Disparities in End-of-Life Cancer Care

Shannon Westin speaks with Holly Prigerson and Alfred Neugut about their thought-provoking editorial, "You Get (Offered) What You (Can) Pay For: Explaining Disparities in End-of-Life Cancer Care." TRANSCRIPT The guest on this podcast episode has no disclosures to declare.   Dr. Shannon Westin: Hello, everyone, and welcome to another episode of the JCO After Hours podcast. And this is where we get in-depth on manuscripts and editorials that have been published in the Journal of Clinical Oncology. As always, I am your host, Shannon Westin, Gynecologic Oncologist and Social Media Editor for the Journal of Clinical Oncology, and I'm so excited to be here today. We are going to be talking about a very compelling editorial that is called “You Get (offered) What You (can) Pay for: Explaining Disparities in End-of-Life Cancer Care." And this was published on June 20th, 2023, in the Journal of Clinical Oncology as an editorial on an article entitled the "End-of-Life Systemic Oncologic Treatment in the Immunotherapy Era: The Role of Race, Insurance, and Practice Setting." So a very timely topic and very exciting for us to discuss today. I'm joined by two of the authors of the editorial, Dr. Holly Prigerson, Professor of Sociology and Medicine, the Irving Sherwood Wright Professor in Geriatrics Medicine at the Weill Cornell Medical College and the Director of Cornell Center for Research on End-of-Life Care. Welcome, Dr. Prigerson. Dr. Holly Prigerson: Great to be here. Dr. Shannon Westin: And also accompanied by Dr. Alfred Neugut, the Myron M. Studner Professor of Cancer Research and Professor of Medicine and Epidemiology at Columbia University and the former Associate Director for Population Science and Racial Disparities Program for the Herbert Irving Comprehensive Cancer Center at Columbia. Welcome, Dr. Neugut. Dr. Alfred Neugut: Thank you very much. Dr. Shannon Westin: Very excited to talk about this topic today, and I like to always start with a little bit of level setting. So I'd love for one of you to discuss: How common is the use of systemic anticancer treatment at the end of life? Dr. Holly Prigerson: So, based on the article, it looks like the rates within the last 30 days of death, it was 34% on average overall. So that was sort of the—you say level setting—the base statistic. Within 14 days of death, it dropped to 13% overall. So all the associations that are described are really disparities from that level.  Dr. Neugut: Speaking as an oncologist, I don't think any of my clinical colleagues will be surprised that it's that high. There is an effort made really to, in desperation, try to help. Patients want it. Families want it. So there really is efforts made to try to do that to prolong life or palliate or whatever. Dr. Holly Prigerson: The design also, which is probably going to be a question that's coming up, does raise a question for me that I'm wondering if Al could enlighten at least me on. They did select patients who were getting treatment for metastatic or advanced cancer starting in 2011 and then who died four years later. Does the selection for the fact that they were getting treatment initially—because everyone, that's how they sampled the study—does that increase the likelihood that they'll get treatment later on so that the rates are somewhat inflated is my question.   Dr. Alfred Neugut: Yeah, no, for sure. People who start chemo tend to continue partially because there is a certain amount of those who do well do well. If you respond to chemo initially, you tend to respond to the second-line therapy, you tend to respond to third-line therapy. If you didn't do well on first-line chemo, you're not likely to respond to a second line or a third line, so you don't have the enthusiasm to continue with it, and the patient certainly tends to lose interest in it. So you're right; there is a certain, call it, momentum or inertia in going forward with chemo once you've started. Dr. Shannon Westin: I mean, I think this just always highlights some of the issues we have, right, with any kind of retrospective data is how well can we design a population without—because we can't always do randomized control trials, and certainly not in this kind of setting. That would not be acceptable, I think, to providers nor patients. And I do agree that it can be tricky. Any other kind of, maybe just to help the listeners if they haven't gotten a chance to read this Canavan study, about the design, exactly what they were looking at in this population?   Dr. Holly Prigerson: Basically, they took these patients who were getting systemic therapy and had advanced metastatic cancer prior, and then who died. So there's always a question about the sampling on death issue, that they had to have died to be in the sample. So those are methodological issues, but there’s really very little way around that. If you want to know what treatments people received in the last month of life, they have to die for there to be a last month of life.  So then the treatments were divided into chemotherapy alone, chemotherapy with immunotherapy, and then immunotherapy with and without targeted therapy. So there were three types of treatment, which is sort of an important update because Al and I had published something in 2015 on chemotherapy and the outcome of what was called palliative chemotherapy at that time. And this was sort of a very refreshing–well, not—I shouldn’t say refreshing, but important update to our study, which had said that there are questionable outcomes of palliating someone with palliative chemotherapy so far along in the disease. And then the question became, well, is it different? Is it different with immunotherapies? Is it different with targeted therapies? And that's why I was delighted to see this paper, because it answered…  Dr. Alfred Neugut: I'd have to say there are probably differing views on this, but Holly and I are probably relatively nihilistic in terms of thinking that chemotherapy in late stages or near terminal patients is probably not all that helpful. Third-line, fourth-line therapy probably not going to get you very far. And maybe it's best to be thinking more about hospice care and supportive care. And now we have terrific palliative care programs at most or all cancer centers, and we really should be taking advantage of this. I think a real benchmark study was the Temel study from 2010 or 2011, which really—for those of your listeners who haven't read it or seen it, they should really take a look at it. It really changes the playing field and makes you realize that treatment is not really always the best thing for patients, and there are other options. And we go to hospice care or palliative care really, I think, too late in the game a lot of the time, and we really should be thinking otherwise.  Dr. Holly Prigerson: That is one of the outcomes that we had looked at before. So we had looked at palliative chemo, and not only does it not palliate, and we didn't show that it significantly enhanced survival; we also showed that it resulted in a lower likelihood of earlier enrollment in hospice, a higher likelihood of not dying where your family members thought you would have wanted to die, a higher likelihood of dying in the ICU or getting some kind of aggressive care. So it's not only what the chemo does or doesn't do in terms of treatment or survival or quality of life; it also seems to exacerbate and put someone at risk for very burdensome interventions that having avoided it might have enabled patients to avoid getting very burdensome care that's largely futile. But as Al said, we are probably more the nihilistic type.  Dr. Shannon Westin: Well, I think you bring up a couple of good points because you've got objective data, and these studies that you're mentioning are just some of them that show that early hospice care and early enrollment and even just a palliative care program or a supportive care program or whatever terminology we want to use, people do better, right? They live longer actually from that piece rather than necessarily the more “aggressive measures” of chemotherapy and things. Dr. Holly Prigerson: When there was an extra analysis of the Temel data, I believe they had shown that some of the survival advantage was explained by avoiding toxic chemo. So that's directly relevant. Dr. Alfred Neugut: There is an on the other hand, as always, which is that patients and families often don't want to do that. I mean, they realize that doing that is giving up, so they're reluctant to take hospice care or palliative care as an alternative to another cycle of chemo or another type of chemo. And as you say, you never know; maybe the next one is going to be the winner and there'll be a miracle or there'll be at least some substantial benefit. And then there's always experimental therapy, and now immunotherapy, which is the topic of this article, is the new winner on the block. And it has bright lights around it, and everybody has great hope for it. And it’s the new kid on the block, and everyone hopes that that’s going to be the big savior.  Dr. Shannon Westin: Right, and I think everyone knows of a story of somebody that was “on death’s door” and got immunotherapy or the newest targeted therapy or the newest ADC, so that definitely colors it. And that also colors, I think, the physicians that are offering it, right? Because, yes, I've definitely heard this, and I'm sure you guys have too: nobody should die with such and such cancer without receiving immunotherapy once or without receiving such and such targeted therapy. I hear people say this all the time, and I don't necessarily disagree. It's more that when are we giving it, right? So we should be thoughtful about when we're placing those things. But you're right; there's so many factors that go into these decisions, and it's not cut and dry around what the patients and the family members and the physicians are going to decide. Dr. Holly Prigerson: And I think that Al hits on a really key issue when he used the word “hope” because that seems like what the negotiation appears to be all about. You don't want to disparage someone or not offer them hope if there might… No one wants to say that there isn't hope. No one wants to be the bearer of that kind of bad news. And I guess it leads to—I think that that's part of the driver that ends up providing the gas that drives people to getting more aggressive therapies is because no one wants to be the person to be the wet blanket and disparage hope. And so it might affect how treatments are sold to patients or at least communicated to patients.   There was this one finding in this report that was curious, and it was that patients with undocumented performance status were the ECOG group most likely to get treatment. And so, in terms of what could be done going forward to make people more realistic and not offer hope where it's really, really unlikely, maybe employing more decision rules about requiring the documentation of performance status and ensuring that it's what the ASCO guidelines permit for administering another line of treatment. Because that might be a way to sort of use data to help correct what in psychology we call cognitive distortion, so correct the distortion of this hyper-optimism. It might help correct some of that. We don't want to overcorrect and make people hopeless or depressed, but we want to offer realistic options.  I think that's part of why this paper is so important, and it sort of informs future research to try to unpack some of the findings that they didn't have data on physician characteristics or communication discussions between patients and their oncologists. And maybe that's where the money is. Maybe that's where offering hope in a realistic way or different forms of hope, what to hope for, might be better communicated through more effective communication strategies and ways to enhance patients’ abilities to understand what they're agreeing to or not agreeing to.  Dr. Alfred Neugut: And I would add that it's easy for us to sit here and be dispassionate or scientific interlocutors and saying, you know, “It doesn't work, and therefore we're not going to offer it or you shouldn't get it or go on to hospice.” But it's different when you're on the other side of the table. And even us doctors or healthcare professionals or scientists, when you're sitting on the other side of the table and you're the one who's got the cancer or your mother or child, you're not going to be so easily dismissive of getting third-line chemotherapy and having your 5% chance that the tumor will respond to some cocktail of who knows what and you never know. I don't want to say anybody's wrong or that it's stupid. Everybody has to do what they have to do, and we at least have to think about it and know what we're doing and have realistic—at least some idea of the realism of what we're putting people through and the costs and the toxicities and what to expect. Dr. Shannon Westin: I think you guys brought up some really great points, and I do think that there is a huge impact around the communication piece. And we actually just did a podcast on discussion of goals of care at the end of life for adolescents and young adults and how those conversations can be different.  I think the other thing that really caught my eye and, of course, caught your eye when you did the editorial around the Canavan study was this idea that the patients with insurance—with all other things being equal, that the patients with insurance were more likely to receive end-of-life systemic treatment. And it's interesting because typically I feel like we think having insurance and having that support is always a positive thing and has a positive impact on our health, and it most certainly does. So that's not up for grabs. But then this particular study showed that it could potentially have been negative because of all the things that you all just said about the negative impact of care in this 30 days or even 14 days near the end of life. What are the opportunities for intervention at the insurance level? You talked a little bit about provider level and communication. Are there opportunities at the insurance level that we could address? Dr. Holly Prigerson: It does seem like having insurance companies determine what is reasonable and not reasonable to reimburse for. So including things, I would think, like having performance status factored in. What are the criteria for determining whether it's high value care or not? And I'm not an oncologist, so I really am going out on a limb, and I really want Al to respond to that question. But from my perspective, it seems like the ASCO guidelines determine when it's—“low-value care” is how they put. It’s wasteful and futile and burdensome. And they have guidelines of performance status, having not responded to multiple lines of chemotherapy, so that there could be guidelines for when there is value and when there isn't and that it could be more values driven in terms of guidelines of what they would reimburse. Because, as our title implicated, it seems like you get offered what insurance companies are willing to pay for, and that leads to potential disparities in equity if you have different insurance than other people and fairness and justice. Those seem like valid questions to raise. Dr. Alfred Neugut: I mean, I think if we're following randomized trials and evidence-based medicine, then I think we're in a reasonable area of what should be done and could be done and needs to be done. And almost always, insurance will follow those. You don't usually end up then having to argue with a peer-to-peer call to the insurance company under those circumstances. Where things get sticky is when you want to treat someone off-label or go off the reservation. I don't know if that's to some degree what this paper talked about. And there you probably don't get much benefit from treatment if it's not a data-driven use of the drug. So that's really, I think, where the line needs to be drawn. I don't think there you'll have an insurance problem if you've stated those sorts of guidelines. If you want to use NCCN or the ASCO guidelines, all good and reasonable. The problem is when someone's desperate and you're trying to make them happy, so you give them something even though there's no reason on God's earth why it should work, but just so they feel like you're getting something and you're not being abandoned, which sometimes you do feel pressured to do that, and very commonly you do. And maybe that's where racial disparities save the uninsured from being tortured for something that's not likely to really be very helpful.  Dr. Holly Prigerson: But as someone who's a disparities researcher as well, it raises the question were Black patients—which these data couldn't answer: were they offered different treatments than the White patients? And I think we all agree that low-value treatments shouldn't be offered or received, but the fact that Black patients receive less of the expensive stuff, the newer cutting edge, is problematic. And I think there does need to be more research into equity in terms of the options presented to patients with similar diagnoses. That was the troubling aspect of it, not that they weren’t getting, in essence, better end-of-life cancer care, but that's beside the point. In terms of ethics, it would be nice to have known whether they were offered the same things and declined it. I think all of us are a little suspicious that maybe they weren't.  Dr. Shannon Westin: Yeah, that definitely—I like how you said it. It struck a nerve. Like, when I was reading through both the article and your editorial, that was something that caught my eye is this evidence of how implicit bias is impacting what people are offered. And yes, it ended up being an overall benefit to underrepresented minority patients. However, that wasn't necessarily the intention or why that happened. So I would be interested to hear what you all think about what we know about how implicit bias impacts the care of patients with cancer, just for our listeners, and specifically what particular treatments are offered, not necessarily just at the end of life, but just across the cancer continuum.  Dr. Alfred Neugut: There are estimates—if you read the medical literature on health policy and things like that, there are estimates that we overdo a lot of things in medicine and give—I don't know. I've read that like 70% of what we do in medicine is unnecessary. I'm not saying in oncology necessarily, but screening and wellness care, etc. And so oncology probably is equally guilty of such things. And there are biases in that as well, so, you know, that's what happens.   Dr. Holly Prigerson: And in the article, they had cited, I think it's Penner. There was a study that showed that ratings of an oncologist's implicit bias were negatively associated with Black patients' willingness to undergo their treatment recommendations. So the dynamic between what's offered, what's heard, what's trusted. There's obvious history of Tuskegee and concerns about being denied treatment. So this article kind of feeds into why was the latest and greatest types of treatment not as common? That said, the actual differences, if you look in the tables, the actual differences weren't that disparate. They were statistically significant, but we’re talking like 37% to 34%. So the disparity isn't as wide as to cause serious alarm bells to go off that people are being treated so differently. But it does raise a lot of underlying concerns that you would want to make sure that everyone's being offered the same things. So it does imply—that Penner article implied—it's basically medical mistrust may be interfering with a Black patient's willingness to undergo or accept some treatment offered. So if you follow the logic on that through, then the intervention would be: What are ways to enhance medical mistrust of their oncologist? What are the reasons for it? And how can patients feel that they are being treated by someone who treats them fairly and no differently than White patients? And so efforts in those directions seem like they might pay off in terms of enhancing and addressing implicit bias.  Dr. Shannon Westin: Well, this has been a really great discussion. I'd love to hear just kind of your last thoughts from each of you around some of the unmet needs. We've heard themes throughout the discussion, but maybe just sum it up for the podcast listeners, bring them back and where we need to go next here.  Dr. Holly Prigerson: Al and I have been working on a few different projects to address medical mistrust and leveraging things like healthcare chaplains, who might be liaisons within an outpatient oncology setting. We also have interventions that try to enhance clinical communication, like what we call a GIST, so that patients easily get the gist, the essential meaning of things like scan results to sort of level the playing field so that patients have adequate information to know what the harms and benefits of the treatments that they're being offered might be and have a better background to be engaged in those decisions in the first place.  Dr. Alfred Neugut: My own thing is that you should be telling patients right from the get-go that they have incurable diseases and not letting them meander along thinking that we can actually help cure them in some meaningful way. We know who's incurable, and even if they have two or three years of survival coming to them, colorectal cancer or breast and prostate, etc., it's still fair to tell them that we can't cure them. And then when the time does come two, three, four years later, they're not going to be shocked, and they'll deal with it, I think, in a better way because they've known all along that this day is going to come, and then they don't react badly in the last two weeks, three weeks, four weeks, because they've been prepared for all those years before. I think the real problem is no one ever tells them directly, or many doctors don't tell them directly upfront. And so, when it comes near the end, they don't tell them until they're almost semiconscious. Then it's a shock out of the blue. And then of course they want to be treated more aggressively at the end. And I think that's where some of the issues may come. Dr. Holly Prigerson: And with the immunotherapies, that probably raises a lot more questions, even from the oncologist’s perspective, about what they can call incurable because maybe there is hope, maybe there are these outliers. That's where it seems like it's wonderful that there are advances, but if the rates are so low and people have a misunderstanding of their chances, I think we're on the side of understanding what the best data suggests are the likely outcomes. And I think all the new advances sort of undermine disparaging hope because that's what they're there to do. They're there to offer hope. Dr. Shannon Westin: And everybody wants to be the tail of the curve, right? They all want to be that person. So that's exactly—you're totally right. When we're trying to communicate, “Okay, this is the most common outcome.  Yes, there are people that are way over here but…”  Dr. Holly Prigerson: That's going to be me. Dr. Shannon Westin: Yes. They always say, “That's going to be my miracle.” Well, great. Well, thank you both so much. This was such a lively discussion, and I know the listeners learned a ton. I know I did.  Again, thank you all for listening to JCO After Hours. We were discussing "You Get (offered) What You (can) Pay For: Explaining Disparities in End-of-Life Cancer Care," published in the JCO 6/20/23. We're so excited that you took the time to listen. If you're looking for more podcasts, check out our website, or you can find us wherever you get your podcasts. Have a wonderful day. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.   Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.