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Elizabeth B. Lamont, MD, MS, discusses complexities in prognostication in advanced cancer.
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Elizabeth B. Lamont, MD, MS, discusses complexities in prognostication in advanced cancer.
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>> This is Ed Livingston, Deputy Editor of Clinical Reviews and Education at JAMA. And I'm interviewing Elizabeth Lamont, who wrote a chapter entitled Complexities and Prognostication in Advanced Cancer in the JAMAevidence Care at the Close of Life. She wrote this along with Nick Christakis. Thank you for joining us, Dr. Lamont. Could you tell us about yourself? >> I'm a medical oncologist and health services researcher at the Mass General Hospital and Harvard Medical School. Dr. Christakis and I wrote this when we were both at the University of Chicago.
And it was while we were working together doing research on this topic that we were invited to write this review. >> Prognostication is a major problem when dealing with cancer patients. And physicians have a tendency to overestimate patient survival. Dr. Lamont, do you think that physicians are just overly optimistic regarding what they can do for patients in terms of palliation, or keeping them alive? Or do you think they give an overly optimistic prognosis to give patients the perception that they'll live longer than they actually do?
>> We do know that physicians do overestimate how long their patients have to live. We do you also know, though, that if really pushed by a patient or their family member, the physician would tell the patient or the family member that they had even longer to live than actually the physician thought in their own mind. >> Why do you think they do that? >> Others have shown that when physicians actually don't really know the patient -- So they don't have a relationship with them, if they're presented with the clinical information, that the prognostic estimates are far closer to reality.
So that implies, I think, that in their heart of hearts they want their patients to live longer than they do. People can understand the risk of getting cancer. Smokers can understand their risk of getting cancer. But if you ask them what their own individual risk is they always perceive it to be much lower than the rest of the population. >> So I'm a surgeon. I'm now a full-time editor. But I spent 20 years in practice, and seven years residency.
When I was a resident I worked with an oncology group that was unbelievably optimistic. And they had these patients that were just dreadfully ill from cancer, about ready to die. And they would tell the patients, you're going to do great. And the patients really responded to that, they liked that. And I thought it was horrid, 'cause I was young and inexperienced. And then I was much more conservative as an attending surgeon. And I'd tell patients the real prognosis. And it-- the response seemed to be that they didn't want to hear that.
And they felt that I was too negative. So how do you put that together? >> Well, it's tough. Because on the one hand it is important to, especially if someone's undergoing therapy for them not to be depressed and have decline in their performance status related to their psyche, right? But the same time, by giving people news that you know is false, they may forestall doing the things they need to do at the end-of-life, you know, like, putting a will together, letting their kids know that actually they're dying and it might be good time to visit now when they're able to be up and about versus giving impression to folks that actually their doctors think they have much longer to live.
And often people think they have years when, you know, in fact, it's months. Or even much shorter than that. So it's a thorny issue. And so I think a lot of times both patients and physicians avoid the question. >> So before we get into communicating that, what do you advise physicians to do to get a realistic sense of what a patient's prognosis is that they can communicate to them?
>> So there are some interesting algorithms that can be used to predict survival in patients with advanced cancer. And those tend to be focused on performance status, patient symptom burden, as well as sometimes some lab values. We know that when you see a white count that's, sort of, sky high in a solid tumor patient who otherwise does not appear infected, but whose disease is moving at an incredible pace-- sometimes we'll call it, like, an explosion of visceral disease.
You know, that's a very poor sign. High platelet counts can be a poor sign. High C-reactive protein and sedimentation rate. So some folks have come to integrate those into, like, prognostograms, which can be very helpful. I think performance status is something that we use a lot in oncology. And I don't know how familiar general readers are with it, but it's essentially a measure of how up and about people are with a couple of different standard metrics.
One is with the Karnofsky that 100 percent is, you know, people are robust and doing everything they normally do. And zero is they're no longer alive. >> Another factor in all this is the perspective. So I'm a surgeon, and I've been called many, many times on a patient's last days to take care of some intra-abdominal catastrophe that they're having on the way to dying. And what happens is the medical team whose taking care of this patient whose invested a tremendous amount of effort into their care is pushing and pushing and pushing and trying to do the very best they can, and giving as optimistic a picture as they can to the patient and their family.
And then something bad happens and they call us. And our perspective is just the opposite. We try to convince the patients and the family, or try to communicate to the patients and the family they have very little life left and that we should not be involved. And, you know, we don't want to do an operation when they're about ready to die. So I think that that may be a factor in all this, is what your orientation is, where you're coming from as a physician. >> That's right. Because we've been taking care of them for six weeks in the hospital.
And we know them so well. And they have such hopes. And they have small children. And, you know, everybody just wishes it were different. But frankly, when the surgeon comes by and says that, you know, the prognosis is so poor that this isn't indicated that's actually useful, I think, to everyone, the team and the patient. Because, you know, we certainly respect our surgical colleagues very much. And they are outsiders.
And they can be much more dispassionate in their evaluation of the patient. They don't have the emotional baggage of understanding the social situation and, sort of, what the patient's been through. I mean, part of this is it's not fair to be young and have cancer, right? I mean, that's just not fair. And there's got to be some way to make that right. And there's not. And so, you know, when the tenth consultant comes and says, this is not a surgical issue, this is not an infectious disease, you know, this is progressive malignancy, you hear that again and again and again, and then at least we can say to the patients and the families, you know, we've really exhausted every possible other explanation.
We've turned every stone over. And it really looks like it's progressive cancer. And the, what we need to talk about is where to go from here. >> So we discussed the fact that physicians have a tendency to overestimate prognosis, and give a more optimistic number than is realistic. That suggests that they don't really want to deliver bad news. A big part of your chapter, which I found very helpful, was suggestions you provided for how to approach this, how to approach the conversation, and what to say.
So what's your advice to a physician who has to deliver really bad news to a patient about their cancer prognosis? >> Well, I've been doing this now for probably 20 years. And what I have learned is that I'm not any more comfortable doing it than I was when I was a fellow. But I'm at least comfortable with being uncomfortable. And it sounds strange, but I think when you're a fellow and it's just eating you alive to have these conversations, and breaking your heart that really doesn't get better.
But it doesn't mean that you're wet behind the ears. So that I guess the first point is it's really awful. And it's always going to be awful. And you feel like there's less of you after you have these conversations. I mean, that's how taxing it is. It's tremendously taxing on patient and family, too. So I think that's one important point for trainees and other people who don't have to give bad prognoses very often what they should realize is that we all feel this way.
And it's not going to get better with age and experience. But the important things to do are really to prepare yourself with the numbers that you can find, the possible plans that you can offer the patient. Because one thing in oncology, and maybe in surgery as well, when you deliver bad news you don't want to then have nothing to offer. And that doesn't mean that we're going to offer chemotherapy.
But it does mean that we want to offer them some choices. And those might be things like pursuing a palliative approach through something like hospice care. It might mean pursuing symptom-guided care in the clinic, or with the help of visiting nurse. Or transfer to a nursing home where, you know, that could be delivered in a safe way based on what their family situation is.
So number one, it's important to be able to answer questions about how long you think the patient actually has to live. Now, giving a specific number is probably not the right thing to do. But talking about days to weeks versus weeks to months is a very safe thing to do. >> So let me ask you some technique questions. And this is based on some observations I've had as a clinician. One of the things that struck me about patients in this situation is that they oftentimes don't remember what you told them.
And you'll tell them something, like, the second and third time they'll say, you never told me that, Doc. And it could be really important information. I didn't quite get that until my wife had thyroid cancer. She had a very worrisome nodule. And she's a physician. She's an internist. Very smart. And went to the surgeon, and was told she had cancer.
And came home. And I asked her what did the surgeon say, what kind of operation do they want to do, how extensive? And she said, I don't remember. I said -- And I got really mad. I said, what do you mean you don't remember? These are important things. And she said, as soon as he said I had cancer I just tuned out. >> Yes.
>> And I've been on the other end of that many, many times. And when it happened to my wife I thought, oh my god, there's really something about this. So with that in mind, I gather you need to have this conversation with people several times. You need to, kind of, bring in the information slowly. So what technique do you use to account for the fact that they, sort of, as soon as you tell them the really bad news they blank? They just don't hear anything further that you say. >> So it, kind of, depends on how well you know them.
So if it's someone you know really well, I start hanging crepe when I'm first worried that someone has relapsed or progressed. And so, you know, maybe they come in, and they say, oh, you know, doctor, I'm feeling really tired. And the wife will say, oh, you know, and he's lost so much weight. And, you know, I'm coughing. So then what I'll say -- It was a head and neck cancer patient who we had treated with curative intent.
And it's, sort of, the two-year window, which is when if you've had head and neck cancer and you're going to relapse that's within 18 to 24 months. And so I might say, oh goodness, you know, and listen to their lungs, and get a temperature, get a pulse ox reading. And say, you know, I'm not sure what's going on, but clearly, you know, with your shortness of breath something's going on, and we need to figure out what it is.
And, you know, what are the possibilities? Well, it could be infection, like, a pneumonia. It could be that sometimes the heart when it's working hard can cause backup of fluid into the lungs. It could even possibly be that the cancer's come back. And we just don't know. And we won't know until we get more testing. So then it's on their differential, right?
I didn't start with the cancer. In fact, that's the last thing I mentioned. But it's on their radar screen now. And so then we'll have a plan that they'll have a scan done. Or, you know, if they're really sick, you know, they'll need to be admitted for maybe a thoracentesis. If they're not super sick, you know, the scan could be done as an outpatient. And then when we go over the results I'll, sort of, recap that, you know, gosh, you had come in on Thursday with this shortness of breath and we didn't know what was going on.
And, you know, we needed to figure out what it was so that we could treat it, because, you know, you're clearly very comfortable, and there's no reason for that. But to address it we need to know what's causing it. And then, you know, I can say, unfortunately it looks like the cancer is back. And then I can pull up the films, if that's something, you know, that they'd like to see. Or usually they'll have questions about why-- why do I think that.
And then I will have in my own mind prepared the possibilities of next steps. Because I think the worst thing someone can do is to give patients bad news without having a plan. >> So essentially what you do is you back into it, is what you're -- >> Yes. >> -- saying. You, sort of -- >> Yes. >> -- build up with let's take care of step one, step two, step three, step four is the bad news.
You gradually work into that. >> Yes. And that's possible only when you know a patient very well. In the past, this is very rare, but perhaps not at all for you given your area of clinical expertise, 99.9 percent of our patients have been diagnosed already before they see us. So they know they have cancer. And they usually know how extensive it is, although maybe not.
You know, maybe they've just had a biopsy, and what we're doing is figuring out how extensive it is. And then we can also, I can also still have that conversation that if it seems as though it's just, say lung cancer, in that one spot, you know, it's possible that it could be removed. And then we'd have to see if any lymph nodes were involved in the chest, which would help us understand what the next steps were.
You know, if it seems to have come out of the lung and gone to other spots, or other spots within the lung then the treatment would be different. It wouldn't be for cure, but it would be to help you to feel better, and to decrease symptoms, and prevent symptoms from starting. But, very rarely people will come and believe that they have a curable illness because outside scans were misread or misinterpreted.
And to give a total stranger terrible news that they have metastatic disease is, I would say, like, the worst experience clinically, you know, I've ever had. >> Yeah. For the younger listeners, I mean, one lesson that I learned early in my career was to never have one of these prognostic conversations until you have a confirmed diagnosis in your hands. And patients will always push for some sort of judgment or advice when you don't really know all the facts.
And it's really bad to say anything until you know for sure they've got cancer, and you know for sure what it is, and where it is. So I think it's always very helpful to wait until you have all the information before delivering this sort of news. >> Oh, absolutely, yes. >> Given the fact that they have a hard time really absorbing what you tell them, do you deliver this information over several clinic visits? Do you set that up prospectively? You're an oncologist, so you're going to be seeing them with some periodicity.
But do you deliberately plan to deliver the information repeatedly over a period of time or -- >> You know, I really don't. It's not been my experience that people have said, you never told me that. You know, one way you know that people have heard things -- And this sounds awful, but I think it's really true, is that there's a response with respect to their affect, or someone's affect. So someone in the room will start crying.
And then maybe that wife will say to the daughter, why are you crying. And then the daughter will explain why. And then the wife will say, you mean he only has-- he's not going to be cured? You know, so it creates a dynamic that's actually useful. And so that's why I think when there are many people in the room that can be very helpful, 'cause at least one person's going to hear it. And it might be a daughter-in-law.
It might be the son. And they know how their parents are. They know that their mom or dad tends to not hear the bad news, and just pushes it out. I mean, we all have our ways of coping. And kids definitely understand their parents' ways of coping. >> Let me break that down into a couple of questions. One is, so your advice to patients when they're going to come in for counseling about the extent of their disease and the prognosis is to have family members or friends present so that there are lots of sets of ears to hear things.
What do you do with the patient who says don't tell my family? They come in alone, and they say don't tell my family. >> Well, I don't. I mean, it's really up to them. Now I might say-- explore why that is if they don't want their family to know. And try to help them to understand that, you know, gosh, well, what if it was your wife would you want to know. And, but, you know, when push comes to shove, I need to respect their wish to not tell them.
Now the thing that we see a lot is actually in different cultures -- And this is a real problem, actually, that I think deserves a lot of study is the idea of families acting as interpreters for patients. And any visit you really need to have an interpreter, because you have no idea how the information's going to be filtered. And, you know, we all, for the most part, want to protect the people we love.
And so I can understand how information could be not communicated or communicated in a way such that it's not really what I said. And that's, kind of, a sidebar, but I think it's an overlooked issue that people need to think about. So don't use family members as interpreters. But more to the point of your question, it's their right. More commonly so though we see, you know, the family saying don't tell a patient, which is where the interpreter issue comes in.
And, I mean, at the Mass General, you know, we have so many interpreters, and yet for some languages there are so many dialects that it's tough. But, you know, fortunately this is an area where some of the health information technology has really come through for us. And, you know, we use a service that has a microphone and a speaker on wheels. And we dial in the type of interpreter, including the dialect.
And so we can get that very easily. But even some places in the Far East, there are some dialects that are so rare that that can be challenging even. In which case relying on the family is the only option. And I worry sometimes. >> Yeah, that's always, it's always, you know, 13 people in the room, and it's the nine-year-old that does the translating, that's when it's really worrisome, yeah.
>> Well, yeah, I would -- Actually, I remember in Chicago I had a situation like that where the surgeon had said, oh, we got everything. But you should see the oncologist. And reading the note was, there were positive margins, there were nodes, there were, you know, metastatic disease. And there's a 13-year-old boy sitting there doing his homework. And I said, no, I'm not doing that to this kid.
I said, can you come back and bring your dad. And he came-- they came back the next week, and the dad wasn't there. And we didn't have the exact type of interpreter, but there was a woman who worked in the hospital who spoke that language, and she agreed to do that, which it must've been horrible for her. But there way I was going to have that child relay to his mother that news.
>> We just published a paper in JAMA Oncology and summarized it in JAMA where they did a survey of patients. And they studied patients, and gave them news in different forms, either with an optimistic bend or a pessimistic bend. And the patients preferred the optimistic bend. >> Oh, I'm sure. >> Yeah, they just didn't want to hear -- It was, kind of, interesting that, kind of, validated this notion of physicians presenting this overly optimistic view of things that you were talking about earlier.
The other thing just to mention that I've learned over the years is as surgeons we come in at the worst possible time, somebody's about ready to die, and something really bad has happened. And it's a surgical problem, like, a bowel obstruction. And then they call us in and you, and it's, like, a Friday night or something, none of these people have ever seen you before, and you're delivering the death sentence. And you're going to give them a decision. Everybody's told you, oh, we'll call the surgeons, they're going to come look at you, and then you come and say no.
And it's horrible. So one technique I've learned is I sit with patient and their family, and ask them to tell me about the person. What they do. what were they like, what things did they like to do, did they not like to do, what was funny about them. And try to communicate to them that I'm trying to understand this patient as a person. 'Cause I'm about ready to make a pretty horrible decision to end that person's life. And so at least one thing I try to do is say, look I really care about this person as a person, it's not just that I don't want to do it, but it's not going to help.
>> You're humanizing yourself for the family so that they understand this isn't you being someone who just doesn't care and just doesn't want to do a procedure that's indicated or something. >> Yeah. Yeah. Exactly. That's exactly right. Anyway, it's just horrible. I was interested to hear you say that after 20 years you still struggle with it, 'cause I have been in this business, I still practice a little bit, for 30 years.
And I still, every time I hate it. And I oftentimes walk out of the room and just want to cry. It's just, it's horrible. You never get used to it. >> Or you just feel like there's less of your soul. >> Yeah. >> One thing that the surgeons do sometimes is they'll say that, you know, they'll review the films, and they'll communicate their recommendations to the primary team.
And I think that that's not unreasonable. Because I don't think it's reasonable to ask you to do what you have to do. I mean, I think it's a different story for the medical attending to say, you know, the surgeons came by and they thought that actually it would do more harm than good, which is often the case, right? That the surgery would hasten death. And that's, sort of, how I have MICU conversations sometimes as well, or chemo conversations.
Say, oh, if she could just get more chemo. And, you know, say that, listen, the chemo is going to make things worse, not better. And sometimes, you know, in a situation when you're talking about putting someone on ventilator and, who's aspirating, you know, you can say, actually that's going to make things worse, it's going to blow all that further into the lungs. >> Yeah. >> So that if people understand that they're a lot less likely to, you know, then lobby for it.
'Cause it's unfair to put you in that position. And what you can say is, you know, you can understand why the team and you would want to know if there was anything more that could be done. Particularly, you know, from a surgical end, and it's something you'll give great consideration to, but it's important for you to see the films and talk more to the team. >> Thank you, Dr. Lamont. You've been listening to Chapter 19, Complexities and Prognostication in Advanced Cancer from Care at the Close of Life.
This is Ed Livingston, Deputy Editor of Clinical Reviews and Education at JAMA with this JAMAevidence podcast. Listen to our entire library of podcasts at Jamaevidence.com. Or in the iTunes Store. Or at Stitcher.
Segment:0 .
>> This is Ed Livingston, Deputy Editor of Clinical Reviews and Education at JAMA. And I'm interviewing Elizabeth Lamont, who wrote a chapter entitled Complexities and Prognostication in Advanced Cancer in the JAMAevidence Care at the Close of Life. She wrote this along with Nick Christakis. Thank you for joining us, Dr. Lamont. Could you tell us about yourself? >> I'm a medical oncologist and health services researcher at the Mass General Hospital and Harvard Medical School. Dr. Christakis and I wrote this when we were both at the University of Chicago.
And it was while we were working together doing research on this topic that we were invited to write this review. >> Prognostication is a major problem when dealing with cancer patients. And physicians have a tendency to overestimate patient survival. Dr. Lamont, do you think that physicians are just overly optimistic regarding what they can do for patients in terms of palliation, or keeping them alive? Or do you think they give an overly optimistic prognosis to give patients the perception that they'll live longer than they actually do?
>> We do know that physicians do overestimate how long their patients have to live. We do you also know, though, that if really pushed by a patient or their family member, the physician would tell the patient or the family member that they had even longer to live than actually the physician thought in their own mind. >> Why do you think they do that? >> Others have shown that when physicians actually don't really know the patient -- So they don't have a relationship with them, if they're presented with the clinical information, that the prognostic estimates are far closer to reality.
So that implies, I think, that in their heart of hearts they want their patients to live longer than they do. People can understand the risk of getting cancer. Smokers can understand their risk of getting cancer. But if you ask them what their own individual risk is they always perceive it to be much lower than the rest of the population. >> So I'm a surgeon. I'm now a full-time editor. But I spent 20 years in practice, and seven years residency.
When I was a resident I worked with an oncology group that was unbelievably optimistic. And they had these patients that were just dreadfully ill from cancer, about ready to die. And they would tell the patients, you're going to do great. And the patients really responded to that, they liked that. And I thought it was horrid, 'cause I was young and inexperienced. And then I was much more conservative as an attending surgeon. And I'd tell patients the real prognosis. And it-- the response seemed to be that they didn't want to hear that.
And they felt that I was too negative. So how do you put that together? >> Well, it's tough. Because on the one hand it is important to, especially if someone's undergoing therapy for them not to be depressed and have decline in their performance status related to their psyche, right? But the same time, by giving people news that you know is false, they may forestall doing the things they need to do at the end-of-life, you know, like, putting a will together, letting their kids know that actually they're dying and it might be good time to visit now when they're able to be up and about versus giving impression to folks that actually their doctors think they have much longer to live.
And often people think they have years when, you know, in fact, it's months. Or even much shorter than that. So it's a thorny issue. And so I think a lot of times both patients and physicians avoid the question. >> So before we get into communicating that, what do you advise physicians to do to get a realistic sense of what a patient's prognosis is that they can communicate to them?
>> So there are some interesting algorithms that can be used to predict survival in patients with advanced cancer. And those tend to be focused on performance status, patient symptom burden, as well as sometimes some lab values. We know that when you see a white count that's, sort of, sky high in a solid tumor patient who otherwise does not appear infected, but whose disease is moving at an incredible pace-- sometimes we'll call it, like, an explosion of visceral disease.
You know, that's a very poor sign. High platelet counts can be a poor sign. High C-reactive protein and sedimentation rate. So some folks have come to integrate those into, like, prognostograms, which can be very helpful. I think performance status is something that we use a lot in oncology. And I don't know how familiar general readers are with it, but it's essentially a measure of how up and about people are with a couple of different standard metrics.
One is with the Karnofsky that 100 percent is, you know, people are robust and doing everything they normally do. And zero is they're no longer alive. >> Another factor in all this is the perspective. So I'm a surgeon, and I've been called many, many times on a patient's last days to take care of some intra-abdominal catastrophe that they're having on the way to dying. And what happens is the medical team whose taking care of this patient whose invested a tremendous amount of effort into their care is pushing and pushing and pushing and trying to do the very best they can, and giving as optimistic a picture as they can to the patient and their family.
And then something bad happens and they call us. And our perspective is just the opposite. We try to convince the patients and the family, or try to communicate to the patients and the family they have very little life left and that we should not be involved. And, you know, we don't want to do an operation when they're about ready to die. So I think that that may be a factor in all this, is what your orientation is, where you're coming from as a physician. >> That's right. Because we've been taking care of them for six weeks in the hospital.
And we know them so well. And they have such hopes. And they have small children. And, you know, everybody just wishes it were different. But frankly, when the surgeon comes by and says that, you know, the prognosis is so poor that this isn't indicated that's actually useful, I think, to everyone, the team and the patient. Because, you know, we certainly respect our surgical colleagues very much. And they are outsiders.
And they can be much more dispassionate in their evaluation of the patient. They don't have the emotional baggage of understanding the social situation and, sort of, what the patient's been through. I mean, part of this is it's not fair to be young and have cancer, right? I mean, that's just not fair. And there's got to be some way to make that right. And there's not. And so, you know, when the tenth consultant comes and says, this is not a surgical issue, this is not an infectious disease, you know, this is progressive malignancy, you hear that again and again and again, and then at least we can say to the patients and the families, you know, we've really exhausted every possible other explanation.
We've turned every stone over. And it really looks like it's progressive cancer. And the, what we need to talk about is where to go from here. >> So we discussed the fact that physicians have a tendency to overestimate prognosis, and give a more optimistic number than is realistic. That suggests that they don't really want to deliver bad news. A big part of your chapter, which I found very helpful, was suggestions you provided for how to approach this, how to approach the conversation, and what to say.
So what's your advice to a physician who has to deliver really bad news to a patient about their cancer prognosis? >> Well, I've been doing this now for probably 20 years. And what I have learned is that I'm not any more comfortable doing it than I was when I was a fellow. But I'm at least comfortable with being uncomfortable. And it sounds strange, but I think when you're a fellow and it's just eating you alive to have these conversations, and breaking your heart that really doesn't get better.
But it doesn't mean that you're wet behind the ears. So that I guess the first point is it's really awful. And it's always going to be awful. And you feel like there's less of you after you have these conversations. I mean, that's how taxing it is. It's tremendously taxing on patient and family, too. So I think that's one important point for trainees and other people who don't have to give bad prognoses very often what they should realize is that we all feel this way.
And it's not going to get better with age and experience. But the important things to do are really to prepare yourself with the numbers that you can find, the possible plans that you can offer the patient. Because one thing in oncology, and maybe in surgery as well, when you deliver bad news you don't want to then have nothing to offer. And that doesn't mean that we're going to offer chemotherapy.
But it does mean that we want to offer them some choices. And those might be things like pursuing a palliative approach through something like hospice care. It might mean pursuing symptom-guided care in the clinic, or with the help of visiting nurse. Or transfer to a nursing home where, you know, that could be delivered in a safe way based on what their family situation is.
So number one, it's important to be able to answer questions about how long you think the patient actually has to live. Now, giving a specific number is probably not the right thing to do. But talking about days to weeks versus weeks to months is a very safe thing to do. >> So let me ask you some technique questions. And this is based on some observations I've had as a clinician. One of the things that struck me about patients in this situation is that they oftentimes don't remember what you told them.
And you'll tell them something, like, the second and third time they'll say, you never told me that, Doc. And it could be really important information. I didn't quite get that until my wife had thyroid cancer. She had a very worrisome nodule. And she's a physician. She's an internist. Very smart. And went to the surgeon, and was told she had cancer.
And came home. And I asked her what did the surgeon say, what kind of operation do they want to do, how extensive? And she said, I don't remember. I said -- And I got really mad. I said, what do you mean you don't remember? These are important things. And she said, as soon as he said I had cancer I just tuned out. >> Yes.
>> And I've been on the other end of that many, many times. And when it happened to my wife I thought, oh my god, there's really something about this. So with that in mind, I gather you need to have this conversation with people several times. You need to, kind of, bring in the information slowly. So what technique do you use to account for the fact that they, sort of, as soon as you tell them the really bad news they blank? They just don't hear anything further that you say. >> So it, kind of, depends on how well you know them.
So if it's someone you know really well, I start hanging crepe when I'm first worried that someone has relapsed or progressed. And so, you know, maybe they come in, and they say, oh, you know, doctor, I'm feeling really tired. And the wife will say, oh, you know, and he's lost so much weight. And, you know, I'm coughing. So then what I'll say -- It was a head and neck cancer patient who we had treated with curative intent.
And it's, sort of, the two-year window, which is when if you've had head and neck cancer and you're going to relapse that's within 18 to 24 months. And so I might say, oh goodness, you know, and listen to their lungs, and get a temperature, get a pulse ox reading. And say, you know, I'm not sure what's going on, but clearly, you know, with your shortness of breath something's going on, and we need to figure out what it is.
And, you know, what are the possibilities? Well, it could be infection, like, a pneumonia. It could be that sometimes the heart when it's working hard can cause backup of fluid into the lungs. It could even possibly be that the cancer's come back. And we just don't know. And we won't know until we get more testing. So then it's on their differential, right?
I didn't start with the cancer. In fact, that's the last thing I mentioned. But it's on their radar screen now. And so then we'll have a plan that they'll have a scan done. Or, you know, if they're really sick, you know, they'll need to be admitted for maybe a thoracentesis. If they're not super sick, you know, the scan could be done as an outpatient. And then when we go over the results I'll, sort of, recap that, you know, gosh, you had come in on Thursday with this shortness of breath and we didn't know what was going on.
And, you know, we needed to figure out what it was so that we could treat it, because, you know, you're clearly very comfortable, and there's no reason for that. But to address it we need to know what's causing it. And then, you know, I can say, unfortunately it looks like the cancer is back. And then I can pull up the films, if that's something, you know, that they'd like to see. Or usually they'll have questions about why-- why do I think that.
And then I will have in my own mind prepared the possibilities of next steps. Because I think the worst thing someone can do is to give patients bad news without having a plan. >> So essentially what you do is you back into it, is what you're -- >> Yes. >> -- saying. You, sort of -- >> Yes. >> -- build up with let's take care of step one, step two, step three, step four is the bad news.
You gradually work into that. >> Yes. And that's possible only when you know a patient very well. In the past, this is very rare, but perhaps not at all for you given your area of clinical expertise, 99.9 percent of our patients have been diagnosed already before they see us. So they know they have cancer. And they usually know how extensive it is, although maybe not.
You know, maybe they've just had a biopsy, and what we're doing is figuring out how extensive it is. And then we can also, I can also still have that conversation that if it seems as though it's just, say lung cancer, in that one spot, you know, it's possible that it could be removed. And then we'd have to see if any lymph nodes were involved in the chest, which would help us understand what the next steps were.
You know, if it seems to have come out of the lung and gone to other spots, or other spots within the lung then the treatment would be different. It wouldn't be for cure, but it would be to help you to feel better, and to decrease symptoms, and prevent symptoms from starting. But, very rarely people will come and believe that they have a curable illness because outside scans were misread or misinterpreted.
And to give a total stranger terrible news that they have metastatic disease is, I would say, like, the worst experience clinically, you know, I've ever had. >> Yeah. For the younger listeners, I mean, one lesson that I learned early in my career was to never have one of these prognostic conversations until you have a confirmed diagnosis in your hands. And patients will always push for some sort of judgment or advice when you don't really know all the facts.
And it's really bad to say anything until you know for sure they've got cancer, and you know for sure what it is, and where it is. So I think it's always very helpful to wait until you have all the information before delivering this sort of news. >> Oh, absolutely, yes. >> Given the fact that they have a hard time really absorbing what you tell them, do you deliver this information over several clinic visits? Do you set that up prospectively? You're an oncologist, so you're going to be seeing them with some periodicity.
But do you deliberately plan to deliver the information repeatedly over a period of time or -- >> You know, I really don't. It's not been my experience that people have said, you never told me that. You know, one way you know that people have heard things -- And this sounds awful, but I think it's really true, is that there's a response with respect to their affect, or someone's affect. So someone in the room will start crying.
And then maybe that wife will say to the daughter, why are you crying. And then the daughter will explain why. And then the wife will say, you mean he only has-- he's not going to be cured? You know, so it creates a dynamic that's actually useful. And so that's why I think when there are many people in the room that can be very helpful, 'cause at least one person's going to hear it. And it might be a daughter-in-law.
It might be the son. And they know how their parents are. They know that their mom or dad tends to not hear the bad news, and just pushes it out. I mean, we all have our ways of coping. And kids definitely understand their parents' ways of coping. >> Let me break that down into a couple of questions. One is, so your advice to patients when they're going to come in for counseling about the extent of their disease and the prognosis is to have family members or friends present so that there are lots of sets of ears to hear things.
What do you do with the patient who says don't tell my family? They come in alone, and they say don't tell my family. >> Well, I don't. I mean, it's really up to them. Now I might say-- explore why that is if they don't want their family to know. And try to help them to understand that, you know, gosh, well, what if it was your wife would you want to know. And, but, you know, when push comes to shove, I need to respect their wish to not tell them.
Now the thing that we see a lot is actually in different cultures -- And this is a real problem, actually, that I think deserves a lot of study is the idea of families acting as interpreters for patients. And any visit you really need to have an interpreter, because you have no idea how the information's going to be filtered. And, you know, we all, for the most part, want to protect the people we love.
And so I can understand how information could be not communicated or communicated in a way such that it's not really what I said. And that's, kind of, a sidebar, but I think it's an overlooked issue that people need to think about. So don't use family members as interpreters. But more to the point of your question, it's their right. More commonly so though we see, you know, the family saying don't tell a patient, which is where the interpreter issue comes in.
And, I mean, at the Mass General, you know, we have so many interpreters, and yet for some languages there are so many dialects that it's tough. But, you know, fortunately this is an area where some of the health information technology has really come through for us. And, you know, we use a service that has a microphone and a speaker on wheels. And we dial in the type of interpreter, including the dialect.
And so we can get that very easily. But even some places in the Far East, there are some dialects that are so rare that that can be challenging even. In which case relying on the family is the only option. And I worry sometimes. >> Yeah, that's always, it's always, you know, 13 people in the room, and it's the nine-year-old that does the translating, that's when it's really worrisome, yeah.
>> Well, yeah, I would -- Actually, I remember in Chicago I had a situation like that where the surgeon had said, oh, we got everything. But you should see the oncologist. And reading the note was, there were positive margins, there were nodes, there were, you know, metastatic disease. And there's a 13-year-old boy sitting there doing his homework. And I said, no, I'm not doing that to this kid.
I said, can you come back and bring your dad. And he came-- they came back the next week, and the dad wasn't there. And we didn't have the exact type of interpreter, but there was a woman who worked in the hospital who spoke that language, and she agreed to do that, which it must've been horrible for her. But there way I was going to have that child relay to his mother that news.
>> We just published a paper in JAMA Oncology and summarized it in JAMA where they did a survey of patients. And they studied patients, and gave them news in different forms, either with an optimistic bend or a pessimistic bend. And the patients preferred the optimistic bend. >> Oh, I'm sure. >> Yeah, they just didn't want to hear -- It was, kind of, interesting that, kind of, validated this notion of physicians presenting this overly optimistic view of things that you were talking about earlier.
The other thing just to mention that I've learned over the years is as surgeons we come in at the worst possible time, somebody's about ready to die, and something really bad has happened. And it's a surgical problem, like, a bowel obstruction. And then they call us in and you, and it's, like, a Friday night or something, none of these people have ever seen you before, and you're delivering the death sentence. And you're going to give them a decision. Everybody's told you, oh, we'll call the surgeons, they're going to come look at you, and then you come and say no.
And it's horrible. So one technique I've learned is I sit with patient and their family, and ask them to tell me about the person. What they do. what were they like, what things did they like to do, did they not like to do, what was funny about them. And try to communicate to them that I'm trying to understand this patient as a person. 'Cause I'm about ready to make a pretty horrible decision to end that person's life. And so at least one thing I try to do is say, look I really care about this person as a person, it's not just that I don't want to do it, but it's not going to help.
>> You're humanizing yourself for the family so that they understand this isn't you being someone who just doesn't care and just doesn't want to do a procedure that's indicated or something. >> Yeah. Yeah. Exactly. That's exactly right. Anyway, it's just horrible. I was interested to hear you say that after 20 years you still struggle with it, 'cause I have been in this business, I still practice a little bit, for 30 years.
And I still, every time I hate it. And I oftentimes walk out of the room and just want to cry. It's just, it's horrible. You never get used to it. >> Or you just feel like there's less of your soul. >> Yeah. >> One thing that the surgeons do sometimes is they'll say that, you know, they'll review the films, and they'll communicate their recommendations to the primary team.
And I think that that's not unreasonable. Because I don't think it's reasonable to ask you to do what you have to do. I mean, I think it's a different story for the medical attending to say, you know, the surgeons came by and they thought that actually it would do more harm than good, which is often the case, right? That the surgery would hasten death. And that's, sort of, how I have MICU conversations sometimes as well, or chemo conversations.
Say, oh, if she could just get more chemo. And, you know, say that, listen, the chemo is going to make things worse, not better. And sometimes, you know, in a situation when you're talking about putting someone on ventilator and, who's aspirating, you know, you can say, actually that's going to make things worse, it's going to blow all that further into the lungs. >> Yeah. >> So that if people understand that they're a lot less likely to, you know, then lobby for it.
'Cause it's unfair to put you in that position. And what you can say is, you know, you can understand why the team and you would want to know if there was anything more that could be done. Particularly, you know, from a surgical end, and it's something you'll give great consideration to, but it's important for you to see the films and talk more to the team. >> Thank you, Dr. Lamont. You've been listening to Chapter 19, Complexities and Prognostication in Advanced Cancer from Care at the Close of Life.
This is Ed Livingston, Deputy Editor of Clinical Reviews and Education at JAMA with this JAMAevidence podcast. Listen to our entire library of podcasts at Jamaevidence.com. Or in the iTunes Store. Or at Stitcher.
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