When you are in that terribly complicated time of making medical decisions around advanced cancer, what framework can you turn to? Oncologists are called upon to treat and offer options; patients hope to gain time if not be cured. What are the choices and the impact of those choices for advanced solid tumor cancers? What if I told you that two doctors have gathered the data to find out whether certain treatments extend life or not. Would you listen to that conversation to find out more? I would!
Transcript:
Diane Hullet: Hi, I’m Diane Hullett and you’re listening to the Best Life, Best Death Podcast. And today I’ve got one of those interesting series of guests. I’ve got two women with me and this is another one of those things that my husband brought to me. So, you know, my spouse is one of my great sources of inspiration for podcast guests.
He’s a, he’s a great reader of online things, great digger into of YouTube. And you know, he’ll occasionally, well, about twice a month, he’ll send me something and say, Hey, this looks really interesting. So welcome to Dr. Karen Adelson and Dr. Maureen Canavan. Dr. Adelson is joining us from the MD Anderson Center and Dr.
Canavan joins us from Yale. So they’ve both done this very interesting study and I’ll just start by asking them to introduce themselves. Hi,
Dr Kerin Adelson MD: I’m Karen Adelson. I am a breast cancer oncologist and the chief quality and value officer at the MD Anderson Cancer Center.
Dr Maureen Canavan: And hi, I’m Maureen Canavan. I am trained as an epidemiologist and I work as an associate research scientist at the Yale School of Medicine.
Diane Hullet: Fantastic. So this study, maybe Karen, you can tell us the name of the whole study. Say it nice and slow so our, you know, radio listeners can take it in.
Dr Kerin Adelson MD: All right. So the very academic title of this manuscript is which was published in the Journal of the American Medical Association Oncology Journal is Systemic Anticancer Therapy and Overall Survival in Patients with Very Advanced Solid Tumors.
Diane Hullet: Fantastic. So the summary I read was about three pages, and I thought, well, this is really interesting because I think what you find in the article is that, or what you found in the study is that there were, well, we’ll, we’ll get into the study, but I think this is something that people sort of intuitively think, and yet when you’re in that big flow of making choices in a medical situation, so many people choose things at the end of life that they don’t think they would choose.
But when they get there, they choose it. That’s kind of my layman’s understanding of what happens. Well, tell, tell us a little about, you know, how the two of you found each other and how you designed this study and what you were trying to do.
Dr Kerin Adelson MD: So Dr. Canavan and I work together a lot. We’ve published a number of papers looking at The entire ecosystem related to use of systemic therapy at the end of life.
So looking at patterns that lead to overuse of systemic therapy at the end of life, looking at Changes over time and transitions to using more and more targeted therapy and overall really a failure nationally to change this pattern of care, which we know causes tremendous harm for patients and families.
The background of that is that patients who stay on systemic therapy near the end of life or past the point of benefit are much more likely to have medicalized death. What’s the problem with medicalized death? It means that these patients spend time in the hospital, repeated visits to the emergency department, time spent in the ICU, which often does not reverse or improve their condition.
And the flip side of that is that’s not time spent at home saying goodbye to loved ones and preparing for the end of life. We know that patients who stay on systemic therapy are much more likely to have this pattern of care. It’s not likely a cause and effect that systemic therapy leads them to go to the ICU, but it’s more a pattern that when you continue to take treatments or to Have hope in treatments.
You don’t make the transitions to hospice or to supportive care, palliative care at the end of life. And so when things start to go wrong, there’s no option other than going to the hospital.
Diane Hullet: Right. Oh my gosh. So well put. And I mean, these terms you’ve popped out a couple of phrases that are so powerful, this past the point of benefit.
Right. That’s really what everyone, whether it’s yourself or your sister or your father or your friend, that’s what you want. You want them to get benefit and not go past the point of benefit. And then this term medicalized death, right? Almost everyone, I think it’s 70 percent of people say they would like to die at home.
And then it’s absolutely flipped. 70 percent of people die in hospitals. I’m probably generalizing somewhat about those statistics, but it’s not what people think they want. But it’s where people end up. Maureen, what would you add to that?
Dr Maureen Canavan: I think Karen gave a beautiful highlight. But, you know, in addition to the burden of the patient, you also have that burden extending onto the families, that it’s much more costly.
It’s, you know, emotionally draining, quality of life is impinged upon. And I think the challenge is when we think in terms of very advanced disease, you know, these are. You know, tumors that are not likely to recover from. So we really need to think about holistically, you know, the patient, the family, and their goals of care.
So these things in terms of goals of care conversation are something that Karen and I talk about a lot in the sense of the importance of that, of having transparency, both between the provider to the patient and then the patient back to the provider to say, you know, this is a path to recovery, Most likely the point of benefit, you know, what do you want from your time left?
How is the best way to approach that rather than the idea that more therapy is always going to be better. So really kind of making sure to be transparent to have those conversations with the patient to be able to note that. And then I think back to your point, Diane. about some of these things, you know, in the back of our mind, they seem common sense, like too much therapy could be bad.
But really having evidentiary support for that is a huge thing because this is something, you know we hope that providers can go to their patients and say, you know, there was this study done from MD Anderson center and Yale that looked and they saw there’s no benefit for higher utilization of treatment.
So let’s have this as a jumpstart to our conversation about what you want in terms of your care pattern. So I think that’s something that we’re very excited to share, just to be able to open up these conversations sooner and hopefully more transparent between, like I said, patient provider and the flip side.
Diane Hullet: I think it’s such a complex system because what you say when you’re walking around perfectly healthy is different than what you say when you’re down a medical path. And what doctors understand and what they’re able to say and bring to people, it’s just such a complex system. And I love acknowledging how complex it is.
It’s not black and white. Every family’s different, every patient’s different, every doctor’s different. But I think you’re absolutely right that having this evidence that begins to trickle into that system, whether patients understand it or whether doctors understand it, is key.
Dr Kerin Adelson MD: Can I build on that a little bit.
So I’m an oncologist and I’ve taken care of many patients who have other oncologists as their primary doctors and the pattern I’ve seen throughout my career. Oncologists are trained to give treatment and to fight cancer. You know, we use all of these battle narratives all the time, you know, the war against cancer.
She fought so hard and. Oncologists really struggle if there are treatments that a patient has yet to receive with not offering it. It’s much easier for somebody who’s been trained to, quote, fight cancer to say, well, we could try this. It’s sort of, it’s that, it’s, it’s the rationale behind the Hail Mary, which maybe it’ll work, right?
Or I’ve seen it work once before, right? We have very selective memories, all sorts of bias. And so what this study sought to address is that when oncologists. give therapy to patients who are going to die soon. They’re not doing it because they want to make money or you know, they’re really doing it because they hope it will help the patient.
And so we sought to answer that question. Does giving systemic therapy to patients with very, very advanced cancers improve survival overall? And the hypothesis was that If that treatment did improve survival, the practices around the U. S. who use more systemic therapy for very, very advanced disease would have better survival than the practices that give less systemic therapy for very advanced disease.
And in six of the most common cancers, Particularly solid tumors is what we focused on, not blood cancers. We saw that there was absolutely no survival difference between the practices that give more systemic therapy to patients with very advanced cancer than the practices that give less. And like Dr.
Canavan was saying, we really hope that this will give oncologists the tool to say, Hey. This isn’t going to help. Let’s focus on your quality of life and spending time at home with your families now.
Diane Hullet: That makes so much sense. So was the study really about canvassing data? Is that really what you had to do?
Yeah.
Dr Maureen Canavan: So the good thing is that we had from Flatiron Health consolidated real world data. So this is data pulled from different, you know, hospitals, academic and non or community hospitals across the country. So representative in that capacity. And like Karen was saying, we were able to look among the six most common solid tumor types of very advanced disease.
We had, as with any study, you know, you want to satisfy rigorous methodology. So we had qualifications that there had to be a certain time from they had to be diagnosed with metastatic or advanced disease. We’re following them prospectively. We weren’t limiting the patients on treatment. We were following their entire metastatic.
Or advanced disease population at a practice, we then stratified practices by their utilization of systemic therapy. So immunotherapy chemotherapy. And like I said, follow them prospectively. We also had stipulations that there had to be a certain amount of time to follow up and these are all, you know, they seem like intricacies, but it’s to be able to get at.
We’re not randomly introducing bias that could affect our estimates so that we felt most qualified with coming to our conclusion.
Dr Kerin Adelson MD: And the survival comparisons were done by disease. So we compared It says that use more to that use less within each disease type. So, you know, breast cancer was one cohort.
Pancreatic cancer was another and you can’t compare breasts to pancreatic because the the disease biology and the court, the survival course is so different. So we controlled for cancer type.
Dr Maureen Canavan: And also within our survival models, we did make sure to take into account covariates like gender, like age, race, ethnicity, in order to kind of remove that.
So we’re really tracking, stratified by those practices that give the most systemic therapy compared with the practices that give the least systemic therapy. So you can feel confident that that’s the difference you’re comparing.
Diane Hullet: Right. It’s that’s so fabulous. So in a way, you, the two of you and having worked together on this before you, you kind of said, here’s a problem.
We see, we think we’re over treating at certain stages past the point of benefit and We’re going to figure out a study that will help us figure out whether that’s really true. And if it’s true, then how do we get the word out? Are, are people, are you finding that the word is getting out? Like our colleagues reading this, have people responded?
Dr Kerin Adelson MD: Yeah, it, it definitely got picked up a lot in the press. And then, We’ve been contacted actually by people from other countries around the world, you know, wanting to look at this I think in particular because it’s the first study of its kind to really look at survival prospectively, which means sort of from the point of diagnosis of metastatic disease and then comparing survival with these different treatment patterns, more, more aggressive versus less Fantastic.
Diane Hullet: So kind of unique in the scope of what it was trying to cover and the fact that you chose multiple diseases. I think that’s really fascinating. And could a similar study be done on blood diseases, for example, or is that a little more complex?
Dr Kerin Adelson MD: The biology of blood cancers is different. So it absolutely could be done.
But you probably have, we would have to figure out different stratification factors based on levels of pretreatment. So with with solid tumors, you know that at the point that the cancer is metastatic, In the vast, vast majority, that means the cancer’s incurable. Blood cancers are more complicated because sometimes you can cure very advanced or refractory disease, but there is a point in blood cancers as well and then some blood cancers which are not curable like multiple myeloma.
So there probably is a need to do that study in that population and now you’ve given us an idea.
Diane Hullet: Oh, yes, that’s a, that’s a favorite thing I like to do, tell people, you know, the next thing they should do. It’s great. I wanted to read this one quote because I thought this was really, this really gets to the heart of it.
And then you can elaborate on this if you want. The authors noted that end of life SACT, which is again, is systemic anti cancer treatment. Which I assume that really is basically chemotherapy or radiation, yes?
Dr Kerin Adelson MD: No, not in our, I mean, it could be. It’s any form of systemic therapy, which is drugs. So it could be Old fashioned chemotherapy, it could be immunotherapy, it could be targeted therapies, which are often given by pills and this study was unique in that we were able to look at drugs that are given by mouth as well.
We did not look at radiation in this study.
Diane Hullet: Okay, great. I’m glad I sort of threw that out because I wasn’t completely sure. So the authors noted that end of life SACT has been linked with more acute care use. Delays in conversations about care goals or conversations about end of life, right? Late enrollment in hospice, higher costs, and potentially shorter and poorer quality of life.
I mean, these are huge. This is what almost everyone would say they don’t want. So I really, I really love that you laid that out so clearly about what the purpose of this study is and how you’re trying to impact that. What I would call a conversation.
Dr Kerin Adelson MD: Absolutely. You know, I, every time we write about this in the discussion section, we end up talking about some issues that have to do with what as a society we value and we pay for and support.
So to be totally frank. I can give a patient 50, 000 worth of systemic therapy combined, you know, immunotherapy that is not going to have any benefit as we’ve shown in this study. But if I want to put that patient on hospice where they are at the end of life. heavily symptomatic, needing 24 hour care to, you know, get out of bed or go to the bathroom.
We can’t even give that patient somebody to care for them in their home at 15 an hour or minimum wage. So as a society, we pay for Extremely expensive, complex medical care. We, we talk about rationing and we’re against rationing, but then we don’t offer a meaningful alternative. In recent years, we’ve seen lower and lower use of inpatient hospice because the criteria to qualify are so strict.
I had patients in the hospital who were actively dying. But did not meet criteria for inpatient hospice because they didn’t require say intravenous narcotics and so we really have to look at what do we pay for as a society to make it easy to make these humanistic decisions that are focused on quality of life.
Diane Hullet: Oh, you’ve just said so much there. I think it’s so huge. We rely on the unpaid network of family caregivers and family caregivers are the backbone. And I think so few families realize how much they will be called on if somebody’s discharged from MD Anderson and sent home. I hate to call it a burden because I feel like that’s maybe the wrong word, but the burden of care that then goes to families.
And just like you said, why is there not the ability to pay 15 an hour? Why can they not get a month or two of at home 24 hour care for this 50, 000 that we could spend on drugs that won’t help? It’s astounding. And I love that you went to that kind of values level. And I, that’s the question I really think, how do we impact that?
Who? Who makes those changes?
Dr Kerin Adelson MD: I think we need to advocate in Congress and we need to shift some resources to make the hospice benefit more comprehensive. The reason hospice doesn’t pay for home attendance is because the daily rate that a hospice is reimbursed is so low that there’s so many elements of care they can’t afford to give.
Another one that. Really limits use of hospice in the blood cancers is transfusions. So, you know, patients with blood cancers become say extremely anemic, which makes them tired and frail. They, they have risk of bleeding, for example, as well, but hospices can’t afford to give transfusions. And so patients with blood cancers are very unlikely to use hospice, except maybe in the very last days of life.
So, you know, I think we need, we need to advocate for shifts in benefits and look at Medicare in particular. Huge.
Dr Maureen Canavan: I was going to add to that, that I think, you know, there is momentum. I’m going to say from the general medical community, these quality metrics that ASCO and the National Quality Forum put out with.
Regards to the level of systemic therapy at the end of life to reduce that. This is focused among solid tumors for our work, but the idea that there is some consensus among the medical community. And I think that could ideally, this is my opinion, be used as a lever to kind of hopefully influence policy change because that is kind of the crux of it is that we need to gather evidence.
We need to show the evidence. all. There’s no benefit. We need to show, you know, that the medical community recognizes the needs of patients who need for quality care. And then how can we define that? What are some ways that we can get at that? And I think, you know, the more we can do that, the more we can bring that as You know, again, going back to evidentiary support when trying to have like levers of change for policy.
So I think showing that there is consensus in terms of okay, we we found this chemotherapy within 14 days of death or general systemic anti cancer therapy within 14 days of death. We want to lower that metric. And how can we do that? What do we see are some of the benefits? You know, would it be less caregiver burden?
And then, you know, how can we transition to things that might be, again, more holistically supportive of patients and their families? And that, you know, ideally could be something to really get at the idea of the importance of, you know, that hospice benefit at the end of life and things like that. So I think that’s Trying to stack evidence, trying to show communal support in the medical community and use that as levers for policy changes.
Definitely something that hopefully we’re contributing to.
Diane Hullet: Oh, for sure. Is there, are there people trying to study the benefit? Like the flip side of it? Like what are the benefits of going on hospice earlier? What are the benefits and how does that get put out?
Dr Kerin Adelson MD: So there is a large collection of work, probably that happened, you know, in the last 20 years that show better quality of life for patients, actually, and better survival for patients who get palliative care earlier and palliative care means many different things.
It doesn’t always mean hospice. It’s care that’s focused on. Taking care of the whole person, their psychological needs, their physical needs as opposed to just disease modifying treatment or trying to fight the cancer. And we do know that there is less distress among patients and families who are able to have that approach to the end of life.
I want to go in another direction just for a second when we talk about the hospice benefit and put a health equity lens on that. At this point, to die in hospice. You need resources, and so there are literally patients who cannot afford to die at home. So whether that’s hiring help in the home that you have to pay for out of pocket, or just being able to take time off work.
There are so many people in this country who work paycheck to paycheck, and they can’t take off a month or two to take care of their dying family member. And so. You know, we talk a lot about reducing disparities and equity, but when you have a benefit that doesn’t meet people’s needs, essentially, you are introducing disparities and who can access that, that benefit.
Diane Hullet: Absolutely. It’s, it’s such a huge, huge challenge. I don’t even know where to begin to bite that off, but it’s, it’s even a, a well off you know, I know of a situation with, with a family who’s got resources and the mother is still at home, but How in the world are they going to pay for help is what they’re struggling with.
And so what makes the most sense and the children can’t take time off. And so everyone’s just in a bind. And meanwhile, you’re sort of waiting for the other shoe to drop. When is mom going to fall? When is mom going to have an incident of some kind? And when will that throw her into a health situation?
system that isn’t the best quality of life for her that she doesn’t even want, but we can, we don’t know how we’re going to keep her out of it. Yeah. It’s just a really interesting conundrum in an educated family that has some resources. So, wow. Yeah.
Dr Kerin Adelson MD: And I think other countries do much better, right? They probably have more limits on use of systemic therapy.
And. They do offer more comprehensive services to patients who are nearing the end of life, particularly Europe, Scandinavia, and even Canada,
Diane Hullet: right? And then people say, somehow, that’s, you know, some kind of health care that we don’t want to have. But when it’s your family member, you do kind of wish you could have it right.
Absolutely. Say a little bit more about, you were talking about an interesting model at MD Anderson that is kind of trying to make a bridge between this, you know, hair medical care, bridging to palliative care, bridging to hospice care, bridging to death.
Dr Kerin Adelson MD: Yeah. So this is. This is literally a new unit that we’re going to open in September.
So, you know, MD Anderson is a unique hospital in that as a top cancer center around the world, people travel often when they’ve been told that there’s nothing left. for them to receive. And they will show up at MD Anderson with the hope that we will be able to offer something that nobody else did.
And what ends up happening is that there are patients who end up coming in and going straight to our intensive care unit because they’re really, really nearing the end of life. Or sometimes there are patients who we’ve We’ve been treating and we’ve told that there’s no further options, but they just aren’t at that point of acceptance that they can that they can accept it.
Or sometimes maybe we haven’t communicated as well as, as I would be ideal. And these patients end up in our intensive care unit often dying in that unit. And the. Only other option is hospice or a palliative care unit, which requires rapid deescalation. So if that patient comes in and gets put on a breathing machine, the decision to take them off the breathing machine often means that they will die.
die right away. And that’s really hard for families. And so what we realized was we needed a special unit that could meet their medical needs while knowing that their condition was irreversible, that we weren’t going to escalate, we weren’t going to do CPR. And that, They could receive care from a multidisciplinary team with a mix of intensivists who could support, say, the ventilator and palliative care doctors and ethics and social work to help them transition towards the end of life and get ready to accept what’s coming, because for a lot of patients, that decision between intensive care and hospice is And sort of too severe.
And so this is really a unit to help patients who are at that transition time and support them to get towards the end of life.
Diane Hullet: That seems so interesting. And as you said, that’s sort of unique to MD Anderson because maybe in a different situation, there just should be more upstream conversation so that they’re not in that acute crisis.
Medical crisis when they come to you, but some people there, some people at MD Anderson are in that space.
Dr Kerin Adelson MD: Yeah, I think there’s a population at every hospital that is like that. Although, right, we probably have more. You know, from your points of view, how do we shift that whole, this, this battle mentality?
Diane Hullet: How do we shift it? Is there another metaphor? Yeah. That’s the, that’s the metaphor that could help people say, I’m living with this. Thing in my body, this disease, but you know, I’m going to treat it, but I’m living with it and I may die with it. I don’t know. I haven’t figured out what the metaphor is that’s different than battle and fighting because I think one of the challenges is that our narrative around death and end of life is just about the body, right?
Like we just talked about, we lost the body, we lost the battle, the body died, but we don’t really have a good narrative for. Anything else about the relationships, which in fact are what’s most important people at the end of life to relationships are at the center of living in the center of dying. Is there a different metaphor other than the battle?
Dr Kerin Adelson MD: You know, I need to think about that. And I’m hopefully going to develop a great phrase and get back to you. But but it is about acceptance of the course and the prognosis that’s going to come. So when we talk about the importance of prognostic conversations or goals of care conversations, it’s so important to think about what that enables.
I have had patients over the years who understand that they have limited time left on this earth and then are able to make decisions to make sure that the time they have left is spent doing what they’ve always wanted. I have patients who have. Lived out their bucket list in the time they had left traveled around the world going to places.
They always wanted to go to spending time with Children with spouses with loved ones with old friends. In really prioritizing those relationships ahead of other things gives them the time to prepare for the end of life to, to get their legal affairs in order to, go through their belongings and, you know, figure out what’s most important to save.
And so, the lack of those conversations deprives people of the opportunity to prepare.
Diane Hullet: So well said. May we, may we all do so. Well, I’m thrilled that this study came out and I hope that it really goes far and wide. I, I would, I feel like it’s the kind of study that, study that both, again, regular folks ought to be able to take in and kind of bring for themselves as advocates to their medical practitioners.
Because this is the thing, we’ve become this very independent, well, we’ve always been an independent society, but there’s this thing in the last, what’s it called? 30 years, I think where people really get on their own medical thing, you know, where we started advertising drugs on the TV that you then go and tell your doctor you need to take this is, this is new.
So here’s a study you can read and then take to your doctor and say, let’s talk about this. How does this apply to me? And I really hope it makes, you know, colleagues, doctors, nurses, you know, even family practitioners who are sometimes the frontline people to begin to talk to their, you know, their, their longtime patients.
They could plant this seed upstream for families and patients and say, you know, there will come a point where probably you won’t benefit. So keep that in mind as you move forward with this new oncologist, this new medical team. So. You know, this is about doctors at all levels and medical folks at all levels who can take in this information and then convey that I do think, I think it’s huge for medical teams to kind of have to reconcile that they cannot solve everything.
I mean, I think they’re problem solvers, right? And this is, we get to some intractable problems at the end of life.
Dr Kerin Adelson MD: Absolutely. Thank you so much for doing this interview and for raising the awareness about our, our study.
Diane Hullet: Oh, you bet. Where can people find this study?
Dr Kerin Adelson MD: It’s published in the Journal of the American Medical Association Oncology Journal.
It’s JAMA Oncology.
Diane Hullet: Wonderful. Great. And any websites you want to leave for either of the two of you or just MD Anderson?
Dr Kerin Adelson MD: I think, I think they, they can definitely find us on MD Anderson. I believe we actually posted about this manuscript on, I think we did it on Twitter. So. Fantastic. Which is now X. Let me, sorry.
Diane Hullet: Twitter X. It’s all, it’s all a thing. Great. I’ll, I’ll put a link to it in in the show notes as well. Well, thanks so much to both of you. I really appreciate your time. And as always, you can find out more about the work I do at bestlifebestdeath. com. Thanks for listening.
Dr Kerin Adelson MD: Thank you so much.
Diane Hullet: Thank you.
End of Life Doula, Podcaster, and founder of Best Life Best Death.
© 2021 BEST LIFE BEST DEATH℠, LLC. ALL RIGHTS RESERVED.
© 2021 BEST LIFE BEST DEATH. ALL RIGHTS RESERVED.
