The Will to Go On: Learning When to Let Go

Listen to ASCO's Journal of Clinical Oncology essay, "The Will to Go On," by Dr. Sumit Shah, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Shah. Dr. Shah explores a patient's will to live and recounts witnessing a powerful bond between a patient and her spouse.

TRANSCRIPT

Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which offer a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.

I'm your host, Lidia Shapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford. With me today is Dr. Sumit Shaw, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. We'll be discussing his Art of Oncology article, 'The Will to Go On.'

Full disclosures for our guests will be linked in the transcript and can be found on the article's publication page.

Sumit, welcome to our podcast!

Sumit Shaw: Thank you, Lidia! It's a pleasure to be here. Thank you so much for having me.

Lidia Schapira: It is our pleasure. So, before we start to discuss 'The Will to Go On', I'd love to ask you a general question about what you read and what you're currently reading now, and what you can perhaps recommend to our listeners.

Sumit Shaw: Yeah, absolutely, Lidia. So, when I'm not reading randomized clinical trials in oncology, I try my best to read for enjoyment. I typically right before going to bed. I tend to gravitate towards work outside of medicine. Currently, I'm reading All the Light We Cannot See by Anthony Doerr, which is a World War 2 story told through the eyes of a blind French girl and a German boy in France and how their parallel paths eventually intersect.

Doerr writes so beautifully and uses language to create these very vivid scenes. It's really a remarkable masterpiece that's taken him over 10 years to write. So, it's quite extraordinary and highly recommended to our listeners and readers.

Lidia Schapira: Thank you! I love that book. I share your enthusiasm. Let's move now to your story, 'The Will to Go On'. You describe an encounter with patient Diane and her husband during your 2-weeks stint as the attending physician in an academic oncology inpatient service.

So, let's start and unpack that for a moment. How do you envision that role in terms of your connection to patients? I've heard many colleagues who say that it's very difficult because they don't know these patients and they haven't cared for them. How can you introduce some humanism into that role?

Sumit Shaw: Yeah, absolutely, Lydia. So, we have several services that deal with just Oncology at Stanford. My favorite service is the teaching service where we're working with residents and interns and fellows, strictly with patients who have cancer.

It is a very emotionally charging month for our trainees. And a lot of my responsibility, I think, is actually keeping that dynamic and the culture of the team to be as positive as possible.

So, I have certainly a responsibility to my patients, which I think is really important, but really also to the trainees. And so, I think it's incredibly important that we model good behavior.

So, that's what I see as a large part of my job is really having these very difficult conversations with patients for the most part that we've never met because they're often treated by their own primary oncologist who's someone different than I, and oftentimes even more challenging given that they're typically coming in with a disease that we may not be even familiar with, given that we mostly subspecialize at Stanford as well.

So, that can be very difficult to meet a patient that you don't know as much about their disease and, too, is that you don't know much about them as a person. And then to have to be the liaison between a patient's primary oncologist and what you think is best for them there in the hospital. But I do think that sitting by the bedside, maintaining eye contact with our patients, and putting your arm on them is so important, not only for the patient to feel that there's still a connection with not just you but their outpatient oncologist, but also for the house staff to see that, that there's so much about humanism in oncology that makes it such a special field.

Lidia Schapira: So, your patient Diane has metastatic lung cancer, and you are a GU medical oncologist, so that is a clear example of what you just told us. And you tell us that she's now admitted to the hospital having suffered many complications of that same immunotherapy that you say she had hoped would be her savior. Tell us a little bit about how you interpret your role as a teaching attending, and also, as a communicator with families when you see patients who are coming in, with toxicities from treatments and treatments that may end up being futile.

Sumit Shaw: I think one of the more challenging aspects of our jobs as oncologists is actually seeing patients that have complications from their own therapies as opposed to sick coming from cancer itself.

I think that it adds a layer of responsibility, and almost sometimes guilt that you may have brought this on. Obviously, these are not our intentions but we have to be so humble that our therapies can be incredibly toxic.

And we often talk about these drugs like immunotherapies, which are the brand-new shiny object in oncology, where everyone is talking about it because it's on every single commercial out there so patients really want it.

But we sometimes mitigate some of these symptoms and the side effects that can really affect our patients. So, it's interesting in the outpatient world, we talked about these drugs as potentially life-prolonging or potentially even life-saving. But we see the complications, you know, very closely in the inpatient setting.

So, we have to discuss and kind of realign expectations, and make sure that our patients are now aware that these drugs do have toxicities. But hopefully, we can try to overcome these toxicities and get you back to where you were before you came into the hospital.

Lidia Schapira: So, now let's go and meet Jim and Diane. Diane is your patient but Jim is an important character in your story. They've been married for over 50 years, and Diane is the one who is hospitalized with all the complications of treatment. And you talk about entering the room and you use the first person.

So, were you alone to meet, or did you have an entourage? I ask this because I've found and I think it's important to also address the difference between walking in alone or walking in as a team leader as you say, understanding that part of your role is to model behavior for your trainees.

Sumit Shaw: I actually did have an entourage with me. I feel that patients and families really appreciate that. I try to walk in last, typically when I go into a room, largely to empower the trainees to serve as the primary physicians.

And when things get a little bit more challenging in terms of discussions that require a certain level of understanding of oncology, I tend to step into that situation. But I won't forget standing in the corner of Diane's room, seeing Jim wheeled into the room and just seeing how these two individuals just looked at each other so intently, and you can just see visibly how much they missed each other based on the expression of their faces, and that something will always stay with me. But it was quite an incredible moment.

Lidia Schapira: So, you call a family meeting because you think that Diane's prognosis is very poor. And you want to have goals of care discussion. And so, by what you call a tiny hospital miracle in the pandemic, Jim, who is also a patient in the hospital waiting for cardiac devices wheeled in accompanied by his son, Diane is there with her daughter who's a nurse at the bedside. And you have a family meeting, which is actually the celebration of this reunion and a clear demonstration of their love. Tell us a little bit now looking back, what actually happened in that meeting?

Sumit Shaw: Yeah, so these meetings can be very difficult to navigate largely because traditionally, we're taught to ask these very open-ended questions to respect patient autonomy, and have patients make their own decisions about this very sacred question about what would you want to have done towards the end of life. These can be very, very difficult conversations to have, obviously.

But I also feel that this puts an undue burden on a lot of patients who may not have as much experience as we do in understanding the consequences of these decisions. So, for instance, especially in this DNR discussion, I tend to have less of an open-ended conversation with our patients.

So, I tend to be very direct and offer my recommendation, and then hope that the family would also be in agreement. And certainly, we put those questions out there to them and 9 times out of 10, they are in agreement. I think it was also very helpful that their daughter, Susan, was also in healthcare as a nurse, so she was able to understand some of the implications of this.

But these conversations can be very difficult in general but I do sense many times, I actually get a lot of comfort after these conversations because they often go relatively well and you can just see a sense of relief that's taken off the shoulders of our patients, that is actually very comforting to see.

Lidia Schapira: So, what makes this situation so special? The reason probably, and I'm going to ask you this question in a few minutes, that led you to want to write about it and share this experience with your colleagues is the dynamic between the two partners, right? And it looks like Jim perhaps had been the decision maker and Jim's input here was really important. And Jim wanted a quick resolution to this question. Tell us a little bit about how you felt watching that happen right in front of you.

Sumit Shaw: It was quite extraordinary in a lot of ways because you could see that Diane was very much dependent on Jim. Prior to her becoming sick, she was a very spry and spunky elderly woman.

But you could see that she really deferred to Jim in a lot of ways and her children to explain to her what they thought was best for her. And so, when Jim was certain that they needed to make a decision right then, I actually was taken aback because I thought that it would take much longer given Diane's ambivalence about the situation in terms of, she was just really confused. She didn't know whether to be DNR denied. She didn't know whether to pursue comfort measures to keep on going. And I think Jim's reassurance really helped her.

Lidia Schapira: One of the things that made this meeting so special was that it appears that it was Jim's presence and his resolve to reach a resolution that moved the meeting along, and this is something that seems to have struck you, and you use the word in your essay that there was comfort in that. Can you tell our listeners a little bit more about how Jim sort of took the role to advance the conversation?

Sumit Shaw: Yes, it was very clear that Diane was not going to make a decision without Jim. Not only did Diane's daughter, Susan, mention this, but Diane herself said that she needed to have Jim in the room if she were going to make a decision about both the DNR status and about overall goals of care in terms of moving forward with comfort measures.

So, when Jim came into the room, it was very clear that she looked right to him whenever these questions were asked to her about what she should do next. You could just see that these two people knew each other so incredibly well and I just felt that she almost felt that Jim knew her better than she knew herself.

So, while we certainly want to respect patient autonomy, and we always wanted this to be Diane's decision, it was very clear that she was going to defer to Jim. It was beautiful in the sense that Jim was so resolute because he made a very clear decision that he thought would be best for her. And she agreed. And after that, there was no going back and revisiting this question.

It seemed that there was a burden that was lifted off her shoulders and she was able to even breathe a little bit more comfortably after hearing from him, and that was a really beautiful moment to witness.

Lidia Schapira: You have this beautiful phrase there when you say, 'Husband and wife in matching hospital gowns embraced for the first time in weeks.' There's such warmth and there's so much love that you can even sense in the dialogue. So, you leave the room, and then what happens?

Sumit Shaw: So, we left the room, and I remember the entire team was talking about this beautiful interaction that we saw between two people. And then, the next morning, I come into the resident's room, and the resident looks at me incredibly forlornly and says, "Dr. Shaw, Jim died last evening."

I just couldn't believe it. I was shocked. I was in disbelief. We had just had this beautiful meeting and orchestration of getting two people together and witnessing it was almost like a beautiful ceremony in some senses in this reunification. And now to hear that Jim died the day before receiving a life-saving cardiac device was so troubling.

I think it raised a number of questions and emotions in my head. One was shocking disbelief as I discussed but two was gratitude that we were able to arrange for Jim and Diane to have that final moment together. Then three, I was just so worried about Diane and how she would react to this news. So, that's why I wanted to rush to her bedside as soon as possible to see how she was doing.

Lidia Schapira: And so you did! Did you go alone? Did you go with the team?

Sumit Shaw: At the time, I actually went alone, because the team was still rounding with other patients and I just felt an obligation to see her right away. So, I rushed to the bedside and it was very clear that she had already heard the news from her children. She was absolutely stunned and she was in a delirious state.

She wasn't able to verbalize and she was just faintly moaning and staring at the wall in front of her. It was a very difficult sight to see. And for me at that moment, I wanted to offer my condolences, of course, but I also think that there's a lot of importance in allowing families to have time and space to grieve. So, I tried to make myself a bystander as much as possible, not make myself the center of this conversation so I allowed them time to process.

Lidia Schapira: Witnessing is an important part of accompanying patients, right? As we're there, we're just we're present, we're maybe silent, we're just there expressing our support with compassion, and then we get to the end of this story, tell us what happened to Diane, and how that made you feel?

Sumit Shaw: So, after Diane received this news, she was obviously in shock. She continued to have very labored breathing, but we just discussed her prognosis the day before. And we had discussed that her timeline would likely be measured in weeks or months, potentially based on how she was looking.

And as oncologists, we're conditioned to know when death is imminent, typically within hours or days, and she did not have that look, which is why it truly shocked me just to learn hours later, while we are on rounds that a nurse paged us to tell us that Diane had just died.

And again, the same feelings of shock and disbelief, like, how could this be possible just hours after her husband passed? I think, again, many questions surfaced. The first question as a physician and as a scientist is to think about, 'Well, was this brought on by a physiologic response? Could the stress of the news precipitate a hypertensive crisis, which led to flash pulmonary edema, and then hypoxia and arrhythmia, right?'

We tend to try to create a story in our minds about how could this have happened and rationalize this. Could she have had Takotsubo cardiomyopathy - disease of the broken heart - or was there something that's within her that told her that now is a good time for her to pass? That's a question that I really struggled with for some time.

Lidia Schapira: How did you talk about it with the team?

Sumit Shaw: Yeah, I think one of the fundamental struggles in our profession is balancing the ego that's required to take responsibility for another person's life, with the humility to acknowledge that our therapies and our understanding of the human condition is very limited.

So, I think, when I was talking to the team, I felt that in this situation, I felt that no matter what we could have done medically for Diane in this hospitalization, either to keep her heart pumping or to keep on perfusing her organs, she was going to declare herself and that she decided that this is her time.

So, this is obviously very difficult for the house staff and for myself to really accept. You feel almost a sense of responsibility, but also you saw two beautiful patients getting together, and then 8 hours later, neither of them is around. It was truly a heartbreaking scene. But I asked that, you know, the House staff just to be kind to themselves and kind to each other. And also, just try to appreciate the beauty in what we saw as well.

Lidia Schapira: You write in your essay that this scene put into question for you, perhaps that the will to live or deciding to let go is more powerful than physiology that there's something else. In reflecting upon what you saw and what you witnessed there, has that changed a little bit how you approach the time that somebody lets go or how much power the mind has over the body's ability to be in this world?

Sumit Shaw: Yeah, I feel that it's really humbled me, I just feel that there are existential forces, beyond our therapies that really determine the longevity of life, and that it's made me realize that our therapies are very limited in their utility. And if a patient decides that they no longer want to keep going, and they have come to peace with the fact that this is the end of their life, they will make this decision.

We've all seen this as well in our own practices. The times that you come by the bedside of a dying patient and just hours after they meet with you and their family, and you let them know that it's okay, you see that they pass.

So, it's an extraordinary thing to witness and certainly, a privilege, and this concept of a will to live is a fascinating one that I read a lot about as well that really inspired me to look deeper into this subject.

Lidia Schapira: Years ago, there was a beautiful essay published in the Art of Oncology by Steve Greenberg. It talks about a physician who made a house call to a patient to basically allow her to die naturally. And he sat at her bedside, and whatever happened in that room led to her peaceful passing.

So, I think a lot of very thoughtful, humanistic physicians in our specialty have witnessed these moments, and they've been transformative, really.

So, my last question to you is, how did this encounter and this experience change you? And if it did, what do you now bring to the bedside or the next consultation that perhaps wasn't quite there before?

Sumit Shaw: So, this really inspired me to dive a little deeper into this concept of a will to live and really, truly try to understand that. There's actually a psychiatrist that I read about, that I believe, that you actually pointed to me towards is a psychiatrist named Harvey Chochinov..

He actually wrote about this concept of a will to live back in the late 90s and early 2000s. And his research was really at the crux of the death, dignity, and physician aid in dying, conversations that were being had in Oregon at the time. And Chochinov was able to identify certain positive factors that reinforce a will to live, such as a sense of well-being, low anxiety levels, a strong commitment to religion, or living with a spouse.

But unsurprisingly, he also found factors that erode the will to live. These include shortness of breath, and physical suffering, such as pain. But there are also some existential factors that also lead to an erosion of the will to live, including a loss of dignity, or a sense of being a burden to others, which also was a significant risk factor.

So, when I'm putting this together, for me, I tend to think about, are there things that we can mitigate, such as physical pain and shortness of breath to potentially improve a patient's will to live, or are these more existential and are those things that I cannot control, and maybe I should just be more okay with that as well. And I feel if the patient has come to a certain conclusion, I feel that I feel more comfortable now not trying to convince them otherwise and my job is to reassure them and let them know that we're going to care for them and respect their decision. So, I think that that's largely how this scene has really changed the way that I practice now.

Lidia Schapira: My really final question is what made you want to write about this, many people write to process experiences, but then to share it with colleagues and with people that you've never met.

Sumit Shaw: I actually remember going home that evening, after hearing about both Jim and Diane. I went home to my three boys, and my wife, we were at the dinner table. And when my wife asked me, how was your day, and I probably responded with a typical, it was fine, pass the potatoes kind of comment.

And then, I said, 'Wait, no, let me reflect. Actually, my day was not fine. I actually saw one of the most extraordinary scenes that I've ever witnessed in medicine so far.' So, when I told this to my wife, who's also a physician, she's the one that actually encouraged me to write about it, largely for two reasons.

One is to process, as you mentioned, it was very clear that this had a huge impact on me, but two is to remember this as a story. At the end of the day, our lives and our professions are a collection of stories and this is one of the more remarkable patient stories I've ever been a part of. So, that was a big part of it.

And then, the question about publishing, I think is an interesting one, especially in this day and age, because you can either publish in a forum like this, or you could also just tweet about it and get out to thousands of people within seconds at the click of a button. But I think that storytelling is so fundamental to the medical profession in a lot of ways, in the sense that we as doctors are really storytellers. We hear and tell stories of people afflicted with illness and we share this with others to teach and learn.

This goes back to our days in training when we were sitting in the resident room and the chief resident ask you to share a case. Essentially, we're telling a well-structured story of a person who fell sick, and using that experience to teach others.

So, I think by publishing, I'm hoping to share with the community of like-minded individuals to create a culture about sharing about medicine and to relate, and hopefully have people who can relate to my piece and reflect on it and perhaps encourage them to share their own stories with others, too.

Lidia Schapira: Well, thank you so much, Sumit! This has been a lovely conversation.

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 wherever you listen. Be sure to subscribe so you never miss an episode.

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