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In a JAMA 2020 systematic review of palliative care for non-cancer serious illness, Kieran Quinn found many positives, as we discussed on our podcast and in our editorial.  He also found gaps, including very few studies of patients with lung disease, and little impact of trials on quality of life.  The article we discuss today, also published in JAMA, addresses these two gaps.

David Bekelman conducted a RCT of a nurse and social worker telephone intervention (ADAPT intervention) for people with heart failure and lung disease (COPD or ILD).  David has been conducting outpatient trials in this space for some time, such as the CASA study he mentions today, learning important lessons along the way.  This is the first study that is unequivocally positive, improving overall quality of life and depression.  Today we unpack this study, with the help of Lyndsay Degroot, a postdoc and nurse researcher focused on identifying the core aspects of the study and eventually testing the study in more diverse populations.  In the accompanying editorial written by Ashwin Kotwal, Lauren Hunt, and the guy singing on today’s podcast, we talk about the strengths and limitations of this study, something we “get into” with the authors toward the end of today’s podcast. We are also joined by Diah Martina, a palliative care doctor trying to grow palliative care in Indonesia, in part by starting a palliative care podcast in Indonesian (she was observing today).

You can also listen to an audio interview with Alex and JAMA Deputy Editor Preeti Malani about this study and the other RCT of default palliative care for hospitalized older adults with noncancer serious illness published in the same issue. Stay tuned for a GeriPal podcast with the authors of the other study next week.

Credit to my wife Cindy for piano on the audio-only version of Ben Rector’s The Best is Yet to Come. Enjoy!



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Moderators Drs Widera and Smith have no relationships to disclose.  Panelists David Bekelman, Lyndsay DeGroot, and Diah Martina have no relationships to disclose.

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Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: We are delighted to welcome David Bekelman who’s a palliative care physician and researcher at the University of Colorado School of Medicine Anschutz Medical Campus. David, we’ve been wanting to have you on for a long time. You finally have a positive study, and we’re ready to talk with you. That’s not the reason, by the way, that we select people to be on the podcast.

Eric: We like negative studies, too.

Alex: We do. We learn as much from what doesn’t work as what does. Welcome to GeriPal, David.

David: Thank you. Thank you for having me.

Alex: And we’re delighted to welcome Lyndsay DeGroot, who’s a nurse researcher and T32 postdoc at the University of Colorado Anschutz Medical Campus. Welcome to GeriPal, Lyndsay.

Lyndsay: Thank you so much. It’s an honor to be here.

Alex: And we’re also delighted to welcome Diah Martina, who’s a palliative care doc and physician researcher in Indonesia, who wants to start a podcast in Indonesia about palliative care, and she’s primarily observing today and also attending the ASCO GI conference here in San Francisco. Welcome to GeriPal, Diah.

Diah: Thank you so much.

Eric: I am super excited about this one. We’ve got a lot to talk about. In particular, a lot of our focus is going to be talking about palliative care and COPD, heart failure and interstitial lung disease, spurred on by a JAMA paper that was just published this week, Nurse and Social Worker Palliative Telecare Team and Quality of Life in Patients With COPD, Heart Failure, or Interstitial Lung Disease. Big randomized control study that came out. Important implications. But before we jump into that, I think somebody has a song request. Is it you Lyndsay?

Lyndsay: I do have a song request for you, Alex.

Eric: And what is that song?

Lyndsay: The song is, The Best Is Yet To Come by Ben Rector.

Eric: And why’d you choose that song?

Lyndsay: I think a couple of reasons. First of all, I love Ben Rector, so he’s my go-to. But I think, first, it’s really great for the new year, thinking about all the new things that are to come in 2024, but also thinking about folks who are adapting to living with serious illness that you never maybe thought you were going to have to deal with it that, that hopefully, as they enter new seasons, as they’re living with this, that the best is yet to come for them in terms of their care and their quality of life.

And finally, too, as a new researcher and postdoctoral fellow, I’m hoping that the best is yet to come for palliative care, research, and work. And there’s so much to look forward to in helping people live their best lives. So, I’m really excited to hear the song.

Eric: I love that. And anytime we’ve invited University of Colorado folks, in particular, Dan Matlock, he chooses a very challenging song for Alex to sing, and it seems like it’s a theme. Alex, is this going to be challenging on one hand, on a piano?

Alex: Yeah, I still have a broken hand. Hopefully, next week, I’ll be released and have two hands that’ll take a while to recover. So, this is the challenging piano part. So, my wife is playing the piano, Cindy Shu, who’s played piano before on this podcast. For those of you who are watching live, you get to see me sort of fumble through this on the keyboard. Here’s a little bit of The Best Is Yet To Come. Great song.


Lyndsay: Amazing.

Eric: And more of that song at the end.

So, Lyndsay, I’m going to actually start off with you. Your research is a lot in this patient population, right? In heart failure population?

Lyndsay: Yes. That’s right.

Eric: Why’d you get interested in heart failure and palliative care?

Lyndsay: That’s a great question. Well, originally, I was an ICU nurse before I decided to enter the research field, and really noticed that most of my patients were older adults with multiple chronic conditions, especially heart failure, COPD, kidney disease, and just saw that they were particularly struggling with a lot of really complex symptoms and taken a toll on them emotionally, on their caregivers. And I really wanted to know how could we improve care for this population, not just one at a time, where I was taking care of them one at a time, but from more of a population level.

And so, three years of seeing over and over people having really difficult end of life experiences in the ICU, not being able to advocate for themselves, a lot of trauma for their families, I just thought, we have to do better than this. There has to be more than this. And that’s when I started to learn about palliative care, as a clinician, and really didn’t see them around a whole lot with my patients and started advocating for them to be part of their care. And that made me think more about, they’ve been dealing with these illnesses for many years before we even met them in the ICU, and why aren’t we doing more of this care where they live? In their communities? With their regular providers? And so, that’s how I got interested in doing this in the outpatient space, and heart failure, specifically, because it’s one of the most common diseases in older adults.

Eric: How about you, David? Why this particular population?

David: Similarly informed by my clinical experience, really, actually, beginning in residency when I took care of a lot of sick folks in the hospital, particularly those with cancer and heart and lung diseases like these. And I found with cancer, we were already embracing a whole person model, where it was the person with the illness and their family, yet, still, at that time, with heart failure and lung disease, all the guideline indicated therapies were coming out, and drugs, devices, and I just felt we really weren’t serving people with these conditions well by not taking care of them as people, but rather taking care of their diseases.

So, that’s what got me interested in heart failure and in lung disease. I was really passionate about helping the people and also their families. Let’s say, family-centered care for heart and lung disease wasn’t really going on a few decades ago. So, yeah, I was hoping to make some changes around that.

Eric: So, let’s talk about that change. So, you actually just got a first author publication, JAMA, looking at a nursing and social work intervention in heart failure, ILD, and… What was the third again? COPD. Why did you decide to do this study?

David: People with these illnesses suffer from persistent symptoms, poor quality of life, depression, anxiety, despite all the great things we do and all our colleagues in those specialties and in primary care and geriatrics. So, again, despite conventional therapy, they still have poor quality of life. So, I spent a number of years trying to figure out, what are the key determinants of quality of life? How might we help this population? And really learning from them about what kinds of things healthcare might provide, that might be of help to them.

Eric: And I think I mentioned at the beginning, you’ve had some negative trials in the past as well. I don’t know if that was also a part of your learning experience in developing this study, as you’ve learned from those prior studies.

David: Yeah. I mean, I’d say, all those trials were mixed. I mean, in one, we actually improved survival, so I sort of doubt that that was really true or not but… Yeah, we’ve had mixed trials with improving some and not improving others, and definitely-

Eric: In this population or a different population?

David: Actually, two were heart failure. Both of the prior ones were heart failure, at least the larger trials. I’ve done smaller trials in COPD and ILD. Yeah, definitely learned from those, I would say, that this intervention built on our CASA trial, and I’m happy to talk more about that, for sure. We learned a number of lessons from that trial.

Eric: Can you briefly describe what was that trial?

David: Yeah. So, it was a similar health delivery model with collaborative care, another nurse, social worker team, and we tested the effect of this team on disease specific health status in people with heart failure, and found that we didn’t influence disease specific health status, we had some effects on… We improved depression, looked like anxiety improved a bit, and then there were some other negative outcomes and symptoms. And I guess, I’d love to tell you what we definitely learned from that. I guess, part of it is, when you do a pilot study, you’ll learn a little bit. But when you do a large trial, you learn a lot.

So, with that trial, we made a number of changes. We changed the intervention significantly. The original CASA trial was really focused on depression, and we talked a lot about depression, and we found that people didn’t… Even though they may have had depression symptoms, have had depressive disorders, they hated the word depression. They just did not want to hear about depression. So, we actually dropped the word depression from all of our study materials. That was a big change. We also had changed up some of the modules and the counseling intervention, and made it much more flexible and tailored to what people thought they really needed.

Eric: Let’s talk about this current study that was just published. I’m going to start off by asking… Let’s drill down on what you actually did, and we’ll have time to talk about what you found, did it work? I think Alex already gave the headline. If we can dichotomize a negative-positive, which may be a question on our next podcast.

Alex: Yeah, we’ll be discussing that.

Eric: In this study, I’m going to start off with… So, we talked about who you enroll. So, people with ILD, heart failure, and COPD.

David: Yeah, let me say a little bit more about that. A lot of our trials, I guess, some of them have been negative because we have enrolled people with diseases. This trial was very intentional in enrolling people, not only with these conditions, they also had to report poor quality of life. So, I think that was a major difference. And also-

Eric: Did you do that because of the ceiling effect? Like, you can’t really improve good quality of life?

David: Exactly. Exactly.

Eric: Same thing, right? Mood, too, was an issue. If I remember correctly, I think the average was, people were screening positive for depression in this study. Actually, we’ll have a podcast coming out in a couple of weeks on behavioral health in palliative care.

Alex: Yeah, two psychologists talking about psychological issues in palliative care and geriatrics.

Eric: And I learned because we just recorded that podcast, that the vast majority, the majority of randomized controlled studies in palliative care exclude people with significant behavioral issues, including depression. And it sounds like you did not do that.

David: We did not. We had done that in my prior CASA trial and found that, first of all, it doesn’t end up excluding a lot of people, and second, people are able to participate in research and intervention. I mean, they’re appropriate to enroll, I think.

Eric: Yeah. And I love the podcast that we did because it really highlights… We pride ourselves in palliative care, and focusing on physical, psychological, social, and spiritual suffering. And if we just exclude a whole category of people with psychological suffering from our randomized controlled trials, are we really living the best of ourselves?

Alex: Right.

Eric: Yeah.

David: Yeah, yeah, I agree. How does that make sense?

Yeah. The other thing that we did is we enrolled people at high risk. People had to be in the top 20th percentile of risk for being hospitalized or dying in the next year.

Eric: How’d you figure that out?

David: We used the VA specific care assessment needs score, which-

Eric: Oh, the CAN score. Yeah.

David: Right.

Eric: VA people will know what that is. Yeah.

David: Yeah. It used to be a much more complicated model. However, its main predictors are age, comorbidity, and healthcare utilization.

Eric: Okay. And then, you chose for the intervention to include a nurse and a social worker. Were these palliative care trained nurses and social workers?

David: They were not.

Eric: Did they get any training?

David: They got training. These were general medical nurses or social workers. We trained them for about eight hours or so each, and… Yeah. So, the training was largely around… It was different for the nurse. It was around helping communication, and really focused on our nursing manual, and particularly around these guidelines for assessing and managing symptoms. And for the social worker, it was a structured counseling protocol based on interpersonal and behavioral activation therapies.

Eric: Oh, wow. It sounds like this was a primary palliative care intervention. These were not specialists in palliative care.

David: That’s correct.

Eric: Why did you choose that instead of getting a specialty palliative care team involved?

David: I wish we had enough palliative care specialists to care for all the people with chronic illnesses. We just don’t. I mean, particularly, all the organ failure illnesses, like the ones we studied here, like heart failure and chronic obstructive pulmonary disease, these are common causes of illness stability, morbidity, mortality in older adults. And yeah, there’ll never be enough specialists to care for this population.

Eric: Lyndsay, I’m just kind of turning to you. As a nurse, how challenging would it be to do eight hours of training and jump into this complicated world?

Lyndsay: Yeah. I think that’s a great question, and something David and I talk about a lot as we’re thinking about how is this going to be feasible and next steps that could come out of this work. And personally, the kind of nurse that I am, this is exactly the kind of thing I would want to be doing, as a nurse. This is the kind of care I would want to be providing to my patients because we are the ones in the room with them all the time, if we’re talking about bedside nursing, right? We are there, through thick and thin. We are there helping them do everything, from taking their meds, to going to the bathroom, to having goals of care discussions. We’re doing all of those things. And you really get a very unique glimpse of their needs that they have, and that’s just in a couple of days of caring for them. And just imagine what that looks like at home.

And so, for me, I actually think there’s a lot of nurses that would be really excited about this kind of training, and saying, “This is a way I can use my full nursing skillset, my full license. I’d be operating at the top of what I’m capable of doing, to provide really tailored and individualized care for my patients and their care partners, where they are. And in the community, not just in acute care”, which is just… First day of nursing school, they’ve told us, “You have to remember that a hospitalization is a blip on somebody’s screen. They’re mostly living at home and living their lives in the community.”

And so, I do think that it would require significant commitment to do this, but I think there are a lot of nurses out there that would be really interested in being involved in this kind of work.

Eric: And it’s interesting, it’s not just eight hours of training, right? It’s eight hours of training, and the nurses followed specific algorithms, and they had support from others, like a palliative care physician. Is that right?

Lyndsay: That’s right, yeah. And I think, if you think about, at least from my perspective, nurses love all the letters behind their names. We joke about this a lot. But we put in a lot of extra time to get certified as a… I’m a certified nurse educator, my twin sister is a certified emergency department nurse. We want to put in that time to have the expertise to care for our patients well, and you’re not necessarily always being incentivized to do that, but you want your practice to be better. But this kind of a role really could be a full-time role for a nurse. This isn’t necessarily an add-on role. But when we think about people that are doing this work in various settings for older adults, I think it couldn’t be incorporated well.

Eric: I want to ask a question about, while we’re on the topic of nursing, my read of your papers, you had basically one nurse who did the visits both in Colorado and in University of Washington. Or telephone calls, I should say. I remember… I guess, I could say this. I’ll say it. So, there was this study called, Acute Care for Elders, where they developed these specialized units and they had specialized attention to multidisciplinary geriatric domains for inpatient hospitalized older adults, and they showed great outcomes. And one of the keys that sort of not publishable, because it’s kind of hard to put in a publication is that… I think it was, a nurse practitioner was just a fantastic human being, exemplary, the best you could possibly have.

And one question is, would this be true elsewhere? And subsequent studies of ACE units have also shown great results. So, that’s a relief. Does that occur… I mean, I’m sure that you want to say that the nurse on this team is absolutely fantastic as well. Do you, in your heart of hearts, believe that this is disseminable and would work with other nurses?

David: So, you’re saying, “Oh, it was just one great nurse that led to the positive outcomes in this trial?”

Eric: Could be. I mean, there was also that critique of Jennifer Temel’s work, done at the MGH with one of the best palliative care services in the world. Is this going to apply to other settings? I don’t know.

David: Yeah. I mean, I guess, a couple of things on that. Remember that this wasn’t just a nurse, this was a multifaceted intervention. I guess, going back to your question, Eric, the reason we chose a nurse and a social worker was to really target not just the medical stuff, but all the psychosocial stuff. And so, we had really equal work done by the nurse and the social worker, so I think that’s critical.

And then, the other thing is, as you noted that… So, I think the nurse, social worker dyad or team was a key difference in this intervention, along with a team of doctors who provided support, yet didn’t provide any direct patient care. So, it was really a multifaceted intervention. We did have a number of different nurses. Yes, one did provide a lot of the care. I guess, I’d say, we structured our intervention to reduce the person specific effects. So, we qualified things in treatment manuals, we did a pretty rigorous fidelity check. Sure, some people may be a better fit for this role with their interest in expertise. They may enjoy one-on-one communication or nursing helping rather than procedures but… I don’t know. I have doubts that-

Eric: You should probably select that person, anyways, if you’re going to try to do this at your site, not choose the person who doesn’t like people.

Alex: Right.

Lyndsay: Exactly. That’s what we talk about a lot is, if you’re going to interview someone for a job, you’re going to pick the person that makes the most sense with the types of skills and role that they’re going to be filling. But I do think that this is a very typical role for a lot of RNs. It’s some of our basic skillset is, you have to be a person who can really pull all the pieces together, get to know someone, build trust with them, and then also know how to pull lots of resources together to help them. That’s something that we do naturally, I think.

Eric: And I love this study, because it is. If you read through the methods of the intervention, you really get a sense like, you get a first call with the nurse, the first call with the nurse, the patient gets to choose between talking about pain, breathlessness, fatigue, sleep disturbance or depression. You target those interventions. There’s algorithms to follow for the nurses. So, it feels like it’s already thinking about dissemination.

David: We were, yeah. I guess, I’d seen a lot of successful or not successful programs, disseminated or not, and I really wanted to structure this in a way that would help ease implementation and dissemination.

Eric: Yeah. And then, speaking of that… I know we usually should talk about dissemination after results. Is there a plan to make some of these algorithms publicly accessible?

David: I mean, if people want to contact me and get them, sure. But I want to remind you that that’s a small part of the intervention. That was just one part, right?

Eric: Well, I personally love that, because I kind of want to see… When I care for ILD patients, “Oh, I can turn to this thing. We have some evidence base behind…” Because it wasn’t just the nurse, it was the whole thing, right?

David: Right.

Eric: And the algorithms are part of this whole package.

David: Right. Right. And I think if people want to see them, sure. You’re not going to be surprised. I think one of the things that got done was, again, with this care delivery model, which I might mention, is the collaborative care delivery model that’s been tested in like 70 randomized trials. So, it’s a very effective care delivery model. You have nurses and social workers, and in our case, a nurse following up on specific things and addressing the whole guidelines. So, I think that’s one issue. We, as physicians or NPs, in a visit, we target this, that, but following up on every single thing was, I think, a key thing that differentiated this.

Eric: Yeah. And I got to just want to say one plug. I know we’re talking about primary palliative care interventions. But as somebody who has a specialty outpatient palliative care team with a nurse, a pharmacist, a physician…

Alex: Social worker.

Eric: Social worker, mental health, I think we can actually learn from our team because we’re starting to embed with ILD clinics from this intervention, too, and from these algorithms, and from kind of what you’re doing. How do we effectively use a social worker, not just for traditional things, but also for that therapy component, too?

So, I just want to say, if I find out in the next section that it was a positive study, which Alex alludes to, I may want to incorporate some of this stuff into our own service.

Lyndsay: Yeah. And I think what really drew me to this work, too, and coming to be a postdoctoral fellow working with David is, I feel like this intervention is really drawing on the strengths of every single team member, what the nurse is good at, the social worker, and then also the physician, primary care, palliative care, cardiology, pulmonology. We’re pulling from everybody’s expertise, and then having frequent contact with the patient to be able to actually implement some of these recommendations and resources that we’re suggesting, instead of just sending them home with it and there’s no follow up. So, I really like that component a lot.

Eric: Yeah. Okay. Should we jump to-

Alex: Yeah, let’s get to the results.

Eric: … did it work?

Alex: Did it work?

David: Success? Yeah, I was delighted. I mean, as you said, I’ve been doing a number of these trials, so it was nice to actually finally have one with… Well, it looks like uniformly positive outcomes. So, it was super exciting. And not just statistically significant, but clinically meaningful. Most of the measures we use, at minimal clinically important differences that are established, and we met most of them.

Eric: And your primary outcome was what?

David: Quality of life measured by the Functional Assessment of Chronic Illness Therapy-General or FACT-G, which is a measure that’s been used in a number of our trials.

Eric: Yeah. And what’s the range in that one? Is it a…

David: It’s zero to a hundred.

Eric: Zero to a hundred?

David: Yeah, a hundred-

Eric: And what’s a clinically meaningful difference in the… Is it FACT-G?

David: Four.

Eric: Four? And what did you find in this study?

David: At six months, we had… Oh, gosh. I think it was like four and a half.

Eric: Huh?

David: 4.6. Yeah. And what was interesting was that, again, the point estimate, it actually grew at 12 months, it was even higher.

Eric: So, the primary outcome was looking at six months, but at 12 months, it was even higher than that?

David: Yeah. Our primary outcome was six months. But yeah, we checked 12 months and it was even a greater difference.

Eric: Any second year outcomes that you want to highlight, too?

David: Oh, yeah. We improved depression, and the effect sizes of all these were in the 0.4 to 0.5 and a little over 0.5. So, depression measured by the PHQ, anxiety measured by the GAD. We also saw improvements in disease specific health status for both heart failure and COPD.

Eric: I’m going to ask both of you, what do you think contributed… I mean, oftentimes, when we think about these palliative care studies, if it’s a positive study, if it’s a negative study, what’s in the palliative care syringe that did this? In this case, what’s in that primary palliative care syringe that did this? Can we tease that apart or is it this whole package that you got to deliver?

David: I mean, based on the science, it was the package. We’re doing a number of work. In fact, Lyndsay’s doing some work to help figure out what exactly happened so we can describe that. I guess, I’d say, and I said this in the article, we saw more movement on the FACT-G subscales of social and emotional quality of life. So, perhaps, the psychosocial component as well as focusing on depression and anxiety, both through the counseling and through medications, may have contributed. But I think it was the package, and I want to go back to this social worker, nurse dyad. I really feel like focusing both on disease specific palliative, as well as how to live with what you got, the combination of those things is, I think, what likely helped.

Eric: And just real quick, how often were they working with the palliative care specialist?

David: They met with a primary care clinician and a palliative care specialist once a week.

Eric: The nurse and the social worker did? Not the patients?

David: Yes. And they talked through their caseload, and the docs reviewed the medical record, and we had, as needed, pulmonologists and cardiologists come, too. So, the docs actually wrote orders for tests, medications, consults. And Lyndsay can share some of that, if you’re interested. She’s looking at exactly what was done.

Lyndsay: Yeah. Interestingly, David’s team tracked very closely exactly what was delivered for every participant throughout the intervention, so we’re able to look a little bit more closely at what was really in that syringe. With these complex interventions, sometimes, it all gets mushed together, and we’re able to kind of pull some of those pieces out. Some of the interesting things I’ve found, so far, we’re still working on this, is most of the visits really covered a range of topics. The modules were very structured, but when they actually discussed them, the patient in those team meetings, so the nurse, the social worker, everyone together, it was talking about anything from a new symptom that’s come up, management of an existing symptom, to a patient was hospitalized or went to the ED, following up with them on what happened there, what resources did they need.

I think one of the really cool things as well is that, the team came up with recommendations, as David mentioned, and it was really connecting them with existing resources. So, that was anything from community programs that were happening both locations, to a sleep clinic recommendation, to pulmonary rehab, cardiac rehab, mental health, specialty palliative care, PTOT. There were a lot of those kinds of recommendations being made, and then the nurse and social worker would actually help the patient make the initial contact, make an appointment, whatever it is they need to do, and would follow up with them on how it went. If it didn’t happen, why not? What can we do to help them?

So, I think it really leveraged also existing infrastructure. We’re not reinventing the wheel. We weren’t providing physical therapy or providing mental… I mean, we were doing some mental health care, but it was really using what we had available in that space. So, I think that’s really exciting as well. And some of those programs were VA-specific, some exercise programs in the community, and other things were just working on improving their CPAP use. That was something a lot of patients wanted to do, or helping them when they’re exercising, that they can feel better while they’re doing that.

So, I love how tailored and individualized it was, and that’s what this process evaluation is really showing us, so far.

Eric: I love that you’re doing it because… I mean, we brought up the Jennifer Temel study. This is a big palliative care study. Not the first, but a big palliative care study looking at a positive intervention. But while that study was great, the study that I loved the most was the follow-up to that study, to show exactly what they did.

Lyndsay: Exactly.

Eric: And to show, some of the things like advanced care planning, you don’t have to do on the first visit. That’s not an evidence-based approach. In that study, that happened later on in the course of the care. So, I love the fact, Lyndsay, that you’re looking into this.

I guess, one question, if I was a cynic, if I was to think about this like, your big pharma trying to sell me something, and I’m trying to poke a hole in this article, how much of this is that, the patients that got the intervention just got a lot of attention? It doesn’t matter what kind of attention you give, they just give a lot of attention. And attention, by itself, is the thing that helps with some of these scores.

David: I mean, since we had usual care as our comparator, I guess, I can’t scientifically say, “Well, it was definitely this or that.” I mean, when we asked patients what was helpful and we’ll be publishing work on that, they didn’t just say, “Oh, I loved hanging out and spending time chatting and kibitzing with the nurse. And gosh, the social worker, yeah, she was nice to talk to.” We heard a little bit about that, but that’s not a lot about what we heard. We heard like, “Oh, they really asked me about what’s important to me and what kind of goals I had, and they helped me achieve them.” Or others said, “Gosh, this was a really dark time in my life.” I mean, some were contemplating suicide and hooking me up with mental health, or this module on understanding and accepting my illness or pacing myself. I mean, if you ask the patients, it wasn’t that.

Eric: That’s a great answer, for me. Again, double, triple kudos to the fact that you’re not excluding people with significant psychological distress.

I want to turn to Alex now. Alex was a co-author on an editorial on this paper. It was linked to the Tale of Two Cities.

Alex: Yeah, A Tale of 2 Palliative Care Trials, although JAMA sadly make us take out the extended Charles Dickens quote we had put at the beginning. It was the epic of despair. It was the epic of incredulity. It was the…

Eric: And Alex, we’re going to be having a podcast next week on the other paper, in your editorial.

Alex: Yep.

Eric: When you first saw this paper come out, because you saw it before, pretty much, anybody else, except for the folks on the call and the people in the study. What were your thoughts when you saw it?

Alex: Initially, when I saw this improvement in the FACT-G, like a hundred plus point scale of four points, four and a half points, I thought, “Oh. Well, so what?” Right? So, I wrote this with Ashwin Kotwal, he is the first author, and Lauren Hunt is the second author. And Ashwin did a deep dive. Deep. He went deep into the FACT-G-

Like, “Does this matter?” Right? And it is a minimally clinically important difference, as you said. But even more, it takes a lot to move this scale. And it turns out that, to move it on the level of which you saw it move in this trial, is actually a really big deal, and you need some much interventions that require many more resources than what you did in this particular study in order to move it in other trials. So, we were-

Eric: Then why didn’t you say that in your editorial? Come on. [laughter]

Alex: It was in there. It might’ve been a small line, but… [laughter]

David: I don’t remember that. [laughter]

Lyndsay: David’s going to write an editorial in one of your papers, he’ll remember that. [laughter]

Alex: That’s right. That’s right.

David: Yeah. Let’s just omit that the editorialist thought, “This is great.”

Eric: Did you read his editorial, David?

David: I did.

Eric: What did you think about it? Oh, now, we’re going to get into some back and forth.

Lyndsay: This is the juicy stuff.

Eric: What did you think about the editorial, David?

David: I thought it was good. I enjoyed it. I mean, it did remark that this had positive outcomes and a number of positive outcomes. And yeah, I guess, what I liked less was just the major concerns they had, which were… I mean, we already talked about the one nurse issue. I think this whole mantra we have about, can this be implemented? I guess, actually, Alex, you didn’t talk a lot about cost or hospitalizations or cost savings. You did a little bit, didn’t you?

Alex: Yeah, we had more about that, but we couldn’t fit it in the… There’s a lot that ended up on the cutting room floor. Yeah.

David: Okay. Okay. I guess-

Eric: Do you have any cost and hospitalization data?

David: Well, in the paper, we just reported the blunt measure of number of hospitalizations and saw no difference. I guess, if I were to do this again, and maybe this is a next step, is to really look more at things like days at home, ICU use, which we did not look at.

That said, I guess, I, myself, am a little skeptical. I mean, I understand why our health system is what it is and all this cost savings and talk, yet we have some extraordinarily expensive drugs and devices that we pay for.

Eric: Aducanumab [laughter]

David: Exactly. And so, we did measure cost of this intervention, and we’ll be reporting on that. And so, compared to some third-line chemotherapy or that particular drug, I mean, gosh, I don’t think we’re making reasonable comparisons here, particularly the breadth of the effects we saw, not only on quality of life, but on depression and anxiety and disease-specific health status.

Alex: That’s great. Yeah, I think we’re on the same page here. We love this intervention because it improved the patient-centered outcome, quality of life. Ultimately, that’s the core of palliative care, is that we help improve-

Eric: It’s not decreasing hospitalizations at the core of what-

Alex: It’s what we had, right? It’s not decreasing length of stay, it’s not… But we went into this field to help people improve their quality of life, people living with serious illness, and that’s what your intervention does. So, that was remarkable. And in order to disseminate it, I think this was a point we made in the article, you have to show cost savings or some sort of cost neutrality, at least in order for health systems to pick it up and for it to be disseminated. And so, I’m excited that you’re doing the other work.

I will say, the other critique we had in the article was around generalizability. Interested to hear what you and Lyndsay had to say, given that you’ve identified over 2000, I think, patients who are eligible, but there were only about 300 patients in the study. So, there are a lot of patients who didn’t participate. And those who did, of course, as a VA system. So, it was white, male from two particular areas of the country. And so, there’s a lot of room here. If you solved it all in the first try, you’d be done. You’d be out of a job. So, there’s a lot for you and Lyndsay to do in the future in order to show that this is disseminable, it’s scalable. And maybe we should get there as we’re coming to the end here, but what do you think the next steps are for this work?

David: I don’t know. Lyndsay, do you want to talk a little bit about that?

Lyndsay: Sure. Yeah. For me, as a postdoc, and hopefully moving into a faculty role in the future, applying for future grants, I’m really interested-

Eric: Just put in the GeriPal podcast in your CV and everything-

Lyndsay: We’ll just put it on the CV. Absolutely. I think that’ll catch the most attention of anything on my CV. But I’m really interested in how might this work in our local healthcare system or setting. And so, for us, we have an academic hospital affiliation. How might it work within that context? I came from Johns Hopkins, and being in Baltimore City, I think a lot about, what about this intervention would work well in a setting like Baltimore that might be quite different from somewhere like Denver? What refinements might need to be made? But even more so, I think it’s really about, what strategies do we need to implement, something like this intervention, in a new context, and making sure that we have additional patient diversity in terms of different diseases? We included three really big ones, but what about people with kidney disease or liver disease? What about people with cognitive impairment? I mean, there’s a lot of questions there.

Racial and ethnic diversity is really important. Having more women in our next trial, hopefully, as well. But also, the veterans that were studied are also a really vulnerable and unique population that we needed to understand them as well. So, I think, right now, we’re talking with some key informants in our own health system to say, what do you think are some barriers that could influence implementation? A lot of which we’re very aware of as clinicians. So, we know about payment, we know about staffing. We totally understand those things. But then, also, what potential collaborations are out there? What facilitators are out there? Are there places that are excited about this kind of work and are trying to do it on their own? And now, we have a model that has evidence behind it, and a lot of excitement and passion.

So, I think it’s really, we have to involve our patients, our families, our healthcare leaders and providers as we start to think about implementing this. And then, study, does it work when we implement it? And if so, why? And if not, what do we need to do differently?

Something David’s teaching me a lot about is this idea of core functions and different forms that it can take. So, what are those core intervention components which he’s described versus what are some local adaptations that we might be able to make, depending on the site that we’re implementing at?

Eric: Oh, I love that. And again, I got to say, as somebody who’s part of a palliative care specialty team, we’re just starting to integrate with our chest clinics, ILD patients, COPD patients, I do think there’s a lot to learn from a specialty palliative care of, how do you do that? And I think, probably, for a lot of specialty palliative care teams, it’s a lot of focus on getting the physician to see the consult. But I love this model, too, of what’s the role of the nurse and the social worker in leading those consults, too? So, I think it’s a lot to learn from a lot of different perspectives.

Can I do that? In this study, oftentimes, in clinical medicine, too, you always think, where is somebody housed? Were these people housed under palliative cares? Chest clinic? Was that even an issue in a clinical study?

David: I acknowledge what Alex said about some of the limitations, yet what we did was we queried the whole health system, two VA health systems for all the patients who might have these illnesses at high risk, again, with those inclusion criteria. I mean, in some ways, we attempted to do a population-based study. So, all these people had primary care, a lot of them were seeing specialists, but we tried to get any person in these health systems who had these illnesses at high risk with poor quality of life. So, we tried to make a population-based approach.

Eric: And then, it seems like that’s how you narrowed down the patients, is actually finding those people with some amount of distress, poor quality of life, worsening psychological distress.

Alex: Yeah. I was viewing this because we were asked to write editorial, not just on your paper, but also another paper that we’re going to have a podcast on next week-

Eric: Next week.

Alex: … with Kate Courtright and Scott Halpern. And in their study, they had default palliative care consults for everybody, and there was no consent, right? Because this was a pragmatic trial.

Lyndsay: Right. That’s huge component.

Alex: Yeah. Key difference from your study. So, when we talk about what might happen in the real world… You don’t consent patients for these sorts of studies in the real world. So, sort of a different design. That’d be fun to see happen in the future when you can argue this is standard of care.

Eric: And don’t worry, David, about taking some issue with Alex’s editorial, because next week, Alex is going to get double amount of that.

Alex: We’ll see.

David: And I want to say one other thing about that. Alex, you mentioned, we need to see cost savings or… I guess, I can’t remember what else you said-

Alex: Neutrality.

David: Cost savings or neutrality. I mean, yes, that’s the mantra. I wonder if that might be reframed a little bit to, what is the business case for this intervention? And it goes to some of those person-centered outcomes that, if you were to ask people with these conditions, well, how would you decide whether to implement this if you were the director? I mean, do you think they’d say cost savings? I mean, obviously-

Alex: Yeah, no. I agree. I completely agree. You’re preaching to the choir here-

Eric: It is funny, though.

Alex: I would love it. Yeah.

Eric: If this was a drug, if your intervention was a drug, we wouldn’t even question the cost savings of it. It’s just, does it improve quality of life? Okay, good. Great. Let’s give it to the person.

Alex: Right. Yeah. I’m just talking about the world we live in, not the world as it should be. And that I absolutely agree, we should be paying for things that improve quality of life. And they do cost money. And things that are worthwhile, like palliative care, are not free.

David: Yeah. It’s just a troublesome standard that we hold research studies, too. I mean, if you were to examine every personnel intensive clinical care, what would really hold up to that standard?

Eric: But we don’t hold all research studies up to… We don’t hold drug-

Alex: Drugs to that standard-

Eric: Yeah, the vices.

Alex: … only behavioral… Right. People powered interventions.

Eric: Yeah.

Lyndsay: And I think from a healthcare system perspective, too, this is really using kind of more of a public health approach to mobilize these community and professional networks of care within their own health system. So, it’s really enhancing things that they’re already providing, making sure that people who need them are getting connected to them. So, I think there’s a huge benefit in that as well.

Eric: All right, my last question. I’m actually going to turn to our colleague here. We’re trying to increase our Indonesian GeriPal listener base. Is there any generalizability of this randomized control study to the work that you do in Indonesia?

Diah: Thank you. Thank you for that question. Actually, I and my team in Cipto Mangunkusumo Hospital has been working with WHO Indonesia on a project that is called, Integration of Palliative Care in the Primary Care Setting. And we actually do the analysis study in the integration and whether we are ready for that. And we understand that we have a lot more nurses than physicians, and these are opportunities for us in palliative care.

The thing is… And yeah, I was also questioning about eight hours because in WHO basic palliative care, it’s, at least, five days. But also, the culture in Indonesia, we don’t have nurse practitioner in Indonesia, and nurses usually only do what the doctors ask them to do. So, they do their assessment, but they never do intervention based on their assessment. And I think this is really interesting. I think we need to empower nurses, I just don’t know how to do that, right? Changing the culture, maybe also the system, how to empower nurses to take a more leading role in this. So, do you have an idea about that? I don’t know if it’s the same…

Alex: We will follow up on this as we talk more about… Because in the future podcast, we’re going to do palliative care and geriatrics, maybe in Asia, and we’ll have you back on.

Diah: Thank you.

Eric: Yeah. Are we going to be in Indonesia for that, Alex?

Alex: I wish. I wish.

Eric: Lyndsay, any thoughts on what she just said, as Alex preps to give us a little bit more of The Best Is Yet To Come?

Lyndsay: Sure. I mean, I’m biased, but I think nursing is an amazing profession. I think we are people who are excited about this work. We care about our patients and families, and I think we have so much opportunity to empower nurses in this space. I think they’ve been underrepresented at palliative care for a long time, and yet our skillset matches almost perfectly with exactly what palliative care does. That whole person approach, that’s what we learned from day one.

So, I think having this structured kind of intervention could really help empower nurses, like you’re saying, who maybe do need a little bit more guidance or opportunity to say, this is the intervention that aligns with this patient need that they’ve identified. And I think this intervention gives us a great opportunity to do that.

Eric: The best is yet to come, Lyndsay.

Lyndsay: Love it.

Eric: The best is yet to come.

Lyndsay: I sure hope so.

Alex: (singing)

Eric: Lyndsay and David, thank you for joining us on the GeriPal podcast.

Lyndsay: Thank you so much. This was wonderful. Thank you.

David: Thanks to both of you for what you do. It’s great. Appreciate it.

Eric: Thank you. I just love everything about this paper, so thank you very much. And thank you to all of our listeners for your continued support. And don’t forget, you can get CME credit for this.

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