This transcript has been edited for clarity.
Mark A. Lewis, MD: Hello. I'm Dr Mark Lewis, director of gastrointestinal oncology at Intermountain Healthcare in Utah. Joining me today is Dr Don Dizon, head of community outreach and engagement at the Legorreta Cancer Center, and director of medical oncology at Rhode Island Hospital. We are speaking at the 2024 ASCO Annual Meeting in Chicago, and we'd like to address an important question many doctors are familiar with: What keeps you up at night?
Don, I know you and I are both addicted to social media. We're not talking about our smartphones and the light they emit right in front of our faces as we're trying to have our head hit the pillow, but on a deeper, more philosophical level. I think our field carries a large amount of emotional weight. Open-ended question, but what is it, off the top of your head, that keeps you up at night?
Don S. Dizon, MD: It's poignant, and I think it's a very common scenario that I've run into recently that illustrates what we as oncologists have to grapple with. Oftentimes, the question we all have is, is it better to do nothing or do we need to do something?
Lewis: Yes.
Dizon: It can play out with the 92-year-old grandmother presenting with a treatable cancer who's just incredibly sick. The question is, do you go by what the literature is telling you, which is someone who may be nearing the end of her life through natural causes? Do you just let her go? Or do you intervene with something that's treatable but not likely to kill her either?
Lewis: Right.
Dizon: Or it could be the young mom who is terminal at diagnosis, and you know in your heart that nothing you do is going to help her. To admit that to a family, and even to her, is often very painful. I don't think we, as oncologists, give ourselves a space to acknowledge that, so we make emotive decisions.
Lewis: Yes.
Dizon: It's the adage of, you're damned if you do and you're damned if you don't, so you might as well try to do something. I am often reminded of where the literature is about treatment being a double-edged sword.
Lewis: I don't know about you, but I had formal ethics education in medical school. One of the exercises they put us through was the trolley problem, which goes far beyond medicine. We are standing by the track with a lever in our hand, and if we do nothing, we know that the disease is going to kill our patient. If we intervene, it's almost like we're violating the first rule of medical ethics, which is, first, do no harm.
When we pull that lever of chemotherapy, you and I both know all too well that we can inflict toxicity, and on some level, that just feels wrong. As a physician, and certainly as an oncologist, we come up against that all the time.
I'll tell you what keeps me up: I hate to overpromise and underdeliver. There are a couple different levels. First, you and I are here at ASCO, so I'm going to leave this meeting, I think, filled with novel findings I can tell my patients about.
My first concern is, can I actually execute? Can I actually give them these new treatments we're hearing about? We still have problems with drug shortages of backbone agents. I'm sure in your field, especially, to not have access to something like cisplatin is just mind-boggling. Can I really, in good conscience, tell them, hey, there's this new treatment and I can give it to you. That's one area.
There's also the haziness of informed consent. As part of respecting autonomy, we're supposed to sit down and tell people the risks and benefits. I don't know about you, but when I start thinking about the list of everything that can go wrong, it's like commercials for drugs where there's that kind of breathless audio underneath and it tells you all the adverse events.
I often feel like I'm scaring someone off if I just read that entire litany. On the other hand, am I being intellectually dishonest if I don't tell them all the potential risks? Those are my initial thoughts about what keeps me up at night.
Dizon: It's such a relevant thing just to take the issue of consent. You're right. Everything we do— we have nothing in our armamentarium that is not associated with risk, and some of these are very significant risks. I think we, as oncologists, want to guide our patients toward a treatment that we think is going to balance the risks and the benefits in a way that there are more benefits, if you just trust me.
The thing that always brings it home is when you overemphasize the benefits and you say, sure, there are risks, but they're manageable. Then someone comes in with something that's extremely serious. Then you have to — or at least I do — wonder whether I did something right at that point. I think that whole language of "did you do this right or did you do this wrong" — it would be great if our field had so much certainty.
We have to acknowledge, in so many things, that we are living in and treating in a very uncertain way. This balance of what you know and what you don't… I have a level where I'm comfortable, but then there's a level where I'm absolutely not comfortable. I think that makes it very difficult.
Lewis: Well said. I also think, and I'm sure you think about this too, that the risk is both short and long term.
Dizon: Yes.
Lewis: There was a fantastic talk yesterday at ASCO Voices by Phuong Gallagher, a rectal cancer survivor. She really made a very moving testimony about how, with the initial rush of diagnosis and when her doctors were presenting the treatment plan, like you just said, everything was, "if you don't do this, you're going to die of your cancer." Of course you're going to accept even extremely high risk as presented to you.
She said, now that the dust has settled and she's in survivorship, she's realizing all of these irreversible toxicities from her treatment that she didn't even fully grasp in the moment. You and I both give platinum agents. As a GI oncologist, the drug that actually weighs on me the most is oxaliplatin.
Dizon: Yes.
Lewis: Especially using it in the adjuvant setting. I think that's a whole other realm of balancing risk and benefit. Giving chemotherapy to people who don't actually have active cancer is such a hard sell, or it should be. When I first heard about it in fellowship, I was like, wait; what? I'm going to give people chemotherapy without proof that they actually need it? That's something I still wrestle with now.
Dizon: I think the benefits of our treatments…especially when you tell someone, hey, your surgery was curative and you don't have any cancer, but we're still going to give you some chemotherapy because there might be those microscopic cells walking around in your body and we want to target them. I'm always like, does it, though? I mean, how does bathing a traveling cell in chemo kill it? Does it really do that?
There are things that almost defy logic in so much of what we do. Again, it's about living in this uncertainty. I was just recalling at an LGBTQ event, there was this person who presented their story: transgender, diagnosed with breast cancer while on gender-affirming hormone therapy. Breaks the treatment, goes through the surgery, goes through chemo. Then just asks a simple question: When can I restart my therapy?
It's such an uncomfortable question for oncologists. From our perspective, for better or for worse, hormones are bad when it comes to cancer. Taking hormones is bad, even though the data to back that up don't exist. It's almost this guttural sense. Instead of saying, "I think your cancer might recur if you take this; I don't know why I think that," and acknowledging to oneself that I don't know the answer.
Often, what people are saying is like, "I don't know. I think if you do it, it's a bad thing. I don't know why I feel that way," and that's it. That is the play that we're talking about. It's like you want someone to live after cancer, but you want them to live well. It's not that hard to practice. It's what we do all the time.
It is an issue when you do get these visceral senses of "what I think you should do," and you're just seeing it through the lens of an oncologist, rather than this entire person's identity; you're not giving that any weight at all. Having done that in the past myself, it's an uncomfortable thing to do something wrong.
Lewis: Exactly right. You even started off with your examples. I noticed that you weren't focused necessarily on the tumor type. You were focused on the person, their age, and their demography. To me, this all fits into the larger dialogue about shared decision-making.
Dizon: Yes.
Lewis: I think paternalism was predicated on the notion that you and I walk in wearing a white coat and project omniscience. With that sort of confidence, the patient would just agree to whatever we said. To me, with shared decision-making, it's more about being honest about the things that you and I don't know.
I sometimes feel a little bit like a weather forecaster. When I was growing up in Britain, there was a meteorologist who was famously pilloried in the press for getting the forecast wrong. When he was defending himself, his ultimate sort of statement was, "Well, what do you want me to say, that it's going to be warm and dry but with cooler and rainier spells?" He's like, that's the only way I can tell you the forecast, honestly.
Somewhere between paternalism and what I call à la carte oncology, where you and I just give the menu to the patient with zero guidance, we have to meet somewhere in the middle. I think some of that comes with admitting our uncertainty. I think it also comes with admitting that we're human beings.
Dizon: Yes.
Lewis: As such, you and I are shaped by our experiences. These days, our patients can come in and they can be extremely well read on clinical studies. What they don't have, respectfully, is this gestalt that you and I formed the hard way through years and years of training and practice to, like you were saying, get this guttural sense of how things are going to go.
It's tough because, through confidentiality, we can't tell them all of the cases that we've seen. We can just sort of, for them, share our sense. Like you were saying, it's very, very difficult to put that into words sometimes.
Dizon: I think that brings up this notion that I've been aware of, that it is a longitudinal experience of practice. It always comes down to, I remember that one patient. Right?
Lewis: Yes.
Dizon: That is literally the guidance. On the other side, I don't appreciate it when a patient says, "I won't do this because my sister or my friend did that, and this happened to her."
Lewis: Yes.
Dizon: That's just not a way to make decisions. Then when we are dealing with uncertainty, it's always like, well, I do remember that one person and it didn't go well, so I really don't think you should do that.
Lewis: Right. It's funny; we talk so much about exceptional responders. I think you and I hold in our hearts the people for whom it just went exceptionally badly. René Leriche said that every surgeon carries in their heart a small cemetery where they go from time to time to pray. With our surgical colleagues, morbidity or mortality is literally one of their formal conferences. What I find in oncology is that we tend not to process that so much through rigorous peer review. We just kind of hold it inside ourselves.
Dizon: Yes.
Lewis: I'll be honest: I've had moments of profound doubt, where, like you're saying, it's irrational. I've been teaching my son about statistics. I was like, "Hey, if I flip a coin nine times and it lands heads nine times in a row, what are the odds it's going to land heads with that tenth flip?" He's smart enough. He was like, "Well, it's still 50/50, Dad."
If you've had four poor outcomes in a row, you really do start to wonder about your own acumen and start to question your own judgment. You get into some very dangerous territory where you can undercut yourself. Again, that's just why you and I are talking. I don't think we admit that enough.
Dizon: No. There is no forum for us to do that. If you had that one patient who died of adjuvant therapy, it's easy enough to say, I'll deal with this later because I have five other people to treat, or I won't return that phone call from the family because I have these other things to do. They do start to weigh on you.
Lewis: They do.
Dizon: Once you experience those outcomes that were hugely unexpected, that doubt is probably one of the biggest reasons we burn out.
Lewis: It's so uncanny to me that you bring that up as an example, the adjuvant therapy example. When I was in fellowship, I think my first scarring experience was with a 40-year-old woman with breast cancer. The surgeon had told her, "We got it all." Famous last words.
I was counseling her on adjuvant chemotherapy and I was using a statistical program. There was about a 1% absolute benefit in terms of her survival to doing adjuvant chemotherapy. She did it. You can probably see where this is going.
Dizon: Yeah.
Lewis: She died at cycle one of neutropenic sepsis in spite of growth factor support. I remember thinking as a fellow, what have I done?
I obviously still carry that with me. One thing I've found helpful for processing grief — and we all do it differently — is, I really do try to go to my patients' funerals, largely because my father's oncologist came to his.
For me, it's a form of closure that lets me say to both myself and the surviving family, "You know what? I really did try my best. Of course, I'm devastated, as you are, about how it turned out." That's one way I've gotten past it. Everybody I know handles it differently.
Dizon: That is interesting. In this topic, it always comes down to, how do you handle grief? How do you handle when the people you've treated die? I think I've learned to create a barrier at that point and not cross it. That barrier is the funeral. I don't go to the funeral.
Lewis: I've heard exactly that from my colleagues.
Dizon: I find it devastating emotionally. It's not because I failed. The funerals I went to before I decided I couldn't do this anymore, they just broke my heart. It was the magnitude of the loss, and just experiencing that magnitude. Often, it was a magnitude you would never be aware of as an oncologist. You were never in the community that embraced this person. You never know what kind of love surrounded them and you never knew about the extended families. You may have seen the children, but you may not have seen the siblings. The magnitude was just overwhelming.
Lewis: I'll just say you're right. At those services, my inner critic sometimes is very loud in my head. It says something like, Mark, if you'd done your job right, none of these people would be here right now. I'm learning in time to silence that voice. That's, again, one of the things that keeps me up at night.
Dizon: Yes.
Lewis: Don, thank you so much for your candor. You and I have been friends for a long time. I really admire your humanism. We're here at a conference that focuses on science, but I feel like if we don't address these issues, then you're right — this is a huge scourge in our profession in regard to burnout and even — let's be honest — physician suicide. We suffer in silence. I'm glad that we were able to talk today.
Dizon: It's always a pleasure to talk to you. I always learn as much from you as I take away from our conversations in general.
Lewis: Right back at you, my friend. Thank you. Thank you so much.
Thank you for joining us. This is Mark Lewis, speaking from the 2024 ASCO Annual Meeting in Chicago for Medscape.
COMMENTARY
Making Tough Decisions: A Candid Discussion Between Oncs
Don S. Dizon, MD; Mark A. Lewis, MD
DISCLOSURES
| June 13, 2024This transcript has been edited for clarity.
Mark A. Lewis, MD: Hello. I'm Dr Mark Lewis, director of gastrointestinal oncology at Intermountain Healthcare in Utah. Joining me today is Dr Don Dizon, head of community outreach and engagement at the Legorreta Cancer Center, and director of medical oncology at Rhode Island Hospital. We are speaking at the 2024 ASCO Annual Meeting in Chicago, and we'd like to address an important question many doctors are familiar with: What keeps you up at night?
Don, I know you and I are both addicted to social media. We're not talking about our smartphones and the light they emit right in front of our faces as we're trying to have our head hit the pillow, but on a deeper, more philosophical level. I think our field carries a large amount of emotional weight. Open-ended question, but what is it, off the top of your head, that keeps you up at night?
Don S. Dizon, MD: It's poignant, and I think it's a very common scenario that I've run into recently that illustrates what we as oncologists have to grapple with. Oftentimes, the question we all have is, is it better to do nothing or do we need to do something?
Lewis: Yes.
Dizon: It can play out with the 92-year-old grandmother presenting with a treatable cancer who's just incredibly sick. The question is, do you go by what the literature is telling you, which is someone who may be nearing the end of her life through natural causes? Do you just let her go? Or do you intervene with something that's treatable but not likely to kill her either?
Lewis: Right.
Dizon: Or it could be the young mom who is terminal at diagnosis, and you know in your heart that nothing you do is going to help her. To admit that to a family, and even to her, is often very painful. I don't think we, as oncologists, give ourselves a space to acknowledge that, so we make emotive decisions.
Lewis: Yes.
Dizon: It's the adage of, you're damned if you do and you're damned if you don't, so you might as well try to do something. I am often reminded of where the literature is about treatment being a double-edged sword.
Lewis: I don't know about you, but I had formal ethics education in medical school. One of the exercises they put us through was the trolley problem, which goes far beyond medicine. We are standing by the track with a lever in our hand, and if we do nothing, we know that the disease is going to kill our patient. If we intervene, it's almost like we're violating the first rule of medical ethics, which is, first, do no harm.
When we pull that lever of chemotherapy, you and I both know all too well that we can inflict toxicity, and on some level, that just feels wrong. As a physician, and certainly as an oncologist, we come up against that all the time.
I'll tell you what keeps me up: I hate to overpromise and underdeliver. There are a couple different levels. First, you and I are here at ASCO, so I'm going to leave this meeting, I think, filled with novel findings I can tell my patients about.
My first concern is, can I actually execute? Can I actually give them these new treatments we're hearing about? We still have problems with drug shortages of backbone agents. I'm sure in your field, especially, to not have access to something like cisplatin is just mind-boggling. Can I really, in good conscience, tell them, hey, there's this new treatment and I can give it to you. That's one area.
There's also the haziness of informed consent. As part of respecting autonomy, we're supposed to sit down and tell people the risks and benefits. I don't know about you, but when I start thinking about the list of everything that can go wrong, it's like commercials for drugs where there's that kind of breathless audio underneath and it tells you all the adverse events.
I often feel like I'm scaring someone off if I just read that entire litany. On the other hand, am I being intellectually dishonest if I don't tell them all the potential risks? Those are my initial thoughts about what keeps me up at night.
Dizon: It's such a relevant thing just to take the issue of consent. You're right. Everything we do— we have nothing in our armamentarium that is not associated with risk, and some of these are very significant risks. I think we, as oncologists, want to guide our patients toward a treatment that we think is going to balance the risks and the benefits in a way that there are more benefits, if you just trust me.
The thing that always brings it home is when you overemphasize the benefits and you say, sure, there are risks, but they're manageable. Then someone comes in with something that's extremely serious. Then you have to — or at least I do — wonder whether I did something right at that point. I think that whole language of "did you do this right or did you do this wrong" — it would be great if our field had so much certainty.
We have to acknowledge, in so many things, that we are living in and treating in a very uncertain way. This balance of what you know and what you don't… I have a level where I'm comfortable, but then there's a level where I'm absolutely not comfortable. I think that makes it very difficult.
Lewis: Well said. I also think, and I'm sure you think about this too, that the risk is both short and long term.
Dizon: Yes.
Lewis: There was a fantastic talk yesterday at ASCO Voices by Phuong Gallagher, a rectal cancer survivor. She really made a very moving testimony about how, with the initial rush of diagnosis and when her doctors were presenting the treatment plan, like you just said, everything was, "if you don't do this, you're going to die of your cancer." Of course you're going to accept even extremely high risk as presented to you.
She said, now that the dust has settled and she's in survivorship, she's realizing all of these irreversible toxicities from her treatment that she didn't even fully grasp in the moment. You and I both give platinum agents. As a GI oncologist, the drug that actually weighs on me the most is oxaliplatin.
Dizon: Yes.
Lewis: Especially using it in the adjuvant setting. I think that's a whole other realm of balancing risk and benefit. Giving chemotherapy to people who don't actually have active cancer is such a hard sell, or it should be. When I first heard about it in fellowship, I was like, wait; what? I'm going to give people chemotherapy without proof that they actually need it? That's something I still wrestle with now.
Dizon: I think the benefits of our treatments…especially when you tell someone, hey, your surgery was curative and you don't have any cancer, but we're still going to give you some chemotherapy because there might be those microscopic cells walking around in your body and we want to target them. I'm always like, does it, though? I mean, how does bathing a traveling cell in chemo kill it? Does it really do that?
There are things that almost defy logic in so much of what we do. Again, it's about living in this uncertainty. I was just recalling at an LGBTQ event, there was this person who presented their story: transgender, diagnosed with breast cancer while on gender-affirming hormone therapy. Breaks the treatment, goes through the surgery, goes through chemo. Then just asks a simple question: When can I restart my therapy?
It's such an uncomfortable question for oncologists. From our perspective, for better or for worse, hormones are bad when it comes to cancer. Taking hormones is bad, even though the data to back that up don't exist. It's almost this guttural sense. Instead of saying, "I think your cancer might recur if you take this; I don't know why I think that," and acknowledging to oneself that I don't know the answer.
Often, what people are saying is like, "I don't know. I think if you do it, it's a bad thing. I don't know why I feel that way," and that's it. That is the play that we're talking about. It's like you want someone to live after cancer, but you want them to live well. It's not that hard to practice. It's what we do all the time.
It is an issue when you do get these visceral senses of "what I think you should do," and you're just seeing it through the lens of an oncologist, rather than this entire person's identity; you're not giving that any weight at all. Having done that in the past myself, it's an uncomfortable thing to do something wrong.
Lewis: Exactly right. You even started off with your examples. I noticed that you weren't focused necessarily on the tumor type. You were focused on the person, their age, and their demography. To me, this all fits into the larger dialogue about shared decision-making.
Dizon: Yes.
Lewis: I think paternalism was predicated on the notion that you and I walk in wearing a white coat and project omniscience. With that sort of confidence, the patient would just agree to whatever we said. To me, with shared decision-making, it's more about being honest about the things that you and I don't know.
I sometimes feel a little bit like a weather forecaster. When I was growing up in Britain, there was a meteorologist who was famously pilloried in the press for getting the forecast wrong. When he was defending himself, his ultimate sort of statement was, "Well, what do you want me to say, that it's going to be warm and dry but with cooler and rainier spells?" He's like, that's the only way I can tell you the forecast, honestly.
Somewhere between paternalism and what I call à la carte oncology, where you and I just give the menu to the patient with zero guidance, we have to meet somewhere in the middle. I think some of that comes with admitting our uncertainty. I think it also comes with admitting that we're human beings.
Dizon: Yes.
Lewis: As such, you and I are shaped by our experiences. These days, our patients can come in and they can be extremely well read on clinical studies. What they don't have, respectfully, is this gestalt that you and I formed the hard way through years and years of training and practice to, like you were saying, get this guttural sense of how things are going to go.
It's tough because, through confidentiality, we can't tell them all of the cases that we've seen. We can just sort of, for them, share our sense. Like you were saying, it's very, very difficult to put that into words sometimes.
Dizon: I think that brings up this notion that I've been aware of, that it is a longitudinal experience of practice. It always comes down to, I remember that one patient. Right?
Lewis: Yes.
Dizon: That is literally the guidance. On the other side, I don't appreciate it when a patient says, "I won't do this because my sister or my friend did that, and this happened to her."
Lewis: Yes.
Dizon: That's just not a way to make decisions. Then when we are dealing with uncertainty, it's always like, well, I do remember that one person and it didn't go well, so I really don't think you should do that.
Lewis: Right. It's funny; we talk so much about exceptional responders. I think you and I hold in our hearts the people for whom it just went exceptionally badly. René Leriche said that every surgeon carries in their heart a small cemetery where they go from time to time to pray. With our surgical colleagues, morbidity or mortality is literally one of their formal conferences. What I find in oncology is that we tend not to process that so much through rigorous peer review. We just kind of hold it inside ourselves.
Dizon: Yes.
Lewis: I'll be honest: I've had moments of profound doubt, where, like you're saying, it's irrational. I've been teaching my son about statistics. I was like, "Hey, if I flip a coin nine times and it lands heads nine times in a row, what are the odds it's going to land heads with that tenth flip?" He's smart enough. He was like, "Well, it's still 50/50, Dad."
If you've had four poor outcomes in a row, you really do start to wonder about your own acumen and start to question your own judgment. You get into some very dangerous territory where you can undercut yourself. Again, that's just why you and I are talking. I don't think we admit that enough.
Dizon: No. There is no forum for us to do that. If you had that one patient who died of adjuvant therapy, it's easy enough to say, I'll deal with this later because I have five other people to treat, or I won't return that phone call from the family because I have these other things to do. They do start to weigh on you.
Lewis: They do.
Dizon: Once you experience those outcomes that were hugely unexpected, that doubt is probably one of the biggest reasons we burn out.
Lewis: It's so uncanny to me that you bring that up as an example, the adjuvant therapy example. When I was in fellowship, I think my first scarring experience was with a 40-year-old woman with breast cancer. The surgeon had told her, "We got it all." Famous last words.
I was counseling her on adjuvant chemotherapy and I was using a statistical program. There was about a 1% absolute benefit in terms of her survival to doing adjuvant chemotherapy. She did it. You can probably see where this is going.
Dizon: Yeah.
Lewis: She died at cycle one of neutropenic sepsis in spite of growth factor support. I remember thinking as a fellow, what have I done?
I obviously still carry that with me. One thing I've found helpful for processing grief — and we all do it differently — is, I really do try to go to my patients' funerals, largely because my father's oncologist came to his.
For me, it's a form of closure that lets me say to both myself and the surviving family, "You know what? I really did try my best. Of course, I'm devastated, as you are, about how it turned out." That's one way I've gotten past it. Everybody I know handles it differently.
Dizon: That is interesting. In this topic, it always comes down to, how do you handle grief? How do you handle when the people you've treated die? I think I've learned to create a barrier at that point and not cross it. That barrier is the funeral. I don't go to the funeral.
Lewis: I've heard exactly that from my colleagues.
Dizon: I find it devastating emotionally. It's not because I failed. The funerals I went to before I decided I couldn't do this anymore, they just broke my heart. It was the magnitude of the loss, and just experiencing that magnitude. Often, it was a magnitude you would never be aware of as an oncologist. You were never in the community that embraced this person. You never know what kind of love surrounded them and you never knew about the extended families. You may have seen the children, but you may not have seen the siblings. The magnitude was just overwhelming.
Lewis: I'll just say you're right. At those services, my inner critic sometimes is very loud in my head. It says something like, Mark, if you'd done your job right, none of these people would be here right now. I'm learning in time to silence that voice. That's, again, one of the things that keeps me up at night.
Dizon: Yes.
Lewis: Don, thank you so much for your candor. You and I have been friends for a long time. I really admire your humanism. We're here at a conference that focuses on science, but I feel like if we don't address these issues, then you're right — this is a huge scourge in our profession in regard to burnout and even — let's be honest — physician suicide. We suffer in silence. I'm glad that we were able to talk today.
Dizon: It's always a pleasure to talk to you. I always learn as much from you as I take away from our conversations in general.
Lewis: Right back at you, my friend. Thank you. Thank you so much.
Thank you for joining us. This is Mark Lewis, speaking from the 2024 ASCO Annual Meeting in Chicago for Medscape.
Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
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