Discontinuing Cancer Treatment

An oncologist discusses the conversation that takes place around discontinuing cancer treatment.

What is The Clinical Excellence Podcast?

The Clinical Excellent Podcast, sponsored by the Bucksbaum Institute for Clinical Excellence is a biweekly podcast hosted by Drs. Adam Cifu and Matthew Sorrentino. The podcast has three formats: discussions between doctors and patients, discussions with authors of research pertinent to improving clinical care and the doctor-patient relationship and discussions with physicians about challenges in the doctor-patient relationship or in the life of a physician.

[00:00:00] Dr. Cifu: On today's episode of The Clinical Excellence Podcast, we have Dr. Philip Hoffman talking about discontinuing cancer treatment.

[00:00:12] Dr. Hoffman: But if it comes to the point that only, you know, having ten people run in here and you know, do a resuscitative effort or put you on a breathing machine, I don't think that's a good plan, because I think that'll be prolonging a bad situation rather than getting you over a hump here.

[00:00:32] Dr. Cifu: We are back with another episode of The Clinical Excellence Podcast sponsored by the Bucksbaum Institute. During this podcast, we discuss, dissect, and promote clinical excellence. We review research pertinent to clinical excellence. We invite experts to discuss topics that often challenge the physician-patient relationship, and we host conversations between patients and doctors.

I'm Adam Cifu, and today I am joined by Dr. Philip Hoffman. Dr. Hoffman is a clinical professor at the University of Chicago. He's an expert in cancers of the lung, breast and esophagus, and the author of more than 80 journal articles. He is a master in the Academy of Distinguished Medical Educators and a senior faculty scholar in the Bucksbaum Institute for Clinical Excellence. Most importantly, he is a teacher worshipped by generations of students, residents, and fellows, he continues to spurn PowerPoint. Phil, thank you so much for taking the time to join me today.

[00:01:27] Dr. Hoffman: It's a pleasure to be here. Thank you.

[00:01:29] Dr. Cifu: So I've got some, I don't know, maybe difficult questions, maybe questions that are so, um, sort of natural to you that there'll be no problem. As an oncologist, I'm going to assume that most of your initial conversations with patients are about treatment options, and this is probably true whether the patient has just been diagnosed with a malignancy or has already been treated and is coming to you with a poor response to their treatment or recurrence. When do you begin discussing the option of actually not treating their disease?

[00:02:01] Dr. Hoffman: Well, it's a good question. There are sort of many points where this could come up, and it isn't necessarily only the situation where maybe, uh, we don't have very good options remaining and therefore we ought to think about discontinuing treatment.

Uh, if I may, I'll think about a different situation, which is, um, when we are first meeting a patient and discussing the treatment options, one of the key points is what is the goal of treatment and is the goal curative intent, or is the goal more palliative intent? Prolongation of life, improvement of symptoms and so on.

Uh, if the goal is cure, then I think we typically want to go all out and be aggressive and take on toxicities that we might not otherwise want to take on, but in many cases, of course, in medical oncology, the goal is more limited, and although we might be able to extend the patient's life by years, the ultimate expectation is that the patient will succumb to the problem.

And so one of the key first questions is, what is that goal? And sometimes when the goal is, uh, palliative and if the disease is somewhat indolent in its behavior sometimes we'll actually de-palliate, if I can coin a term, the patient by starting treatment. And, uh, the way I tend to put it with patients is, "You know, I could start you on treatment now and I could probably make your scans look prettier in a few months, but I'm not sure we should do that because you're not having a lot of symptoms right now. We can't get rid of this problem altogether, and in my experience, you won't be any further behind the eight-ball or less likely to respond to treatment if we wait three months or six months and kind of see what the pace of disease is." And sometimes that three or six months can be extended into a year or two where, again, the patient has lots of disease, but they're functioning very well, and why should they take on the burden of side effects and risk of treatment, again, just to make the scan look better?

[00:04:35] Dr. Cifu: So you're not getting them concerned about progression-free survival and making sure that they're not progressing...

[00:04:41] Dr. Hoffman: Well, progression, I mean, progression is what ultimately will happen in situations like that, but sometimes it's so slow, and it is, I mean, it's a difficult decision sometimes for a patient to feel like, "Well, I've got this serious illness and I'm not being treated, you know, uh, is that, is that safe?" And, you know, I'll invite them to get another opinion and that sort of thing. I mean, in some ways one of the current frontiers of oncology treatment in general is the question of de-escalation, that we've been in the custom for decades of being very aggressive and maximally aggressive, but we're realizing that, you know, maybe people don't need to be treated quite as long as we've been doing, or maybe there are biomarkers we can discover that tell us that this patient could get along with a little less aggressive therapy or maybe a shorter course. Although that's not, you know, what we're talking about here.

[00:05:51] Dr. Cifu: Let me ask you, my progression-free survival comment was kind of a joke, but actually, I mean, I've had experiences with patients with say, you know, a labral tear in their shoulder, for instance, who's, you know, not a major league pitcher, you know, who's, I don't know, you know, 50-year-old man, who's doing fine, who has, you know, basically very mild symptoms only with real exertion and the patient sort of wants to have surgery because they know there's something wrong there. Right? Um, and I'm often in the position saying, "You know, you're doing fine and if you have surgery, you're setting yourself up for sort of three months of misery after this surgery." Do you have patients who, even though you are sort of confident that we're doing the right thing, you know, not actively treating them, um, but maybe imaging is getting worse, that patients are kind of driven by that to feel like I need more therapy?

[00:06:46] Dr. Hoffman: Um, you mean driven by the fact that oh, this scan's a little worse than the last one, so we really... Uh, yeah, sometimes.

[00:06:54] Dr. Cifu: Yeah.

[00:06:54] Dr. Hoffman: And sometimes they'll push and I won't refuse to treat...

[00:06:59] Dr. Cifu: Right.

[00:06:59] Dr. Hoffman: ...unless I think it's just absolutely the wrong thing to do, but knowing that eventually we're going to be starting treatment, I'm certainly willing to...

[00:07:09] Dr. Cifu: Right.

[00:07:10] Dr. Hoffman: ...you know, to move in, but I want them to understand what the goal is. Um, and sometimes I get the complete opposite sort of situation, which doesn't happen very often, but I mean, I recall a patient, young woman in her late forties I think, who had a recurrence of breast cancer and it was a brand of breast cancer that was likely to respond to a whole variety of treatments, and she had had no treatment whatsoever yet for recurrent breast cancer. And she was very upset, of course, by the news and she said, "You know, I just really don't want to go through treatment again. You know, just leave me alone." And in a situation like that, I'm almost not willing to allow them to make a decision to not have treatment. Of course, if that's the ultimate decision, but that's the sort of patient I would stand on my head and say, "No, you're going to be missing out on years of progress that have occurred with treatment. Why would you, you know... Let me, really, this next treatment is really likely to be very well-tolerated and not mess up your life too much. Let's at least give it a try."

[00:08:29] Dr. Cifu: Yeah. That's certainly a conversation I've become more comfortable with as I've gone on in my career, the like, "Yeah, it's your decision, but you would be making a mistake to make this decision." Right?

[00:08:40] Dr. Hoffman: Absolutely.

[00:08:41] Dr. Cifu: ...to be as clear as possible. So let me, um, kind of going back a little bit to the initial question, and this comes from some experiences I've had, that when you're treating somebody and let's say, you know, this is palliative therapy, you could certainly continue treatment, that would make sense, but there's also an argument to be made that, you know, maybe what we're offering, um, balancing quality of life and length of life is not really the right thing to be doing. Um, do you sort of, you know, need to throw in the phrase, you know, "Remember we can discontinue treatment at any time"? Is that kind of a reminder that needs to be spoken?

[00:09:23] Dr. Hoffman: Well, I'm certainly not afraid to say that...

[00:09:26] Dr. Cifu: Yeah.

[00:09:26] Dr. Hoffman: ...uh, or feel like, oh my goodness, the patient's going to think I'm giving up on him.

[00:09:30] Dr. Cifu: Yeah. Yeah.

[00:09:31] Dr. Hoffman: Patients commonly will ask me, "Well, what if I do nothing?" That's a very common question early on in our interactions and you know, sometimes I'll joke with them, "Well, you'll have a very short survival because your wife will kill you if you make that decision."

Uh, but I mean, I'll usually answer that honestly, and I say that, you know, well if you... You know, I'll give them some range of time that I think is likely to be if they choose not to have treatment, and that is a legitimate option. But, you know, as you've in indicated, that conversation usually comes up when things are somewhat more progressed.

[00:10:12] Dr. Cifu: Sure, sure.

[00:10:13] Dr. Hoffman: In that situation, I definitely don't like the notion of, well, you know, an algorithm, well, you know, step one is this regimen and step two is that regimen because I think that the patient's performance status and how well they've been tolerating treatment so far really has to figure into it. And I think that if I feel that a patient would probably do better and feel better if they're getting near the end by not having treatment, I'm not afraid to say that. And I will, in fact, encourage it because I'll often say a comment such as that "We may not have a lot of control at this point, how much time there is but we do have control over how that time is spent. And yes, I could give you another round of treatment, but I'm worried that in your current... You're weak. You're having, you know, it's hard for you to even get out of bed in the morning or, you know, get up and walk the dog or whatever. Uh, I'm just worried that I'm going to make you feel even more weak. And the likelihood of another course of treatment helping you is small. And maybe we'd be better off, you know, leaving you alone for a while." And I'm willing to, and sometimes the patient will say, will suggest, "How about if we take a little time off? Let me get a little bit stronger and then we'll see about that."

[00:11:51] Dr. Cifu: Yeah.

[00:11:51] Dr. Hoffman: And I will agree to that, especially if it comports with what I am going to recommend but I'll also make sure that they don't have an undue expectation.

[00:12:05] Dr. Cifu: Yeah.

[00:12:05] Dr. Hoffman: You know, I'll tell 'em, "I'm not so sure you will make a big change, but you might, so let's give... Why don't we see how you do for a couple weeks?"

[00:12:14] Dr. Cifu: Right.

[00:12:14] Dr. Hoffman: And sometimes it's the residual toxicity of the last treatment that's got them down.

[00:12:20] Dr. Cifu: Yeah.

[00:12:20] Dr. Hoffman: And they might come back a little bit rallied.

[00:12:23] Dr. Cifu: It's interesting that that's an experience that I've had and maybe it's in patients we've shared where, you know, me as the primary care doctor often feels in an uncomfortable position because sometimes that feels like the patient is putting off the decision in a way and is kind of making a decision by putting off the decision the "I'm going to take some time to see if I get better to restart therapy." And you sort of know, you know, they're not going to get better because the only thing that's going to get them better is therapy but that's probably not in the cards. And you often feel like, well, this is part of their denial, that like, "I'm not ready to stop right now but I do want to give it some time and see what happens," with the understanding that, you know, what happens is probably not going to be good.

[00:13:14] Dr. Hoffman: Well, that's a very common scenario and it's one that is... It's a somewhat difficult one to navigate because when patients are failing, there's some resources that they can take advantage of, like hospice, uh, for example, that can make things a lot easier for them at home and for their families. And I try to make it clear that, well, they say, "Well, so you're giving up." Well, no, we're not giving up but we, the way I put it is, especially in these situations where they say, "Well, I'm hoping maybe in the next couple of weeks I'll pick up a little bit." I'll say, "Well, you know, in the meantime I think you're missing out on some services that could really make things a lot better. And if you rally, if things get better, you can stop hospice."

[00:14:06] Dr. Cifu: Right.

[00:14:06] Dr. Hoffman: And I've had plenty of... I've had some patients who've been kicked out of hospice, you know, because they rallied...

[00:14:12] Dr. Cifu: Yeah.

[00:14:12] Dr. Hoffman: ...and they... It wasn't appropriate.

[00:14:14] Dr. Cifu: Yeah.

[00:14:15] Dr. Hoffman: But why, why not take advantage of those things? And I mean, most hospice agencies have a palliative care piece that's sort of more traditional home care, but I don't know, my experience with the home palliative care process is not a very positive one, whereas my experience with palliative care in the hospital and you know, in the clinic as a partner in the care is a very positive experience.

[00:14:47] Dr. Cifu: Right.

[00:14:48] Dr. Hoffman: And I refer to my colleagues all the time for that, but the sort of hospice light, if you will, of home palliative care, I don't think really gives them a lot of support.

[00:15:00] Dr. Cifu: Yeah. Let me go to, you know, the next step here, um, you know, to the patient where you have really run out of options and you're sort of at the place where you need to inform the patient, "Look, there's nothing more that I can offer, you know, not for your care, but for your cancer treatment," right? Which must be, you know, incredibly difficult discussions, these are probably mostly people you've cared for—for a long time. What makes those conversations go well and what makes them go badly?

[00:15:35] Dr. Hoffman: Well, I think, um, one of the things that we should never say to somebody is there's nothing more we can do.

[00:15:42] Dr. Cifu: Right.

[00:15:43] Dr. Hoffman: I mean, and patients sometimes come to me for a second opinion or they'll report to me that another doctor said there's nothing more we could do. Now, I don't really know if that's what was said but I think it's something we should never say to a patient because there's always something we can do.

[00:16:02] Dr. Cifu: Yeah.

[00:16:02] Dr. Hoffman: And in fact, this is how I will often, uh, begin the discussion about DNR and...

[00:16:10] Dr. Cifu: Sure.

[00:16:10] Dr. Hoffman: ...you know, advanced directives to say, "Well, we're going to be aggressive at trying to get this pain under control. We're going to be aggressive at trying to get you out of bed and moving a little bit. Um, but if it comes to the point that only, you know, having ten people run in here and, you know, do a resuscitative effort or put you on a breathing machine, I don't think that's a good plan, because I think that'll be prolonging a bad situation rather than getting you over a hump here." And most of the time people agree with me, they don't always agree with me and that's a conversation that then has to be continued, but as I say, there's always something you can do. So I'm going to... "Let's see whether we can get this bleeding under control", you know, and so on but if I feel like somebody is more likely to be harmed by another round of chemotherapy, I'll say that. I'll say, "Look, I mean, I think it'd be a bad decision in your current state to try more treatment because I'm worried that I may shorten your life by causing complications that land you in the hospital." And I'm sure you're aware there are parameters now for, you know, what we consider to be good endings and they include, you know, not having chemotherapy in the last 30 days of life and not being in the ICU in the last... And these are not always predictable or preventable, but, you kind of know when somebody tells you that they can barely get out of bed in the morning, uh, that if you're going to give them more chemotherapy, that they're going to be the ones who get a complication that puts 'em in the hospital. And there are now data that tell us that people may live longer in hospice because you leave them alone.

And I also try to make it clear to them that being in hospice is not inconsistent with the idea of getting on a plane and flying to New York for the weekend...

[00:18:17] Dr. Cifu: Right.

[00:18:17] Dr. Hoffman: ...you know, because it just means that we're not going to be continuing chemotherapy right now or you know, that sort of a thing.

[00:18:26] Dr. Cifu: I think that's such a key point because so many people, I think when you mention palliative care, mention hospice, they equate it with no care and sort of at the point where I underline that sometimes actually, that's actually ratcheting up care, you know, that we are going to be doing more for you. We're going to be doing, you know, more aggressive therapy for some things, just not the things that we've been concentrating on in the past.

[00:18:55] Dr. Hoffman: That is, yeah, that's true. And to really take advantage of hospice, the person has to be in the program at least I think a couple of weeks.

[00:19:06] Dr. Cifu: Yeah.

[00:19:06] Dr. Hoffman: You know, the notion that you go into hospice and you die in 48 hours, I think that's unfortunate.

[00:19:15] Dr. Cifu: Right, I always think that that's our failing, you know, not always, but those people who, you know, you're setting up hospice in the hospital and they don't even make it out of the hospital to get to hospice. And, you know, often that's a struggle with communication and that's the best that it could have been, but it always feels like a missed opportunity when that happens.

[00:19:39] Dr. Hoffman: Yeah, I agree.

[00:19:40] Dr. Cifu: So maybe you already said this and I'm just trying to make you restate it in some way. Um, it sounds like when you're pulling back from active care of a cancer that you don't think you have much to offer the cancer care, it almost sounds like you're always transitioning into offering something instead.

[00:20:06] Dr. Hoffman: Well, yeah, I mean, you have to offer something. You know, and I think that, you know, to say that, "Well, you know, we're going to really focus now on managing your symptoms," and I'll often say again, you know, because patients know this already. It's the minority of patients who are right out there and not using any euphemisms and in fact, those patients are in some ways, the most, the most appealing to me, those conversations because there's, you know, it's just, well, "What is my death going to be like? And what are the... How am I going to feel?" And I seize those opportunities to say that, "You know, you are not likely to have some cataclysmic event. You are not likely to have severe pain." If they're not having pain now. You know, "It's likely to be that your liver will continue to fail, and you'll get progressively sleepy and things are likely to be very calm and peaceful," but again, I'll say, "I don't know how... You know, I think we're short on time and I think we need to decide how we're going to spend that time, and I don't think we should spend that time having you run back and forth to the hospital to get chemotherapy that's not likely to help and might make you feel worse," but you can't, I mean, I think almost never would I say, "Well, I think, you know, well, we're not going to do treatment and go back to your primary care doctor." I mean, that's not fair to the primary care doctor.

[00:21:42] Dr. Cifu: We're done here. For a last question, I've had very much the same experience where there are patients who, no matter how long you've taken care of them, you seem to never be able to have that very honest conversation about, you know, this is what's ahead, because the person never really seems like they want to hear it. And then you have those people who sometimes, you know, surprise me with how open and clear they are and how definitive they are in their questions and what they want to know. Do you think that that's just the person and their entire life's experience, or do you think there's something that you can do, you know, in your conversations with the patients over the last whatever months or years to make that conversation easier, that sort of open, honest conversation about the end?

[00:22:38] Dr. Hoffman: I don't think I know the answer to that. I think it may really be a function of sort of how they approach, uh, you know, difficult aspects of their lives and how they approach tough times. I guess my experience is that people that are, uh, more highly educated tend to be more willing to have the more open conversation, um, and, but it isn't always that way, I mean, uh, and you know, there's a lot of things written about how to have these conversations or what we should be doing about such situations and I, you know, I don't always feel comfortable about it myself.

So, for example, the idea, well, you know, you ought to start having conversations about advanced directives when you're first meeting the patient, and I don't like to do that.

[00:23:38] Dr. Cifu: Yeah.

[00:23:38] Dr. Hoffman: I mean, I just, you know, if I'm going to talk to them, "Well, this is the stage of your cancer and this is what the options are and, you know, so on and so forth. Oh, and let's talk about what your thoughts are for the end of, you know..." I just can't do that. Now, on the other hand, it's totally wrong not to have the conversation until ten minutes before they're about to be intubated. You know, you need to do it at the right time, but I have trouble sort of doing that right from the outset, but I think, just people sometimes, I don't know, I guess people that have been running businesses in their lives, for example, tend to be, want to... "Let's just get on with it. Tell me, you know, let me have it, doc."

[00:24:29] Dr. Cifu: I agree with you so much about the kind of advanced care planning conversations that those conversations without context almost always lead nowhere. You sort of get the, "Well, I want to be treated aggressively until it's not going to help me anymore," but once there is context and people sort of understand where they are in the process, what the disease is, what their symptoms are, then those tend to be very productive conversations and you have to hope that that opportunity comes up at a reasonable time.

[00:25:02] Dr. Hoffman: Right, and then I sometimes will hear from, you know, when I'm attending on service, I'll hear from the house staff about a patient I don't know at this point, and they say, "Well, you know, she wants everything done." And I'm thinking, well, I mean, I sort of get why somebody would say that, but people don't really know what everything is in that situation. And you know, people's expectations need to be tempered, but I mean, I think eventually people, most people are able to have some conversation and one of the things you can ask that is helpful sometimes is, you know, "What are your goals for the next few weeks? Or the next few months? What do you want to see happen?" And then, you know, you can sort of tailor it, I mean, sometimes it's, "I just don't want to be in any pain." Sometimes it's well, there's some big family event coming up that they want to, you know, be alive for and you have to sort of plan your treatment around that.

[00:26:03] Dr. Cifu: Yeah. Well, Phil, thank you very much for this conversation. This was very helpful and I think you threw out a lot of pearls, which were very helpful.

So thanks for joining us for this episode of The Clinical Excellence Podcast. We're sponsored by the Bucksbaum Institute for Clinical Excellence at the University of Chicago. Please feel free to reach out to us with your thoughts and ideas on the Bucksbaum Institute Twitter page.

The music for The Clinical Excellence Podcast is courtesy of Dr. Maylyn Martinez.