinical colleagues.
There is little published literature on the issue of clinical commitment and skills in oncology. In his wonderful perspective in the New England Journal of Medicine, Dr David Weinstock1 describes his experience of withdrawing from clinical practice and compares this process with bereavement. His account of this process certainly resonates with me although my feelings on stepping down were a mixture of regret and relief.
Recognizing that oncology practice remains, to some extent, an art, it is difficult to measure what makes any of us competent, compassionate, and effective oncologists. We have to rely on our own intuition to tell us when we are functioning at our peak and when we may be starting to lose our edge—it is unlikely that anyone else is going to tell us unless there is an egregious error. For me, one half day per week in clinic proved to be insufficient for me to feel fully engaged, truly part of a care team, and fully up to date. Giving up was the right decision for me and my patients, despite the loss of credibility with my colleagues. There was a sense of loss with each stage in the process of my dwindling clinical commitment, but this was offset by the knowledge that I had not waited too long to make changes.
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. John Sweetenham, whom you may recognize as the host of the ASCO Daily News podcast. Dr. Sweetenham has recently retired or partly retired after 40 years of practice in academic oncology, and in this episode he'll be discussing his Art of Oncology Practice article, “Did I Mess Up Today?”
At the time of this recording, our guest has no disclosures.
John, welcome to our podcast and thank you for joining us today.
Dr. John Sweetenham: Thank you for having me.
Dr. Lidia Schapira: I'd like to start just by asking a little bit about your process and perhaps why you wrote this. Was this inspired sort of by a conversation? Did this just gush out of you when you saw your last patient? Tell us a little bit about the story of this article.
Dr. John Sweetenham: Yeah, it didn't really gush out of me. In fact, I originally started to write this probably back eight or nine months ago, and I wrote a couple of paragraphs and then I'm not quite sure what happened. I didn't think it was very good. Life took over, other things were going on, and then I revisited it about a month to six weeks ago. So the process has been actually fairly slow in terms of putting this down on paper, but it wasn't really the result of a conversation.
A couple of things spurred me on to do it. The first was the most obvious one, that it really did occur to me, particularly as I hung up my stethoscope and walked away completely from clinical practice, that I did have some sense of relief. Because I didn't have that nagging voice in the back of my head saying to me anymore, “I just want to make sure that I did everything right today.” And so I think that was a part of it.
And then it was also partly inspired by something which I read a few years back now. And I actually referenced it in my article, which was that wonderful article by Dr. David Weinstock, who had a somewhat different but parallel experience. And that had really resonated with me. And particularly over the last two or three years of my clinical career, like I said, I began to feel uneasy. And so it wasn't really a kind of blinding flash or anything. It was really just over time, wanting to get it down on paper because I felt that I can't be the only person who feels this way.
Dr. Lidia Schapira: John, let's talk a little bit about some of the themes that I found so compelling in your article. The first is your experience of how we value clinical activity in the United States. And you contrast that very much with your experience in the UK. You talk about having started your fellowship in oncology in the ‘80s in the UK and then transitioning to the academic culture in the US. Can you reflect a little bit on that for us, both how it was then and how it is now?
Dr. John Sweetenham: I preface that by saying it is 25 years since I practiced in the UK, so I don't really know whether it's now as it was back then. As I mentioned in that article, I think at the time that I went through medical school and undertook my fellowship, the training at that time and the culture was very, very clinically based. I always remember the fact that we were taught very heavily, “Don't rely on tests. Tests are confirmatory. You've got to be a good diagnostician. You have to understand, listen to the patient, he'll tell you the diagnosis,” and so on and so forth. So that the grounding, particularly during med school and early fellowship, was very much based on a solid being as a clinician. Now, in 2024, I think, that's actually a little unrealistic, we don't do it quite that way anymore.
And for me, the contrast when I moved to the US was not so much in terms of clinical skills, because I think that clinical skills were very comparable. I don't think that's really a difference. I would say that clinical skills and clinical time are not always consistently valued as highly from one institution to the other. And I think it is an institutional, cultural thing. I've certainly worked in one or two places where there is a very, very strong commitment to clinical work and it is very highly valued. And I've worked in one or two places where that's less so. There isn't really a right or wrong about that. I think different places have different priorities. But I did find certainly when I moved and was probably somewhat naive moving into the US system because I didn't really realize what I was coming to, and there were definite culture shock elements of that. But at that time, in 2000, when I made the transition, I would say that at that time, overall, I think that clinical medicine was probably more highly valued in the UK than it was in the US or clinical skills. I think that's changed now, almost certainly.
Dr. Lidia Schapira: Interesting that you referred to as a clinical culture, a term that I will adopt going forward. But let's talk a little bit about this process of having your time basically devoted more to administrative governance, leadership issues or tasks, and going from being comfortable in the inpatient setting to giving that up and then going to outpatient two days a week, one day a week, half a day a week. And then this moment when you say, “I just can't do this,” is there, you think, a point, a threshold? And how would we know where to set that, to say that below that threshold, in terms of volume and experience, one loses competence and skills?
Dr. John Sweetenham: I certainly don't have the answer. And I thought really hard about this and how could we improve on this. And is there some way that we would be able to assess this? And the thing that I thought back to was that back in the early 2000s, when I first moved to the US. At that time, for ECFMG purposes, I had to do something that was called the Clinical Skills Assessment, where you went to Philadelphia and to the ECFMG offices and you saw actor patients and you had to do three or four of these and someone had a camera in the room and so they were watching and assessing your clinical skills. And honestly, I slightly hesitate to say this, but it was probably pretty meaningless. I can't imagine my clinical skills could have been judged in that way. I think it's made me believe that there probably isn't an outside way of doing this. I think it's down to all of us individually and our internal compass. And I think that what it requires is for, certainly in my case, just to be aware. I think it's a self awareness thing. Dare I say it, you have to recognize as you get a little older you probably get a little less sharp than you were, and there are signals if you're prepared to listen to them.
I remember on the inpatient service, and I used to love the inpatient service. I love teaching the house staff and so on. It was really good fun. But then I got to a point where I was on a very, very busy hem malignancies inpatient service and started to have to think about which antibiotics to use just a little bit longer than I had done in the past. And it was little things like that. I was not so familiar with the trials that some of these patients could be able to get on when they were inpatient. And so little signals like that started to ring in my ear and tell me, “Well, if you're taking longer and if you're thinking harder, then maybe it's time to move on from this.” And I would say the two most difficult things for me to do overall were obviously giving up clinical work entirely. But before that, giving up the inpatient service was a big deal because I never really felt fully rounded as an oncologist after that. As the hem malignancies docked back 15 years ago, a very big component of the care was still inpatient, and I wasn't doing that part of my patient care anymore. And that was kind of a big change.
Dr. Lidia Schapira: So many things to follow up on. Let me try to take them apart. I'm hearing also two different themes here. One is the competence issue as it relates to aging. And there have been some recent articles about that, about whether or not we actually should require that physicians above a certain age demonstrate their competence. And this is, I think, an ongoing theme in academic medicine. But the other that I hear relates to volume. And even if you are sort of at the top of your game and very young, if you're only in the clinic half a day a week, you can't possibly have the clinical experience that just comes from seeing a lot of patients. Can you help us think through the difference between these two sort of running threads that both, I think, contribute to the idea of whether or not one is competent as an expert in a field?
Dr. John Sweetenham: I think that the discussion around age and clinical competence is a very interesting one. I just don't know how you measure it other than your own internal system for judging that. I'm not sure how you would ever manage that. I suppose in some of the more procedure based specialties, maybe there would be skill based ways that you could do this, but otherwise, I just don't know. And I certainly wouldn't want to ever be in a position of making a judgment based on age on whether somebody should or shouldn't be working. I just felt that for me, it was the right time.
In terms of this issue of volume and time in the clinic, I actually do feel that there are some important messages there that maybe we need to think about. And I say this with total respect, but I think straight out of fellowship, a half a day in a clinic, to me doesn't feel like it's going to give that individual the experience they need for 30 years of clinical practice. I may be wrong about that. I'm sure there are exceptions to that and highly competent individuals who can do that. But I worry that someone who starts out their clinical oncology career with a minimal clinical commitment, I worry as to whether that is the best way for them to develop and maintain their clinical skills.
Dr. Lidia Schapira: And this brings me to another question, which is sort of our oncology workforce and the investment that we all have in our excellent clinicians and experts in diseases. If we are to pluck some of our best to perform more and more leadership, administrative and governance roles, aren't we doing a disservice to our patients and future patients?
Dr. John Sweetenham: I think that in terms of our oncology leadership, both clinically and academically, it could use a bit less gray hair and I think that there are enormously talented mid-career folks who aren't necessarily advanced and getting the opportunities that they should have to really shine in those areas to develop full time clinical and academic practices and be the ones who are really clinically engaged. And then the people of, I won't say my generation, maybe the generation below me now, it seems to me that there is a benefit to gaining administrative leadership roles for those who want to go in that direction as you advance further through your career and that perhaps making sure that those people in their mid-career role, where they're probably at their most productive, are able to do clinically the things that they want to do. What I'm trying to say is I think that you're quite right that we do pick off people who are going to be really talented in a specific direction and distract them from their clinical practice. Maybe we just have to be a bit more reserved about how we do that and not distract those people who are really strong clinicians and pull them in directions that they may, indeed, be attracted to, but perhaps it's a little bit early for them to be doing it.
Dr. Lidia Schapira: It's an interesting question and dilemma because on the one hand we say we don't want people who just have business degrees administrating in medical spaces. But on the other hand, we don't want to distract or pluck all of our clinical talent for administrative roles that take them away from what we prize the most and what our workforce actually needs. And that sort of brings me to my next question, which is something I'm sure you've thought about, which is, as we get older and as we have more gray hair, those of us or those of you who choose to allow yourself to be seen as gray, some of us still cover, how do we present interesting career tracks also that acknowledge the fact that perhaps people want to pivot or take on new roles and still keep them engaged in actively seeing patients because they have so much to offer?
Dr. John Sweetenham: I think the key there is that there has to be a balance between how much of somebody's time, a physician's time should be taken up in those roles. I'll only speak for myself here, but when I got into a more administrative role, it was quite seductive in a way and I quite enjoyed it. It's a very different perspective. You're doing very different things, but you do get this feeling that you're still having impact, you're just doing it in a different framework. It is intriguing and it's a lot of fun. In a way, I think it comes down to time. I think that somewhere around, for me, a 40% clinical commitment, I think I could have continued that. And I think if I could have resisted the temptation to be drawn more into the administrative side, or if somebody had said to me, “No, you're not going to do that,” then I would have resisted the temptation to do that. I think that there are people who would say, “Well, you can't take on a physician leadership role in a busy academic center and do it as a part time job.” Well, there's probably an element of truth in that, but you certainly can't take care of patients as a part time job either. And I do think that one of the things that we should ask ourselves maybe in terms of developing physician leaders is should we insist that there is a minimum amount of clinical time that the individual still has to commit to? And that may be the answer. I think that it does help to maintain credibility among colleagues, which, I think, is very important, as I mentioned in the article. So that's my only perhaps suggestion I would make is just don't allow your physician leaders to get so wrapped up in this that they start to kind of walk away from what we were all trained to do.
Dr. Lidia Schapira: I'd love to hear you talk a little bit more about your experiences, reflections on what you call the ‘art of oncology’ and the ‘art of practicing in oncology.’
Dr. John Sweetenham: I think that many of us, myself included, tried throughout my career to be evidence-based. I tried really hard to do that, and I hope for the most part, I succeeded. But I think there are times when that does get challenged. Let me give you one example that comes to mind, and that would be just occasionally, from time to time, I had the good fortune to take care of people of some power and influence. And there is, I think, in that situation, a temptation to be drawn into doing what those people want you to do, rather than what you think is the right thing to do. It can be very, very difficult to resist that. And so to my mind, part of the art is around being able to convince those folks that what they're suggesting would not necessarily be in their best interest. That would just be one example.
I think the other thing also that strikes me is you can't walk away from the emotion of what we do. And I still think back to some of the folks that I took care of when I was practicing bone marrow transplantation. This would be even back in the UK and folks would contact me some years afterwards. Some of my former patients from the UK would contact me and would still keep in touch and had medical complications, oncology complications, that followed them. And it struck me then, they were 5,000 miles away. I had no useful advice to give them, really, other than to listen to their physicians and get second opinions and those kinds of practical things. But it did strike me that part of the art is, and perhaps art is the wrong word, but there is a big emotional commitment when people feel 20 years on that they're still wanting to keep in touch with you and let you know what's happening in their lives, you know. And so I think that however much we try to be scientific and detach ourselves from all of that, our interactions with folks, I think sometimes we don't realize how impactful and long lasting they can be.
Dr. Lidia Schapira: I would say that that speaks to your success in establishing a therapeutic alliance, which is probably one of the things that we often undervalue, but is a huge element of truly human-centered, compassionate practice, whatever we want to call it.
But I do have one last question, and that is how you have dealt with or how you have learned to deal with in your practice, with some of these feelings of regret and relief that you mentioned that came with hanging up the stethoscope but the huge emotions that accompany making decisions about one's practice.
Dr. John Sweetenham: It has almost been a natural sort of stepwise progression. So it's almost a journey for me. And so like I mentioned to you earlier on, I struggled around the time when I gave up inpatient practice. I struggled again a little bit when I gave it up completely. Although it was very much balanced by this sense that I didn't have to worry if I was kind of screwing up anymore, so that was good. But I think the other thing is there are other things going on. And so rather than dwelling on that, I've stayed active to some extent in the oncology world by some of the other things I do. I'm still trying to write one or two other things at the moment. And I guess it's partly a kind of distraction, really that has helped me to get through it. But I think in the end doing other stuff, I've actually traveled a fair bit. My wife and I have traveled a fair bit since I actually stopped working. And the other thing, I guess it sounds a bit lame and corny, but after 40 years or so, there are a lot of good memories to think back on. And again, it sounds very cliched and corny - I console myself with the fact that I hope for some of the folks that I took care of that I made a difference. And if I did, then I'm happy with that. I have closure.
Dr. Lidia Schapira: What a lovely thought. I was thinking of the word distraction as well before you said it. Well, listen, I look forward to reading what you write and to being inspired and to continue to be in conversation with you. Thank you so much for joining our show today.
And for our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.
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. Sweetenham, host of ASCO Daily News podcast, has recently retired after 40 years of practice in academic oncology.
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Listen to ASCO’s Journal of Clinical Oncology Art of Oncology poem, "Episteme” by Dr. Michael Slade, who is a medical oncologist at Washington University School of Medicine. The poem is followed by an interview with Slade and host Dr. Lidia Schapira. Dr Slade highlights the tension between what is known and unknown and what spoken and unspoken as physicians try to care for our patients without destroying their ability to live with their disease.
TRANSCRIPT
Narrator: Episteme, by Michael J. Slade, MD, MSCI
I know you know, must know.
The tides have woken you
night after night after night,
borrowed blood flowing in
and now out, unaided
by your dwindling marrow.
You must know your story
is read and written
in a perfecta tense.
You must know the end
somewhere deep in
your empty bones.
Still, you speak of summers,
of fish caught or lost beneath
the calm surface of a distant lake.
“There’s nothing to do
in December,” you say,
skin pale in the cool light
leaking from the door.
It’s late now, deep in the evening
and my knees ache as I nod
and wonder about a different world
where you were not you
and this was all decided months ago.
“Day by day,” I mutter and shuffle
to my next door, leaving you alone
to wait on the cataclysm, on
that night when the blood
of strangers runs wild
and catches your breath,
that night in the ICU, where
they wait, tube in hand
as you sweat and shake, where
I still promise to care for
you knowing, knowing you
will never wake again.
Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Michael Slade, a Medical Oncologist at Washington University School of Medicine. In this episode, we will be discussing his Art of Oncology poem, “Episteme.”
Our guest’s disclosures will be linked in the transcript.
Mike, welcome to our podcast and thank you for joining us.
Dr. Michael Slade: Thank you, Lidia. It's great to be here.
Dr. Lidia Schapira: It's a pleasure to have you. Let's start by talking a little bit about your relationship to writing prose, poetry. Is this something that you've always done? Do you want to share with us a little bit about what it means to you and when you have time to write?
Dr. Michael Slade: I'd say, I have absolutely no formal training as a poet or honestly in anything else, but this is something I've done since college. And especially starting in medical school, this was really a deliberate practice for me to try to find a way to unload some of the harder experiences that we can go through as medical providers.
Dr. Lidia Schapira: It's interesting to hear you say that. Many of our authors have talked about using their writing as a way of processing emotionally difficult experiences and just very important meaningful experiences. But there's so much artistry in your work. I just wanted to ask you a little bit more about that. How do you find the relationship to not just the writing as a way of processing, but as art that you want to share and publish. I've seen that you've published poems, quite a few of them in the last year alone.
Dr. Michael Slade: Yeah, I would say the publishing piece of this came very far down the road for me, that I've been writing for over a decade before I think I even submitted anything for publication. And for me, the ability to publish is more of a- Is a way of putting yourself out there and as a motivation to really re-examine what you've written and not just scrawl it on a piece of paper and sort of stick it back on a shelf somewhere, but to be able to go back to some of these experiences and really delve a little bit deeper, both with the language, but also what was the experience? Why was this meaningful? And often things that end up in print for me are things that I've been playing with for a number of years. It is just sort of an ability to go deeper there is the reason why I have published some of these works.
Dr. Lidia Schapira: I am very interested in the theme of time and your use of pronouns. There's a lot of negotiating. What is yours and what is your patients’? I assume the “I” is the oncologist, right? In this particular case, since the readership of JCO are mostly clinical oncologists, it's sort of meant to be an affiliation with a reader. And there's a lot of “I,” but then there's a lot of mine. Can you talk a little bit about how you have chosen to address the patient directly and your colleagues directly and put yourself out there using first person as well?
Dr. Michael Slade: I think certainly, as I wrote this, and I tend to write a lot as I come off of sort of tough stretches of clinical work, and as I wrote this, I think, I was trying to capture a little bit of the anguish that I think a lot of us feel as oncologists, especially around this question of what we know and what is knowledge for the oncologist. The reality is the things that we know sort of above the neck tend to be very statistical, that we say, “Oh, the chances of you responding,” “The chances of you surviving,” “The chances of you being cured,” it's very numbers based, but it's probabilistic. And when we talk to patients and often when we talk to ourselves, we really use this idea of knowing in a very different way, that we know that something's going to happen because of our past experience or because of what we're seeing right in front of us. I think that's something that I think a lot of oncologists probably identify with very closely is that what do we do when we feel like we know something in a way that's almost deeper than the academic way that we speak of knowing.
Dr. Lidia Schapira: Let's talk about that. And that is, in fact, the title you chose for your poem. Why not just use the word knowledge? Tell us a little bit about that choice.
Dr. Michael Slade” When we talked about knowing, both academically and my background before I came to medicine, as I trained in philosophy, we talked about epistemology or episteme. Often, we talk about knowing both in medicine and in sort of the wider philosophical discussions, we talk about it in this very abstract way that if you were to sit down with a patient and really try to unpack it, they're not going to have any idea. This isn't relevant to practical life in a lot of ways. They want to know, “Am I going to be cured?” “Am I going to have this side effect?” “Am I going to make it out of the hospital?” And the type of knowing that we do within science is not that type of knowing. It's all probabilistic. And to me, I think, trying to pull back a little bit, and by using the sort of Greek root, it sort of places this idea of knowledge at a remove that I think is useful.
Dr. Lidia Schapira: Mike, I've often used the analogy that poetry is almost like abstract art sometimes, because it invites the reader to imagine things. So if we think of this poem sort of as art, can we walk through this together and take it from the top and see what we see or what these ideas trigger? You start directly by addressing the I know, you know, you must know. And then you present the case, if I got this right, of somebody with a dwindling marrow, that's an empty bone, so an inefficient marrow. And I assume, since you're a bone marrow transplanter, that means this patient had a disease that was incurable here, and you sort of insist that you must know. Tell me a little bit about that tension, that emotional tension that comes up for me as I read that, those opening lines where you're sort of insisting that you must know something that you're not sharing with me that you know.
Dr. Michael Slade: I think for me, that's really trying to express the gap that can emerge between those of us who do this professionally and our patients who have to live through these experiences. And we can say, “I have seen this story play out so many times, and I know things are not going well. I know how this is going to end.” But for the patient, this is, obviously, every patient is an n-of-1 with their own experience, and they may have had family members with similar diseases, they may have had friends. They may join these really wonderful patient support groups where people can sort of talk about what the process of cancer treatment is. But for the patient, they are living through it day to day. And we may feel with our accumulated knowledge that it's very clear how things are going and that either their optimism or pessimism or sort of whatever the patient's base emotional reaction is to the clinical situation is fundamentally incorrect. It's like you have to put these pieces together in the way that I do. And the reality is that there is a huge gap that can emerge between us and our patients, and it can lead to frustration and anguish and a lot of negative emotions, I think, from clinicians that aren't aimed at the patient, but they're really aimed at the fact that we feel like we're not talking about the same situation. I think that's what that first piece of the poem is really trying to capture, is that anguish at that type of gap.
Dr. Lidia Schapira: And you say it very clearly. You say, “You must know your story is read and written in the perfect tense.” It's almost like you're shouting it here, right?
Dr. Michael Slade: But in sort of a weird, obscure way that if you tried to tell a patient sort of a grammatical metaphor for how poorly their hospitalization was going. Most patients, unless they're English literature professors, will look at you as sort of with this, “What are you talking about?” I think, again, it's that gap. It's this very academic, removed way that we often look at this, especially when we're trying to shield ourselves from this very human anguish of knowing that there's this real person in front of you who's not doing well and that you feel like you kind of know how the story is going to end.
Dr. Lidia Schapira: Let's go a little deeper into that then. It's really about your feelings then here. It's your frustration. You want the patient to mirror back to you that they get how bad this is, and they can't because they are trapped in that body, in that situation. And as you just say, and then you say in the lines that follow, “they are coming up for air.” They're thinking of the summer and the fish that may be caught or not caught. They may know it somewhere, but they can't quite recite that back to you. And that leads the writer, the author, to voice this inner tension. Did I get that right?
Dr. Michael Slade: I think that's exactly it. And sort of towards the end of that verse, there's also sort of this counterfactual that certainly different choices can always be made in the course of treatment. And especially for us clinicians when we're encountering a patient who interprets their disease a little bit differently than we do, and they say, “Oh, I feel fine. Why do I need chemo after surgery?” Or, “Oh, I feel fine. Why do I need a bone marrow transplant?” And sometimes people will make choices which makes their immediate life better, but we are always stuck in this sort of feeling of, “Oh, man. If only we had done things a little bit differently.” I acknowledge that we just can't align our views of the world, but still at the same time saying, “Well, I don't know, things would have been better if you'd listened to me. Maybe you made the right choice for you and your disease process.” So it's always that gap between what we know academically and what we sort of know below the neck. And then for patients, their experience is often very different from ours because they have to live through this.
Dr. Lidia Schapira: I'm interested in the physician narrator experience here, and I was really impressed by the fact that you convey the tension on the emotional load. But the only thing that you write and communicate directly to the reader is the physical aching, when you say, “it's the evening and my knees ache,” and then you say “I shuffle,” suggesting that you're physically tired. I just wonder if you could talk a little bit more about that, the way that you have inserted the fatigue factor of the narrator here, but through the description of physical symptoms.
Dr. Michael Slade: I think there's a little bit of blending there, because I think on the one hand, certainly this emotional anguish, mental anguish can certainly manifest as fatigue, and sometimes can be sort of a little bit of a metaphorical blend there. But I think the other thing that we often really struggle with as physicians and as other providers is how much are we letting ourselves get into the story that the patient is experiencing, but even the story that we're trying to objectively put together. And because, for example, we had a patient who tried a treatment and they had a rare side effect, a lot of us will admit, “Hey, I had a patient with a bad outcome when they got X,Y,Z.” Even if the data looks really good because of my own emotional processing or I do my best. And I know a lot of other physicians talk about this, but if you are tired, hungry, under or over caffeinated, having bad things going at home a lot of times for us, we worry about letting our personal lives bleed into our interactions with patients. And that's really challenging because I think we are at our best when we bring our humanness into the clinic room, into the hospital room. We also have to make sure that we're not saying, “Oh, am I just down because I'm tired, and that's why I think this patient's going to do poorly?” Or is it actually supported by the evidence in front of us? So I think the way that the narrator kind of moves in and out of this piece and how much they are a part of the story is a big piece of the poem.
Dr. Lidia Schapira: It is a very big piece of the poem. And as I read some of the other poems you've written, I think that I was also impressed by this construction of the boundaries and the separateness between the patient and the physician narrator and how you negotiate that when you're waiting for a result, when you're waiting for time, when you say it's really the patient's story, but it's yours too. There's a fluidity about this perspective. Did I get that right?
Dr. Michael Slade: I think that's an absolutely wonderful way to describe it. I think fluidity in particular is, yeah, that we think of things as very separate from each other and that I'm me and you're you and there's your family and there's the rest of the team. But all of this stuff, not to get too sort of hippie with it, but there's so much resonance when you're in these relationships that you have with patients. And especially in cancer care, we have very deep, often very prolonged and somewhat intense relationships with patients and their families as they go through this stuff. Boundaries can become blurred. And again, I think it's challenging because sometimes we are at our best when we blur those boundaries a little bit. But there's certainly- you can be pulled into a patient's story in a way that is not helpful for you long term, but even not helpful for the patient short term. And I think that's the challenge. And you're right. I spend a lot of my work sort of thinking about this. And a lot of my professional life is also thinking about this.
Dr. Lidia Schapira: I would say it a little differently. And it's that you are co-constructing an ‘us’ that is between you and they, or you and he or she, or however you see this. And that's the mind part. Others have talked about cases where there is a deep connection between physician and patient, where the physician is invited to be a co-editor of that patient narrative. I think there's a lot of richness in that. And I think that your work and your poetry certainly takes us right there.
And so with that, I want to take us to the end of the poem, which is terrifying.There's going to be, you use the word ‘cataclysmic’, which means, this is an upheaval, something violent about to happen. And the way I interpret it is your patient is neutropenic and septic and shaking and rigoring and is getting transfused. And the “They,” which isn't you or your team, it's the ‘they’ are waiting for it too and going into probably an intubation in the ICU. And then there's this promise that you won't abandon the patient while ‘they’ are going to be doing these things. And we already know how this story is going to end. Is that what you are trying to convey?
Dr. Michael Slade: It's funny because until you sort of read it out, I was like, I didn't realize how much I threw our ICU colleagues under the bus as part of this poem. So if any of you guys are listening, I have immense respect and value for what you do. But no, and this is sort of the big question that we run into with these patients and what's the right response when we feel like we can see the future and then we turn out to be correct. How do we not, I guess, insulate ourselves from that in a way that's not helpful for us and it's not helpful for the patient? And yeah, so that's sort of, as I said, you read the story sort of as it was laid down, but yeah. What do you do? What's the right response when you feel like you're getting to the end and that you feel like you've seen it coming for weeks? And I think that's really the challenge. And the poem sort of suggests an answer to that question. But I think everybody kind of has their own process that they have to go through. As you see, unfortunately, as an oncologist, case after case of folks that- cancer is tough and our treatments are getting better, but I'm a myeloma physician. I have cured zero patients so far. And that's hard at the end of the story. It's always hard.
Dr. Lidia Schapira: It is hard. Can you tell us a little bit about your choice of language and why you keep repeating the ‘knowing’ and then italicize it at the end, just to add another dimension of emphasis there?
Dr. Michael Slade: As someone who loves language and has always been interested in it from a philosophical perspective, but literary perspective as well, there's really, really sharp limitations to what language can express. And we can unpack and define and redefine and suggest. But there's something- often, we in these situations, run up into a place where words are totally insufficient. And I feel like often what we end up doing and what I end up doing in writing but I think even in our interactions with people, we just sort of use the same words over and over again, hoping that somehow the meaning will morph mid-interaction and suddenly we'll have that connection with someone where they'll hear what we're trying to say. And for me, I kept coming back to this idea of knowing, knowing, knowing. The narrator's trying to express something that they just can't quite get their arms around. And I think the best and the closest I can get to in similar situations is something like this, is trying to write out these experiences in a way that kind of captures that feeling. I hope I at least captured a piece of it.
Dr. Lidia Schapira: Certainly. I loved your writing and I think you did. Despite how difficult it is to talk about this and how difficult it must have been for you to live through it, there's a real gentleness about the way you take the reader through this. And it evolves. Really, it flows beautifully. So thank you for that.
Dr. Michael Slade: I very much appreciate the writing. And I will say to the folks who read the original version of this poem, both in my personal life and then at JCO, this is not the original form the poem was in. So I think other people have layered in their experiences here. And again, I love to see this come out on the other end and say, this is more beautiful than what I started with. So I have a lot of gratitude to folks who have given me some pointers about how to improve this.
Dr. Lidia Schapira: It's lovely to hear you say that. To end this, I would love to hear you tell me a little bit about comments, perhaps, that colleagues or even patients may have made based on work that you've published or what you hope that people will take away from this.
Dr. Michael Slade: I had published maybe one poem back in medical school, and then I published something as a fellow. And I remember in our program, we have this big office and we basically all have cubicles, and we have sort of the computers all set up, and we're in and out, you know, seeing consults and everything else. And I had published something in JCO a few years ago, that was about indirectly the experience of trying to be on call and triage patients and all this. I had maybe three or four different fellows within the week that that was published, sort of stick their head over and be like, “I never read poetry, but I saw your name on this. So I flipped to the back of the JCO magazine and read it.” And that captured so many of the feelings that I've had this year in a way that I couldn't put on paper. Again, I've been writing stuff since college and most of it sits in a folder somewhere and it's never read by anybody. So the idea that it could go out into the world and could make people have that sort of sense of catharsis that I'm not alone in this. Somebody else has had this experience and had this feeling.
I've had that same experience with some of my very brilliant colleagues who paint or who participate in other sorts of artistic endeavors. And it's nice to know that there's a community of people out here. We're all just trying to navigate the same stuff. And if we can sort of help each other, if we can capture these experiences and retranslate them in a way that people can process their own, sometimes, grief. I think it's really wonderful.
Dr. Lidia Schapira: Yes. To create a thoughtful community and accompany one another. Well, thank you for sharing your art and your wisdom and your knowing with us today, and please keep writing.
And for our listeners, until next time, thank you for listening to JCO's Cancer Stories, the Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.
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. Michael Slade is a Medical Oncologist at Washington University School of Medicine.
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Saknas det avsnitt?
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Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "The Holiday Card” by Dr. Laura Vater, who is a gastrointestinal oncologist at Indiana University Simon Comprehensive Cancer Center. The article is followed by an interview with Vater and host Dr. Lidia Schapira. Dr Vater shares how she processed the unexpected loss of a patient and how a colleague unknowingly helped her cope.
TRANSCRIPT
Narrator: The Holiday Card, by Laura B. Vater, MD, MPH
I kept her family holiday card tucked into the side pocket of my black briefcase for a year and 3 months after she died. I carried it back and forth to the office each day, never viewing it but with a deep awareness of its presence. It was a transitional object, my therapist said. I took it with me for reasons that were not logical or even fully clear to me—perhaps part of me thought if I kept it in that dark space, then maybe her death was not real, after all. Death is not new to me. Much of my work as a GI oncologist is palliating my patient’s symptoms and helping them navigate the end of life.
But she was not supposed to die. She was a vibrant, kind person, and I was treating her for a potentially curable condition. A team was assembled, a tumor board discussion was held, and a comprehensive plan was derived from published clinical trials and national guidelines. She was on track to finish chemotherapy and recover. She was meant to have decades more with her husband and teenage children.
This is what gnawed at me—death out of place. It was during a nap on a normal day, months into her treatment course. There were no proceeding symptoms or perceptible changes. The autopsy showed no apparent cause of death.
Amid it all, her family was kind and expressed thanks. “She was grateful for your investment in her,” they said. “She felt cared for.” Rechanneling my distress, I rechecked the dose of every chemotherapy agent she received, along with each supportive medication. It was all per protocol, verified by pharmacy teams, and infused without adverse reactions. Yet, the questions remained. I continued to carry the weight of responsibility, along with the holiday card.
In clinic the next week, I met a patient with the same diagnosis. Again, there was a multidisciplinary discussion, and we planned to give him the same drug regimen. After reviewing the more common side effects with him, a lump formed in my throat. “In exceedingly rare cases,” I said, “cancer treatment may lead to death.” My eyes began to water, and I pushed back the tears to answer his remaining questions.
He completed the treatment and, over time, had no sign of recurrence. Many more patients followed with the same diagnosis and positive outcomes.
And the card remained in the bag.
Over a year later, a senior mentor and I had a shared patient with two malignancies. We carefully discussed and managed her care, but she unfortunately had a rapid clinical decline and was admitted to the intensive care unit. Her family elected for comfort care, and she died soon after. We saw each other in the hallway the following week. “Just awful, wasn’t it?” he said.
I exhaled and nodded.
Perhaps he could see the invisible burden I carried, and he sighed. “We do the best we can with the data we have, but we’re treating terrible diseases. Sometimes, bad things happen that we cannot predict or prevent. We did everything we could for her.”
Something deep inside me released in that moment. Often, mentors do not realize how healing their words can be—even brief ones shared in passing on a busy clinical day. Eventually, on a quiet afternoon at home, these words gave me the courage to reach into the side pocket of my work bag and remove the white envelope. My name was written and underlined in royal blue ink.
Slowly opening the card, I saw once again a snapshot of life: a beaming family with arms around each other amid a blanket of paradise-green trees. They were huddled so close that there was no space between them. I imagined how she might have felt at that moment, the warmth of her children pressing on either side and the joy spreading across her face. Perhaps someone had told a joke just moments before. My face crumpled, and I began to sob. How badly I wanted to cure her, to restore her to health, to see her year after year for follow-up, and hear about her children’s unfolding lives. And now, they were navigating the world without their mother.
One of the most challenging aspects of practicing oncology is the uncertainty of it all. Even when the variables are the same—diagnosis, staging, and treatment—the outcomes are unpredictable. We, of course, know and rationally accept this as physicians. It is the nature of our work to care for diverse and varied human beings. But even so, when devastation occurs unexpectedly and without apparent reason, the toll of grief can be crushing.
It is often the support we receive from one another that helps us heal. We must remind our mentees that despite our greatest efforts in a field of extensive data, unpredictable outcomes still happen. We will have questions that may never have answers. Our minds may try to cope with this randomness in ways that are not always logical. Our grief may linger like an open wound for months or even years to come. Caring words shaped by time and experience can help us process, cope, and continue on.
I am not typically a person who holds onto holiday cards, but I have a tray in the bottom drawer of my home desk with about a dozen meaningful ones. This card now lives among them. I still often think about my patient and her family, and I even look at the card from time to time. However, it is no longer in that liminal space within the side compartment of my bag. It has become integrated into my life and remains part of me—her story forever interwoven with my own.
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 oncology field. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Laura Vater, a gastrointestinal oncologist at the Indiana University Simon Comprehensive Cancer center. In this episode, we'll be discussing her Art of Oncology article, “The Holiday Card.”
Our guest disclosures will be linked in the transcript.
Laura, welcome to our podcast, and thank you for joining us.
Dr. Laura Vater: Hi, Lidia. Thank you so much for having me today.
Dr. Lidia Schapira: It's our pleasure. So let's start by just asking you a general question that I think our authors like to share with listeners. And that is, why do you write? When do you write?
When did you start writing?
Dr. Laura Vater: Yeah, so I started writing, actually, during my first few years of medical school as a way to process and cope through many of the challenges and the difficulties and the emotional ups and downs of training. When I was a third year medical student, I was pregnant, and I was rotating through the high risk maternal fetal medicine rotation, and I witnessed a stillborn child, and that child was about the same gestational age that I was pregnant at that time. And I thought about that family. Had they picked out a crib, and had they chosen the color of paint for their walls? And anticipating this life and having it end in this just grief. And participating in that ritual of loss really evoked a deep emotional chord in me that I remember walking out right after that shift was about 2:00 in the morning and it was freezing cold in February. As I was walking in the parking lot, I just started crying. And I thought, I need a way to process and cope with the challenges that I'm witnessing in my training that served me very well. I always journaled through medical school and residency as an internal medicine resident, as an oncology fellow, and now during my gastrointestinal oncology practice. And sometimes I go a week or two without journaling, sometimes I'm writing every day and it kind of depends on the week, but it is truly something that helps me process and cope.
Dr. Lidia Schapira: So it's good to know that you are so comfortable with words and writing as a way of processing. But I'm curious to have you address the next layer, which is then to go back and turn it into a piece of art, turn it into a piece of writing that you want to share with others. Can you talk a little bit about that process and the role that's played in your professional development?
Dr. Laura Vater: For a long time, writing was something very informal in my life, and then I started really enjoying spending time writing, and so I started participating in different writing groups. I participate in a Gold Humanism Writing Group with Judith Hannan. I did the Fall Narrative Medicine Workshop at Columbia, part of the Pegasus Physician Writers at Stanford University, where we meet every month to go over our writing. We've created a Writing for Wellness program on campus. And so this went from something very informal then something that I really was drawn to and loved, and that, really working with my peers, participating in writing prompts, reading both fiction, medical related nonfiction, and narrative stories, that's really crafted my ability as a writer to turn something that's just a reflection into something more, into something that I hope will help others. I think we all feel that way, right? If we share something that is perhaps a bit vulnerable, sometimes shrouded in shame, that perhaps it might help another trainee or early career physician through what they're going through.
Dr. Lidia Schapira: Well, maybe you're the best person that I can think of to answer this question, but tell me a little bit about how you see this narrative in oncology and narrative medicine applied to practice to training.
Dr. Laura Vater: I think that it's something that is necessary. It's something that helps me to pause, to slow down, to see the humanity in my patients, and also to hold on to my own humanity. And so it's truly something that allows me to continue to practice, and I hope to practice well through paying attention to the nuances of my patients and their stories. Sometimes, I'll be sitting in a room with a person, and I'll notice the color of their glasses, or I will be moved by something, a direct quote that they say. And I think that both reading narrative essays and writing helps me to slow down and to pay more attention. I think it helps, hopefully helps me to be a better clinician, but also allows me to have more meaning in what I do.
Dr. Lidia Schapira: Yeah, perhaps even we can use the word ‘joy’. It's more interesting if you're curious and open and you see these things.
Can I ask you how you deal with the emotional labor and the emotional investment in your patients? You seem to be somebody who has no difficulty engaging at a very deep level. But how do you work that through and fit it into the rest of your life?
Dr. Laura Vater: You know, it's interesting that you asked me that question, because over the last two weeks, that has been the question in my mind that I've been coming back to. I've been covering for a partner that's been out of town and another partner on maternity leave. And so I found that my clinical work has been a bit busier and that I've hit that point in my early career where I know my patients very well. But as a gastrointestinal oncologist, many of my patients, I'm walking through devastating recurrences of what we thought was curable pancreatic cancer is now stage 4. So I've found that even over the last two weeks, I had a few days last week where I came home after the clinic and I had nothing left in the tank. I have my husband and my eight year old daughter, and I just had a few days last week where I actually asked myself, I said, “How am I going to continue to do this work, both clinically, physically, intellectually, and emotionally exhausting days, right?” Our clinics can be all of those. Our clinical work can be all of those.
And so I actually took some time over the weekend. I've been intentional for a very long time about how can I connect with patients deeply to know them as human beings, help them to walk through really awful things, but then be able to have both health and wellbeing and joy in my own life. Because I think we deserve that. We deserve the health that we strive so hard to give to others. It's something that I'm still processing through. Things that help me cope? Of course, I regularly go to therapy. I think that really helps because I have a lot of patients who do pass from their cancers. And I also write. Writing is a tool that I come to, and sometimes it's even writing, “I'm emotionally exhausted today. And this and this, and this happened.” And sometimes it's being in nature, sometimes it's listening to music, sometimes it's just doing nothing. Reading a book I've read before or watching a show I've read before.
But I keep coming back to this idea of, there's this thought of we all develop some emotional calluses. The things that evoke emotion in us when we are first learning medicine, when we're medical students, are not the same things that may evoke emotion in us as we progress through our careers. For me now, it's often a person that I have a deep connection with that I've known over time. And in that moment when something really devastating happens, I'm finding that that is probably the most emotionally difficult thing, especially if that person is particularly young or has young children. And so I'm increasingly trying to find ways to cope with that, because we need to do that to protect our longevity, to be able to do this work.
Dr. Lidia Schapira: Yeah. And to stay fresh for our patients as well. I think that we are a culture that is immersed in grief, and we volunteered for this work. But I think we volunteered perhaps when we didn't quite understand all of the areas that this grief and the sorrow and this immersion into that culture can really deeply penetrate. It sounds like you have used all of the possible resources, and you're incredibly open and frank about it. I wonder if in your institution, people talk about it as frankly as you do.
Dr. Laura Vater: I have had mentors who have talked with me. I have the benefit of being trained through residency and fellowship at the same institution where I work. So I've known some of my mentors for almost 10 years, more than that. And so sometimes I will ask them, “How do you cope with this?” Some of my peers are incredibly funny and, not in a- sometimes sarcastic, yes, but not in a demeaning way towards patients, but they just bring a lightness to the clinic. Especially in the world of gastrointestinal oncology, where a mentor once told me that eight out of ten of my patients will not live long term. And so a lot of what I do is palliative care and end of life care. And I think we knew that. Like you said, we know what we sign up for. But sometimes the reality of that can be much, much different than that.
I do reach out to my mentors. I try not to burden them. But sometimes if we're in a clinic and I notice that we have a down moment, I might say, “Wow, I'm dealing with this.” And they'll sometimes share an experience from their early career or even recent and I think that's healing. There is something about being vulnerable with your peers, whether that's through writing and formally publishing a story and reading a story of someone you've never met, or even in those moments in the clinic or in the hospital where you share something with your residency team or your colleague that can be very healing.
Dr. Lidia Schapira: And even being able to open yourself up and be vulnerable together, or cry with somebody, or cry reading somebody else's story. There are some essays that have been published in The Art of Oncology that make me cry every single time I read them. And it's a way of feeling that I'm sort of in solidarity with a colleague's pain, or that I feel sort of understood, or that I have a community of peers, people who are also drawn to these very tense, emotionally intense situations, but find meaning in it and find meaning and keep going back to it on a very intentional basis. And I think you're probably one of the club.
So let's talk a little bit about your essay, this beautiful essay about this holiday card that you kept tucked in your briefcase until it was the right moment when you could process something that was deeply, deeply painful to you because it was a death that was out of place, that wasn't supposed to happen. Tell us a little bit about how this became a story for you.
Dr. Laura Vater: I still remember the moment that I woke up to an email from this patient's husband, unfolding that this patient had unexpectedly died the night before. And that was the first email that I read that morning. It was early, and I remember pacing in my office until it was late enough that I could call him. And, of course, then came all of the questions and all of the uncertainty and unfortunately, without answers ever being found. And just like before, when I was a medical student, I needed somewhere for this to go. I needed somewhere for this to go. And so this became even that day, journaling about this experience, in a way, of course, that protected my patient's identity. And as things unfolded over the next few months, I kind of came back to the same word document. And just anything that came into my mind as I was processing through this went there because I knew it needed a safe place to go.
And then months later, this was something I talked about through therapy over many, many months, actually, and then eventually to this encounter I had with this mentor who provided very healing words in a moment when he had no idea that I was processing all of this about a different patient. And how that eventually led me to be able to pull the card from my bag and really grieve, really allow myself to grieve in that moment. You don't stop grieving, but it helps you to find a healthy way to process through something very difficult and be able to cope and continue on and hopefully share with others that these things we go through in medicine, we're not isolated in our experience. You're not alone in what you go through when something like this happens early in your career. These are normal things that you're going to think, and it may take months or even years to process through.
Dr. Lidia Schapira: Yeah, I think the healing intention of your mentor's words or of a senior colleague or somebody just willing to sort of stand with you or be with you and share that is something that is so incredibly valuable. Maybe some of our listeners can think of moments where somebody has been there for them or where they have been there for somebody else.
Laura, I think that there's one or two books there hidden in your files. Maybe that's next. I mean, just the evolution of the process and the formation of your professional identity, your clinical persona, and the intention and attention you bring to the work. Is there a book in the making?
Dr. Laura Vater: Thank you, Lidia. That's very kind of you. I'm hopeful that at some point there may be a nonfiction book. I didn't share this with you yet, but I also write fiction. I've actually completed one novel, and I'm working on my second novel. Writing has become something that I never anticipated myself spending much of my time doing in my non clinical space, but much of what my fiction writing is really about the mental health of clinicians and well being, and also many of these challenges that we face. And so hopefully more to come in the next few years with those, yes.
Dr. Lidia Schapira: Yeah. I look forward to another conversation and to reading more of your work. Laura, this has been a lovely conversation. Thank you.
Dr. Laura Vater: Thank you, Lidia.
Dr. Lidia Schapira: 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.
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:
Like, share and subscribe so you never miss an episode and leave a rating or review.
Guest Bio:
Dr. Laura Vater is a gastrointestinal oncologist at the Indiana University Simon Comprehensive Cancer Center.
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Listen to ASCO’s Journal of Clinical Oncology Art of Oncology poem, "Rain Talk” by Dr. Karl Lorenz, who is a palliative care and primary care physician and Professor of Medicine at Stanford University. The poem is followed by an interview with Lorenz and host Dr. Lidia Schapira.
TRANSCRIPT
Narrator: Rain Talk, by Karl A. Lorenz, MD, MSHS
Rain splattering, a cacophony of
glassy dollops plopping, sliding, colliding,
crashing, plashing melted pearls.
Drops careening, onto the ground now
streaming, seeking, trickling,
slowing, flowing into a rill of connections.
Water nourishing blades of grass
becomes a field of forage, or the smallest
sprout of a redwood fairy circle.
Life springs forth from the pitter patter,
as words too, joined in thoughts,
converge, merge, spill, flow into action.
You lay cancerous, stoically shrouded.
I stood frozen, purged of words,
anxious amid the pulse, beep, thrum,
dry rustle of nurses’ coming and going.
A stiff-coated doctor fractured the quiet—
“I wish things were different.”
Her words fell stinging. Fighting
soul ache, I gripped your shoulder.
Grimacing, muffling sobs, as gasps,
a gurgling cry, erupted into a torrent
of tears clouding sight. Reaching,
we grasped hand over wrist over hand.
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. Karl Lorenz, a palliative care and primary care physician and a Professor of Medicine at Stanford University. In this episode, we will be discussing his Art of Oncology poem “Rain Talk”.
At the time of this recording, our guest has no disclosures.
Karl, welcome to our podcast, and thank you for joining us.
Dr. Karl Lorenz: Thank you for inviting me. It's such a pleasure.
Dr. Lidia Schapira: I'd like to start by asking you a broad question about the role of literature and poetry in your career as a physician, educator, and palliative care physician. Tell us a little bit about the history and trajectory of your participation in the arts.
Dr. Karl Lorenz: Yeah, thank you. Well, arts have had varied expressions in my life. I was a musician for many years, and I'd like to mention that because there's so many similarities between the types of art and overlap, and I think, what they teach us and how they engage us. But I was an instrumental musician for a long time, and then actually I studied opera and sang choral music in Los Angeles, which was really wonderful. I became a writer, I guess at some point. I was an English major as an undergrad. And the funny thing is I was an English major because I thought, “Oh, you know, I want to be a doctor. I'm not going to get to do this again.” And of course, that turned out not to be true, but it also was a portal, I think, into the emotional and meaning based motivations that I had for entering medicine anyway, which is an interesting place to start, right? And thinking about what drives us toward medicine, but also what sustains us. And in the time after entering medical school, I've had a bit of a drought with regard to writing. I wish that I had had more mentoring when I was actually studying medicine and training, but you're just scrambling to live during those years. Afterwards however, those experiences were so powerful that I did find myself scribbling from time to time, not necessarily constructively. And over the years, I learned that maybe I could do a little bit more with that.
Dr. Lidia Schapira: So tell us a little bit about the origin of this beautiful poem. Is it something that you scribbled in response to a particular event and then came back to months or years later? How does this emerge?
Dr. Karl Lorenz: So I've always aspired, or at least in recent years, especially aspired, to be more of a writer. Writing is such a craft, but for me, because I haven't treated it as such, I find myself writing under circumstances that are more emotional or spontaneous. I don't say that with any pride. It's just the truth. I think those things are a font of inspiration for writers in general, but certainly it's also a craft. So for me, I was standing on the porch of our house in North Carolina in the middle of an incredible downpour. But it was atypical in that the sun was shining at the same time, and it was such a beautiful sight. I found myself taking pictures of the water dripping off of the bushes and the eaves of the house above a lake. And just the emotions sort of welled up in me, and I wanted to capture that. So I started writing, and this poem sort of spilled out, not in this form, actually, it was quite a bit different, but I was capturing the sensory experience of standing in that rainstorm protected under the porch. And that's actually where some of the onomatopoeia comes from. The words and their collision, at least in the first stanza, were very much about what I was experiencing standing under that porch in the rain.
Dr. Lidia Schapira: They're very powerful, and rain is such an amazing metaphor. So before having me tell you what this said to me as a reader, why don't I go and ask you about bringing rain and water as a metaphor into what seems to me, reading this, a very intimate experience at the bedside, where you, the narrator, or where the narrator is really the loved one of the patient lying on the bed. Tell me, did I get that sort of right?
Dr. Karl Lorenz: I'm sure you've had many of those experiences, Lidia. And, yeah, the rain is a good invitation for that, right? It does bring life. I think that was part of the emotion I was experiencing into the eaves just to see it coming off of those green leaves on those plants or just that particular place where this cabin sits is actually technically a rainforest, western North Carolina, up in the Appalachians. And so it's just, it's lush, it's fecund, if I could use that word. It's bursting with life all the time. And so that conjunction is really so much what the metaphor was about for me at the time. And then the sounds themselves are physically confluent. And so I think that's where language emerged as the vehicle for metaphor, because for me, those things have been so much characteristics of conversation and communication.
Dr. Lidia Schapira: To go back to rain as water, I mean, we think of water as something that just flows through our fingers. And then you contrast that with a tempo, the force, the splashing, the colliding of the rain droplets. But it's all very life affirming. And again, I want to contrast that with what you're telling us later, which is water sort of as tears emerging in response to something that clearly is very devastating for the narrator and brings forth and evokes the grief about the anticipated loss. Tell us about mixing these things together. Again, I'm just filtering through my imagination as a reader, which is something that poetry gifts us, right? It helps us just create in our own minds the scene. But I wonder if you, as the poet, can tell us what you intended.
Dr. Karl Lorenz: I think those tears are a sign of pain, but aren't they also life giving? I mean, it's when we acknowledge loss that it becomes real, and then we can do something about it. And I guess as a palliative care doctor, that's always the place that I want to take patients to, not because I want them to lose. They're not going to lose because of me. It's actually when we acknowledge loss that we win in a sense, because then we can respond in a way that is life giving out of that loss, which we can't avoid most of the time. Sometimes we can, and we make wrong judgments about that. But many times I see it work the other way, that we don't come to terms with loss. Then we miss those opportunities to express love, to experience forgiveness, to build or renew, invigorate relationships, to make memories, to leave legacy, etc. And so those tears really are life giving in the sense that they are a place of acknowledgement where that kind of life begins.
Dr. Lidia Schapira: I wonder also a little bit about your perspective here as a narrator. I see you more as the doctor who is at the bedside empathically saying, “I wish things were different.” And yet here the narrator is not the doctor. So it's not seen through the eyes or the lens of the palliative care clinician or the oncologist or critical care doctor, that it is from the person at the side of, or the loved one of the patient who is on the bed stoically shrouded, as you say. Tell us a little bit more about your choice of that perspective for your narrator here.
Dr. Karl Lorenz: Oh, that's interesting. I don't know that I've thought about that myself. I guess I've had losses in my own life. And that's a really interesting point that you make. I guess maybe in writing the poem, I saw myself as kind of standing in the corner of the room with somebody that I love. No, that's interesting. I don't think it was conscious, actually, until you asked that question that I saw myself in the room as a narrator. I suppose it comes because of the fact that this is a poem that's rooted in personal experience. Yeah, I have been in the doctor's role many times. I've also been in the family role. And so I have seen it both ways.
Dr. Lidia Schapira: And I would say that to me as a reader, it also was an active empathic imagination, because one of the things that empathy involves is sort of really taking the perspective, imagining we are in somebody else's shoes. So here I thought it was very beautiful when you talk about soul ache, fighting soul ache, I gripped your shoulder, and then it is the grasp hand over wrist over hand. So there's the visual of the bodies coming together in an embrace. Was that based on a scene you imagined, or again, did it just kind of pour out of you almost like the rain poured onto the porch on that day?
Dr. Karl Lorenz: I'm a very touching person in the sense of I hug, I grasp, I hold. Touch has always been a tool that we use in medicine. I think it's one that we should be both cautious about, but also not overly cautious about. I think it's just a human expression and it's important, right? And so I have been touched physically in ways that are so profound and meaningful, and I think sometimes I have given touch in a way that is also in that regard. And so it's really just a human experience. Touch. Yeah. I guess this poem is about these different ways that we make those profound connections. It's a different form of communication.
Dr. Lidia Schapira: It's an incredibly sensory poem. At least it was for me, because between the touch at the end and the last stanza and the sound, you really are engaging the reader in incredibly profound ways. There's a lot of vitality for me in this poem. It's just beautiful. And again, the sound of the rain that I think of as water, an element that flows, but producing such a crashing, loud noise. And then this encounter in what may be an ICU or a hospital ward. I mean, it clearly is a medicalized setting, right. With so much drama, it is really very beautiful.
Tell me a little bit about how you plan to use this poem in your art as a clinician, as a teacher of young clinicians, or perhaps as a colleague. I find this very beautiful piece, and I wonder what your intended use is.
Dr. Karl Lorenz: Oh, boy, that's a great question. The funny thing is, I think I have used art and poetry and film in medical teaching in the past. Now so much of what I do is more cerebral, health services research. Of course, I still do clinical teaching. We find ourselves so busy and distracted. I would love to use this in teaching. I haven't actually thought about using my own poetry or writings in teaching, but yeah, this is probably a good one to try that with. I love Akira Kurosawa. I've used Kurosawa films about perspective and actually culture and its role in medicine. And I definitely have toyed with a lot of these modalities, but using my own art or poetry in this case, that's sort of scary. I guess I could do it.
Dr. Lidia Schapira: I think you can. And I have a final question, which I feel compelled to ask as a host for this particular podcast, and that is that once you had this poem and decided to share it with the world and publish it, why did you choose an oncology readership for your poem? Can you talk a little bit more about why this is perhaps important to put in an oncology journal that has built its reputation on delivering sort of the best science in the field? I certainly have been outspoken about the importance of having this sort of little space for the soul of our colleagues and our readers and our investigators. But I wonder if it was intentional that you said, “This is something either I'm gifting this to you guys,” or “This is something that you need. You need to remember all of the tears and the love and the soul searching that accompanies being that patient in the bed.”
Dr. Karl Lorenz: Well, I love JCO and the oncology community and how my colleagues are working to refine the science and the excellence of clinical care. Yes, there is a science of the soul and a science of communication and a science of caring, and I think our patients want us to practice in an elevated way across all these dimensions of what they need. And I think that's maybe the reminder or the embrace. We can't do one without the other. And I do mean that we shouldn't do the art without the science or the science without the art. And so I love that marriage about medicine, and I love that marriage about the practice of oncology. What better place for it to be? A poem that captures that in the spirit of one of the hardest moments in our encounter with patients should go in a place where it's understood.
Dr. Lidia Schapira: Well, thank you, Karl. Is there any final message that you want to convey? Or is there something that I haven't asked you that you'd like to talk about before we close?
Dr. Karl Lorenz: Maybe I just express gratitude. So often we write and we just don't know that we have an audience. I feel that way. And so to know that it connected with you or with other readers is just such a pleasure, because I think we write, and maybe it's healing for us in a way, but it's also healing for us to know that it's healing for others. So, thank you.
Dr. Lidia Schapira: What a lovely way to end this idea of community, and I think that's one of the intentions that we have through this podcast, also of connecting people to others and helping us all reflect together and feel accompanied by colleagues. So, thank you for sending this to JCO.
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.
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 individuals' 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.
Like, share and subscribe so you never miss an episode and leave a rating or review.
Guest Bio:
Dr. Karl Lorenz MD, MSHS is a palliative care and primary care physician and Professor of Medicine at Stanford University.
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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.
Show Notes:
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Guest Bio: Dr. Stacey Hubay is a Medical Oncologist at the Grand River Regional Cancer Center.
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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.
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.
Like, share and subscribe so you never miss an episode and leave a rating or review.
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.
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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.
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.
Like, share and subscribe so you never miss an episode and leave a rating or review.
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.
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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.
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.
Like, share and subscribe so you never miss an episode and leave a rating or review.
Guest Bio:
Dr. Scott Capozza is a Board Certified Oncology Physical Therapist at Smilow Cancer Hospital at the Yale Cancer Center.
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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.
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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.
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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:
Like, share and subscribe so you never miss an episode and leave a rating or review.
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
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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 room
with 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 pillow
and tiny red freckles smattering your skin.In the middle of the waiting your mind drifts back
to when you were younger, when the thing you liked best
to play with was an etch a sketch. You would maneuver the knobs
to 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 blur
with a few simple shakes; if no one saw it, did it ever really exist?When the doctor returns, you try to brace yourself but find
your 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 place
inward, where you are free to sketch the image of the two of you
at the kitchen table just that morning, before things changed.In a single movement you pencil in the harsh slant
of your own angled cheekbone. In another, you etch worry lines
into 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.
The purpose of this podcast is to educate and 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:
Like, share and subscribe so you never miss an episode and leave a rating or review.
Guest Bio:
Dr. Wendy Tong is an Internal Medicine Resident at McGaw Medical Center of Northwestern University.
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Listen to ASCO’s Journal of Clinical Oncology essay, “The Heritability of Cancer” by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada. The essay is followed by an interview with Granek and host Dr. Lidia Schapira. Granek shares how her mother's diagnose with breast cancer continues to shape her own life and experiences.
TRANSCRIPT
Narrator: The Heritability of Cancer, by Leeat Granek
I was 9 years old when my mother was first diagnosed with breast cancer and 25 when she died. The boundary between before and after is so clear that it feels like I have lived two lives. I went from being a careless, cerebral, quirky child to a rough version of the responsible, reliable, and vigilant adult I would eventually became. With cancer came the fear of losing my mother, and with that fear came an unwelcome but necessary maturity. There were other important life events impacting our family around that time that contributed to this sense of split. We had just moved from Israel to Toronto and knew few people in our new environment. My mother had just given birth to my baby brother, and my parents had bought a new house for our growing family. At the time, I was starting third grade in a new school—the fifth new school since beginning kindergarten. All this in addition to the diagnosis. My mother was only 33 years old—the same age I am now.
While I adapted to everything else—new house, new school, new brother, new country—cancer insisted on sticking around, and it claimed not only my mother's life but, in many ways, my own. Cancer enters the body of the caregivers in ways that move far beyond the domestic work involved in the running of the house or the management of medications and appointments. It can become part of caregiver DNA through inherited genes, but it often does so in more insidious ways.
My mother lived with the disease for 17 years before she died in 2005. It is fair to say I grew up in the hospital. Over the years, there were multiple surgeries, along with episodes of weekly chemotherapy and daily radiation sessions. She suffered a host of complications that came with metastatic disease and its treatment, including four instances of strep A bacteremia. Many major events happened in the hospital. We ate Chinese food with our matzos on Passover in her room and lit Hanukkah candles in the waiting room where we accidentally set off the fire alarm on the seventh night, to the consternation of the nursing staff. My 11th, 15th, 18th, and 25th birthdays were celebrated in cramped hospital quarters, cutting the birthday cake with a dull plastic knife. Indeed, the last birthday we had together was my 25th, and we marked it in the hospital 2 days before she died. In her last lucid moment, she managed to miraculously lift out of the fog caused by brain metastases to give me a kiss and exclaim “Mazal tov, Leeatie!”
I remember the sounds and the smells. Static codes being called out over the hospital loudspeakers. The haunting “clink, clink, clink” of the staples being removed from my mother's skin graft and landing with a loud clatter in a silver bowl. The pale green hallways and their antiseptic smell, which I grew to hate. The airless temperature that was neither hot nor cold—hospital weather, I used to call it. The hospital, with its sounds and smells, was my second home.
It sounds awful. And it was a lot of the time, but there were many good moments as well. My mother was smart, intuitive, funny, and astonishingly optimistic. She was always laughing and incredibly giving with her love and affection. We were exceptionally close. Her eyes lit up and her arms stretched out to give me a hug every single time I walked into her room. She would say things like, “Leeatie, I love you so much. I wouldn't change a single thing about you! How did I get to be so lucky to have a daughter like you?” and “There's no one in the world I would rather spend time with than you.” I didn't have to do anything to earn her affection. I felt that I always came first, that I was always wanted and loved, and that my mother was always entirely there for me in every sense of the word.
The hospital days that punctuated much of my childhood, adolescence, and young adulthood were both an annoyance and a blessing. There was nothing else to do but simply be together, which was fun and easy, thankfully. When I was older and no longer living at home, I would sometimes sleep over in her hospital room during her admissions. We would curl up in the twin bed and talk for hours until we both fell asleep, or we would sit together, each absorbed in her own book, comforted by the warmness of being together.
When I think about being a caregiver for my mom, and by extension a caregiver for our family, it was not the hours of care work—the babysitting, driving to appointments, spending time in the hospital—that consumed me. The impact was long-lasting and continues to this day. As a health psychologist and a researcher in the area of psychooncology, I know the permanent and long-term devastations cancer causes throughout the caregiver's—in my case, the daughter's—entire life span. To this day, I have no real sense of what normal physical development for a woman should feel and look like, and in some sense, I never will. I entered puberty around the same time my mother was having her breasts and ovaries removed, which made that phase frightening and emotionally difficult. And now, I have no mother to turn to and ask about my endlessly evolving female form, no mother to guide me through future pregnancies or talk me through gray hair and menopause.
Cancer shaped my young adulthood and my emotional development. At 20 years old, I was dealing with issues facing 60-year-olds who care for ill and aging parents. Because part of me recognized that time was running out—indeed, because I lived almost my entire life with a neon awareness of my mother's mortality—I was tethered to home and making decisions about school, life, and love that would keep me close to her. I don't regret these choices or a single moment that I chose to spend with her, and now I have an entire lifetime to come and go as I please. Being challenged with a cancer-driven perspective at 20, however, carries risks of having an entire lifetime being developmentally out of step with one's peers and unprepared for life events outside a hospital. For example, at 25, I could look death in the face without trembling and without abandoning my mother at her end, but I was unprepared to face the dating world that most young adults would have no trouble navigating. Although I was and remain a loved, nurtured, and supported daughter, cancer diverted the vast majority of the temporal, emotional, financial, and physical resources in our family toward fighting the disease. When she was alive, my mother was fully present in my life. But even her unconditional love could not repair the reality of my out-of-sync development as a child and young adult or today make up for her continued absence in my life.
My absent mother is at the core of a black hole of grief that remains inside of me and that has been painfully pried open with subsequent losses to cancer—my grandmother and my aunt, a professor I admired and family friend that I loved. Each loss re-exposes a haunting grief I have learned to accept and live with. Grief is a shadow that looms large in my life. It is both the topic I chose to study and the affect I advocate fiercely for,1–4 because as I have learned through my own experiences and research, love and light come from the same place as grief and darkness.
The ability to grieve our losses fully also allows us to love and appreciate the people in our lives when they are still with us.
And then, of course, there is the worry: the biannual check-ups, magnetic resonance imaging scans, and mammograms; the surveillance and the false positives and the constant paradoxical tension that comes with the awareness of the nature of these tests provide a false sense of control over a disease that refuses to be harnessed.
The literature about the impact of parental cancer on children at the time of diagnosis, during treatment, after surgery, and even at the time of death is extensive,5–6 but few of these studies acknowledge how much this disease alters the life course of the child well after the parent has recovered or has died. Being a caregiver for a patient with cancer consumed much of my childhood, adolescence, and young adulthood when my mother was alive and charted the course for my future as a health psychologist working in the field of psychooncology. Although many years have passed and although I have a doctorate in hand, several years of postdoctoral training in the field of psychooncology, an academic career studying these issues, and dozens of publications from my research on the psychological and emotional effects of cancer on patients, caregivers, and their families,7–16 from time to time, I still feel like a scared 9-year-old child trying to gain control over this disease and get out of the shadow that cancer has cast on my life.
Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management. In this episode, we will be talking about her Art of Oncology article, "The Heritability of Cancer." At the time of this recording, our guest has no disclosures. Leeat, welcome to our podcast and thank you for joining us.
Dr. Leeat Granek: Thank you so much for having me. It's a pleasure.
Dr. Lidia Schapira: Your essay is a classic, and I'm so glad that we were able to include it in the recent anthology of Art of Oncology. So let's start by talking a little bit about what led you to not only write, but decide to share this essay eight years after your mother passed of breast cancer. Bring us to that moment. Tell us what you were thinking.
Dr. Leeat Granek: Yeah, so that's a great question. And I recently, in preparation for this interview, reread it, and I was a little taken aback, even by how exposed and how vulnerable it was. But I really like that essay, and I'm really glad that it was published. It was kind of a culmination of a lot of thoughts that I was having as a person who has researched grief for many years, and as a person who was working in the field of psycho oncology, doing research in the area, and as a grieving daughter. And I think eight years is nothing in the grieving trajectory, right? We often think about grief as something acute that happens to you, and then you get over it and you move on with your life, and that certainly has not been my experience of grieving. I think it changes as you change, and it's just a constant presence in your life.
And I was thinking about that in the context of being a caregiver for somebody who has cancer. So I think my experience is a little different than others, just because my mom was very young. She was 33 when she was diagnosed, and I was only nine. And she lived with this metastatic disease for nearly 20 years. So we had a very long journey with cancer. And I can kind of see now, as I reread it, the parallel thinking processes I had about grief and about cancer. And being a researcher in the field, I still feel that there are a lot of gaps in terms of the caregiver experience. But this idea of heritability, we often think about cancer as something you inherit genetically through our genetic makeup. But I think that it really, especially when you're young, changes your whole life trajectory. And I could not find anything in the literature that spoke about it in that very longitudinal kind of way and the way the impact of cancer changes you throughout your entire life. And so it just came from a very personal place, but also that intersection of being aware of the different literatures and how they came together.
Dr. Lidia Schapira: Let's unpack this a little bit. One of the things that you just said was that you shared your vulnerabilities, and I want to ask you a little bit more about that. Here you are. You're about the same age that when your mother was living with this as a young woman. I think you said that she was diagnosed roughly at the time that you were writing this. And you decide to explore this wearing a little bit of your research hat in a very deeply personal way. But then the question I wanted to ask you is your decision to share this with the community of oncologists, the people you knew very well because they had looked after your mother for all those years. Tell me a little bit about that. How did you make the decision not only to write it, but to share it?
Dr. Leeat Granek: That's a great question. This also pertains to the research that I do, because a lot of the research I was doing at the time, as a result of my experiences with cancer teams as a child, looked at the emotional impact of being an oncologist. I did a series of studies looking at the way oncologists grieve and how they feel when patients die, some of the emotional burdens of the work. And they were very vulnerable in sharing their experiences. And so I thought, well, they're telling me about their experiences, I can also tell them about mine. And I think that there's kind of a mythology around oncologists. I'm doing studies now on surgeons as well, and I think there's the same mythology around surgeons is that they don't feel or everything is compartmentalized and everything's separate.
But from my research, I knew that that wasn't the case. And I felt that, although oncologists and oncology teams and nurses as well, witness patient suffering and family suffering, that there was nothing in the literature that kind of brought it home in this very visceral way. I don't think it would have been a surprise for any oncologist reading it, because when you follow families or when you follow parents, you see the children coming in. And so there was something about this intersection of their vulnerability and my vulnerability, enriching the experience of what it means to be a patient, and what does it mean to be a healthcare provider, which is not something that's often discussed in medicine at all.
Dr. Lidia Schapira: So to your point, I think that telling the story was a beautiful sort of vehicle for opening up the topic. You were doing it through your research. But telling a story can often start a conversation in a very different way. That's what we try to do also in selecting these essays for Art of Oncology, to bring a story that's deeply personal, that reflects one's lived experience, but opens up a topic that is otherwise perhaps not talked about as much as we think it should. So let me go back and ask, what was the impact of telling the story on your research?
Dr. Leeat Granek: I just want to add something about what you just said about stories. The very first paper that I published on oncologist experiences of grief, I wrote an op-ed for the New York Times about that research. And it was very story-based. It was very much telling a story, and I was telling my own story as well as a story about the research. And the response to that op-ed was so profound and so much more powerful than any paper I had ever published. I got thousands of emails from people around the world, oncologists and healthcare providers around the world, just saying how touched and how moved they were by that op-ed. And that is the power of the story that you're talking about right now, that we're vying for these peer-reviewed articles all the time. But actually, the impact of just telling a story is so much more meaningful and visceral for the reader than just outlining the research findings.
Dr. Lidia Schapira: And it sounds like just receiving all of those emails after your op-ed was probably very validating. We can get rejected when we apply for grants, but people were telling you what you’re onto is really significant.
Dr. Leeat Granek: Yeah. And I think that validating in the sense that what I felt was that as you, exactly the words you just used, that it was a conversation that was not being had to the detriment of all. And so it validated that feeling of, yeah, this is something that's really important for us to be talking about in oncology. And just in terms of the response to "The Heritability of Cancer," it was a long time ago. This is 2014, so 10 years ago. I don't remember entirely what are the specific things that people said, but I do remember getting a lot of emails about it, mostly from healthcare providers, so less from caregivers or patients who may not have subscriptions to JCO, but maybe through the podcast now will have more access. Just saying this really shed some light as to the experience of what does it mean for the extended family that I think is not often considered. Certainly, we don't think about kids very often when a parent is going through cancer.
Dr. Lidia Schapira: If you were to write this today, what would you do differently?
Dr. Leeat Granek: I think what's changed for me– I don’t think I would do anything differently, but what I think has changed is that I've had a child since I written that. Having a seven-year-old and thinking about what it's like to be going through a cancer diagnosis or cancer treatment while you have children. That piece was very centered on me and my experiences, and now I have even another layer of empathy and compassion for my mom, who had a newborn at the time. And I can just not imagine anything more– it’s going to make me cry just even now just by thinking about it - it’s just scary to have such a life-threatening diagnosis when you’re a parent. Just like grief, like I said earlier, being a victim of cancer or being part of your family, that impact is lifelong and it changes as your development changes. Now as a parent, my grief is different than it was before I became a parent. And now as a parent, my understanding of what my mother was going through is changed. That terror and fear is so overwhelming.
Dr. Lidia Schapira: So, Leeat, I can't help myself, but I need to ask you some practical questions. You're a psycho-oncologist, an expert in grief, and you've talked to and interviewed hundreds of oncologists who have shared stories, you're now a parent, you’ve lived through it. What it makes me think is that when we think about grief counseling or support for grieving children or bereaved spouses or parents, you think about it as an acute intervention and what you’re suggesting is this needs to be explored throughout the life cycle. What are your thoughts about that and what should we be thinking about?
Dr. Leeat Granek: I've written a lot about this in my grief work. The evidence for psychological counseling for grief is not strong actually when we look at the literature. For acute grief experiences in the immediate aftermath, sometimes it’s helpful having someone to talk to. But in actuality, the most helpful is having a community in which grief is an open, accepted, acknowledged, part of living life. And that does not change after the first month or the first six months or the year, five years or ten years.
Other people may have moved on very quickly, but you’re left with the impact of that loss. And I think the impact of that loss is not only after, when the person has died, it’s also that progressive loss of function. The kind of witnessing of your loved one deteriorating. It’s not just meals that you need, you also need that emotional support. And that emotional support doesn’t necessarily have to take the form of, “Tell me about your grieving right now.” Sometimes it’s just being with. And I think that certainly in North America, we're not very good at integrating grief, loss, pain, suffering, and negative emotions into our day to day lives. So partly, 10 years, 20 years, or 25 years later, it’s hard for people to remember that loss.
So I think the person is grieving that many years after may have to reach out and ask for the support. But I think it’s done really well in certain religions. I am Jewish and in the Jewish background, you have so many layers of mourning that’s lifelong. So you have the acute grieving experience where it’s seven days or 30 days or one year. And then every year progressively after that four times a year, you say a blessing and remembrance and give charity in the name of the dead. And for religious people, I’m not religious, this idea of every single day for that first year having to go synagogue and having to have at least nine other people that could be there with you to say the prayer for the dead, whether you believe or not believe, whether you’re religious or not, I think the brilliance in those kinds of rituals is that it simply brings you together with other people who see you everyday.
And decades later, still that four times a year that you’re meeting with people and you’re saying a prayer, or that yearly yahrzeit, that memorial allows people a very very defined space in which to support the mourner. And I think other religions have it too.
Dr. Lidia Schapira: Those are beautiful thoughts, and I think it speaks to connection and community as a way of supporting rather than pathologizing the grief and thinking what one needs is some sort of a professional intervention. I can’t help but add that as a community of caring oncologists, we are constantly grieving. We are immersed in grief, and in part, there is no label for how we feel. There is a small literature that you probably know far better than I do on disenfranchised grief, which is the idea that we can't quite claim to grieve because we weren't a relative or best friend, but we deeply cared and we lost and we grieve. So I find that this conversation is so helpful because I think what we’re doing is we’re talking about what we ought to be talking about more: perhaps acknowledging more from a point of view, as you say, of a parent, researcher, caregiver, medical or healthcare professional who’s involved. We are living in a society where perhaps we are afraid to think that grief is a part of our life, and we can be happy even if we grieve.
Dr. Leeat Granek: Yeah.
Dr. Lidia Schapira: Happiness is not just the absence of sadness, I think, I don’t know. You are the psycho-oncologist, tell me if I’m wrong.
Dr. Leeat Granek: I so appreciate what you’re saying and it makes me sad to hear that grief is still so stigmatized among oncologists. I think what my research has found and all my conversations with people over the decades now is, of course, oncologists feel a lot of things. Not just grief but pain and suffering, distress at seeing their patients and their families suffering and declining. Why wouldn't they? They are human beings. So I think this idea that people don’t feel or don’t have space to feel is part of what leads to burn out actually. I think there’s a kind of fear that grief and the pain and suffering is the burn out but it’s not. In fact, what’s the burn out is the inability to talk about or to have a space to discuss it.
And I also think that the thing that gives meaning to the work is that relationship with patients. And by the way, I’m finding that with the surgeons as well. The surgeons are even more kind of disconnected in terms of emotions. We kind of assume that they feel nothing, that they are so disconnected. By the way, I just have to say, the surgeons say, “I can’t believe the oncologists does that job.” They find it really hard to believe that oncologists can do that, that they can never do that job. And the oncologists say that about the surgeons, too. So I think it’s very interesting how different medical groups look at each other.
But there’s this kind of sense that’s very unique about the grieving experience of how care providers is and they feel a lot of guilt and a lot of self doubt, and self criticism when patients die even though they know consciously that there’s nothing that they could’ve done and that is just the disease that is taking over. That lack of control and that sense of having failed the patient is so strong. That is a very unique grieving experience for providers who feel responsible for the care of their patients. The fact that there is no training or no education or no space to talk about that is just appalling to me as a psychologist. Because I just think you learn how to do everything else. There’s so much training on communicating bad news, on dealing with patient anger, on dealing with patient emotions and how to respond. But nothing on how to deal with your own emotions in response to this. For years, it’s just about communications training.
One of the things we find in the literature is that even when you provide communication training to oncologists that have to discuss end of life, often those skills are not sufficient to be able to have that conversation. And what’s missing is the notion that I found in my own research that they don’t have this conversation because they feel so uncomfortable with it themselves. And so until they have some self reflective practice for healthcare providers, all the skills training in the world is not going to help because it’s about your own emotional resistance.
Dr. Lidia Schapira: Well, this has been a phenomenal conversation, and I hope people will look at some of the beautiful research you've done in this field. Thank you so much for having shared your own experience, for the work you do, and for participating in today's podcast.
Dr. Leeat Granek: Thank you so much. I really enjoyed it.
Dr. Lidia Schapira: 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 the ASCO shows at asco.org/podcasts.
The purpose of this podcast is to educate and 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, experiences, 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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New York Times Op-Ed: When Doctors Give
Two Decades of Art of Oncology
Guest Bio:
Dr. Leeat Granek is an Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management.
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Listen to ASCO’s Journal of Clinical Oncology essay, “Pet Therapy: How the Cat I Never Wanted Saved My Life” by Dr. Fumiko Chino, Radiation Oncologist at Memorial Sloan Kettering Cancer Center.. The essay is followed by an interview with Chino and host Dr. Lidia Schapira. Chino describes how she became an unlikely cat owner and how her "pet therapy" allowed her to move forward with life as a widow.
TRANSCRIPT
Narrator: Pet Therapy: How the Cat I Never Wanted Saved My Life, by Fumiko Chino
My husband and I adopted our cat, Franklin, on a cold November day. It was one of the last days that Andrew felt well enough to leave the house to go anywhere other than to chemotherapy or a doctor’s appointment. Our news at these appointments had shifted toward the negative, with disease progression on scans, low blood counts, and fluid accumulating in places it shouldn’t be. After a year of aggressive treatment, his body was tiring out, and treatment options were becoming limited. Andrew had always wanted a cat, but I was resistant; I knew that I would be taking care of both of them and wasn’t sure that I was ready. At a certain point, though, if your dying husband wants a cat … you get a cat, right?
Franklin was a rescue—a scrappy orange boy with stripy legs and a spotted belly. He played with my husband’s oxygen tubing, batting the plastic back and forth. He adapted quickly and would sit in Andrew’s lap in a warm furry ball, signaling his comfort with loud, full-throated purrs. He would play fetch with my husband, who often wasn’t strong enough to leave the bed. There was a large bowl of wrapped candy in the living room, and Franklin would bring one to the bed. Andrew would throw it from his propped-up perch in the bed; if the angle was perfect, he could fling it from the bedroom, through the slight zig-zag of the hallway, and into the large open living room. Franklin would race off to chase the candy and then trot back to deposit it one more time in Andrew’s lap. They could do this for hours, it seemed, until one of them tired and then they would nap. They both napped a lot.
After Andrew died in March, it was hard to keep a schedule. Days and nights would drift into each other; it was the gray days of late winter before spring showed any promise of life. Franklin was my constant companion and followed me around the house, sitting in the living room to watch a movie or on a kitchen chair to stare at my meals, even into the bathroom. He slept at the foot of the bed and woke me up in the morning to feed him; he made it hard to sleep in all day and forced me to keep at least a semiregular schedule. I walked everywhere, trying to make simple tasks last all day; walking to get Franklin’s food from the pet store was a triumph of activity. We did, of course, take a lot of naps; sleep was an easy escape from my purposeless existence. He would fit his furry warmth in the crook of my knees or sprawl across my lap, mitigating the cold emptiness of a lonely day. He was a living presence when all I could see around me was death.
Grieving is no simple process but, with time, I was able to return to some semblance of a normal life. I found focus in singular steps: researching school options, studying for the MCAT, interviewing for and ultimately entering medical school. One step at time (one application, one class, one shelf) is how I progressed from grieving widow to oncologist. Franklin would sit on the kitchen table where I worked, putting his paw occasionally on my papers or resting his chin on the warm edge of my laptop. He kept me company through grueling hours of studying and welcomed me home from the hospital at all hours of the night, greeting me with a small noise halfway between a squeak and a meow. Franklin was a welcome constant as I reinvented myself as a physician, a comforting touchstone as I shed my former life as an artist and wife and gained new footing as a clinician and researcher.
I am now in my first year as an attending physician in a world-leading cancer center; Franklin has moved with me to a glorious, light-filled apartment in New York City. Looking back over the decade since Andrew died, I know that Franklin was the last gift that he gave me. I was so depressed and lonely; I don’t think I could have survived that first dark winter without his presence, much less made it through medical school and residency. That’s the thing about pets; you care for them, but they also care for you. Franklin provided that extra layer of support that allowed a desperate present to turn into a hopeful future. When I meet with patients and families struggling through treatment now, I try to highlight these simple support goals: physical company, a routine, love and warmth. We talk about who is available to help and what comfort they can provide. And for those struggling alone, I sometimes recommend they consider a trip to the animal rescue. I tell them, they may find that they get rescued too. I know I did.
I moved out of that first house a couple of months after Andrew died. It was too big for just a lady and her cat. When I pushed our bed out from against the wall, I discovered a small pile of candy that had slipped behind his pillow down the back side of the bed. After he was gone, Franklin had continued to bring candy to my husband’s side of the bed and it had been piling up. I sat down on the floor of our big, empty house and cried big, ugly tears while staring at that stale candy. Then, like a gift, Franklin came over and sat in my lap, a small, warm presence, purring.
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 an Associate Editor for Art of Oncology for JCO and a Professor of Medicine at Stanford University.
Today we are joined by Dr. Fumiko Chino, a Radiation Oncologist at Memorial Sloan Kettering Cancer Center. In this episode, we will be discussing her Art of Oncology article, "Pet Therapy: How the Cat I Never Wanted Saved My Life."
At the time of this recording, our guest has no disclosures.
Fumiko, welcome to our podcast, and thank you for joining us.
Dr. Fumiko Chino: Thank you so much for having me. I'm happy to be here to talk about my pet Franklin, but also to talk about how our animals care for us just as much as we care for them.
Dr. Lidia Schapira: That's a beautiful thought. Let me first start by just expressing my sincere condolence over the loss of your husband. We have met so many times at medical meetings and have had a chance to talk about work, but this is really personal, so I just wanted to start our conversation by acknowledging that very important part.
Dr. Fumiko Chino: Thank you. I think a lot of us are drawn to the field of oncology for one reason or another. Sometimes we're anchored by the experiences of our friends or our family members, or that one patient that you couldn't get out of your head in medical school. Mine, obviously, I think, started a little earlier than most with my husband's death, and it kind of drew me kicking and screaming into medicine and then into oncology. But against my sort of better angels, I ended up in oncology. The roots of this tree are strong, basically.
Dr. Lidia Schapira: So let's talk a little bit about that and the experience of being a care partner, a caregiver, a caretaker. As a very young woman, I think you were an artist at the time, not in medical school. Can you bear to share with us a little bit about that part of your life, those years or months?
Dr. Fumiko Chino: Sure. So I always say that caregivers are kind of the unpaid glue that keeps the US healthcare system together, functioning, working. And the caregiver experience and the burdens that caregivers have are sort of just barely being explored now within research. And I can certainly tell from my own personal experience that being a young caregiver was very challenging. My husband and I were both in our 20s. We were trying to establish our careers. We had a significant battle about his health insurance, which is a very common problem for young people. And even after he died from cancer, I actually was uninsured because I was on his health insurance. So it's hilarious for me now as a researcher who does research on access and equity and insurance that I myself was uninsured for, I think, about two years, actually.
But those burdens of caregiving, they're sort of physical exhaustion, they're mental exhaustion, but they're also emotional exhaustion. And it's sort of all of the above, all hands on deck when someone you love is sick. And I think it's part of when I shift into research mode or patient centered care mode, I always try to think about the complete picture for the person in front of me, which is also their spouse, their parent, their sister, sometimes their friend, who are also, I think, part of the journey of cancer, but often sort of unacknowledged.
Dr. Lidia Schapira: Let's talk a little bit about that, the sort of the emotional side of caregiving. Yes, you talk about burdens and exhaustions, but what I read in your essay is also about the love and connection that you experienced during your husband's illness with him. And then this third party, the story is this adorable cat. Can you talk a little bit about that? All of the positive side, not the burdens of caretaking and caregiving, but the love and connection.
Dr. Fumiko Chino: It's sort of shocking when you go through something critical together, how much that bonds you, how much it deepens your connection and your capacity for communicating effectively and making hard decisions. I always say my husband and I were only married for a year, essentially before he died. But it's like dog years. One year of cancer is sort of like seven normal people years. And so we had so much love and humor and insider jokes going through the experience. It's certainly never recommended for anyone. But I will say that it made me realize how much I did love my husband, how deeply connected we were.
And then this introduction of a small, fuzzy animal was something that I never realized that would make a difference for me personally, but that would carry me forward through my husband's illness and his death and kind of help me become the full me that I didn't even know I was supposed to be at the time we adopted Franklin. And then again, the love that we had together, our little tiny family unit, a cancer patient, a cancer caregiver, and a rescue cat. We were quite a cohort for as long as we lasted.
Dr. Lidia Schapira: And the other incredible theme that emerges from your essay is the grief and the deep, deep grief that you experienced. How long did it take and how did you manage to climb out of that?
Dr. Fumiko Chino: I mean, I'm still grieving, right? So that's the thing about grief, is that it changed shape and color, but it never really goes away. There's this phrase, time heals all wounds, and that's certainly not true. I think that the wound is different. It's not quite as raw, but I'm still grieving. But in terms of pulling myself out of the deep depression that I was in, it was years. I'll be honest. I was sort of groundless. I had no purpose. I feel this sometimes as an oncologist too, which is we feel that when our patient dies that we failed. I only had one job. It was to keep my husband alive, and I didn't do it. And so it took a long time to kind of rebuild myself and my personality when I had quit my job to take care of him. So it really was my only purpose. And then when that went away, it took a long time.
It's interesting to be on the other side of it now and to sort of think about, well, what are the lessons I can take away from that? To try to practice for myself truly patient centered care and to think about everything that our patients and their caregivers really need to continue on because it's not an easy thing.
Dr. Lidia Schapira: Let me just say this and that is that it is absolutely amazing that you have constructed sort of a professional persona from this experience, but it's also your experience and your story. And what I'm so deeply moved by and a little curious about is you're taking it to a story and bringing the narrative side to your professional community. It's not as if you wrote a story or journaled about this and shared it with your friends and family. You actually made yourself vulnerable in a way. And I just want to pick up on that a little bit more because clearly from where I sit, this makes a huge contribution to the discourse in oncology as well, to acknowledge the personal side, the emotional side, and make it a story. And so with that, I just wanted to ask you this. How long did it take or what was the process for this series of experiences that are so intense and emotional to become a story and something you could write?
Dr. Fumiko Chino: That is such a good question. I will be honest to say that I didn't tell any stories at all about my husband having cancer until long after I decided to become an oncologist. And it was only when I was doing the research that I was doing in financial toxicity where I realized that story could make the message of the research more powerful. I knew always why I was doing the research. But having that deeply rooted, personal, let's be honest, terrible story, it could make it more meaningful, it could make it more understandable for people who hadn't personally experienced it. And so I think, similarly, realizing that the larger story of love and loss and of caregiving but also of how these funny things like pets that can make a difference for individuals and families, to develop that into a story that you could tell, again, a decade, to think about how that could turn around essentially into something that is not just a feeling, but is words and paragraphs.
Dr. Lidia Schapira: Yes. And it was obvious to me when I first read it, the beauty of the position that I have as an editor is that I'm the first reader, is that I felt that I felt the enormous amount of years that went into processing these feelings and then how skillfully you introduce the humor and through the character of the cat. And the cat going to fetch the candy wrappers and bringing them back. I mean, it's beautiful. One of the things Fumiko that I've so admired also about your work is your advocacy, your advocacy for trainees, your advocacy for inclusion and diversity, and your advocacy for pets. Tell us a little bit about how those strong commitments you have to bring people up and to sort of change things for the better are also deeply rooted in your lived experience.
Dr. Fumiko Chino: I have in my life been incredibly privileged. I know this deeply. And I know that even the turning of round of my life from being a grieving cancer widow into being a physician today is deeply rooted in my privilege, from being from a medical family, from being from an educated family, from being from a family where everyone was expected to go to college and succeed in one way or the other. And so realizing that not everyone has that privilege of being able to overcome these obstacles because it's just a pile on. I think sometimes being able to provide that sponsorship and mentorship for other people has been just a strong pillar of my personal mandate for the physician that I wanted to be, for the researcher that I wanted to be. It's rooted from the fact that there's been some bad things that happened in my life, obviously, but my capacity for moving forward and reinventing myself is deeply rooted in my own privilege.
Dr. Lidia Schapira: To bring this short conversation to a close, I wonder if you can reflect a little bit on the role of art. I mean, every time I just see you, I think of art. There's a sort of an artistic aura about you, just the way you accessorize yourself and how you present yourself and all of the images that you choose to post. It's a very deliberate image. So tell us a little bit about both visual art but also stories and how you feel in your role as an academic oncologist they can humanize our culture, they can inspire, they can help, they can even inform research questions. I'd love to hear your thoughts about that.
Dr. Fumiko Chino: Whenever I was in high school, I had these two great loves, and they were science and they were art. And unfortunately, I think I grew up in an era where you really did have to go one way or the other. And so for me, I chose art. And so I had a Bachelor's of Fine Arts. I was immersed deeply in the art world as a young adult and as a growing faculty. It was only cancer that kind of brought me into the science again. But having been immersed in art for so long, when I transitioned over to the more medical school residency, now as an attending, I never wanted to leave the art behind because it so deeply informs how we view the world. And I think that perspective, that shift that comes with looking at a new piece of art, it makes us all stronger observers and, I think, stronger communicators.
And we all approach art very differently. The example I'll give is that my husband was really into jazz, and I hate free jazz. It just drives me insane. Because for me, my question always is for a piece of art - so in this case, free jazz - what are they trying to communicate to me? And he said, “Well, that's not how I take it. I say, how would it feel to make this music? It's the actual mechanics of making the music and absorbing the music.” And that's how he interpreted that form of art. And I was just always like, “Oh, but I don't get what are they trying to tell me?” And I think that is also just incredibly amazing, that art communicates different things to different people. And it reminds me to take a break and to say, you know what, I feel so steadfast in my opinion that this is the right way of doing something and it could be that someone is going to take it in a totally different direction.
Dr. Lidia Schapira: Let's end on a note on Franklin. Is Franklin still with you?
Dr. Fumiko Chino: So I was happy to be recording this podcast now. So Franklin died last month.
Dr. Lidia Schapira: I'm so sorry. He died in my home with a home hospice vet. And it was really beautiful. It was exactly what I would want for myself if and when I go, to be surrounded by love and comfort. He was with me for 17 years. Obviously, got me through a lot. And it was a message to me how we could be doing better for our patients as well. He did have cancer, and he had cancer that was rapidly growing. And so that way of putting a bookend in our experiences with cancer, I feel like it was the last message that he gave me that that's the gift I could give to him.
Dr. Lidia Schapira: Well, take care of yourself, please. Again, my condolences on losing Franklin. Thank you for your openness and for your willingness to share. So we are so fortunate to have you in our ranks. I'm very glad that you're doing what you're doing.
Dr. Fumiko Chino: I appreciate the time to talk to you again. This message about a silly cat and his human, I think, certainly it's my story, but I know that many of our patients also have this deep connection with their animals and it really does carry them through some very dark nights.
Dr. Lidia Schapira: So until next time and thank you for joining me today in this very moving interview. Thank you for listening to JCO's Cancer Stories: The Art of Oncology, and for our listeners, 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. Until next time.
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. Fumiko Chino is a Radiation Oncologist at Memorial Sloan Kettering Cancer Center.
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Listen to ASCO’s Journal of Clinical Oncology essay, “Gosses and the Dalmatian Puppy” by Dr. Zvi Symon, Senior Consultant at the Sheba Medical Center in Israel. The essay is followed by an interview with Symon and host Dr. Lidia Schapira. Symon reflects on an ancient Jewish tradition while seeking to palliate a dying patient.
TRANSCRIPT
Narrator: Gosses and the Dalmatian Puppy, by Zvi Symon, MD
A few months ago, I was paged to see a newly diagnosed patient in the hospital with a malignant trachea-esophageal fistula to consider palliative radiotherapy. Despite the 60-minute delay that had already accumulated in my clinic, I hurried past the folks in my waiting room as they scowled their dismay, and promised to return quickly.
My new consult was a 70-year-old man who had lost 30 kg over the past few months. He was a heavy smoker with chronic bronchitis and a squamous cell carcinoma of the upper esophagus gnawing into the cartilage of the upper airway. The surgeons ruled out any hope for surgical remediation. The gastroenterologist attempted to insert a stent but could not get past the tumor’s stricture, so radiation therapy became the last option.
On the edge of the bed near the hospital room’s window sat Vladimir, a ghost of a man, coughing intermittently with a constant drool of saliva dripping into a stainless steel bowl that he held in his lap. I introduced myself, but he hardly acknowledged my presence, consumed by his own discomfort. I turned to his pleasant, gray-haired wife sitting in the blue armchair next to his bed. Before proceeding, I asked her what he knew about his condition, and she referred the question to him in Russian. Vladimir closed his eyes, sighed heavily and said softly: “I don’t feel well and… cannot eat.” His wife watched me as a sad smile played on her lips, and she struggled not to cry. I paused for a moment, remembering my full outpatient waiting room, but wanting to give his story justice. I turned to Vladimir’s wife.
“Tell me a bit about Vladimir, what did he do before he became ill?” I drew up a chair and sat closer and she sighed. “He worked as a builder. When the family emigrated to live here in Israel, his mother died soon after. He became deeply depressed and took to the bottle, spending most of the day sitting on the porch, drinking vodka, and chain smoking. A few years ago, I bought him a cute clumsy
Dalmatian puppy who adored him, romping around happily, licking his hands, and jumping all over him. He developed a special relationship with the dog, stopped drinking and took the dog each day for a long walk—well, perhaps the dog took him for a walk.” A smile flickered across her face briefly. “Unfortunately, the dog died a few months ago and he sank back into a depression, stopped eating, and has lost weight.” I was touched and saw the tears in her eyes flowing freely. “Do you have any family, perhaps children you would like to call to perhaps join us for the discussion?” I asked.
“We have two grown-up sons. One is currently ill with COVID and cannot come, and the other son also suffers from major depression: He has a hysterical paralysis and does not leave the house. I work as a cashier in the supermarket and am the only breadwinner for my sick son and husband.” I wondered if she had any idea of his prognosis and started a discussion regarding treatment options. Vladmir’s wife told me that she had heard that radiation therapy could help.
And while I would have loved to have played the role of knight in shining armor, saving him from the ravages of his cancer with radiotherapy, the reality is that the intervention is controversial in the treatment of trachea-esophageal fistula.
Should I raise the possibility of not doing the treatment? How would it be received? What could I offer in lieu? Was this an opportunity for a being and not doing discussion, one that talks about dignity and love and communication, about having the chance to say goodbye forever and even to confess and bless and confide? Patients and family are so often focused on the battle against the disease; they are loath to any suggestion of not doing, despite the minimal odds for a helpful treatment.
I saw Vladimir’s wife struggle to control her tears. She seemed so vulnerable and carried so much on her shoulders. I wondered if a hospice discussion, at that moment, would add to her huge burden. There was also a part of me that also debated, selfishly, if I should launch into a lengthy end-of life discussion with the angry waiting patients outside my clinic door? So often, we turn to our treatment armamentarium to avoid these deeply painful and complex discussions surrounding the end of life, particularly with patients we barely know.
I breathed deeply, calmed myself and decided to keep it simple and avoid the dilemma. I gently explained that I could not guarantee good results, but radiation therapy may improve his pain and perhaps allow him to eat and drink. It was the answer she was looking for, though I grimaced as I wondered if it was the answer I should have provided. She seemed relieved and encouraged Vladimir to sign consent. Vladimir arrived at the computed tomography (CT) simulation suite sitting bent forward on the stretcher, drooling into the bowl between his legs. The radiation therapists, already running behind schedule, looked at each other, as if wondering if this was another futile heroic effort.
“I know what you are thinking,” I said to them. “But perhaps we can help. Let me tell you something about Vladimir, he had a Dalmatian puppy he loved, who took him out of his home for a walk every day after years of deep depression.” Vladimir was contorted in pain, and the attempt to transfer him from the stretcher to the CT couch seemed impossible. All eyes turned to me with a perhaps this is too much look. Suddenly, Ilan, a young Russian-speaking radiation technologist who had recently joined the department, had an idea. “Vladimir, rest a few minutes. You know, I too have a Dalmatian, let me show you a picture.”
The deep lines on Vladimir’s face faded into a broad smile as he took Ilan’s cellphone to see the picture of the dog. From the look on his face, he seemed to be transported far from the simulation suite, and I imagined him romping with his Dalmatian puppy in a sun-swept meadow with gurgling streams and lush green grass and watched as Ilan then slid him effortlessly onto the couch of the scanner.
The scan was completed, Vladimir returned to the ward, and I retreated to my workroom to complete the contouring of the structures for the radiotherapy plan. It was a nasty 12-cm mass involving the full circumference of the upper esophagus and eroded into the trachea, almost obstructing the left lung. The dosimetrist calculated a conformal treatment plan, and as I approved it, I uttered a little prayer that this would make him more comfortable. Suddenly, Ilan rushed in, hair tousled, pale and agitated, and eyes red. We were too late. On returning to the inpatient ward, Vladimir experienced a massive aspiration and died less than half an hour after we had scanned him. Ilan was terribly upset. As a young therapist, this was perhaps his first patient who died so quickly and unexpectedly.
I tried to comfort him. “I know it hurts, but nothing we could have done would have changed what happened. Did you see his face after you mentioned his puppy and showed him the photo of yours? We did our best for him.”
After Ilan left my room, I reflected on the day’s events. Was Vladimir what the rabbis refer to as a “Gosses?”2 (Gosses is a Hebrew word meaning a moribund patient). And if that was the case, was I wrong to even transport him from his room? When death is imminent in hours or days, Jewish religious law defines a state of Gosses in which it is forbidden to touch or move a moribund patient in case this could hasten death. The guttural rattle of a dying patient, unable to clear secretions, indicating death within hours or days, reminded the rabbis of the sound of bubbling when stirring the food in the cauldron. This onomatopoeia, in addition to a didactive narrative identifying the significance of performing an action which potentially changes the natural course of events, resulted in the analogy that moving a terminally ill patient which may hasten death is like stirring the food in the cauldron which may hasten the cooking on Sabbath, hence the term Gosses. The ancient rabbinic sages from the beginning of the first millenium drew an additional analogy between touching a Gosses and touching a dripping candle at the end of its wick which may hasten quenching of the light. Another aspect of the law of Gosses forbids performing any act which may prolong suffering and delay a merciful death. Thus, moving a patient to receive a futile treatment would also be forbidden under law of Gosses.
2000 years later, the notion that we should neither delay nor accelerate death was front of mind formeas I reflected on my treatment of Vladimir. I wondered if the ancient rabbis incorporated into their moral discussion the difficulty of stopping the roller coaster of trying to do more and more to help the patient. How about when the treatment itself fell into a gray area of effectiveness? What advice would they have given a physician with competing demands on his time and a waiting room full of outpatients who demanded his attention?
In retrospect, the painful journey of Vladimir down to the simulator may have hastened his massive aspiration and would have been best avoided. In that sense, the Gosses may have
been violated. But it also allowed him and Ilan to meet and share wonderful memories of a Dalmatian puppy which made him smile and forget his pain, even for a few precious moments.
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, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Zvi Symon, until recently Chair of Radiation Oncology and currently Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School. In this episode, we will be discussing his Art of Oncology article, “Gosses and the Dalmatian Puppy.” Our guest disclosures will be linked in the transcript.
Zvi, welcome to our podcast and thank you for joining us.
Dr. Zvi Symon: Thank you, Lidia. I'm very happy to be here.
Dr. Lidia Schapira: To start, I'd like to ask authors to tell us what they're reading or perhaps what they've enjoyed reading and would like to recommend to fellow listeners.
Dr. Zvi Symon: Okay, so it's been a bit of a stressful time reading, but I may mention some books I've read in the last few months. I've been reading memoirs. One that I particularly found very touching was Paul Kalanithi's, When Breath Becomes Air. As a physician who had cancer himself and his struggle with his transition from being a consultant neurosurgeon to being a terminal lung cancer patient, I think it's an amazing and beautifully written and touching book.
Dr. Lidia Schapira: It’s a beautiful book. It's evocative and fresh. And you're absolutely right - we're completely in sympathy with and empathic with his amazing desire to live life till the last moment, right? It's just beautiful.
Dr. Zvi Symon: It’s really beautiful. And I think that memoirs is a very powerful genre for me. And another book that I enjoyed very much is Jan Morris' Conundrum, which is a story of a person who made a transition from male to female over 10 years. She was actually a member of the British team that climbed Everest and a journalist in The Times. It's a beautiful book describing what she actually felt inside and how she went through the medical process as well, of her sex change. And it's also beautiful.
Dr. Lidia Schapira: Thank you for that. I haven't read it, but I will add it to my lovely list here.
Tell me a little bit about writing and what that means for you. Are you somebody who has been writing throughout your career, or was this a story that sort of popped for you, that just needed to be told?
Dr. Zvi Symon: Right. I think it goes back to when I was a high school student where my Math teacher told my parents, "Your son shouldn't do medicine. He should study English literature." My parents were devastated by that statement because my father was a physician and my mother's family were all physicians, and they were very angry at the time. And I was kind of a writer in high school, and then I kind of left it through my medical career. And now, as I have sort of finished my stint as the chair of the department and I have a bit more time on my hands, I've sort of tried my hand at getting back to writing. I needed to read a lot in order to do that. So I was reading genres. I think maybe some of the initial versions of this piece were written sort of more as a memoir, rather than an article for the Art of Oncology. And I think you guys helped me a lot.
Dr. Lidia Schapira: I'm so glad to hear that we helped. Sometimes editors aren't particularly helpful in the views of authors, but I'm glad you feel differently.
So let's talk a little bit about the creative process and sort of bringing in all of these themes that you did here. And back to your prior comment that this is in the memoir genre. You have a very interesting philosophical discussion of what a Gosses is and sort of the ethical moral conflict when a patient is extremely vulnerable, instead of recognizing when perhaps all that you need to do, or perhaps what you need to do is to be present instead of trying to fix or intervene. And I loved how you made us all really suffer with you, as you're debating this internally. Can you talk a little bit about that part of the story?
Dr. Zvi Symon: Yes, I think just to put it into context, in my training in internal medicine, I worked in a hospital where hospice care was part of the rotation in internal medicine. I spent three months in the hospice, and at night, when we were on call, we were in charge of the ICU and the hospice. So you would be called to treat a patient in pulmonary edema and with CPAP, or intubate him or an acute MI, and then you would be called to a dying patient in the hospice. And the transition was initially very difficult for me. I actually felt my feet would not carry me to the hospice, and I didn't want to go there, and I had to kind of force myself. But after some time, I realized that it's actually much easier to treat pulmonary edema to than be able to sit and listen and talk to a dying patient. But the fulfillment that I began to feel when I overcame that kind of fear of going to speak to a dying patient, the fulfillment was far greater than getting somebody out of pulmonary edema. And that's kind of stayed with me to this very day.
So although radiation oncology is a kind of something you have to do, and you sort of radiate, when I'm called to patients like this, and I do have time, then I kind of sit down with a patient and discuss the options and try to give other options because very often it's a kind of turf in the house of God. Somebody doesn't want to have that conversation with a patient, and they're kind of turfing the patient in a house of God sense to have some radiation. And I'm not sure that radiation in such cases– So this is something that I'm confronting quite often in my daily practice, and it becomes more and more complex culturally because when one is confronted with families who also want to be very active and are dreading having to live with the idea that maybe there's something they could have done that they never did, and they're putting a lot of pressure, then it's a very tough situation. So I'm very sensitive to these situations.
I've often had end-of-life discussions with patients like that, sometimes against the wish of families that are close by. And the patient would say- well, they'd say to me, 'No, don't talk to him." And the patient said, "No, I want you to go away. Because I think this is the first time someone's listening to me, and I want to hear what he has to say." I feel very passionately about these–
Dr. Lidia Schapira: I have so many comments that we would need hours to discuss. But, of course, the first comment I wanted to make is that some of the most humane oncological specialists I know are radiation oncologists, so I don't see you guys as just treaters and physicists wearing scrubs. I see you as incredibly compassionate members of the cancer team.
And that brings to mind a lot of the current discussion about palliative radiation, this idea that we can just throw some rads at people because there's nothing to lose and maybe there'll be some improvement in function. So can you talk a little bit about that? I mean, here you are in a very busy clinic falling behind. You've got to walk through a waiting room of people who are sort of looking at you saying, “How can you be walking out when we had an appointment with you half an hour ago?” And you go and find Vladimir, who's despondent and can't have a conversation with you. And I'm pretty sure that you must have been going through this internal conflict even before you met your patient about what to do. Tell us a little bit more about the emotional impact for you.
Dr. Zvi Symon: Yeah. With great trepidation, I actually go up to the department to speak to a patient like this. I think the electronic medical record, for all the problems with that, it allows us to kind of really quickly glimpse and get a true picture of what the situation is. So I had seen the imaging and I'd seen the size of this really very nasty tumor. And I sort of remembered the literature that it's a relative contraindication and it actually may make things worse. But I was getting calls from the department and the medical oncologist who consulted that I must see this patient, and they want that patient to get treated today. So with a kind of a heavy heart, I go up the stairs. I breathe deeply on the way to calm myself and take the staircase up to the 6th floor and walk very slowly up the stairs, trying to go through my mind, what am I going to do, and kind of enter the ward. And then I am confronted by this person who is terribly suffering, very terribly. And he doesn't actually want to look at me at all. His eyes can't meet and he looks kind of, his eyes are very dull. And I see his wife watching me and watching him and turn to her. They are immigrants to the country. And there's also a cultural issue and language problems and difficult socio–
Dr. Lidia Schapira: If this were fiction, you could not have made it harder. I mean, when I remember reading the manuscript thinking, this poor immigrant, he's depressed, his son is depressed, the other son has COVID, his wife is weeping and says she's the one who's tried to make ends meet. You have all of these barriers in addition to this internal clock that you have somewhere else to be. Can't begin to imagine the pressure. So how did you get through that?
Dr. Zvi Symon: Yeah, I think my mind was kind of ticking over and I think that sometimes we make very practical choices. And I knew that if I sat for too long and I fired a warning shot and said, “Well, this may not help and this may not do it,” but I think that culturally I had the feeling that it was the wrong thing to do and that there was an expectation and the expectation had been created by the team, and it's very difficult to turn down that expectation. And I also felt that she was so frail and that she had really no support and maybe if one of her kids would have come within half an hour, I would have said, “Well, I'll come back after my clinic in the afternoon and let's have a chat with your son.” But the situation was such that I thought, “Well, you just have to be practical and you have to get back to your clinic.” It's a hard feeling that we make value decisions just because it's more comfortable for us. We want to finish our clinic and also go –
Dr. Lidia Schapira: No question about that. Yes, and I think the reader will feel for you, as I did when I read it. I mean, I could immediately sort of imagine all these things playing out. So you follow your intuition, you assess it, you say, “Okay. We'll give it a try,” right? And then you have your team to deal with and your lovely radiation therapist, the technologist who gets personally involved. And then you introduce the idea that perhaps connecting with something in Vladimir's recent past that brings him joy. Can this image of this puppy romping through the fields, is something that can maybe help you all? Like the glue, the emotional glue that keeps you together. Talk a little bit about that part, about how you tried to bring this element out in the story, to give another dimension for the reader, a view not only as the physician giving Vladimir care, but also leading your team.
Dr. Zvi Symon: So I think that an open question to a patient about their– “Just tell me a little bit about yourself,” is an invitation for a person to tell you about the things that they care most about, about the people they love most, that the things were of the most importance in their lives. And I think that kind of human connection, if we can kind of latch onto that and harness that to improve the way we communicate with the patient and the way we get the rest of the team to communicate with the patient, I think that can be very powerful. I mean, I myself love dogs, and I was like, really, my Border Collie just died a few months ago, and we buried her after 12 years, and she was a wonderful animal and part of the family. And in the two minutes that I had to listen to- that's what she told me about, she told me about the dog. And when I tried to motivate the team to add him as an urgent sim and he wasn't cooperating, then it just occurred to me to tell them about it.
Dr. Lidia Schapira: It worked. It was amazing.
Dr. Zvi Symon: And it worked. Yeah.
Dr. Lidia Schapira: It was a beautiful story. I too, am a lover of dogs. I have a wonderful puppy now, and he brings tremendous joy. But your message is so full of compassion and humanity. It's basically back to Dame Cicely Saunders' idea that you want to know who the person is that you're treating and you want to know what matters to them. And so here you caught this moment of connection with the family and with the patient and with your young radiation therapist who needed to feel that he was actually helping this person. So it's a beautiful story. I want to just give you a chance to finish the interview by telling us something perhaps that you want the readers or the listeners to take away from your piece.
Dr. Zvi Symon: Well, I think that the situation of, I think as physicians, we don't really ever know when the patient precisely is going to die. And the whole idea, I think, of a Gosses and my thoughts about the Gosses were, because it's sort of defined within Jewish religious law, someone that is going to die within 72 hours. Now, it's very difficult to define. We don't know that. We never do know that. But I think that that sensitivity to the comfort of a suffering patient and offering a treatment that may be futile or that is highly likely to be futile and that may be involved in an enormous amount of discomfort, I think that we have to be able to sit down with these patients and with their families and discuss other options as just very good sedation and not necessarily, I think, doing, but rather just being there, as you mentioned, for the patient.
Dr. Lidia Schapira: It's a beautiful thought, and I think we all agree with you. And I think what made this story so poignant is that here you are, that time is compressed and you're introduced to the family as somebody who potentially could help fix something or provide something. So it's very difficult to step back, as you say, and do the deep work of sitting and talking and counseling and accompanying. But I think your humanity comes through and your desire to help comes through beautifully in the story. And I really thank you for bringing this concept to our attention. I think that it may be an old idea, but one that is still very relevant. And thank you for sending your work to JCO.
Dr. Zvi Symon: Thank you very much.
Dr. Lidia Schapira: 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.
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
Like, share and subscribe so you never miss an episode and leave a rating or review.
Guest Bio:
Dr. Zvi Symon is a Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School.
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Listen to ASCO’s Journal of Clinical Oncology essay, “The Gift of Truth” by Dr. Ilana Hellmann, an Attending Physician in the Hematology Department at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann shares how it is an immense privilege and grave responsibility for physicians to give bad news to patients who have a terminal disease.
TRANSCRIPT
It was a hot and humid Tuesday in July, and I distinctly remember being grateful for the air conditioning in the pastel-shaded waiting room of the oncology outpatient clinic. My father sat silently beside me. We knew this room well, as we did the doctor we had arrived to see. He had been my late mother’s oncologist until she had passed away just over a year previously from metastatic breast cancer. Dad remembered him being kind yet direct and had requested that he be his oncologist now that he needed one.
I watched his hands fidget with the slip of paper bearing the number that would be called over the loud speaker. My father was 84 and a retired university professor of statistics. He spoke seven languages and his friends called him the encyclopedia as he was an endless fountain of knowledge in history, politics, literature, art, etc.…. His number was called, directing us to a room we had been in many times before. After greetings and some small talk about my late mother, Dr Cohen addressed my dad and slowly went through the history.
He had had surgery for a squamous cell carcinoma on his scalp along with skin graft 6 months earlier. Two or 3 months later, he complained of pain in his right hip which seemed to worsen by the day. After some imaging and assessment by an orthopedic surgeon, a diagnosis of osteoarthritis was declared, and the treatment recommended was a total hip replacement.
The surgery was performed and my dad, who had been suffering from extreme pain, felt immediate relief. He was delighted with the results of the procedure, delight that dissipated in an instant when the pathology report came back: metastatic squamous cell carcinoma.
He had been quickly referred for a course of radiation which had been completed. This meeting was intended to discuss further treatment. Dr Cohen gently explained that my father’s cancer was not curable and that there was no good treatment available for him at that time.
I do not really remember much of what was said after that. I found myself thanking him for his time and helping my father to the car. The drive home was awful, with awkward silence broken only by a discussion about what he was going to have for lunch. We both pointedly avoided talking about the meaning behind Dr Cohen’s explanations. I was stunned. I felt like my father had been fired by his doctor and that I had been left to deal with the consequences. I felt alone, abandoned, and betrayed.
The next few days passed quickly as I juggled my busy hospital schedule with family dinners, school runs, and the sporting activities of my three boys—the oldest of whom was 11 years old at the time. The weekend came, and on Saturday morning, my husband and I planned to meet friends at the local swimming pool as we so often did in the hot summer months. Leaving him to clean up honey and pancakes, I went across to the apartment opposite ours to say good morning to my father and tell him we would be gone for the better part of the day.
He was sitting up in bed and said: “Before you go, please bring me my phone book.” He still used an alphabetized phone book, mostly in my late mother’s hand writing. I found the book and held it out to him. “Find David Green’s number” he said, which I did. “Dial it please” he said while looking for his glasses on the bedside table. I dialed and handed him the phone. I then listened as he greeted David—an old colleague from his years in academia. Dad had not spoken to David in many years. He explained that he had cancer, and that he did not have much time, but that he wanted David to know how much he had enjoyed working with him and to thank him particularly for his contribution to an article they had published together.
I got up to go and, seeming not to notice, he asked me to dial the number of another friend. Realizing this was going to take some time, I called my husband and told him to take our boys to the swimming pool without me. I sat down next to Dad on his bed and dialed number after number. My parents had lived in a few countries, and my father’s academic career had connected him with people all over the world. Over the course of almost 6 hours, he spoke to friends, relatives, old neighbors, and many work colleagues. He had a personal message for every one of them and started each conversation with a clear and brief explanation of the circumstances of his call.
There were some people who were not home for his call, and he left long messages on answering machines. Those 6 hours were cathartic for the both of us. It was sad but also terribly beautiful and filled with my dad’s signature black humor. Once we had contacted everyone in the phonebook, he continued his mission and gave me a list of people he wanted to be present at his funeral, as well as a second list of those he would prefer not to be there. Then, he handed me an envelope which contained a substantial sum of money. “This” he explained “is for the gentlemen who come to take my body.” My mother had died at home, and he remembered the two ambulance men who had come to take her body to the morgue after she had passed. He had been struck by the difficulty of such thankless work and wanted to make sure they were appropriately compensated.
Very soon after that Saturday, my father had a seizure and was diagnosed with brain metastases. As dad had made it very clear that he wanted palliative care and no admissions to the hospital, Dr Cohen connected us with the services of home hospice care. He deteriorated rapidly and died at home, as he had wished, 3 months later. The money in the envelope was duly delivered to its intended recipients, and there are some people who were not at his funeral.
I have often gone back to the conversation in the oncologist’s office on that July morning. Oncologists conduct end-of-life discussions with their patients every day. How does one tell the patient the truth without taking away every ounce of hope? Does every patient have to know that he is dying? I had never thought about the immediate consequences of what I say to my patients and their loved ones until I had to get my dad to the car and spend those eternal 20 minutes with him on the drive home.
Bad news is difficult for those on the receiving end but no less so for those given the task of delivering it, especially when it concerns a terminal illness. There are some physicians who avoid telling their patients that their disease is terminal altogether. In not telling patients of the terminal nature of their cancer, are we protecting them or ourselves? And are we preventing them from being able to use the time they have left in a way they would wish with the knowledge that time is limited?
There are those patients who cannot or will not talk about death. Knowing how much to say to each of our patients, and choosing the appropriate words, is an art. The task entrusted to physicians of giving bad news is both an immense privilege and a grave responsibility.
My father received a brutal gift that day. But brutal as it was, it was a gift that enabled him to part, to make peace, and to prepare for his coming death. I have since had countless conversations with my own patients about their imminent demise. I constantly remember my father and that special Saturday. My memories are of tears, and of laughter, and most of all, of a sense of closure for the both of us. I hope that I am able to give my patients their truth in a way that will make it as much a gift for them, as it was for him.
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, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Ilana Hellmann, who is an Attending Physician in the Hematology Department at Meir Medical Center in Israel. In this episode, we will be discussing her Art of Oncology article, “The Gift of Truth.”
At the time of recording, our guest has no disclosures.
Ilana, welcome to our podcast, and thank you for joining us.
Dr. Ilana Hellmann: Thank you for inviting me. It's wonderful to be here.
Dr. Lidia Schapira: You've been on our show before, so let me just start by diving right into your beautiful article. It honors the memory of your father, a Professor of Statistics, who had an encyclopedic knowledge of the world and spoke seven languages and was known by so many different people. And you start by bringing us to the moment in the waiting room of the oncology department that was familiar to both of you because your mother had been a patient and you had very carefully selected the oncologist for your father. You say it was a July humid day, and his number is called. And then what happened?
Dr. Ilana Hellmann: Well, as I wrote, all the moments that you've just repeated from the article are things that are imprinted in my mind as if it happened yesterday. My father passed away in 2014, and there are those moments and many others that I remember very, very clearly. It's something I hear from my patients also all the time. They remember exactly the day they received the diagnosis, the time of day, they tell me what I was wearing when I told them whatever it was I told them. And it's something that struck me that when I went back to that day and many other things that happened afterwards, I remembered every second. I think I knew what the oncologist was going to say in retrospect, but at the time, maybe I didn't think about it.
It's very interesting that we as physicians, especially oncologists, we know exactly, but when it comes to family members, we're a little blind. And I've had this experience a few times since my mother passed away from cancer. My father and my father in law passed away just over a year ago, also from metastatic pancreatic cancer. So we know it very well.
Dr. Lidia Schapira: Sorry.
Dr. Ilana Hellmann: As I wrote in the article, I remember going in with my father. I remember the conversation, or at least the beginning part of it, but once the message hit home that, “This is what we have, the bottom line is there's not a lot we can do. We certainly can't cure your disease.” I don't remember anything else that happened after that.
Dr. Lidia Schapira: And you described the ride home after that. You mentioned that you felt your father had been fired, had been fired from anything that was perhaps curative or offered sort of some optimism, perhaps the conversation was a little deeper and supportive and offered some palliation. But what you took away was that this was awful. He was fired. Then you say the ride home was really difficult.
Tell us a little bit about that. What was it like to leave the oncologist office as the sort of informed knowledgeable daughter who had just received this message?
Dr. Ilana Hellmann: Exactly that. And I kept thinking in my mind, “How much do I say, what is he thinking? How much does he understand?” I was almost jealous, a little of people who have no medical knowledge. So much easier. Maybe it's not, but I think it's really tough for physicians as family members of patients who are unwell. But my father was, as I described, an exceptionally intelligent person, a real intellectual. He was enormous, not physically, but there was nothing he didn't know. You could ask him anything. He read the dictionary for fun. These are things that he liked to compare languages and cancer made him very small. And it was awful. It was just awful, awful to see. And that moment, it was very emphasized how small he was. He was just silent. There was just nothing, and I didn't know what to say. I felt absolutely helpless. And as I described, that drive is 20 minutes, maybe even a little less. It was endless.
And I remember that I went home with him. It was lunchtime, and I dropped him at home and I went back to work. I think I had taken the day off, to- I didn't know what was going to happen with the oncologist, and I went back to work because it was easier to go back to work than to stay at home. And he was silent. He said nothing. And the next time I understood what he was going through was on that Saturday with everything that happened.
Dr. Lidia Schapira: So fast forward to that Saturday, I imagine that you were busy with your children and your work, and it was easy to– I’m going to use the old fashioned word compartmentalize, put this aside for a little bit. And then on Saturday you’re going in to say, “Hey, I’m going to take the children to the pool. How are you?” And he had a completely different idea of how you were going to find yourself spending the day. And I think that’s such a powerful scene in the essay when you say that he started one by one asking you to dial his contacts, his friends, his colleagues and give a message. Tell us a little bit about how that felt and bring us to the bedside or to the scene if you can.
Dr. Ilana Hellmann: So there's dad. He's in bed. He's got his morning cup of coffee. He lived with a full-time carer at that stage, who brought him some breakfast and a cup of coffee. At some stage, she brought me a cup of coffee. He was very, very focused. It was like I was an assistant, just doing what he needed so that he could talk to all the people he wanted to talk to. It was crazy. It was like watching something surreal. There were people he hadn't spoken to in 20 years that he called. He had no concept of what time it was in various parts of the world, so he woke people in the middle of the night. It was really quite something. People didn't believe me afterwards when I told them the story, and as I say, some of the conversations were very, very humorous. My father had a wicked sense of humor; very black sense of humor. So, there was lots of laughter mixed in with, “I'm dying, and I have cancer.” Lots of humor, and there were a lot of tears, mostly on my part because my father was not a tearful type. He was emotional, but he didn't cry. But I remember being very tearful. I didn't know all the people. Some of the people were people I'd heard of when I was a child, all sorts of neighbors, people we'd lived next door to years before when I grew up in South Africa.
And when he'd finished, he had this sense of- he was satisfied, “I've done what I had to do.” And then he moved on. He had his list of things he had to do, the money he wanted to give to the ambulance workers, the people he wanted at his funeral, he didn't want to go to his funeral. It was typical of my father to do something like that. He planned everything. And it was like he'd had a box that he had to seal and tie a ribbon and it was done. And then he was finished and he was ready and he let go. It was amazing. It was beautiful.
Dr. Lidia Schapira: When I read your essay, I felt that that was the gift he gave you. You have the word ‘gift’ in the title. But it's such an amazing scene for a father to be able to do, sort of a review of his life while he's still living. Instead of leaving you a box with all of his memories, he basically showed you and gave you this loving and exhaustive, comprehensive demonstration of what his life had been about.
Dr. Ilana Hellmann: Absolutely.
Dr. Lidia Schapira: And in some ways, some of the dimensions that he touched were the professional dimensions that perhaps as a child or a young adult he would not have been able to access. But you saw how big he was. What an amazing thing. Did you and he ever talk about that? What it was that led him to do that? Or was that just something that happened and you sort of both understood and just walked on?
Dr. Ilana Hellmann: It was beautiful and it's certainly a gift I've been left with. There was the gift he got and the gift I got. It was a little intense. Six hours of calls was exhausting. I remember when my husband came home and I told him, he immediately poured me a glass of wine. It was very, very difficult and it took me a long time to go through. I had no time to recover from one conversation to the next conversation. And he just kept going. He had very little breaks during the day. There were a lot of people he had to talk to, and he wanted to finish it today. He thought he was dying next week. That's not what happened. He never spoke about it again. And that was quite typical of him. He was like, “What's done is done. I've said what I had to say.” There were a lot of things that he said that I heard from the conversations that he had. And as you say, there were various gifts during the day that were told to other people but intended for me and for my younger brother who was not there at the time because he lived in England. But we never discussed it again. That was the way my father was.
Dr. Lidia Schapira: You know when we, as physicians, tell patients who are sort of nearing the end of their life to say what they need to say to be prepared, this is exactly why, right? Because very soon after that, he had a seizure. He had brain metastasis. He might not have had the stamina or the ability to do what he did. So that is a very important lesson. I was incredibly moved by that scene, and I've probably read it a dozen times. You've probably thought about it a million times, but certainly this reader took a lot from that very beautifully described scene and so nicely told.
So for the last few minutes, tell us a little bit about how this personal experience has impacted your delivery of news and your relationship with the patients. You start by telling us that often, as oncologists, we give bad news but then we just move on. But people live with this, people go home like this. How has that experience as a daughter impacted your delivery of news?
Dr. Ilana Hellmann: Absolutely. There are a few parts of how it's influenced me. Somebody who read the article when I was writing it had said to me, "Wow, do all physicians have to go through these things to be able to identify with their patients or their family members?" Well, I hope not. It's a terrible thing to think of that each of us– On the other hand, there's no question that when you've been through something, you identify with the person in front of you if you know what they're talking about, you know what it's like to be a mother, you know what it's like to be a daughter. You know or you don't know what it's like to lose a parent or somebody else and the experiences that I had and I imagine anybody else have had with interactions with the medical community, with doctors, with the emergency room, with all sorts of things are things that influence the way I approach patients.
So one of the things is true. I'm guilty of the fact that it didn't occur to me that I sit in my room, I see a patient and his daughter, his wife, his whatever, and I give them this news, and then I leave the wife to deal with him outside. Or the fact that when the oncologist said, “We haven't got curative treatment for you,” and I didn't hear anything else after that. Well, we know that when we tell patients something not good, there's often no point in carrying on the conversation and talking about treatment and side effects and whatever because they're not there anymore. And that's something that I remember very clearly from that.
You can't go with the patient, you can't go home with them, you can't get in the car with them, but you can remember it, think about it, choose your words carefully, maybe have a word with the spouse or the family member, whoever it is, as they're leaving outside the door, “If you need anything, call me.” Maybe call them. Sometimes, I've seen that it's difficult, and I've called them the next day. That definitely has influenced me. I'm not sure there's a lot you can do about it, but I think about it. In terms of telling patients that time is limited, that you're not going to live forever, it's hard, and we want to give patients good news. It's so much easier to tell a patient that their PET CT is clear than that it's all come back and the prognosis is not good.
So I try to understand where the patient is and how much they want to go. Most patients will lead the conversation. Most patients know to tell you how far they want you to go. And I've never been sorry about telling the patient that their prognosis is bad and that their disease is terminal. And I've had lots of return conversations from families after patients have passed on about the conversations they had, about the things that they did, about the fact that the patient decided maybe not to have more intensive treatment, went on a holiday, decided not to come to the emergency room with a fever or whatever it was, and elected to stay at home with hospice.
I found that that side of oncology is no less rewarding when you have to accompany a patient on their lost journey. I've found over the years that it's actually no less rewarding than the patients who are cured. And then you see them once a year and they come and they say everything's good.
Dr. Lidia Schapira: And that perhaps is part of what we call the art of oncology, which is the being in relationship, connecting with somebody, being a rock or a source of guidance for them when they're going through incredibly vulnerable times. I think that's not something that perhaps others recognize as being rewarding, but for those of us who are drawn to it, it can be incredibly rewarding.
Thank you, Ilana. This is a beautiful conversation and such a lovely essay. I imagine there's a reason for this taking about ten years to process and write, because the impact is so deep, but you managed to do that. For that, all of the readers of JCO are grateful to you. So I thank you very much.
Dr. Ilana Hellmann: Thank you. Thank you for taking it and publishing it.
Dr. Lidia Schapira: 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 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
Like, share and subscribe so you never miss an episode and leave a rating or review.
Guest Bio:
Dr. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center in Israel.
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Listen to ASCO’s Journal of Clinical Oncology essay, “Do You See Me?,” by Dr. Kristen McCullough, a Hematology Clinical Pharmacy Specialist at Mayo Clinic. The essay is followed by an interview with McCullough and host Dr. Lidia Schapira. McCullough shares a pharmacist's perspective on experiencing a patient loss.
TRANSCRIPT
“Ope!” is the common Minnesotan exclamation when you bump into someone you did not see. As a pharmacist working in ambulatory care, I am more apt to hear it than most. I am a convenient presence in clinic life, available when needed, but I was trained to be as unobtrusive as the beige and bespeckled wallpaper that shrouds the hallway. After a decade, many still struggle to get my name correct. I hear a muttered thanks occasionally, but I know minds are fixated on the next patient, research question, grant deadline, or difficult conversation.
I try to be accessible when you need me, from the minutiae of learning to order ondansetron as a new fellow to managing catastrophic relapses with multiorgan failure as a seasoned physician giving salvage chemotherapy. On nights, weekends, holidays, or when we are separated by a dozen time zones, I am here. We have navigated the uncomfortable waters of chemotherapy in hemodialysis, written clinical trials, obtained medication on compassionate use, and fought with insurance companies. I bear the brunt of your frustration when the electronic medical record feels cumbersome and ordering chemotherapy is just not like it used to be. Do you remember asking me to “just fix the system” in sheer exasperation but high-fiving me a few weeks later when you entered a chemotherapy plan without my assistance or corrections? I know that needing my help feels inefficient, impractical, and almost like a failure. You wish it was an easier, simpler, and more self-reliant system.
But there are many times when you do not need me. When things go well and the bone marrow shows a complete response, the BCR::ABL1 is undetectable, or the positron emission tomography scan is clear. I am absent in those often fleetingly beautiful moments when you say “The cancer is in remission!” and you joyfully dismiss your patient. Did you forget that I had planned a visit? It is the desk staff who graciously tell me that my visit was presumably canceled. The patient has already left for the day. I am overjoyed for them, but it is bittersweet to be forgotten.
Do you remember that gray and rainy afternoon in late October? I was in my office after your visit was done that difficult day. You left the examination room after an emotional and raw conversation about resuming therapy and asked for my help. You imparted the bad news and plan, but it was my job to carry out your instructions. I held their hand, sat with them through mutual tears, and paused many times for collective digestion of the information. I explained the differences between their last round of treatment and the new plan. I talked about topics that are difficult and uncomfortable: financial consequences, physical appearance changes, every side effect from hair loss to sepsis, and the need to stay in town and miss thanksgiving at home. It was well after 6 o’clock when I escorted them to admissions and we parted ways. The lights in our department were dim, and everyone was gone. You needed me. They needed me.
Together, as a pharmacist and a physician, we spent weeks managing side effects for our patient, from nausea and vomiting to blood stream infections and transfusion dependence. I fought with insurance for drug approval, spent many weary hours in front of a fax machine obtaining charitable grants to cover copays, and plead with companies for patient assistance and free medication. We hopped from regimen to regimen, enrolled on clinical trials, and entertained the thought of compassionate use when precision medicine testing yielded a potential target. Weeks turned into months, and months turned into exhaustion. Despite all the awful things happening, our patient snuck treats into appointments and sent portal messages of their bucket list adventures, even if they became increasingly more home centric. Bad days started to outweigh the good as time marched forward.
I was the first person to murmur the words comfort care as a potential next step just before we walked into the next visit. As a physician, you were angry at me for putting these words
out into the universe and called me naïve. I do not think you intended to be hurtful, but I am reminded of my place. It was just shy of 3 weeks later before you and the patient made that mutual decision when chemotherapy was no longer an option, and visits with me ceased. My services were no longer viewed as necessary. I did not get to see our patient again, except for a couple of In Basket messages.
I first read about their passing through an electronic medical record alert that I am entering a deceased patient’s chart while data collecting for a project. Their photo is now gray, and their demographics are a stark red. The chart feels hauntingly cold. The obituary was filled with healthy pictures and beautiful memories. Did you read it too? I missed the memorial service because no one told me.
I closed the obituary and took the back roads home from work. It was a beautiful June day, and the sunshine felt warm and welcoming through my open windows. I wanted our patient to feel remembered, even if my remembrance was not particularly meaningful. Over the next few weeks, I embraced all the things we talked about in our visits. I listened to Earth, Wind, & Fire, their favorite band. I went to the driving range and exploded with laughter at my atrocious hooks and slices. I visited the local ice cream shop and indulged in mint chocolate chip ice cream that melted down my hand from a gigantic waffle cone. I sat on the dock and watched the sunset from the best vacation spot in the Midwest: a Minnesota lake.
A year later, I smile when my playlist cycles through their favorite song, but the weariness of this rhythm grows heavier. As a physician, I hope you will see this side of my practice and the human being in this story, someone who meets patients where they are and agonizes alongside you at the loss of human life; someone who is crushed by the same weight of bureaucracy, red tape, archaic rules, and biases; someone who fights against the archetype that a pharmacist should be seen and not heard; and someone who will relentlessly remind you that pharmacists are brighter than an insurance claim or copay frustration. I hope someday you see the person connected to the In Basket, e-mail, pager, or phone as a team member and not a referee. I hope one day you simply see me, utterly human and some days utterly broken.
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, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University.
Today we're joined by Dr. Kristen McCullough, a Hematology Clinical Pharmacy Specialist at Mayo Clinic in Rochester, Minnesota. In this episode, we will be discussing her Art of Oncology article, “Do You See Me?”
At the time of this recording, our guest has no disclosures.
Kristen, welcome to our podcast and thank you for joining us.
Dr. Kristen McCullough: Thank you for having me.
Dr. Lidia Schapira: It is our pleasure. I like to start these conversations by asking authors to tell us a little bit about their reading preferences. Do you have a book you'd like to recommend or something you're currently reading that's captivating your attention?
Dr. Kristen McCullough: I just started a book called The Measure, which I think so far is excellent. It's about everybody in the world that is an adult receiving a box, and in the box is a string purported to be a measure of the length of your life and whether people choose to open the box or not open the box and what you do with that information. I think that is so closely tied to what we try to do in our day-to-day jobs, which is kind of this foretelling, future telling, and whether or not people want that information or don't want that information and what you do with it. So far, excellent, incredible read. Looking forward to kind of seeing how it unfolds. So that's what I’m reading if you can call that fun, a fun standpoint.
Dr. Lidia Schapira: Oh, I hope it is fun.
Dr. Kristen McCullough: A fun standpoint. I did just finish a Masters in Pharmacy, Business and Administration so I did a big chunk of reading that was more business-y and that was more focused on leadership and culture and that kind of thing.
Dr. Lidia Schapira: How fascinating. Well, the book sounds very interesting. So it's an interesting segue to your essay. What made you write and then submit your work to be read by Oncologists? In other words, the sentiment is very clear and we'll talk about the message. But what was the process that you used that led you to want to share this work through Art of Oncology?
Dr. Kristen McCullough: I've written for a very long time, much of it personal. Obviously, this job is very personal. It's hard not to be. And so I write for myself as a form of processing and I wrote this particular piece a while back simply as a means to help myself understand where my frustrations and sort of my difficulties with this job come from. And not that it's bad difficult, but it's just ongoing how do you get through some of the things that everybody deals with?
The more that I read through it, it was a piece that I went back to time and again because the feelings continued to surface in a variety of different ways. I thought, am I the only person that feels this way? I discussed the sentiments, but not the article in specific with a couple of colleagues in pharmacy and they said, “Gosh, I feel this sentiment, who are we in the care team and where do we fall and what’s our place?” And I felt like it was an important time to share that as our field grows, as our capacity on a care team grows, to make sure that people understand who we are and what we can provide and that we are important to patients in a variety of capacities.
Dr. Lidia Schapira: Well, you sure are. You're indispensable. So thinking about this, I totally appreciate the sentiment that pharmacists are very important members of the multidisciplinary and interdisciplinary cancer team. But what you, I think, showcase in this article is that sometimes as individuals, they may remain invisible or not as visible as they ought to be. So what I heard in this article, and please feel free to correct me, but this is my interpretation as a reader is this is sort of a letter of sorts to the oncologist, the trainee, the attending physician, the clinical investigator who partner with you in clinical care. And what you're saying is look at the emotional labor of our work and we are often not recognized and not brought into the team in the way that we ought to be. Did I get that right?
Dr. Kristen McCullough: Yes. I think we are being brought into the fold more and I want to do service to the people that I work with. I mean, that change has happened very gradually. I've been with a very dedicated group in the past 10 years and that is improving and growing. You certainly have to demonstrate your capacity to provide services and be available. But sometimes the greater sentiment when we try to remember who a care team is, we're very good at saying that our care team is physicians and advanced practice providers and nurses. And it just doesn't seem to sift down to saying and pharmacists. And I don't think- it's never a conscious exclusion. It just doesn't seem to quite get there. And sometimes that can be hurtful when it's heard again and again and again.
And I want people to remember that we make these tremendous connections with patients repeatedly. They are emotionally connected to us just as much as we are to them. And so when I lose patients, I feel that too, and I want to share that with my providers. I want to say, “Gosh, do you remember these incredible experiences we had and how funny this was? And do you remember their kids and their grandkids and the things that they brought to the table?” Because I was just as impacted by those experiences as I think that they were.
Dr. Lidia Schapira: You also talk about the specific expertise that you bring. What struck me, for instance, was saying,”We gave chemo through hemodialysis together, the advocacy part. We're the ones left looking for the authorization or helping people with payment.” And then you talk about the human connection of, “We are the ones who are left explaining what the treatment actually will look like, what the side effects may be of that particular treatment.” All of which is incredibly important for the practice of oncology both in a community or an academic setting.
And then you actually take us on. A bit more of a personal journey of what it felt like for you to learn that a patient had passed and how you found a way to honor that connection that you had and remember this patient. Can you tell us a little bit more about what that was like for you, this journey that you took with this particular patient, listening to the music they liked and eating an ice cream for them while you're watching the sunset on the lake?
Dr. Kristen McCullough: Most importantly is I can read everything that happens to a patient in a hospital. I mean, we know every time they eat and sleep and sneeze. And so the more important part to me is if I'm going to send you home, particularly because our therapies are now far more outpatient based, is what are you doing at home that's good? And what are you not doing? What are you not participating in that you wish you could participate in? Because that's more telling to me of what my therapy is causing that's preventing you from participating or that you aren't doing because we told you that you couldn't. If my therapy causes some sensitivity and you hear that and you think, I can't go outside and how do I fix that? Because I want to make sure you go to grandkids’ baseball games and how do we accommodate those things?
And so I try to listen for that, and what I get out of that is the human side of my patient, what pieces are important to them. And that's where you hear those things. What's your favorite music? What concerts are you going to go to? What are you looking forward to? If you could eat anything, what would you want to eat? What would make you feel better? How do I make that happen? If you could feel well enough to do anything, what's the most important thing for you to do? And I think that's what I remember most about patients is they wish they could get back on their motorcycle. They wish they could go fishing off the dock, they can't taste their favorite ice cream anymore, those kinds of things.
And so that's what I remember. And I don't have a great way to memorialize patients. I can't go to funerals across the country. I mean, I can write cards and call families if it's appropriate, but I need a sense of closure in some of these instances. And so the best way for me to do that is to try and remember them through an activity that I think would make them chuckle, make them laugh, be like, “Oh, I knew she'd never get on a motorcycle. I knew she would never listen to that song from the 70s”, something like that. And so that's what I did for this particular patient, was think about the things that they did. And we laughed about try and process through that particular sentiment because it was just the only way I really knew how to when I wasn't part of the process for the rest of the team. When the death note comes through, and the nurse knows and the event practice providers know and the providers knows and the providers call the patient’s family and they send a card and I just didn’t know. So I had to kind of process in my own way and laugh.
I mean I’m a terrible golfer, horrible. I went with my husband and I can’t hit a golf ball to save my life, and hooks and slices, and it was terrible and I laughed. It was good to laugh. It was good to imagine my patient thinking, “Oh, my goodness. She’s just atrocious.”
Dr. Lidia Schapira: So I think this is the first time in the 20 plus years of Art of Oncology that we've presented a pharmacist, a clinical pharmacist point of view, and I'm so appreciative of that. We've been getting more and more stories from other members of the team who also felt somehow they weren't sufficiently recognized. And I wonder if you could tell our listeners a little bit about how you imagine that the care should be implemented to perhaps include clinical pharmacists in some of these activities that you say are sort of routinized by care teams but may actually leave important members out.
Dr. Kristen McCullough: I think the hardest part for me is when patients are making a transition to comfort care or to hospice. Include your pharmacist as part of that because we either have connections in hospice care - I've got colleagues in hospice care - or at least let me help the patient make that move as well. Can I help pull off medications that they don't necessarily need to be on so they're not at home on statins and all sorts of other medications that they don't need? Can we help have that conversation to make it easier? Even if I'm not part of that, then at least let me know that the patient has made a transition because I think other care team members are aware. And if there's support that I can provide in that, I'm really happy to do that. And then if the patient passes away, it would be nice to know and be part of that information piece as well if that's possible.
Dr. Lidia Schapira: You bring up some very valuable points that I think could benefit care and could certainly strengthen the team approach to patient care that is sort of increasingly being adopted in cancer care. One is that you have knowledge that could help patients across these transitions of care, and two is that your input doesn't end when active disease modifying therapies stop. You still have a lot to bring. And then it's the personal part of really feeling that you're integrated into the care team. And I think perhaps wearing your new MBA leader, you can introduce some changes in your system and then kind of lead the rest of the country in thinking about how to restructure the role of the pharmacist and the care team.
Dr. Kristen McCullough: We can dream big, right?
Dr. Lidia Schapira: That's what this is about.
Dr. Kristen McCullough: Gosh, that would be ideal. And there was a really nice article in the Journal of Oncology Pharmacy Practice that talked about the state of pharmacy care across the country in oncology pharmacy. And I think we have pharmacists in a lot of incredible places, whether it's clinics, infusion centers, specialty care, inpatient, but we're short and we've got a long way to go. So any advocacy that we have from cancer centers and providers to help us and to recognize the value add, it will be incredibly beneficial because we can't advocate alone. We need support.
Dr. Lidia Schapira: I know that there are lots of people who are reimagining cancer care and thinking about how technologies are going to also help us in the future. So I hope some of them are listening to this. I have one final question about this, and that is that from everything you're saying, pharmacists have a real connection with patients and provide advice and so on. What kind of communication skills training do pharmacists receive these days?
Dr. Kristen McCullough: So you're asking somebody who went to pharmacy school a very long time ago.
Dr. Lidia Schapira: You look very young to me.
Dr. Kristen McCullough: It's been a hot minute. They do have rotations, specifically a year of rotations after they've completed their didactics, where they have to orient in a variety of care settings, so whether that's inpatient or outpatient, retail, hospital, etc., where they're introduced to the patient experience. Where they have to learn to interview patients and complete medication reconciliation, and learn to ask good questions and elicit good information. But I think a majority of pharmacists that most people and I don't want to be all encompassing here, but that most clinicians are seeing in outpatient settings and even in hospitals are working with have gone through a residency program. And residency programs are optional. They're a couple of years after you finish pharmacy school. That is where you kind of get a lot of really core experiences in specialty care that give you that experience working directly with patients. It gives you research experience, a lot of more academic if that's what the pharmacist is interested in.
But truthfully, and I will be honest here, we don't get a lot of good experience in how to manage death and dying. That comes from working with clinicians. And some of the very best learning experiences I have ever had have come with the clinicians I've worked with. The things that they've taught me in terms of conversations and listening have come from the people that I work with and I will treasure those experiences for a lifetime.
So, include pharmacists. Help us learn to be part of those so that we can help you have those conversations because patients talk to us about those things long after you've left the room and we need help learning how to do that and we learn best from you.
Dr. Lidia Schapira: Thank you so much, Kristen. I think this has been a lovely conversation, certainly inspiring. And again, I think that there are so many opportunities to take your message forward. So thank you very much for the work that you do, for your thoughtfulness and for this lovely reminder or perhaps lesson for clinical oncologists.
Is there anything else that you'd like to tell our listeners today?
Dr. Kristen McCullough: I'm grateful for the opportunity to have this conversation and like I said, for the people that I've learned from over the years, it's been a tremendous experience and I'm looking forward to the continued endeavors to grow in this particular area.
Dr. Lidia Schapira: And we will be watching.
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.
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.
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Show Notes
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Guest Bio:
Dr. Kristen McCullough is a Hematology Clinical Pharmacy Specialist at Mayo Clinic in Rochester, Minnesota.
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Listen to ASCO’s Journal of Clinical Oncology essay, “Buenos Días: A Letter to My Patient’s Mother,” by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. The essay is followed by an interview with Ruiz and host Dr. Lidia Schapira. Ruiz shares a poignant story of a pediatric oncology immigrant family, social determinants of health and similarities to her own family’s experience.
TRANSCRIPT
Dear Gabriela,
“Buenos dias,” we said to each other in the pediatric intensive care unit. It was July of my first year of fellowship, and I was meeting you for the first time. From the start, you were there as a family unit, you and your husband supporting your two sons and each other. You were not new to the health care system or to pediatric oncology. But this was the first time you encountered a Latina, Spanish-speaking oncologist. When you heard me speak Spanish, I saw the relief in your eyes, a relief that I had seen before with my previous Spanish-speaking families. An immediate rapport was struck, fortified by our common language, cultivating an environment of trust. It stirred memories of the numerous instances when I accompanied my chronically ill grandfather to his medical appointments, often assuming the role of a medical interpreter for his care team and yearning for such a connection.
I learned that your son had recently completed therapy for his first cancer, and because he (and your family) has a genetic predisposition to cancer, he required surveillance scans. That summer, his whole-body magnetic resonance imaging picked up an asymptomatic brain tumor.
So, our lives became intertwined and I became your son’s pediatric oncology fellow. I would never imagine the events that would follow in the next 4 years.
I couldn’t help but notice the similarities between our families. My family also immigrated from Mexico to the United States in search of better economic opportunities. They too primarily spoke Spanish and worked manual labor jobs earning minimum wage. They too had a genetic predisposition to a chronic disease (although not cancer), and because of this, they too saw multiple family members die at a young age.
You told me about your brother who died in his 20s from cancer and how your father had a similar fate in his early 50s. Back then you didn’t know that your family had a cancer predisposition.
Perhaps the local hospital in Mexico where your family was treated didn’t have the genetic tests, or maybe your family could not afford such tests. I never asked you. My maternal great grandfather also didn’t know why he had end-stage renal disease at a young age in rural Mexico. Even if the local hospital did have the tests, my family could not afford them. Just like your family, it was here in the United States that my family uncovered our own genetic predisposition, but, in our case, it was to kidney disease. Sadly, knowing the root cause did not prevent early deaths.
You told me about the events that led to your son’s first cancer diagnosis. He was having leg pain and was about to turn 2 years old. You went to his pediatrician for a sick visit and routine vaccines. His leg pain worsened after the vaccines. Scans were ordered and unfortunately showed a tumor. You shared how in your mind the vaccines and the cancer were linked and how you worried about future vaccines. I listened to your worries and explained that vaccines did not cause his cancer. This reminded me of conversations I had with my own mother and aunts who would ask me medical questions: was it normal for a healthy young adult to have hypertension?
What are kidney cysts? These early family experiences ingrained in me the importance of communicating in plain language and the responsibility we have as physicians of educating our patients and their families. I would later learn in my medical training that not all physicians learned these communication skills or prioritized them.
Your worst nightmare came true when we found his second tumor, this time in his brain. You and your family prayed that it was a benign tumor relying on your deep faith in God. So, when I broke the news that it was a malignant tumor, it was far from a buen diıa for your family. Your son had a quick postoperative recovery, and we made plans that I would see him in clinic the following week to discuss his treatment plan.
“Buenos dias,” you said to me in clinic. You were there again as a family unit, both you and your two boys. We discussed the treatment plan in Spanish, and you asked thoughtful questions about the chemotherapies he would receive. I was impressed that you remembered side effects of medications from his previous treatment and that you learned to use the patient portal on your phone. I also noticed how you had mastered enough English to communicate simple things with the nurse or with the physical therapist, but you preferred to speak to me in Spanish. You son was well plugged into our large pediatric academic medical center and all the support that came with it. Our nurse navigators helped you coordinate multispecialty appointments. But I was acutely aware of what another subspeciality appointment meant: another day off work for your husband without pay, or if he did go to work, it meant you had to figure out transportation as you did not know how to drive, challenges my own family members experienced.
So, we started outpatient treatment, and I saw you on a weekly basis. Your son tolerated his therapy exceptionally well and continued to have many buenos dias that you were grateful for. In between updating me on how your son was doing at home, your husband would lovingly tease you and make light of what I am sure was a very stressful situation. Your older son would also come to the appointments, and at one point, we ended up talking about school and going to college. I shared with him that I was the first one in my family to become a doctor and how important it was to work hard in school now, so later on, he could apply for scholarships, and one day, he could be the first in his family to go to college. I told him, “If I can do it, you can do it too.” I could see his excitement in his eyes. At the end of clinic, you ended with “Muchas gracias doctora.”
Six months later, your son completed his therapy and began surveillance scans. You shared with me your anxieties around these scans. I tried my best to normalize your feelings. Thankfully, your son’s scans continued to be negative for tumors and he continued to have good days. Every so often I would remind you about the importance of your own surveillance scans and you would nod your head. This was not new to me as I had taken on the role of reminding my siblings and cousins to schedule their annual health visits and have screening tests for kidney disease given our family history.
A year and a half went by, and then during one of our routine visits, you told me that you were not doing well and that, in fact, you were having malos dias. I asked you what was going on, and you told me how you had gone to your local community hospital for abdominal pain and had been diagnosed with stage 4 pancreatic cancer. I was shocked. After updating me on your son and how well he was doing, you asked me a question that stayed with me, a question that my own family members had asked me before: “What is the prognosis for this?” You caught me off guard. I turned the question back to you and asked you what your oncologist had told you. You said they hadn’t given you numbers and that you understood that a higher stage was bad. You looked at me with pleading eyes. I told you how my specialty was children with cancer and that I did not know the numbers for adult cancers. I encouraged you to talk with your oncologist more about this. Although this was during the first year of the pandemic, I gave you a hug. Although I didn’t say it out loud, we both knew this was not going to end well.
I called you the following week to check on you. I asked if you wanted my help to get a second opinion at the academic adult hospital next door. You explained that you were about to start therapy at your community hospital and that since you didn’t have health insurance because of your undocumented status, you didn’t want to pursue a second opinion at this time. I told you that if you changed your mind, I would be happy to help.
I didn’t hear from you for several weeks, and then I got a notification that your son had multiple emergency department (ED) visits. In his electronic medical record, I read that it was your husband who had brought him in for vomiting. I read in a note that your husband had told the ED team that you had recently died. I was in shock. I cried for your sons who were left without a mother and for your husband who would now have to learn to navigate the medical system by himself.
Two weeks later, I saw your sons and your husband for what I thought was going to be a routine visit. I was shocked when your husband told me that child protective services had been called on them by the hospital social worker. He told me the story that instigated this call. Your older son, now a teen, was struggling to deal with your death. One afternoon, your husband asked him to take out the trash and your son had an emotional outburst and said some disrespectful things to your husband. Your husband reacted quickly and flicked your son’s cheek. This story was shared by your older son to the social worker who made the report. My shock turned into anger, and I did my best to stay composed in front of him and your sons. I understood your husband’s reaction, as respect to parents is a core value in Mexican culture.1 I wondered if the social worker understood this. Before I left the examination room, I told your husband that the medical system can be biased and warned him to be careful and know his rights. For my own extended family had experience with child protective services, several years back my young aunt, a first-time mom, lost custody of my infant cousin after an unwitnessed fall that resulted in brain injury. I wondered if the outcomes would have been different if she was white, wealthy, and well-educated. I would later learn in my medical education the disproportionality in reporting by race and ethnicity.2
Once back in the work room, I cried sad and angry tears. Sad that your husband had to go through this process and the added stress after the recent trauma of your death. Angry that I, the physician with the longest continuity with your family, the physician who spoke your primary language and understood your culture, was not notified before the reporting. Angry also that this system was yet again failing our most vulnerable populations. Knowing that when resources are limited, it is low-income, non–English-speaking families that usually get neglected first. Child protective services investigated and concluded that no major action was warranted.
Thankfully, your son’s surveillance scans continued to be negative. In the next couple of months, your husband learned to navigate the clinics, the ED, and the hospital. Unfortunately, language barriers made this navigation stressful, and more than once, miscommunication with ED doctors increased his anxiety about the possibility of recurrence for your son. I reiterated to him to call our clinic with any question, saying that I’d rather we answer his questions instead of having him worry weeks on end at home.
Several more months passed, and your son was due for surveillance scans again. I got a call from the social worker that day notifying me that your son came with his uncle to his scan appointments because your husband was admitted in the hospital and that there was concern for cancer. This was completely unexpected as your husband was not the one with the family history of cancer. I called your husband later that day to give him the results of your son’s scans (negative for recurrence and negative for new tumors) and to ask about his health. He told me of the weight loss and abdominal pain. He went to the same community hospital where you had gone and had scans that showed a mass in the colon. He told me he was about to be discharged and insisted on keeping your son’s clinic appointment with me the following week as he wanted his son’s g-tube checked. At the time, it seemed strange tome that he was hyper-focused on the g-tube instead of focusing on his own health, but in retrospect, I think the g-tube was something he could control during a chaotic time.
I saw your two boys and your husband in the clinic the following week. I was shocked to see how your husband looked compared with our last visit 6 months ago. He was in a wheelchair, had lost a significant amount of weight, and looked like he had aged 10 years.
He told me how his son, my patient, continued to do well. He was worried the g-tube was irritating him more. We ended up exchanging the size as he had outgrown the previous one. Then, he told me about his health, that the biopsy results were still pending, and that he understood the mass was localized. He shared how the preliminary diagnosis of cancer was disclosed to him: the doctor came in the room and abruptly said it was cancer in front of your older son without a warning. My heart broke when I heard this. Your older son lost you to cancer less than a year ago, saw his brother undergo treatment for two separate cancers, and saw his cousin lose his fight to cancer. He didn’t deserve this. I held back tears, and I apologized for the fact that his family had to experience this poor disclosure. I worried about the care he was receiving at the community hospital, knowing cancer is the leading cause of death for Latinos in the United States and that social determinants of health have a role in this.3 I knew the odds were stacked against him. I reminded him that he has rights, including having an interpreter when talking to the medical team.
Then, he said something that took me by surprise, “I need to get my affairs in order.” I felt this was premature and also felt helpless as I desperately wanted to help your family. I told him he didn’t know all the information yet, and if the cancer is localized, then the chance of cure is higher. He nodded his head. I asked if we could provide assistance in any way, such as coverage for transportation, but he declined this offer. At the end of the visit, he said “Muchas gracias doctora.” At home, I cried for your family and questioned how one family could be so unlucky.
I called your husband on a weekly basis for the next 2 weeks to check on him. I then went on service and was too busy to call, but the following week, I got an e-mail from the oncology psychologist stating your son and your husband missed a telehealth visit, adding no one answered the phone when she called. I replied that I had not spoken to your husband in over a week. A couple of days later, I got a call from your son’s social worker, one of the Spanish interpreters had found out via Facebook that your husband had died. Almost a year after you died. I cried.
I went to your husband’s funeral. I cried for your boys who lost both parents in the span of a year. It was comforting to see that you had a lot of friends in the community who cared about your family. It was also comforting to hear that your cousin agreed to take in the boys.
Gabriela, you and your husband did a phenomenal job raising your boys especially with the two cancer diagnoses of your younger son. Your son, my patient, was always happy in clinic, and that spoke volumes to the type of environment you created for him at home. Despite the complexity of navigating a large academic medical center, you did it with such poise. You were an extraordinary mother.
Was it fate that our lives became intertwined so early in my fellowship training? Latino physicians in general are underrepresented in medicine,4 and the same is true for Latino oncologists in academic medicine.5 So, it was an honor and privilege for me to be your son’s doctora. Throughout our encounters, I thought about how I would want my own extended family to be treated by their medical team, and I did my best to communicate, educate, and advocate for your son and your family. Your family reminded me of barriers low-income, immigrant, Spanish-speaking families face as they navigate the
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, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. In this episode, we will be discussing her Art of Oncology article "Buenos Dias: A Letter to My Patient's Mother."
At the time of this recording, our guest has no disclosures.
Jenny, welcome to our podcast and thank you for joining us.
Dr. Jenny Ruiz: Thank you so much for having me here. It's truly a privilege.
Dr. Lidia Schapira: It's our pleasure. So, Jenny, I like to start by asking our authors what it is that they're reading now.
Dr. Jenny Ruiz: Yeah. So I'm currently reading Lean In by Sheryl Sandberg as I'm new to a transition to a new institution.
Dr. Lidia Schapira: Doesn't sound like a lot of fun, but I hope that it's useful.
So let's talk a little bit about your work. What made you choose a career in pediatric oncology?
Dr. Jenny Ruiz: I think my decision to go into medicine has stemmed from my extended family's interaction with the medical field. At the age of 18, I decided to be premed because I had an encounter with my grandfather, taking him to his clinic appointments after his kidney transplant and being asked by the doctor to interpret for him. I was at that time 17 or 18, and I thought it was a very interesting question that they were asking me. I didn't really think my grandfather would be telling me, his granddaughter, all his personal medical symptoms to then tell the doctor.
Dr. Lidia Schapira: It's a huge responsibility that's often, I’m going to say, inflicted on children, and especially in this case, with your grandfather. You talk very candidly and openly about being in a family where there was a genetic susceptibility to disease other than cancer and your solidarity with your patient and their family for being an immigrant community and having this. Tell us a little bit about the years that you lived with the story. You cared for this child for many years before sharing the story so openly. Tell us about that.
Dr. Jenny Ruiz: Yeah. I met this family my first year in the first month of my fellowship four years ago. At the beginning, he was doing so well. I mean, it was unfortunate he had a second diagnosis of cancer, but he did exceptionally well in the outpatient setting, really not having any admissions for all of that. And it was just beautiful to have that relationship with the parents, being able to speak the same language, being able to understand the culture, and seeing them kind of go through this all over again and seeing a little boy grow up.
And it wasn't really until the last two years that a lot of the incidents that I describe in the story started happening. And so it definitely was a lot to kind of process it with the family as they themselves were going through all the trauma of having the parents diagnosed with cancer. And I think it definitely did take me a while to even after all of that, to put it down in the story and writing it down. I found myself oftentimes kind of writing a little part of the story and having to pause because of all the emotions coming back. And so I think I did that a couple of times across the country, across the world, honestly, little paragraphs here and there.
Dr. Lidia Schapira: That's so interesting. Assuming, maybe reading into this, that telling the story, writing the story, helped you process something that was very personal, very challenging. Can we talk a little bit about this issue of language? You said that you've seen this look of relief on patients' faces when they realize that you speak Spanish and that you can communicate with them, Spanish in this case being the language that binds you to the patient. Tell us a little bit about that, how you view language and speaking the same language as your patient and their family.
Dr. Jenny Ruiz: Yeah, I think we often take for granted that we're able to communicate with our doctors, our medical team, in our primary language. And it's very easy to overlook that there's a lot of immigrants in this country who don't have that luxury of being able to speak to their medical team in their preferred language. So I think one of the main drivers for me to go into medicine is to be able to connect with these families who speak Spanish, knowing that Spanish is my first language, and be able to really communicate in a plain language and explain it to them in a way that they understand and for it to be much easier to then see if they truly understand and check for understanding. I think in pediatric oncology especially, it's a very stressful time to be told that your child might have cancer and to be able to have that conversation in your preferred language, I think takes a lot of that stress away.
Dr. Lidia Schapira: You talk about the fact that patients often feel relief and that it's easier to build rapport and trust, but I think there is something else that perhaps I read into or I wanted to read into it, which was warmth. I think that it's easier to convey that warmth or to understand each other a little bit better when there's concordance in language. So do you find yourself being assigned more of the Spanish speaking families as a result of your ability to communicate?
Dr. Jenny Ruiz: I didn't really get that sense in fellowship. I mean, I think at one point they were asking for a volunteer from the fellows who needed to pick up another patient, and it just happened that the family spoke Spanish. I was like, “Of course!” I have found it very interesting in fellowship when I would be on call for some reason, every time or quite a few times that I was on call, it'd be a Spanish speaking family in the ED. And I loved going to talk to them. I might not be giving the best news to them, but the fact that somehow our timelines aligned and they would be in the ED, and I would be on call, and I would be that first physician to kind of talk about cancer with them.
Dr. Lidia Schapira: That's such a beautiful sentiment that you express there. And I wonder if you can tell us or teach us a little bit about how you feel when you work with an interpreter for a language or a culture that you don't understand. Just something that happens to all of us in a society that hopefully welcomes immigrant families.
Dr. Jenny Ruiz: Yeah, I mean, I think there's definitely a lot of skills to be taught in how to work with an interpreter. Again, using simple short sentences, positioning yourself as you are talking to the family, there's not going to be this three-way thing, trying to make that connection as much as possible. I think also noticing the unspoken words and the subtleties of the parent's face, the mom or the dad is very important, even with an interpreter, be like, oh, I noticed this. Is there something that you want to discuss more that made you do this?
Dr. Lidia Schapira: And even using an opportunity to debrief with interpreters to make sure that we got it right. In your case in pediatric oncology, I think communication is even more complicated because you have the parent and the child and the interpreter. So tell us a little bit about your experience working with families where kids maybe speak English much better than the parents. You still need to communicate with the parents. I think that adds more challenges.
Dr. Jenny Ruiz: Last year when I was a first year attending, I actually prepped a fellow with a talk with a Spanish speaking family with an interpreter. But the teenager's English was his primary language, so yes, he knew Spanish too, and the family wanted him to be involved in this discussion. So definitely a lot of more nuances there, a lot more emotions to be aware of, subtleties to be aware of, nonverbal communication that's happening. But I think honestly, we rely a lot on the parents to guide us in terms of: Do we want the child to be involved? How much information? Do we want to then say it differently for them at a later time or include them from the beginning? It's a lot of talking to the family and making sure that we are meeting their needs.
Dr. Lidia Schapira: So what I'm picking up from our conversation is that you seem to be very tuned into the emotional part of the work. Let me ask this question, and that is: How do you take care of your emotions in these situations where there's so much at stake?
Dr. Jenny Ruiz: Yeah, I mean, I think it definitely can be a very emotional career and certain instances can make it even more emotional and stressful. For me, it's been very important to have a very strong support system. I have my husband, I have my extended friends who are in the Northeast, have become another family for me. And I think, honestly, you know, prioritizing your mental health, whether that's doing your hobbies, whether that's going to therapy, have all been very important for me in this career.
Dr. Lidia Schapira: I am delighted to hear you say that you are taking time for yourself and looking for things outside of work. That said, let me turn back to the relationship you developed that you describe here with Gabriela, the mother of your patient to whom the letter is addressed. You talk a lot about feeling strongly when you felt there were injustices or when they didn't have the proper access. Tell us a little bit about what that relationship was like and what it's been like for you when you find yourself advocating for families.
Dr. Jenny Ruiz: Yeah, I think these strong feelings stem from seeing my family go through these same struggles and wanting the medical system to do better for immigrant families so they can have the best outcomes. I think oftentimes I find myself realizing I'm getting emotional or worked up and be like, okay, there's something going on here. I need to step back before I start talking to someone else about this, of what I want to happen or what I need to advocate for and really knowing that people will respond better if I stay calm and also kind of push back and in a professional way, ask questions, like, why is this happening? And if this is not our standard, why are we deviating from our standards?
Dr. Lidia Schapira: So I know this is an early moment in your career. I mean, you're an assistant professor and just in the second year of a new job. But how do you imagine that this interest and this advocacy that you're so good at and feel so strongly about is going to impact your career going forward?
Dr. Jenny Ruiz: I hope to continue to be a role model for trainees and faculty as I progress in my career, maybe I'll take on some leadership roles within the med school education system.
Dr. Lidia Schapira: As you imagine yourself teaching, leading, and modeling behaviors, what are the most important messages that you'd like to convey to your students or peers?
Dr. Jenny Ruiz: In pediatrics, at least ask the parents. Ask the family what language do they want to be communicated in for the medical information of their child? And then if it's not a language that you have been certified in to speak in, or are a fluent language native speaker, then get that interpreter. And then again the plain language and the short sentences.
Dr. Lidia Schapira: So the health literacy and language preference for you are sort of intertwined, so to speak. So I'm curious, does your institution routinely collect that information, and do you ask every patient their language preference?
Dr. Jenny Ruiz: I think there's definitely lots of room for improvement on how that information is being collected. I don't think it's being done in a systematic way. And hospitals are so large, everyone's doing it in different ways. When I was a fellow, I would be called from the emergency, say for cancer. I would always ask the emergency team, “Do they speak English, or am I going to need an interpreter for this?” And it's sad to say, to share that at one point they told me that the family spoke English and it went down there and then they're like, actually, no, English is not the primary language of them all. But we haven't been using an interpreter and I'm like, what is going on?
Dr. Lidia Schapira: Yeah, I think that unfortunately, we've all been witnesses to such moments and it's sort of time for our culture to get this right.
As we get towards the end of this lovely chat, let me ask if you've shared some of this with your family and how your role, perhaps as the early interpreter for your grandfather has evolved over these years in terms of your being at this position of being an expert now in medicine and perhaps a facilitator.
Dr. Jenny Ruiz: Yeah, I definitely have taken on a role with my siblings and my cousins, kind of telling them the things I see in medicine and telling them why it's important to go to your annual checkup to get those screening tests because too often we see too many people just die too early, when it could have been prevented or a medication could have started early. So I think I've definitely taken on that role within my extended family. I hope that they kind of trust me and that little trust can then slowly build into a trust with their own medical team.
Dr. Lidia Schapira: And if I may just dig a little bit more into this story, my last question is what did it feel like to go to the funeral for your patient's dad?
Dr. Jenny Ruiz: I never thought that I would be going to a funeral for a parent. I thought I was going to be going for the child with the field that I had chosen. So it was definitely unusual. I had a couple of family members also pass away during my fellowship years, so it was a lot of reflection of the things that my family went through, things I saw with this family, a lot of similarities. So it's definitely been a very unique story that I felt like I needed to get down on a paper and share because oftentimes we don't hear these stories.
Dr. Lidia Schapira: It was definitely a message that needed to come out. And we are so grateful to you for writing it, as you say, in little snippets in different times of your life from different locations. Thank you for that and thank you very much for agreeing to chat with me today.
Dr. Jenny Ruiz: Thank you.
Dr. Lidia Schapira: 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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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. Jenny Ruiz is an Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine.
- Visa fler
