We are fortunate today to interview two oncologists whose research has catapulted palliative care forward: Jennifer Temel, author of the landmark NEJM study on early outpatient palliative care for patients with advanced lung cancer; and Areej El-Jawahri, author of the landmark JAMA article on inpatient palliative care for patients with blood cancers undergoing stem cell transplant.
Jennifer’s study is most widely known for the “kicker” – not only did it improve quality of life, palliative care was associated with a couple months longer survival.
Areej’s study is remarkably novel in that it is, to our knowledge, the first study of palliative care during curative treatment.
We cover a huge amount of ground today, including:
- Jennifer’s reaction when she unblinded the study and found that palliative care was associated with prolonged life
- Differences between inpatient and outpatient palliative care for cancer
- What’s in the secret sauce of palliative care? (hint: coping)
- What’s the right dose of palliative care?
- Do we need separate palliative care models for each cancer?
- What is next for these two?
- Celine Dion
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: Alex, I am super excited for today. Who do we have with us?
Alex: Today, we are delighted to welcome to the GeriPal podcast, Jennifer Temel, who’s a thoracic oncologist at MGH in Boston. Welcome to the GeriPal podcast, Jennifer.
Alex: And we are also delighted to welcome Areej El-Jawahri, who is an oncologist at Massachusetts General Hospital as well, who specializes in blood cancers. Welcome to the GeriPal Podcast, Areej.
Areej: Thanks so much for having us.
Eric: I am super excited for those who may not know we’re going to go into this, both Jennifer and Areej have published some of the most important papers in palliative care oncology with amazing randomized control trials on the subject. We’re going to dive into that and into the subject of palliative oncology. But before we do, I think somebody has a song request for Alex.
Areej: I’m going to make Jennifer make the song request for Alex.
Jennifer: I’m such a good and supportive friend of Areej, that her favorite musician, it’s hard to call her a musician, is Celine Dion. And so Alex is going to pleasure us with a Celine Dion song. [laughter]
Eric: I can’t tell if there’s sarcasm laid into that.
Alex: Can’t tell…maybe a little bit.
Areej: Wow. That was fantastic.
Alex: The cheese factor’s off the charts with Celine Dion. It’s great, good choice. I thought you were going to choose like the Warriors theme song.
Eric: And for those who can’t see right now, Alex is fully dressed in Warriors garb with Warriors background in his Zoom chat.
Alex: I’ve got to show you the back of the Jersey.
Eric: Yeah. And Alex’s back of his Warrior jersey says GeriPal, number 85.
Alex: That’s right. This is my early father’s day gift from the family.
Jennifer: Oh nice.
Eric: Well we’re not here to talk about the Warriors win, that’s coming up. We’re here to talk about palliative care oncology. Maybe I could turn to both of you how you got interested in this. And I just want to highlight, Jennifer has a great JPSM article that just came out. What was the title of it, again? I had it on my screen. A career changing trip to Seattle. Jennifer, how did you get interested in palliative oncology and the research that you do?
Jennifer: Yeah. So back when I was a younger trainee and fellow, I actually planned to follow in Areej’s footsteps and do like leukemia or bone marrow transplant. But at that time I was struck by how in that field, there wasn’t a focus or really interest in symptom management and support for patients and their families. And that was what I was becoming increasingly drawn to as I was going further in my oncology training. And so when I looked at the tumor types and the clinicians that seemed most focused on symptom management and supporting patients along their journey, it was in those cancer types where the prognosis was very poor. And back at that time, 20 years ago, lung cancer was one of the most common cancers and had the most poor prognosis. So I really opted to specialize in lung cancer because I thought that was the appropriate population to build a supportive and palliative care research agenda.
Eric: And what a research agenda that you’ve done, including one of the most seminal papers that we have in palliative care in lung cancer patients. Would you also just mind mentioning kind of the JPSM article too? What drove you to write that article on this important trip to Seattle?
Jennifer: Yeah, so I think as all the listeners of this podcast know, and I know he did do a podcast with you guys when he was still able to verbally communicate, with Randy Curtis’ diagnosis of, I keep wanting to say AML, ALS. I have oncology on the brain. Scott Halperin organized a special journal with JPSM, to allow us to write either original articles or tributes to Randy talking about the impact that he’s had on us and our lives. And my article is about when I was a mid to junior faculty member trying to build this career. I was really struggling because there were no mentors in the oncology space. So at least in my oncology community, I really didn’t have anyone guiding or supporting or mentoring me.
Jennifer: And so when I was applying for a grant that had a training opportunity, I reached out to Randy and I had never met him at all. And he was as usual with Randy, incredibly generous with his time and support and arranged for me to spend five days in Seattle, where he was not only incredibly warm and inviting on a personal level, but generous with his time and his team. And that visit was really transformative for me to kickstart my program here in Boston and at MGH. So I have always felt quite indebted and grateful for Randy and his generosity.
Eric: And Areej, how about you? How did you get interested in palliative oncology?
Areej: So when I was in college, I had a close friend who had a serious illness and actually died as a result of cancer. And so I went into medical school wanting to cure cancer. She had a terrible end of life experience and was in the intensive care unit for many days. And so I went in thinking that nobody else should ever have to go through this and we cure cancer. This problem will be solved in my naive 20 year old brain. I entered medical school and I did a course that was offered that’s called living with a life threatening illness. And it was a longitudinal course where we spent time with a patient with a serious illness the entire year, the entire first year of medical school. And during that time, we had coffee and lunch with these patients on a weekly basis, heard about their loved experience and then basically had a group discussion with experts in palliative care about this experience to focus on humanism in medicine.
Areej: And I happened to be with three giants in palliative care, Andy Billings, Susan Block, and Vicki Jackson. And when I met them, I think they did therapy on me during medical school to process the experience that I had during college. But really got drawn to the field of palliative care from my experience with them, fell in love with who they are as humans, with their capacity to think broadly about the lived experience of patients with serious illness and how do we help support patients and families. And so at that point, I had already made a decision to go into oncology, but I transitioned from thinking that I can cure all cancers to thinking about how can I best support patients and families as they go through a really difficult and trying times.
Areej: And during my second year in medical school, everybody was saying, “You have to meet Jennifer Temel, you have to meet Jennifer Temel.” And so by third year of medical school, I met Jennifer Temel and saw in her the oncologist that I wanted to be, focused on palliative and supportive care. And she took me under her wings. And here we are, I don’t know, 10, 15, 16 years later. And as a resident, I just was drawn, similar to many oncology clinicians and fellows, to just be traumatic and difficult experience of patients with blood cancers during prolonged and intense hospitalizations, where they experience a lot of physical symptoms, emotional trauma related to the diagnoses. So it was very easy for me to specialize within oncology, to think about blood cancers as the space where I wanted to have the most impact from a supportive and palliative care perspective.
Alex: And just for our listeners, and most of our listeners will know what solid tumors are and blood tumors are, but could you just break that down for those who don’t know?
Areej: Yeah. I think when we think about blood cancers, we think about cancers such as leukemias, lymphomas, multiple myeloma. There are cancers that stem from the stem cells or the blood cells. A lot of these cancers are potentially curable with very intensive therapies, with the striking exception of multiple myeloma, that continues to be an incurable disease. And so often, these patients experience a lot of hospitalizations, numerous hospitalizations while they receive intensive chemotherapy that requires prolonged periods of neutropenia and toxicities, or stem cell transplantation, which is what I specialize in clinically now. And then when we think about solid tumors, I can have Jennifer comment on this, but we’re really thinking about more of the general cancers that everybody thinks about. So lung cancer, GI cancers, cancers that start in solid organs and often metastasize and go to other organs. Jennifer, did I do a good job talking about solid tumors? I feel like that’s outside of my wheelhouse.
Jennifer: You got an A+. I think the main distinction between the hematologic malignancies and blood cancer, maybe with the exception of multiple myeloma, as Areej said, and the solid tumors is for example, in lung cancer, I know from the start whether I have any chance of cure or not. It’s pretty black and white of a yes, no. Early stage gets treated with curative intent, although we don’t cure everybody and advanced stage doesn’t. And that’s one of the main distinctions. And to some extent, while the role of palliative care interventions is a little bit more straightforward in solid tumors, whereas for Areej’s patients, they’re always trying to cure everybody and have a chance of curing everybody. So it means they’re always in that gray zone. And it’s why until Areej was a pioneer in this area, people really weren’t figuring out how to integrate palliative and supportive care services for patients with heme malignancies
Eric: I’m going to go back in time a little bit. What year did your New England journal article come out, Jennifer?
Jennifer: It was 2010.
Eric: 2010. So if I remember that study correctly, so it was a randomized control trial that was published in the New England Journal of palliative care plus usual care, versus just usual oncological care. And the big findings were better quality of life scores, less depression, more documentation of preferences, less aggressive care at the end of life. And the kicker was they lived, what, two to three months longer?
Eric: And this study really caused quite the stir, and I think really helped push the field forward as far as, hey, we should be part of oncology teams. And I think this in particular for us here, it really helped us integrate much closer with our oncology colleagues, that it both helped with symptoms. And there was also a potential that it also may make people live longer. And then the question is what the heck was in this palliative care syringe? Can I just ask, how did you decide to do this study?
Jennifer: So that was pretty good. So you either have an excellent memory or did a lot of homework last night in preparation for this podcast.
Eric: I talk a lot about this study by the way, both of your studies. So we’re going to be talking about the stem cell one, but those are two huge studies when I think about what we’re doing here,
Jennifer: Often, when people talk about that study, they misquote the data, but that was the most accurate reporting of it I’ve ever heard. So Eric, you’re my new favorite friend. So the impetus for that study was as a re-shared we had several of the palliative care giants, the mother and father in Boston and Susan Block and Andy Billings. So being in Boston 25 years ago, we were one of the first institutions to have an inpatient palliative care team. And so again, 25 years ago, I saw the beauty of palliative care and what they were doing in the inpatient setting. But the problem was that most patients spend most of their time in the outpatient setting and if they’re admitted to the hospital, that’s really too late for palliative care to have a meaningful impact on their overall life.
Jennifer: They have a meaningful impact on what happens to them during the hospitalization and after. We know that most patients are admitted to the hospital in last weeks or months of life. So seeing all that palliative care had to offer, but seeing that they were meeting patients way too late, Andy Billings and my lung cancer mentor, Tom Lynch and I had the idea to try to move them upstream in the patient’s illness course, which meant moving them to the outpatient practice. For most of the listeners, they all have outpatient palliative care now. So that all feels like, oh, of course, that was easy. But at the time, palliative care was only an inpatient practice. They all self-identified as a hospital based practice. So actually transitioning them from the inpatient and hospital setting to the outpatient setting took years and tons of work and effort.
Jennifer: Additionally, for the palliative care clinicians, it was a totally different way of engaging and interacting with patients. So again, it’s very hard and sad to meet patients when they’re in the hospital and suffering with symptoms like pain or in the last weeks or months of life. But the palliative care clinicians didn’t have the time or opportunity to foster and develop a longitudinal relationship with patients and their families. And when you move them to the outpatient setting and you say, “Hey, let’s have you meet people from diagnosis and follow them throughout their illness course,” it’s a completely different care model. And I’m sure Alex can talk about this, since your institutions are participating in some of our early palliative care trials. The palliative care team kind of needs to learn a new way of engaging and interacting, establishing rapport, focusing on aspects of care that aren’t as relevant in the hospital. For example, coping and illness, understanding and preparing for the future.
Jennifer: It was really interesting because I thought, doing this inpatient work, it’s so hard there must be so much burnout, that when we bring the palliative care clinicians to the outpatient setting, it’ll feel much like lighter and less hard and stressful. And it was actually the opposite, that we had a bunch of folks in the beginning move to outpatient because they thought that. But because they developed such close and intimate relationships with patients and their families over months and years, that when those patients died or became ill, it was much harder for them. So it’s been interesting to see there’s certain palliative care clinicians that really gravitate to the hospital setting and then others that really thrive in that outpatient environment.
Eric: So I got a question for you, Jennifer. What do you think was in that palliative care syringe for that New England Journal study that led to those outcomes? Was it the complete package? Were there certain components?
Jennifer: Yeah. So Areej and I, and some of our colleagues, specifically Joe Greer, who’s a psychologist, spent about 15 years thinking about that and studying it. And I would say at this point we feel like we have the answer. So palliative care did all the things that they do best, right? They supported patients, they gave them a holding environment, they did symptom management, yada, yada, yada, like all the things we know palliative care clinicians do. But I think what was really that the special sauce or the magic was helping patients cope, preparing patients for their illness, enabling them to be prepared for the hard decisions that would come in the future, but really all the strategies that people need when they’re diagnosed with a terrible illness. And most people just haven’t dealt with that before. They don’t have all of those coping strategies. And I think the reason why that is, was, and still is unique is that is not a role that palliative care clinicians had in the inpatient setting.
Jennifer: Again, there’s really no coping, patients are sick, they’re in pain, they’re dying. So the reason why our palliative care team had those coping skills, which we often traditionally think is more on the purview of a psychologist, is just because of Mass General being a general hospital, palliative care grew up with a very close and collaborative relationship with psychiatry and psychology. So their practices were really collaborative and informed. So even back then, our palliative care clinicians were really using a lot of behavioral or psychological strategies to care for patients in the outpatient setting. And so when we’ve tried to scale and implement the early palliative care model to other institutions, that’s the area where we’ve had to do a lot of teaching, mentoring, and education with palliative care clinicians, because for many of them, it is a brand new skill.
Alex: Okay. I have two followup questions I have to ask here. One is when you’re talking about coping, you’re talking more about psychological coping mechanisms. And I think there’s also an element potentially here of what might be called serious illness communication or for some, advanced care planning, depending on how you define these things. You’re talking about preparing for when things get worse. And some of that is about coping and some of that might be about thinking through what’s really important, goals, values and so you feel prepared when the moments come. I’m wondering if you could maybe tease those two apart a little bit more and say this is more one than the other, or really is both, and.
Jennifer: I think they’re very overlapping constructs because in the beginning when the patients feel and many look like you and me and some of them feel like you and I do, asymptomatic, young and otherwise healthy, it’s how do you live your life to the fullest? How do you find enjoyment? How do you make decisions about work and family? How do you prioritize life when you’re facing a serious illness? So I think that feels very removed from advanced care planning. Nowadays, we do think of some of that as serious illness communication, because it’s about figuring out what’s most important to patients and assessing their goals and values, but we didn’t call it that back then. So I think there’s definitely overlap with that, but I think helping patients cope, make priorities, think through their goals and values early and along the illness course does facilitate and enable better end of life decision making, including advanced care planning. So I think they’re very overlapping constructs.
Alex: And my second thought.
Areej: I want to add to that, Alex. I think an important aspect of this that is also different than the role, for example of psychology, because we get that a lot, like why is this different than what a psychologist does for example, in practice? I think the difference here is that the palliative care clinicians are facilitating coping in the context of also cultivating illness and prognostic awareness and understanding. And those two are closely aligned. So we know that when we cultivate illness and prognostic awareness, patients make more informed decisions about their care, both in terms of their medical care, but in terms of their life decisions and their priorities and their values. And those two constructs are closely aligned in the aspects related to coping.
Areej: So coping is not just we know that we’ve seen the literature about prognostic disclosures and they’re all over the place in terms of when we tell patients that they’re dying, sometimes patients become distressed and of course, they become distressed. We’re telling them that they’re dying and they have a terminal prognosis. And so how do you actually facilitate coping with that information? How do you facilitate coping? Why are you allow a reduction in this prognostic distress? And that I think is in the preview of palliative care clinicians and not in the preview of psychologists or psycho-oncologist.
Alex: Were there psychologists on the palliative care team?
Jennifer: No. That’s a great question. So we don’t have psychologists in our palliative care team. And I think it’s a good point about when you think about implementing, scaling and disseminating these models is that in the inpatient setting, palliative care is pretty consistent across sites with respect to the makeup of the teams. But in the outpatient setting, there is a lot of variability. And for example, because MGH has always had such a strong psychiatry department and we’ve had psychiatrists and psychologists in the cancer center, they were separate. So our outpatient palliative care team does not have psychiatrists or psychologists or frankly, social workers. The model is predominantly physicians, advanced practice providers. And that’s kind of the model that again, when we’ve studied this model in other care settings, we have to force that care model on them, even though other institutions do have different makeup.
Alex: Okay. I know Eric’s trying to jump in, but I got to ask my one more question. One more follow up question about the study. When you unblinded it and saw that patients in the palliative care arm live longer, what was your reaction?
Jennifer: Am I allowed to use like a mild profanity?
Alex: You are, yes. We’re an R-rated podcast. [laughter]
Jennifer: Oh my god, let’s start all over.
Eric: I put us on PG on Apple, Alex. So be careful. [laughter]
Jennifer: All right. We were like “Holy sh*t.” But I think we have to remember that Marie Bakitas’ ENABLE II had been published before that. And like ours, she had done an unplanned because ours was unplanned, ad hoc. We have to take that at face value. She had done an unplanned analysis and had also seen longer survival with the early palliative care model. So I think there was thinking, and it’s not surprising if patients feel better and are able to be out of bed more, exercise more, eat better, do more things, we know they’re going to live longer. That part isn’t surprising, but just knowing that palliative care was the right clinicians to bring that about for patients, I think that is the surprising piece.
Eric: So I got another question. So a couple things I loved, I also loved, I forgot what journal it was, there was a follow up study that showed kind of documentation of what the oncologist did and what the palliative care team did. And it really showed it was complementing each other, which I loved, because it really could drill down into what really is in that palliative care syringe that you’re doing for us to figure out, like what’s actually working here. Now interesting, you also had a follow up study looking at lung and GI cancers. Was in Journal of Clinical Oncology and that was interesting. Improved quality of life. However, maybe in like a secondary analysis, maybe there was a difference between GI and lung.
Jennifer: Yeah. It’s so super savvy and great questions. And again, I think it helps us transition to thinking about how do we move to other diseases, like blood cancers or heme malignancies. So I think after we did the initial lung cancer work, we assumed like this worked in lung cancer, it worked great, it’s going to work in everybody that has a similar illness course, a similar prognosis of a year or two, and that it should just be plug and play. And Eric, you are correct. It was not plug and play, that we did see differences between the study groups that in that clinical trial, but it was really driven by the lung cancer patients. So it reinforced, supported the data that we had seen in lung cancer, but showed that the GI cancer population is different and didn’t experience the same degree of benefit or outcomes.
Jennifer: And we have spoken a lot about that and really honestly, haven’t figured out what was going on in the GI group, what’s different about them. How do we restart and develop a palliative care model that will work for them? Although, one of our hypotheses is that the GI cancer population, similar to the GYN cancer population, they spend so much time in the hospital that maybe the focus on the outpatient model wasn’t hitting the mark and we need to think about more care that’s focused on hospital care or transitions of care from the hospital to the home, but we’ve not explored that. But when Areej started to do her work in hematologic malignancies, we had a little bit learned from that experience and said, we really need to think about what it’s like to have leukemia, what it’s like to undergo a bone marrow transplant and design the palliative care intervention specific for that patient population’s needs to make sure it was targeted and population specific.
Eric: So now we’re getting this issue of do we have to change things for different diagnoses, different cancer? So we’re in the same cancer group. I loved Areej’s article. What year did it come out? Actually think I wrote the editorial for that article. I loved it so much. What year did it come out?
Areej: I think it was 2016. Yeah.
Eric: 2016. And I think the most, I mean we can argue like why was this paper so important, I think this was the very first palliative care trial in people undergoing curative therapy. I can’t think of one that was specifically focused on that population. For me, when I talk about your article, it really is like, hey, one of the key important things is these are people undergoing stem cell transplant for curative therapy. And we can talk about what’s different about the stem cell transplant patient. But for me, that was kind of a huge game changer. What drove you to do that study, Areej?
Areej: So I think Eric, the biggest issue is that shock factor that you talk about, actually. I think for a long time, we know that across the spectrum of our clinicians, caring for patients, serious illness, both in oncology and outside of oncology, there continues to be a misperception equating palliative care with just end of life care. And despite the growing evidence base for early palliative care integration in solid tumor early, being in the time of diagnosis of lung cancer, for example, in Jennifer’s trial, that never translated to a culture accepting of palliative care concurrent with curative therapy. And so the idea of integrating that type of care in a culture of blood cancers where these oncology clinicians had huge misperceptions about palliative care. I remember the days when I was a fellow and we started this work where literally our palliative care clinicians did not come to the inpatient oncology floor where patients were blood cancer are. They were not welcome there. They did not feel welcome there, right?
Areej: And so what a better way to really overcome these misperceptions than to change the paradigm. I entered this field wanting to actually optimize end of life care for patients with blood cancers. But if we had started integrating palliative care to try to optimize end of life care in that population, we would’ve utterly failed. We needed to build the relationships and trust and really provide a really good example of the value of palliative care outside of end of life care and advanced care planning. And stem cell transplant seemed the exact right population to do so because these are patients who are going for a curative therapy, they experience a very prolonged and traumatic hospitalization that has been shown to be associated with a lot of post-traumatic stress symptoms, psychological distress in survivors, years out from stem cell transplant.
Areej: The experience during that hospitalization, both in terms of physical symptom burden, the social isolation being in the hospital, as well as the psychological symptom burden during hospitalization, is precisely responsible for the PTSD symptoms that these patients have later on. And we know this, there are clear data showing that when these patients, you can kind of imagine when these patients come into the hospital receive the highest intensity chemotherapy we have to offer and we’ve talked to them about potentially dying from a transplant and they start experiencing these awful symptoms where they have severe nausea, diarrhea, vomiting, mucositis, where their mouth and throat falls apart, they’re automatic psychological reaction to that event is, “I am dying.” Right? And so what a better way to really bring expertise in complex symptom management, and we’re back to this idea of coping, how do we manage expectations? How do we help patients cope with that illness?
Areej: And what’s really interesting about that palliative care intervention is the focus here for our palliative care clinicians was to actually be the cheerleaders for these patients, to help them manage their expectation about what’s happening in the hospital course and tell them that “Actually, you are not dying. This is what we’re expecting. We’re aligning with you, we’re going to help you get through it as much as we can. We’re not going to make it perfect. I don’t need you to worry about dying. I will tell you if you were dying.” And so that was really what was happening on the floor of that intervention. But what this intervention allowed us to do is really be able to integrate palliative care in the context of blood cancers and overcome these longstanding barriers, cultural barriers to integration and seeing the value of palliative care in this population.
Eric: And it is really interesting because so this study, it was usual care versus usual care plus palliative care. And you weren’t covering, you know the NCP, like eight domains of palliative care? You decided not to cover all of those eight domains, right? You were focused on physical and psychological distress and symptoms.
Areej: That’s exactly right. The focus was on physical, psychological distress and managing expectation illness course and transplant course, understanding and coping.
Eric: Yeah, which is interesting, because there’s sometimes a push in palliative care, like on the initial visit, you got to hit all eight domains, you got to do advanced care planning, like we need those check boxes. So I don’t know for some reason, hit all those domains. Why did you choose not to do that, to buck that system?
Areej: Most of these patients get through the transplant hospital stay without actually dying during the hospitalization. So just to be clear, these are patients who go through curative treatment and 95% of them get through the hospital, stay and are out of the hospital and are doing fine. I also think that a huge part of the reason we explicitly avoided addressing these issues is just we didn’t feel like it was the appropriate timing to have these conversations, as these patients are psychologically are worried about dying when they actually in fact are not dying. And so the idea here was to actually say, no, let’s focus on getting you through this and make this a tolerable experience and see you through it.
Eric: How much was it also about the tolerability of the oncologist to the palliative care intervention?
Areej: I have to say that even if we replicate the study now, I really don’t think Eric, the timing for these conversations would’ve been that hospitalization. But I do think that to your point and to my point earlier, we were very intentional in choosing our first study to be in the curative setting where the focus is explicitly not about end of life care. There were two patients who died on study who were receiving the palliative care intervention and probably had some benefits from an end of life perspective while they were in the hospital. But that was certainly not the focus of the study.
Eric: I also love this study because it was the intervention occurred just during the hospital stay. Right? You were focused on symptom management and your outcome showed improved quality of life, decreased depression, decreased anxiety, improved symptoms during the hospital stay. But many weeks after, I forget the exact amount, you still saw. So this is after the intervention ended, right? They weren’t followed by outpatient palliative care?
Areej: That is correct. Yep.
Eric: You still saw improved depression, anxiety and quality of life. Although, symptoms were about the same, but that’s understandable, like their symptoms get better. Right? What the heck was in that syringe that even after the intervention ended, you still saw improvement?
Areej: I love how well you’ve really done your homework-
Eric: Man, I’m telling you, I cite these articles a lot. I love them.
Jennifer: You slept with them under your pillow last night. [laughter]
Alex: That’s right.
Areej: That’s fantastic. I think that’s exactly right. I think what the beauty of this study is established… Think about it for a second, a brief, this is a brief palliative care intervention, right? This is a four week hospitalization. These palliative care clinicians were seeing these patients twice weekly during the hospital stay and that was it. Can lead to dramatic reduction PTSD symptoms and depression symptoms six months later. And I think it goes to that point that these patients experienced during the hospital stay is really the trauma that triggers their psychological distress later on. That is the actual experience that causes trauma. And so we’re intervening directly on the trauma by palliative care clinicians to reduce that psychological distress and symptom burdening in the hospital. And that translates to the benefits later on.
Eric: Well you call it brief. It could have been briefer, right? It could have just been a one time visit with palliative care, they check in on symptoms. Maybe they talk about coping and other stuff. I just think about the JAMA article that came out on chronically critically ill patients. They did a brief one to two time visit for people chronically critically ill, talked about prognosis and then skidded out of there and it showed worsening PTSD symptoms. Kind of the opposite of your study.
Eric: And for me, that highlights, if you have a patient population with longitudinal needs, so I’m going to argue it wasn’t brief, it actually lasted during the course of their hospitalization, that matched the needs of the patient population. Versus like that JAMA palliative care, chronic critically ill patient population, it did not match the needs of that patient population. And that’s why I love Jennifer’s work too, is it’s not a one time visit. I think there was just a paper that came out on one time visit or two time visit for palliative care and outpatient for a similar population I think out of Europe and there was no benefit. And we really have to think, I think, how do we match our palliative care intervention with the longitudinal needs of our patients? That’s another reason I loved your study.
Jennifer: Go ahead.
Areej: I was going to say you set Jennifer up perfectly for her next study that I want her to talk about. But the reality is the question you’re asking Eric, what’s the right dose of palliative care in the context of an illness trajectory. We have a limited workforce, we have a limited capacity to deliver palliative care to all patients with serious illness. So how can we be more thoughtful about these care models to provide just the right dose of palliative care at the right critical points in the illness course to really modify outcomes? And those studies are being done. So Jennifer, you want to talk about step.
Jennifer: Yeah, so I think it is a good question. So I think how to apply palliative care interventions to different populations is one question. But then the other question is when we have an evidence based intervention, like the early palliative care model in patients with lung cancer, how do we tailor it to patients’ needs? Because especially in the last decade, lung cancer is a patient population that’s experienced some of the most dramatic discoveries that have changed patient outcomes. Patients are living longer, patients on novel therapies like targeted therapy and immunotherapy, not all of them, but many of them are feeling really well and do have lower or fewer palliative and supportive care needs than the old days. And so even when we have that evidence based intervention and know it should be standard of care, we need to be thoughtful about who needs it when needs it, when do they need it and how to deliver it.
Jennifer: And so we borrowed from the psychology literature and are doing a stepped care intervention in palliative care. So in stepped care models, which were developed for psychology or psychiatric interventions, where they’re also an understaffed workforce, is that all patients have some touch points with the specialty palliative care clinician, and then they’re monitored very closely. So if those minimal or light touch points are sufficient for addressing their care needs, that’s all they get. But for patients who don’t experience the benefit or worsen over the course of illness, they, quote unquote, step up to receiving more intensive, more frequent care from the specialty clinician.
Jennifer: And so we’re doing a randomized study, the standard of care arm is monthly palliative care, the standard early integrated palliative care model. And then the investigational or comparative arm is a stepped care model. So for the stepped care model, all patients see palliative care at the time of diagnosis. And then they also see them when they’re key clinical turning points, if they’re admitted to the hospital, if their cancer grows and they need to switch therapy. So they have those touch points throughout the illness course. But we monitor patients’ quality of life super closely every six weeks. And if their quality of life drops by a certain threshold, they step up and start receiving monthly palliative care. That study is almost done. It’s enrolling patients at MGH, Duke and University of Pennsylvania, and we have about 40 more patients to go and it will be done.
Alex: Great. We’ll have you on again.
Jennifer: That sounds good.
Alex: Speaking of having these other sites. So one of the critiques that I’ve heard about these studies is they occurred at man’s best hospital, MGH, crack palliative care team. We’ve had Vicki Jackson on. Please tell us to what extent or believe that this was due to just having outstanding, world class, palliative care, clinicians and oncologists at MGH, and what the challenges or opportunities have been as you’ve tried to disseminate this model outside of Boston?
Jennifer: I think it’s such a complicated question. So yes, we are not helping 99% of the US population if we only study any intervention, whether it’s a cancer treatment or supportive care intervention in a very select population. But we need to start building an evidence base. And for the most part, it’s really hard to start building an evidence base in the community setting. So I think we’ve started with the academic setting to get the proof of principle, figure out what the intervention is. But you are absolutely correct, now we need to start disseminating these evidence based interventions to other places, other care settings.
Jennifer: I would say we are still trying to disseminate this evidence based intervention to other academic settings. So as you know, we’re doing a 20 site randomized trial of a video delivered versus in-person delivered palliative care. And that’s also at the top 20 academic sites in the country, including yours. And we’re really struggling to deliver the palliative care intervention, even in that study at those sites. So I think until we figure out how to deliver these evidence based interventions in resource intense places with individuals like you, who are committed to research, committed to furthering the science, it’s really hard to think about how to disseminate them to the community. But we have to. Most people aren’t coming to UCSF or MGH for their healthcare. And I will transition over to Areej, but one of the ways that we’re trying to do that is to use technology and mobile health platforms so that we can disseminate these types of interventions when patients don’t have specialty trained palliative care clinicians, psychiatrists, psychologists available.
Eric: So let me ask you real quick before we turn to Areej. JAMA study just came out an electronic symptom monitoring for people with metastatic cancer showed improvement in their symptoms and quality of life. Do we need specialty palliative care? Can this just be done by a electronic symptom monitoring program?
Jennifer: Well, just like we shouldn’t make cross trial comparisons in therapeutic trials, we probably shouldn’t do them for supportive care trials. But I’d say that this is just about building the evidence base that we need to do better, that just having patients see their oncologist, come in for chemo, follow up with us is not the optimal way to deliver comprehensive cancer care. So I think all of these studies are just telling us that we need to do better. And I think there’s a lot of ways to do better. Obviously, I don’t think that symptom monitoring is the same as you wonderful people coming in and taking care of patients and their families. But I think thinking about combined models of care, like can we use palliative care resources if we’re monitoring patient symptoms? And I do think that is the way of the future.
Areej: I want to add to that I think a huge part of what we are learning, both whether it’s from the specialty palliative care intervention trials and the context of solid and heme malignancies. It’s really what we feel like based on the evidence, are the active components that we chatted about of palliative care. And I’d say electronic symptom monitoring is another act of component of supportive care. And the way I think about it, Eric is that there are different resource settings where we can combine various aspects that we think are critically active components of how we support patients and families to deal with their illness. And there may be places where access to that specialty palliative care is simply not an option. And you can think about electronic symptom monitoring and even taking components, the active components of specialty palliative care and integrate them into a primary palliative care model where we train oncology clinicians to do better.
Areej: One of our studies that we had just started is doing exactly that, is trying to learn what we learned in integrating palliative care in the context of leukemia population and now training oncology clinicians to take those active components of the specialty palliative care intervention and integrating them into the care of patients with leukemia.
Areej: And so similarly to Jennifer’s point, I think some of these active components allow a potential for digitizing palliative and supportive care. And so the idea of thinking about strategies, innovative ways to take these active components and creating a digital platform that allows patients a patient centered self-pacing approach to really think about their illness. They can be population specific, they can be tailored to the illness trajectory, to your point, and we can modulate the dose and get a sense of the dose of this. So I think that’s where we are heading and is that we are able to provide, let’s say a portfolio of palliative and supportive care services, but where our ability to deliver the care that we deliver at MGH may not be generalizable to everywhere and at the same time, we can learn important lessons from trials done at MGH and elsewhere and take those active components and integrate them in innovative ways to ensure that we reach the globe.
Eric: Yeah. What’s next for you, Areej?
Areej: I briefly mentioned, I think personally, my passion is thinking about the idea of digitizing palliative and supportive care. How do we take what we’ve learned so far from palliative and supportive care trials and thinking about innovative solutions to really think about digital therapeutics as a strategy for the future. And within the context of blood cancers, I’m very much interested in understanding whether primary palliative care, specifically training oncology clinicians to address the palliative care needs of patients with blood cancers can at least meet some needs of this patient population, similar to Jennifer’s idea, there may be a subset of patients who would do just fine with a primary palliative care intervention, but there are others who require higher level needs.
Eric: I think one of the challenge I can imagine with primary palliative care is you can train physicians to do something, but if you don’t change the system and the structures of clinic and the incentives for how you get paid, it could be potentially very challenging to really Institute good primary palliative care, and probably the reason we keep on seeing negative primary palliative care trials.
Areej: Completely agree. And I also think that in some ways, blood cancers is the right place to do this because, because of the inpatient aspects of the care and the capacity to potentially think about a wider system of clinicians caring and having touchpoints with this population, to be able to really deliver an inpatient primary palliative care intervention.
Eric: Well, I want to thank both of you for joining us today. I know we’re running out of time. I know both of you really want to hear Celine. And Alex is super excited to do a little bit more of Celine Dion.
Eric: I’m surprised you didn’t pick My Heart Will Go On.
Areej: I have to say, I’d like to dedicate the song to Dr. Jennifer Temel. That was the choice here. [laughter]
Eric: You can always tell how much Alex loves a song by how long he sings it. I just want to know that, that was a very short ending compared to some of the others that he does.
Alex: No, I actually do really enjoy singing this. But if I was going to go big, it would’ve had to be really long. That was a fun choice. Thank you, Areej.
Eric: Well, thank you both for being on the GeriPal Podcast, it was very much appreciated. And thanks for the amazing work that you do.
Jennifer: Thanks so much. And even if this show is after this week, go Celtics. Down with Golden State. [laughter]
Eric: We will send you some electronic coping strategies. [laughter]
Jennifer: Yes, I may need therapy…
Eric: That must be really hard to have lost that game. [laughter].
Eric: Thank you Archstone Foundation for continuing support and to all of our listeners. Thank you.