EP. 17: ART, DRAMA, AND A TERMINAL ILLNESS

WITH ELLEN DUNPHY

Jun 28

WITH ELLEN DUNPHY

An actress and playwright shares her experiences facing a terminal illness and what she has learned about grief and hope through crafting a play about her journey.

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Episode Summary

When actress and playwright Ellen Dunphy — then a robustly-healthy 33-year old — first met co-host Dr. Tyler Johnson in early 2020, they were filming an educational video teaching doctors how to discuss terminal illnesses with patients. Six months later, in a twist of fate, upon receiving a terminal diagnosis of gastric cancer, Ellen learned that Dr. Johnson would be her oncologist — for real this time. In this poignant episode, Ellen candidly shares her experiences from the moment she received her diagnosis to how she has subsequently grappled with grief, and discusses how this has fueled the creation of a play about her cancer journey. This is a rare occasion of conversation and reflection between a dying patient and her doctor on what matters most in medicine.

We note with sadness that Ellen passed away peacefully on July 4, 2022, surrounded by people who loved her.

Ellen Dunphy was a stage and on-camera actor and playwright based in the San Francisco Bay Area. She acted in dozens of stage productions over the last 10 years in Milwaukee, Chicago, and now the Bay Area. In 2016, she made her on-camera debut with performances in films, webseries, and commercials.
In 2020, she received a terminal diagnosis of gastric cancer and after that wrote and acted in a one-woman play based on her illness experiences. The piece examines dying, acting, imagination, connection, and authenticity.
Ellen passed away on July 4, 2022.
In this episode, you will hear about:
• Ellen and Tyler’s second meeting, under drastically different yet parallel circumstances - 5:03
• What it was like for both Ellen and Dr. Johnson at the moment her diagnosis was delivered - 7:24
• What was surprising to Ellen about going through cancer treatment - 13:24
• Ellen’s advice to medical professionals upon reflection of her own treatment journey - 16:40
• Ellen’s reflections on the process of writing her play about receiving a terminal cancer diagnosis - 21:12
• The meaning of medicine, as seen by Ellen - 27:45
• Ellen’s advice to all patients on the importance of advocating for oneself - 29:00
Henry Bair: [00:00:01] Hi. I'm Henry Bair.

Tyler Johnson: [00:00:03] And I'm Tyler Johnson.

Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build health care institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?

Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across health care, from doctors and nurses to patients and health care executives. Those who have collected a career's worth of hard earned wisdom, probing the moral heart that beats at the core of medicine. We will hear stories that are, by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.

Tyler Johnson: [00:01:02] This is Dr. Tyler Johnson. And it is a special privilege today to record a podcast episode that is unlike any that we have ever recorded, in that we're going to be speaking to a woman who is a professional actress and is very accomplished in that. Right. But who I came to know both in that capacity and then later as one of my own patients. Our guest today is Ellen Dunphy, and we are really grateful that she would join us. Thank you so much, Ellen, for being here.

Ellen Dunphy: [00:01:37] Thank you for having me.

Tyler Johnson: [00:01:38] So, Ellen, I think that in order for our audience to get a little bit more of an understanding of how you and I know each other and sort of where our relationship comes from, can you talk about where we first met and what that was like?

Ellen Dunphy: [00:01:51] Yeah, of course we met making a training video for doctors. One of my jobs is as a standardized patient, and this was one of those jobs pretending to be a patient. They give us a case and we do it to the best of our ability. We met on set. You seemed a little nervous because of the camera.

Tyler Johnson: [00:02:16] Yeah, that may have been your standard issue, but I had definitely never done anything like that before.

Ellen Dunphy: [00:02:20] Yeah, it makes sense. I was nervous too, so puts us on a little bit more even playing ground.

Tyler Johnson: [00:02:28] That's kind of you to say. I'm not sure it's true. Or at least if it was, it didn't really show through on your end, but it probably did on mine.

Ellen Dunphy: [00:02:34] I think the video turned out very well.

Tyler Johnson: [00:02:37] So you and I were both being actors at that point, and to be clear, you were not my patient. We had never met each other. We didn't know anything about each other. We might have passed each other in a hallway, like when you come to do acting stuff at the medical school. But we had no preexisting relationship, right? We just showed up one morning on a set that was in a clinic in Redwood City. And we had a case, as you said, that we had prepared, which we then filmed a dozen times or something. But can you talk a little bit about what was your life like at that point? Just your life in general, outside of that encounter? And then what was the case that you were portraying?

Ellen Dunphy: [00:03:12] My life in general was, you know, doing standardized patient gigs, performing in theaters, taking care of things around the house. I like to think I was a pretty good housekeeper. And then as far as the case that we were portraying, it was a doozy. It was teaching doctors how to have an end of life conversation with someone. So my character was terminally ill, and Dr. Johnson's character had to tell me that I was terminally ill. And one phrase that really worked for me every time was, No matter what happens, we will always be your team. It's a very powerful, genuine sentiment.

Tyler Johnson: [00:04:03] And I'm curious, Ellen, as an actress, I mean, as you mentioned, it really was a doozy. You know, it was a very emotional encounter. That was kind of the point of it was to teach other doctors how to approach those kinds of very difficult conversations. But as an actress, who at that point was, as you said, totally healthy, you know, running around, doing your acting gigs and whatever else you were doing. What was it like to portray a patient in that kind of situation?

Ellen Dunphy: [00:04:30] It was difficult. It was hard for me to imagine and put myself in that place. You told me little things about how I might physically feel and that helped inform what I was doing. But yes, it was very difficult to imagine my own death.

Tyler Johnson: [00:04:50] Yeah, I can imagine. And do you remember exactly when that was that we made that recording?

Ellen Dunphy: [00:04:55] It would be in like January of 2020.

Tyler Johnson: [00:04:58] Okay. So just before the pandemic hit, maybe then tell us the story that led up. And so just to be clear, we met on a morning in Redwood City on this sort of little movie production set. We were there for probably 4 hours, recorded multiple takes of this video, and then I think it got edited in whatever and then was deployed out to other Stanford doctors to watch and to learn from. That was in about January of 2020, and then talk us through the story that led up to the next time that we met.

Ellen Dunphy: [00:05:27] So I during this time, was having a lot of gastro intestinal issues, not being able to eat much, some vomiting. And my gastroenterologist was trying to figure out what is going on with me. I said, we'll get a consult with surgery oncology, which to me never felt very serious. It's like, Oh, we're just going to consult with them. And that was the vibe that I was getting from. Team as well. But then when they did do the biopsy in July of 2020, it was clear that I had no tumor and tumors throughout my stomach and my. Stomach lining the abdominal wall. So immediately I'm stage four. It was quite a blow. Nobody told me that. They just said it's in a lot of spots. And my surgeon said, we'll have you talk with your doctor, Tyler Johnson. And I was like, I recognize that name from somewhere. And then I was able to recall that it was from the video. And I told my surgeon that, like, oh, I think I know him. He said, Is that okay? And I thought, Yeah, maybe that's a good thing that I already have kind of a personal relationship with this doctor and that can maybe make some of what I'm going through easier. And it did in some ways, but in others not so much.

Henry Bair: [00:07:23] So, Ellen. Most clinicians do not, at least to any degree of regularity, manage patients with illnesses as serious as yours. And as a medical student, having completed all of my rotations through the various departments of the hospital, most patients whom I cared for had already known of their condition by the time I met them. Few of us, I'm trying to say, have been with a patient. At the moment they learn of a serious diagnosis. I'm wondering whether you can share with us what that moment was like for you, that moment when you first learned what was happening.

Ellen Dunphy: [00:08:01] Everything got very still. Every thought emptied out of my head. I felt a kind of tunnel vision where it could just see my surgeon's face. Just hang on every word you're clutching for something to hold on to to make sense. And it just doesn't. So I was very eager to meet with Dr. Johnson and ask my questions and get some answers. And when that happened, he just so happened to use some of the same language and phrasing that he used very effectively in the video. With me again. And that made me furious. I told them that mine worked really well on me in the video and I didn't know for a long time why it made me so angry. I had to think about it and tease it out, and it's just that in that moment, he wasn't treating me as an individual. The words he was using were like a script that he could flip through. And, you know, it sets up this barrier between us.

Henry Bair: [00:09:19] That is a really interesting point you make, because when medical students, when we learn how to have these kinds of conversations with patients, it is presented like a script. So it's an interesting insight that this was what felt perhaps alienating, it sounds like, or something to that effect for you. Can you tell us how your relationship with Dr. Johnson evolved after that? How did you grapple with that initial feeling of anger and what was the relationship like after that?

Ellen Dunphy: [00:09:54] Well, I tried to tamp it down, and Dr. Johnson then moved away from that more scripted language, which is what I was hungering for, was just a recognition that we'd done this already. And he stayed for a really long time and answered all of our questions. And that was a step in the right direction for sure. And then over time, we just found our way to a more personal relationship, which culminated for me really when I did a benefit performance of the Shakespeare play 12th Night, which Dr. Johnson watched. And he not only watched it, but then he brought in a big bouquet for me, which involved a lot of planning, I think, because I don't normally go into the clinic anyway, but it just made me feel really scene like an individual, which is exactly what I've been hungering for, and I just felt really proud and lucky to have him as my doctor.

Tyler Johnson: [00:11:09] That's really kind of you to say, and I really appreciate you saying that, you know, this is going to go back, I guess, a little bit, but I want to just paint the picture a little bit from my perspective, the same thing that Ellen was describing earlier. So, you know, she had had these symptoms that I think you had even had a CT scan. Right. And they hadn't been able to see anything on the CT scan. And they had done sort of a preliminary investigation and couldn't figure out where your symptoms were coming from. And so then, as you said, you were referred to a surgeon. And I recall you describing very vividly, I think, once to me and then later in a one woman play that you wrote about this whole experience, which we can talk about that process of coming up with that maybe a little bit later. But I remember you describing to me very vividly going into the hospital to have this procedure. And then, as you said earlier, when they did the procedure, they discovered that there was cancer that was not easily visible on the scan. And so then I got a call from the surgeon, who is a good friend of mine, who first explained to me a little bit about the procedure and what they had found, and then told me that you were this person that I had met. I'm thinking it was probably six months before that or something that we had had that initial meeting in the studio to make the film.

Tyler Johnson: [00:12:23] And so, you know, I can't remember, I don't think another patient who the first time I meet them as a patient, I knew that I had met them somewhere else before. Right. But let alone someone with whom I had gone through the steps of acting as if I was having an end of life discussion for a patient with terminal cancer. Who now, having done that before, I'm invited into your hospital room. And as you said, we sat there for, I think, for an hour and a half, 2 hours that day, and talked about what was happening and what they had found and what the next steps would be and where we would go from there. And for me to it's hard to describe how surreal it was to be in that same situation now, six months after the fact or whatever, except to have you now grappling with the reality of this diagnosis, rather than trying to put yourself in the shoes of someone who is having that. And as you say, I think as would be true for anyone having great difficulty imagining what that would really be like. I guess I'm curious, as you have gone through what have now been almost two years of this experience since your diagnosis, what about the experience of having cancer and receiving chemotherapy and going through all of this? What has surprised you? What's been different from what you would have initially expected?

Ellen Dunphy: [00:13:46] Well. I guess mainly that my second line of treatment was more effective than the first line and had for me very few side effects. So there were a lot of times when I felt just normal having to go to appointments, but normal I guess that's the biggest surprise for me. I guess also the grieving process. My understanding was you go through the stages denial, anger, depression, acceptance in a linear fashion. You graduate. I did denial. Now I'm done with that. Now on to anger. And I just kept finding myself back in anger or depression and not moving on, not reaching my goal of acceptance. And I talked with my therapist about it, and she told me that it's just a framework for understanding the grieving process. It's not a rigid plan for how you will move through your grief. You will be angry some days, and some days you'll be depressed, and some days you'll be back in denial. And that's okay. So it really helped me have more self compassion around not getting to acceptance quickly.

Henry Bair: [00:15:19] I cannot begin to pretend to understand how tough this journey has been for you. But as you think about the last couple of years and what you have experienced, what were the things that gave you strength when things were really hard?

Ellen Dunphy: [00:15:40] Not to brag, but I think I had a lot of innate strength that just came from my own spirit and wanting to fight back. But my relationships with other people, some of them really strengthened during this time. And we say I love you more, which in the past me I would have thought was really cheesy but now is really important for us to express to each other. There's an urgency to and I feel bolstered by that. Also, my husband, I don't know how I would have done any of this without him. He's just so strong. And whenever I need to lean on somebody, I can lean on him.

Tyler Johnson: [00:16:37] You've alluded to some of these things already, but I think that one of the things that is so uniquely helpful about your willingness to come and to talk to us is that the majority of the listeners for this podcast, as far as we know, are doctors, medical students, nurse practitioners, nurses, what have you. And many of them, I think, are in training. And even those who are not in training by virtue of the fact that they're listening to the podcast, I think they're still looking for ways to be better. They're looking for ways to improve. And, you know, as you've made your way through your cancer journey over these last few years, I would imagine that you have interacted with at least dozens, if not hundreds of health care practitioners, broadly defined, right, if you include nurses and nurse practitioners and attendings and all the rest. What can you tell us about what means the most to you as a patient in terms of the way that health care practitioners have interacted with you? What things should those who are listening know to do or not to do that have been the most meaningful in your own care?

Ellen Dunphy: [00:17:54] I think it's important to see the patient as a whole person, not just some cancer puzzle to be solved. Sometimes you get that feeling from somebody, and that's hard to deal with because you're sitting there thinking, I'm all person. Hey, hi. Don't look at me like I'm just a bunch of numbers. And so whenever I've felt care go above and beyond, that's when they leave the humanity. And in their practice, being able to relate person to person.

Henry Bair: [00:18:39] What does that look like? What does it mean and what does it look like to take into account the whole person?

Ellen Dunphy: [00:18:47] Well, I mean, the most extreme example is the one I gave with the bouquet from Dr. Johnson. But it can be as little as sharing something about your life to build some rapport. You got to understand, when you're, like, dying, a doctor is like the center of your world in some ways. Because everything has to pass through them. Everything has to be approved by them. And we are curious about you and hungry for your attention, which I'm sure you know.

Tyler Johnson: [00:19:28] Helen, you've been so kind to highlight me bringing you flowers and some other positive memories that we have shared together. I think, though, with my permission, it would be helpful to those who are listening. Can you talk about a time and I know you mentioned this briefly, but I'm hoping you can go into it a little bit more. When I did something that really just didn't land right, that felt callous or dismissive or like I was generalizing or not maybe seeing you as a whole person and talk about what I did and how it landed and why it was so hard for you. Because I think it's important for us to learn from the places where we don't get it right. And you and I have known each other for long enough and know each other well enough that I think we can even talk about those hard things in confidence.

Ellen Dunphy: [00:20:23] I think for me, the times when it didn't land would be when you're hurrying like you got behind and there's a lot of patience to see. Nobody likes to feel hurried. That makes you feel really unimportant. So it's like the pace of the questions where the eye line is going. Like if you're looking mostly at your notes instead of looking at me, that can cause me to feel hurried. Yeah, that's the main thing I can think of.

Tyler Johnson: [00:21:07] And I want to give you a chance. I know long before you were a cancer patient, you were an artist. An actress. And I knew that about you before I knew you as a patient, as we've discussed. What I didn't understand until quite recently is that you are also I don't know what to call you an author, a dramatist. Anyway, a beautiful and I think, gifted writer with a visceral and lyrical voice. And so we will link in the notes to the podcast, the play that I briefly mentioned before. But can you talk a little bit about the process of coming to write that play and then coming to produce it and film it and all the rest?

Ellen Dunphy: [00:21:51] Yes, people just kept encouraging me to write and I was kind of resistant to it because I'm an actor. I wait for somebody else to write material for me and also like, what did I really have to say? But then I came to realize that I did have things to say by virtue of my dying. So I linked up with a local solo performance guru who shepherded me through the process of writing this one woman show. I think it took about three months of going back and forth and working with him, and then we set a date to perform the whole thing, which was very daunting, trying to cram everything that I had written into my head. But the performance felt really great, felt wonderful to finally share those things that I've been thinking about for so long, and the process of writing is really clarifying as well. You get to find out how you feel about something. It's like therapy. We were able to raise $10,000 for the Gastric Cancer Foundation, and we've recorded it, which is good because after that, my health really started to deteriorate. And so further performances of the show were not possible. But we got a pretty good recording.

Henry Bair: [00:23:31] I really love that you described it as a therapeutic process. Can you tell us some concrete examples of how the writing process and the performing process gave you clarity or changed your perspective or your approach toward your health and your journey?

Ellen Dunphy: [00:23:50] Well, it made me realize that what I was hungering for so much was to be treated like an individual. I was able to look at the times when something didn't land right or I got angry or I felt lonely. And that was kind of the common thread. So I needed to be seen for who I was specifically. I don't know how that's helped me in my care, but understanding is half the battle, right?

Tyler Johnson: [00:24:28] I will say just to pick up the thread of the story. So Ellen wrote this entire play, and for better or worse and sometimes worse, I figure prominently in the things that she talks about, but I didn't even know that she was writing it. Then she recorded it and put it online and then I found out about it. It was, I don't know, it was at least a little bit of time after it had been recorded and put up. And I think I don't know if this is the case, but I could imagine that maybe you would have been a little bit wary of me watching it, because you are very candid in it. And as I mentioned, there are some times when you talk about things that I have said or done that haven't landed well. But I will just tell you, this is nothing I haven't said before, but there was a unique power and impact for me to be able to see the way that my care had landed. Right. I think that you were talking a minute ago about how as a person with a terminal disease, that at some level it comes to be the case that sort of everything in your life feels like it has to flow through your doctor or your medical team. Right. And I don't know that I had ever really understood that, certainly not from the patient's perspective until I saw your play. And there were specific things that I had said or specific things that I had done that in all honesty, once I saw them, reflected back to me through the prism of your experience rather than my experience.

Tyler Johnson: [00:25:59] There were times when it was sort of like watching an old home movie of yourself and thinking, Oh gosh, how did I say that? Or Oh man, how did I do that? Right. And then other times when I thought, Oh, my gosh, you know what? If this thing that had such a positive impact, what if I hadn't arrived at those exact words or that exact action, or what if something had happened? And I mean, I remember the night that I watched not this play, but when I watched you in 12th Night, I remember that night. It was during the pandemic. So it was a virtual cast. And I remember it was very difficult to make that work because I was at home alone with three little boys. And all of which is just to say, you know, I'm sort of trying to wrangle the boys while I'm watching the show. And in retrospect, I thought, gosh, how much would I have missed out on? How much would we have lost in our doctor patient relationship, if for any of a dozen different reasons that had just not worked out that night. Right. And then the bouquet had never come to be. And I don't think that that would have changed fundamentally the degree to which I care about you as my patient or the degree to which I just care about you as a person.

Tyler Johnson: [00:27:09] But symbolically, right. It reminds me of that line. Oh, the little more and how much it is. Oh, the little less and what worlds away. Right. And I feel like oftentimes, I guess from the health care providers perspective, I feel like sometimes the things that we can do that mean the most or the things that end up having the most lasting impact are because we try to do that a little bit more or try to go that little bit of extra distance. I know that this may sound like a funny question, but I actually think it's really, really important and I hope you'll think about it and give us your best answer. You know, one of the reasons for this podcast is because it's widely acknowledged that a lot of health care practitioners feel burnt out. They feel kind of lost, I think is a good word for it. And we hope that by virtue of this podcast that we can help health care practitioners to find themselves, so to speak, that we can help return some aspect of meaning to their work in health care. And I guess I would ask you, having now been a patient and having interacted with many health care practitioners over the years, what do you think you have learned about the larger or deeper meaning of medicine?

Ellen Dunphy: [00:28:29] I think it's just at a fundamental level. People who care. Why would you put yourself through all of this? And it's a lot like I acknowledged that if you didn't care, it's one person helping another through a very difficult time of life.

Henry Bair: [00:28:52] Over the course of this conversation, you have talked a lot about your own personal experiences. And I do think that many of our listeners, patients and care providers alike, will be able to glean a lot from what you've shared. But I just wanted to ask again or ask more explicitly whether there are any other things you would like to share with other patients, whether or not they are facing serious illness. Any insights, advice, thoughts about the patient experience?

Ellen Dunphy: [00:29:23] You've really got to advocate for yourself because nobody's going to care about your health and your outcomes more than you. So as questions take notes, do follow ups be a squeaky wheel? If something's not getting done, you've got to call in, you got to complain. And I know that it's a drag when you're already not feeling well, but I do think that it has led to some better outcomes for my health to advocate for myself in this way.

Tyler Johnson: [00:29:59] Ellen, the last question I'd like to ask you is this one thing that I have observed over many years of taking care of patients with serious illnesses. Is that having a serious illness? While of course, it's something that we would never wish on anyone. Often the experience teaches people lessons that, at least in my observation, are difficult to learn in any other way. And as a consequence, I feel like sometimes people who have been tutored in this very difficult way have things that they can teach the rest of us. They may see things that we don't see, or they may understand things that we don't understand. And so if you were to think about wisdom that you have gleaned because of the very difficult things through which you've gone, things that you could share with us to help us, what might you share?

Ellen Dunphy: [00:31:01] The usual things. I think there is only the present moment and when you're dying, it's hard not to flash forward to that outcome. But if you can remind yourself that you're not there yet and this moment can still be good, then I think you win a little bit over death. And then the only important thing is relationships, really. That's what it comes down to. A lot of people live for their career, for money, but it's relationships that are really important and a real source of wealth.

Tyler Johnson: [00:31:49] Well, Ellen, I'm just going to say that by virtue of your strength and resilience, because of this very unusual and unforgettable way in which we met and then met again, and then in particular, because of your willingness to engage candidly with me, most especially through the play that we have talked about, I think it's fair to say I can't think of another patient I've encountered at any level of my training or practice who has taught me more than you have taught me. And so for that, I want to say thank you. And I want to offer that gratitude, even to a greater extent, because you have been willing to come on and talk about all of these things publicly and to put them out there, to put them on the record. As you know, I've been almost hesitant to do this personally. I was excited to do it, but I've wanted to be so, so, so careful about protecting your confidentiality and allowing your journey and your story to be your own and never leaving you feeling pressured or somehow pushed into doing this. But because you've assured me now probably a dozen, if not two or three dozen times, that this was really something that you wanted to do. On behalf of myself and Henry and on behalf of our listeners, I just want to give you our deep and sincere thanks.

Ellen Dunphy: [00:33:18] Thank you.

Henry Bair: [00:33:26] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the Doctors Art. If you enjoyed the episode, please subscribe, rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.

Tyler Johnson: [00:33:45] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor patient or anyone working in health care who would love to explore meaning in medicine with us on the show. Feel free to leave a suggestion in the comments.

Henry Bair: [00:33:59] I'm Henry Bair.

Tyler Johnson: [00:34:00] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.