Patient Perspective on Risk vs QOL: Interview with Zach David
[00:09:24] So what we did is we found a patient. I happened to be walking around a golf course with him. He wanted to share his story of his decision making, where he actually decided not to do it—to take additional treatment, risk a higher risk of relapse, in order to keep his taste, to keep his saliva, and to keep his quality of life.

So, let’s hear from him now.

 Just a few days ago, Zach David, who, as we were walking and talking and comparing life stories on a golf course, was telling me about his recent experience with his own cancer, head and neck cancer with radiation and chemo.

And what he told me was a fascinating story. So, I want Zach to do a brief introduction of himself and really tell us about the process and the decision making. And in particular, this one decision towards the end of his treatment, that was a tradeoff between quality of life and maybe survival. So, Zach, thank you on such short notice for being willing to join us, but take it away Give us a little blurb on who you are and what you've been through and maybe a little bit more about that decision

Zach David: Sure, Dr. Marshall. Thank you very much for the opportunity to help in any way that I can. Zach David. I was diagnosed with squamous cell cancer in my neck when I was 48 years old. Three children, obviously a big, big shock to us. Otherwise, I seemed very healthy. And then, you know, the decision trees that you talked about, you know, which process. I started off with a surgical removal of the tumor in my tonsil. And then they did a radical, um, where they took out, I forget the name of it Dr. Marshall,

John Marshall, MD: Radical neck dissection, I think they call it.

Zach David: Yeah, that's right.

They took out all my lymph nodes where they thought I'd gone on the side of my neck. I had to decide whether to get a feeding tube before, we went through this process because the radiation was going to impact my swallowing.

We ended up doing that. Seven weeks of radiation and three courses of cisplatin, which was a, you know, an all day event. of hydration, cisplatin, hydration. And by the end of my second cisplatin, I think it was about week five and a half, six of the radiation, I was fully dependent on the feeding tube, was being admitted into the emergency room because the cisplatin was wreaking so much havoc. No taste. High fever. And I went to Dr. Deekin, who was my oncologist. And I said, do I have to take this last dose of cisplatin? He said, well, you don't have to. And actually, a lot of people don't get to that last dose. I said, what are my percentages of survival? He said, your survival rate goes from 96 percent to about 90%.

My next question was my quality of life will have a chance of more saliva. Well, I have a chance to regain more taste and all the side effects that go with that chemo, and we decided after he told me that my chances were 90 percent versus 96 percent to not go with that. Today. I, you know, I do again, taste a good wine, taste a cheeseburger versus, uh, no cheese, et cetera, et cetera.

John Marshall, MD: that's a really great story and very helpful to our discussion today. So, thank you for sharing. But when you think back on that, obviously you're in good shape, right? There's no evidence of the cancer returning. Do you sometimes have sort of chills or what goes through your mind about that 6 percent that you were sort of willing to give up, for the tradeoffs that you mentioned.

Zach David: The biggest thing that I think about was that I had advocates. And I asked the question. And you're faced with so many different questions through this process without advocates and lots of people to speak to and ask about the decision points really, you won't know until you ask or are faced with these decisions. Obviously, you know, everybody's a little bit different, and everybody has a little different decision tree that they need to make.

John Marshall, MD: If you hadn't asked Dr. Deeken about that, you would have gotten that last dose, right? He wasn't going to come forward. It's not natural. I'm not picking on John. I know him very well, but we don't naturally come forward and say, do you want this trade off from the patient?

Zach David: Yeah. I mean, this was, this treatment was recommended, by lots of doctors, you know, nationally, worldwide. So, this was the prescribed treatment for my particular cancer.

John Marshall, MD: Maybe one last thing, because you, you know, a lot of docs, a lot of oncologists around the country and really around the world are watching this right now. So, what would you tell us as a patient? You know, what advice would you give us about communicating these kinds of issues to patients, these kinds of tradeoffs to our patients who may be not quite as good a self-advocate as you were?

Zach David: That's a really hard question. But one thing that my doctor, Dr. Deekin did, he, he took a lot of time with me and just taking the time to slow down in your decision-making process and educate, which not everybody has that luxury. and talk to people, I think that's, that would be my, my number one thing.

John Marshall, MD: I love it. I love it. Zach, David, thank you so much for joining us as we discuss this really tricky subject of these tradeoffs, decision making, shared decision making to optimize patient outcomes.

Zach, thanks a lot.

Zach David: Thank you for having me, doctor.

John Marshall, MD: Zach certainly has an interesting story where he made the decision to not do a dose of cisplatin in order to try and optimize his quality of life, even though he knew that there was about 6 percent delta. Just like our women in our breast cancer study had of having a relapse. He made that decision and so far he is happy with it.

Talking Truth with Patients: Interview with Mark Lewis, MD
[00:15:42] But what I think we need to do is drill down with one of the world's experts on decision-making. And so right now we're going to cut to an interview with Dr. Mark Lewis

We are very, very lucky today to be joined by Dr. Mark Lewis. He is the Director of GI Oncology at Intermountain Healthcare in Murray, Utah, which is, I'm assuming, a place somewhere in Utah. He does a lot more out there, but he's really one of the key thought leaders in the world of decision making and oncology and he comes at it from a couple of very important angles, both sides of the exam room, if you will. And it really takes that perspective to, I think, make us all better at what we do. And so with that, let me welcome Dr. Mark Lewis, and we're going to drill down on this concept of decision-making.

So, Mark, thank you so much for joining us and maybe just open this up a bit. What's your take on how we're communicating with patients? These complex decisions, these complex pro and cons for adding drugs, length of therapy, toxicity versus benefit. Where are we with that in your head?

Mark Lewis, MD: Yeah. Thank you so much, John, for having me. And this is a topic that's near and dear to my heart, both in professional practice. And as we might discuss a little bit, even in how I've made decisions about my own care as a patient. So, I'll start by using an analogy. I love figurative language. And one of the things we're talking about here is how to communicate with patients. So, one of my tools is analogies. So, I think a pendulum has been swinging where on one extreme we have sort of the old paradigm of paternalism. You or I would walk into a room with a white coat on and we would sort of try to project confidence. I think sometimes that maybe became almost kind of overbearing or imposing. And, you know, the, you know, idea there was that you and I have done this long enough that we know what we're doing, and we basically just prescribed to the patient what they were going to do.

And then I think the pendulum has swung potentially a little bit too far all the way across the other pole, which I call a la carte oncology. Which is the patient comes in to consult with you or me, and we basically give them a menu. And we say, would you like option A, B, or C? And I think the problem with that, while it does respect autonomy, to be very honest with you, it kind of abdicates our responsibility. Again, there's a reason people come to us. And I think somewhere between, you know, sort of, uh, bravado and, you know, complete abdication, I think there's a place where the patient wants to know our opinion, or our recommendations.

So, what I do is, I do like to present options, but I also feel like I'm not doing my due diligence for any given patient if I don't tell them at the end of the visit, Hey, listen, this is, this is what I'm going to recommend that you do. One tool I found really helpful is sort of trying to take the patient's pulse on an individual level as to their, not just their scientific literacy, and I don't mean that in a condescending way. You and I both know how easily we lapse into jargon and the alphabet soup of oncology. But even how they view risk, because I think a lot of what you and I do actually is we're trying to mitigate risk for people. And what I've learned over the years is just percentages, might not, especially if we just say them verbally, might not have the same impact as, again, trying to figure out, you know, what do numbers mean to a given person, or do they prefer visuals? And it's interesting, John, we're all products of our training. I trained; I did my fellowship at the Mayo Clinic. At the time I was training, there was a huge emphasis, as you might imagine, on how to counsel patients on adjuvant therapy. And You know, the two diseases that I think made the most impact on me, were breast cancer, and colon cancer. Now, breast cancer was interesting at a time, there was a software tool available, not just at Mayo, but elsewhere called Adjuvant! Online. You may be familiar with it. And it was beautiful, especially for a fellow, because you could essentially sort of plug and play with a given patient's data and you could show them in, in visual format, the added benefit that they would get from say endocrine therapy. And I know you're talking about, about abemaciclib which is, you know, a little bit different. But then, endocrine therapy plus chemo, like if you maximize your odds of risk reduction. And what was it worth? And I guess what struck me, John, was with those patients I was counseling, and again, it was at the very sort of outset of my oncology career, there were some patients who would incur literally any toxicity that you consented them for. If it resulted even theoretically in a 1 percent greater chance of being alive at five years.

And so I had that perspective from my breast cancer population, and then I developed actually a completely different perspective from treating patients with colon cancer. So, you know, again, I trained under some really wonderful GI oncologists, and the first day of my entire fellowship, one of them who was a true expert in colon cancer said to me, Mark, if you do nothing else as a practicing oncologist, whether you're going to GI or you're doing general practice, I want you to respect oxaliplatin, and I know that you know why, why he said that, and I've certainly learned it over the years.

So, I think one of the great advances of the last several years in our field, John, meaning GI oncology, was the IDEA trial. I don't know if we'll ever see its like again. Almost immediately as I was sitting at ASCO hearing about it, I think it was the plenary session in 2018, if memory serves, I remember thinking, I can use this the day I get back to clinic. The question is, how am I going to relay these findings to, my patients in a manner that really matters to them?

So again, without getting too much in the weeds of that study, but you know, you and I both know, and I'll just repeat for the audience here, really a fascinating trial. Again, really looking, I think, at the risk benefit of oxaliplatin in particular. So, Looking at this huge, internationally pooled group of about 12,000 patients with stage three colon cancer. Looking essentially at what was the tradeoff between three or six months of oxaliplatin containing chemo. And there was a lot more nuance to it, but what I came away with was, okay, the disease-free survival of three years, which was the primary endpoint, was actually roughly equivalent, depending on some risk stratification. And what I came away with was to tell patients, listen for perhaps a 1 percent greater chance of being alive at three years without your colon cancer coming back, you're incurring triple the risk of neuropathy that I probably am not going to be able to reverse for you. When I, when I put it that way, rather than just, you know, saying, oh, the three-year DFS was 74 versus 75%. And especially when I put it into visual form. So, I've started using pictograms rather than seeing percentages, actually printing out a picture of a hundred theoretical patients usually, and usually coloring them and showing, okay. It's almost like a spot the difference. I literally just spot the difference. So, on one side I had. like all the colors of the people if they did three months of oxide applied containing chemo. On the other graph, I had the one with six months, and I said, hey, spot the difference. And I had, you know, colored it pretty subtly, but if you looked carefully enough, you see that there was one extra person alive without their cancer having recurred at the three-year mark on the six months.

John Marshall, MD: But even with all of that, we still see our colleagues feeling like, you know, if the cancer came back, what if I had given you three more months, right? You the 1%. And so, this sort of regret avoidance pushes us, I think, to do more than and many of us. I mean, you take the time, which is valuable. You show in a clearer way. What it is to a patient, but a lot of us don't either have that skill set or have that level of knowledge on an individual decision. And so, they say, well, the NCCN guidelines say this, that's what I'm going to do. Right? Because you have to, it's the playbook. Right? And so, you know, we have to figure out a way for us as healthcare providers to increasingly be comfortable with the de-escalation concept and the traits that come with it.

Mark Lewis, MD: Yes. So, two things there, John. Thank you. And you're giving me so much credit and I'm really flattered. One is that the concept you are, important notion you raised about time. So, I agree with you. Uh, the greatest premium needs to be placed on the time that we have, especially face to face with our patients. I don't know how your practice works. I get an hour with new patients. I get 30 minutes with follow ups. And that first hour, as you know, there's like, you want to be present, but there's a to do list in your head, right? As the oncologist, you know, you have to do X, Y, Z. And by the end of the visit, you're supposed to, you know, lay out a treatment plan and explain the intent. And I think one of the things that's really tricky about say adjuvant therapy in particular is it's all risk reduction. There, there is no 100 percent foolproof guarantee that the cancer is not coming back. So, in regard to the time aspect, I am actually a huge fan of, and I'm just throwing this out as a practical tip for our colleagues. I really like One aspect of the EMR, okay. The electronic medical record is largely a billing and compliance tool. I’m well aware of that, but the part I like, and I think it's available in most systems now is the patient portal where I can exchange information with them, almost like a secure email. And it's nice because it's asynchronous. Like they can send me a message at midnight, and I can answer at five in the morning when I'm prepping the next day's clinic. So, we can have that almost immediate interaction. We can exchange information and I can send them resources. I can send them pictures or articles that I think are helpful, whatever issue they're grappling with, especially if it's this one.

And then the other thing I would tell you about, you know, decision or regret. It is a hundred percent real. There have been times in my career where the weight of decision regret has been so crushing that frankly, I've had a crisis of confidence and said, oh my gosh, like, am I really cut out to do this? And, you know, I think if any of us are honest with ourselves, like it's appropriate from time to time to sort of. step back and sort of survey your own acumen. But frankly, John, and this is gonna sound strange, to me that that one percent who recurred because I gave them three months versus six months, I see that a lot less often than the people I see who are struggling with, and I'll use the word very carefully, crippling grade three or above neuropathy because I gave them, quote, too much oxaliplatin.

I have had so many of those people in my career, especially pre 2018 and pre-IDEA, that all those things that my attendings told me the first day of fellowship, they have absolutely, you know, rung true in my head. I probably give, I have given thousands of patients oxaliplatin, and I've given a substantial number of them, and it weighs on my conscience considerably, neuropathy that I sometimes wonder, I sometimes lay awake at night thinking, gosh, did I need to do that? So, you're absolutely right. The decision to regret it. sort of very black and white is, okay, did I, did I affect mortality risk reduction? But the other decision to regret is, you know, first do no harm is a very difficult principle for an oncologist to follow. Like primum non nocere with the drugs that you and I are dispensing is very, very tricky.

John Marshall, MD: Now, those surgeons cut people open and let's give it, you know, they have to do that. Listen, we could go on all afternoon, but I want to really thank you for coming in and sharing your thoughts on this decision making and the complexity and some of the strategies that you've used to make it better for your patients.

I couldn't agree more with that. We need to be voting on what we would recommend to our patients more than we are today. And just put up with that decision regret because it's us that know more in many ways than our patients. So, Dr. Lewis, thank you so much for joining our program if we want to go quite so fancy as that.

And I can't wait to see you in person soon.

Mark Lewis, MD: Likewise, John. Thank you so much for having me.

John Marshall, MD: That's a wrap on episode four. I hope together we are working to find not just the news and oncology, but deeper than that. What's the reality of what we do? What's the truth in our world? And once we get the truth, we'll all be better at what we do.

See you next time.