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“The take home message of this study is NOT that primary palliative care does not work.” So says Yael Schenker of the negative study of an oncology nurse-led primary palliative care intervention for people with advanced cancer.

And we pushed Yael and Bob Arnold (senior author) on this point – we have several negative studies of primary palliative care (see links below to podcasts) – is it time to start to question the effectiveness of primary palliative care?

We certainly all agree on the problem: we have only enough palliative care specialists to care for some small proportion of the population of people with serious illness. But when we move away from specialist palliative care to primary palliative care do we lose something critical? Perhaps we cannot train primary providers (front line nurses and doctors generally) to deliver palliative care that is “good enough” to impact outcomes.

That’s one interpretation. Another is that we need a “stronger dose” of primary palliative care. In Yael and Bob’s study nurses averaged 2.2 visits, hardly robust longitudinal palliative care.  Patients who had 3 visits had better outcomes.

Unpacking negative studies is just as interesting as unpacking positive studies. Knowing what doesn’t work is just as important as knowing what does.


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

Alex: This is Alex Smith.

Eric: Thanks for joining me, Alex. Who else do we have with us on this Podcast?

Alex: We have Yael Schenker who is a professor of medicine and a palliative care and director of the Palliative Care Research Center at the University of Pittsburgh. She’s on Twitter @SchenkerYael and the Palliative Care Research Center is on Twitter at @PittPalCare. Welcome to the GeriPal Podcast.

Yael: We’ll put it in the show notes. Thank you. Thank you for having me.

Eric: That was my line Yael. [laughter]

Alex: And we have Bob Arnold who is a distinguished…and this is where I can’t read my notes…some sort of distinguished professor. [laughter]

Eric: A very distinguished professor.

Alex: A distinguished professor at the University of Pittsburgh. Being on the GeriPal Podcast is on his bucket list. It’s one of two items and the other is being on Fresh Air. So I’m glad that we accomplished one of his two bucket list items. He’s on Twitter at @rabob, R-A-B-O-B. Welcome to the GeriPal Podcast, Bob.

Bob: Thanks for having me.

Eric: I am excited about today’s Podcast because it was actually one of the medical students on our service, Kyle Hunter, actually brought up this trial, Connect as a teaching point for our service. The title was publishing JAMA IM effective at oncology nurse led primary care palliative care intervention on patients with advanced cancer. So we’re going to be talking all about primary palliative care in this trial, but before we do Yael, I think you got a song request for Alex.

Yael: I do. I would love to hear Bridge Over Troubled Water by Simon and Garfunkel.

Alex: And, why?

Yael: So, it’s one of my favorite songs. I grew up listening to a lot of Simon and Garfunkel. And I think it’s a nice metaphor for what we do in palliative care.

Alex: Yeah, sure is. Love this song. (Singing)

Eric: Thank you, Alex. Well, let’s jump right in the topic. Primary Palliative Care. Yael, What the heck is primary palliative care? How does it differ from specialty palliative care?

Yael: So, that is a really good question. Primary palliative care is traditionally defined as the basics of palliative care provided by the primary team taking care of the person with serious illness. So, specialty palliative care involves specialty trained clinicians. Primary palliative care is the basics of palliative care provided by the primary team.

Eric: And Bob, what’s the rationale behind it? Why do primary palliative care?

Bob: Because, if palliative care doctors see 10% of everybody in the country, that means 90% of the people who have serious illness who are dying are going to be cared for by their primary doctors. So, if 10% get an A and 90% get a C minus, the grade from a population basis is still a C minus.

Alex: One never knows if Bob is joking or being serious, by the way. [laughter]

Bob: No I’m being serious.

Eric: So, I got a question. Okay. So there is the access issue, but let’s say we have randomized control trials of outpatient palliative care, specialty level palliative care, Jennifer Tamel’s study, lung cancer, follow-up study in lung and colon cancer, that have such great positive outcomes. If it was a palliative care-amab, if it was a drug, it would be standard of care. Should this be the same thing? Should we even be thinking about primary palliative care? Should we just be increasing access to a specialty palliative care?

Yael: So, my confession on the GeriPal Podcast is that I’m a primary care doc at heart. And ever since having the privilege of joining palliative care as a specialty and as a field have really been thinking about this question of when do we really need a specialist? Yeah. And, I think it’s an important question because we will never have a specialist to care for all of the people with serious illness who have palliative care needs, we will just never get there. And those needs are only increasing. So, I think we have to be asking those kinds of questions and thinking about other models.

Alex: Now, Bob, earlier, you said that among the population, serious illness, we only have enough palliative care doctors for like 10% and the other 90% are seeing their primary care doctor. And Yael just said, she’s a primary care doctor at heart. This is a study of a nurse led intervention. Could you comment on why you chose to go with the nurses as opposed to the physicians, either one of you? Yeah, right.

Bob: I’ll defer to Yael.

Yael: So, that was something we thought and talked a lot about. And I would say there are two main reasons. One is that, so this is an intervention led by on oncology infusion room nurses. Every oncology practice in the country has oncology infusion room nurses. We wanted an intervention approach that could be widely accessible and disseminated. And then two is that, we were trying, and we can talk about how successful we are, but we were trying to leverage the relationship that already existed between those nurses, the patients and families. Many of whom these nurses had known for years, and the oncologists. And particularly in community practices, those relationships are often quite strong.

Alex: Yeah.

Eric: So, let’s dive into this. So, this is the Connect cluster randomized clinical trial published in JAMA IM. We will have a link to it on our show notes. In addition to access, there’s often not access. Any other reasons you decided to do this trial, Yael?

Yael: So, it was access. It was also thinking about equity. And so, when we think about where palliative care specialists are concentrated and then where patients with serious illness are, we are concentrated in academic medical centers. This was oncology. So, academic NCI designated care cancer centers, most patients with cancer receive their care in community practices where we don’t have a specialty palliative care clinician on-site. So, that was a big consideration. We actually looked in our cancer center network, and thanks to Bob’s work, we’re one of, I think the best established clinical palliative care groups in the country. We looked, and we only see 5% of the patients with advanced cancer in our network. So that to me, felt like such a mismatch that we had to think about a different kind of model, and that’s where Connect came from.

Eric: Yeah. And so, you did it in these community and it was community oncology clinics. So cluster randomized control trial, which patients did you include?

Yael: So we were looking for patients with palliative care needs who were also going to continue to be engaged in oncology care. Right. So, patients were going to be coming to these practices seeing these clinical teams. And, we wanted criteria weren’t too hard to implement because once you come up with a gazillion complicated research, criteria becomes really challenging. So, these were patients with advanced metastatic solid tumors. They met the wouldn’t be surprised criteria. So, the oncologist wouldn’t be surprised if the patient died within the next year. And there were patients who were planning to continue to receive ongoing oncology care, and who had a performance status of zero one or two, meaning they were able to get up and around coming into clinic. Most of them were receiving chemotherapy.

Alex: Well, can I ask you about that last one, the performance status of zero one or two? Which meant that as opposed to performance status of three or four, which are like in bed 50% of the time or mostly in bed, you were selecting for patients who were sick and had a limited prognosis, but not too sick, right? Because, if performance status is a reflection of severity of the underlying disease, then you excluded the patients who were very sick because they were so disabled presumably from their cancer, that they couldn’t get up and around. Can you tell us why you made that choice?

Yael: Yeah. So this is one of the challenges of doing palliative care research, as you know. So, we were looking for people who were going to be able to engage in this intervention that we were providing, and it’s an intervention that we provided over three months. So, we wanted people who were well enough to be continuing to come to the oncology clinic. And also, remember this was a clinic based intervention, not a home based or hospice based or community based intervention. So, we were really looking for people who were sick enough to have palliative care needs, but going to be continuing to come to practice. And that’s a challenge in palliative care research. It’s, it’s hard to enroll patients with serious illness and to find the right group.

Alex: Yeah. Presumably, one would hope that the oncologists aren’t giving chemotherapy, say it five times fast, to people who have a high performance status, meaning that they’re quite disabled.

Yael: Exactly. That’s also true.

Eric: Okay. So this was a cluster randomized control trial, randomized based on the clinic. So, that was the unit. It wasn’t the patient. So, you got either usual care or this Connect intervention. What was Connect?

Yael: So Connect was, as we mentioned, oncology infusion nurse led primary palliative care intervention. Just quite a mouthful. But what we did was, identify existing nurses. So these were nurses with full-time clinical roles in these clinics, which is I think an important point. We identified two or more nurses at each intervention site, Bob and an amazing nurse researcher leader, Peg Rosenzweig, trained the nurses. It was a three day training. So, it was a pretty intensive primary palliative care training. And we focused on four key parts of what we do in palliative care. So it was symptom assessment, emotional support, engagement and advanced care planning and care coordination. So, we trained the nurses to do those things. And I’ll let Bob speak to that, if he would like.

Bob: So basically, it was a three day course where it was some didactics. We had them do some role playing. We walked them through cases, and the goal which we should probably circle back to, was to try to help them be proficient in all four domains. I should point out that some of these choices were made before a lot of the Tamel data about what probably is most effective in the syringe, came out. Because I think, hindsight’s 2020 and I think we might have focused them on fewer domains and more time on those domains be that as it was, they got relatively intense three day course where in fact they then had to at the end, show us that they were competent in all four domains before they were let out into the wild.

Alex: You just gave us a good teaser there. I want hear how you would’ve narrowed the domains based on the Tamel data.

Bob: Oh no, we’re going to circle back to that. [laughter]

Eric: How did you assess your competency?

Bob: I think, Alex, the way that I would’ve done it and I don’t know if Yael agrees with this, I think that what is most effective in this syringe and has also been showed in the leukemia data where they do in hospital consults, is coping. And I would’ve probably tried to do more train for the nurses on assessing and short cognitive behavioral attempts to promote coping. It’s an open question about whether these nurses who are very busy in the rest of their lives could have done it or not. And yes, that’s where I might have gone next.

Eric: So, do they have any additional time to do this, or is this additional demands on their workload?

Yael: So first of all, I want to say that these nurses were amazing because there clearly was additional work to be a part of this project, and delivering primary palliative care. That said, we also would not have been able to do this without incredible support from our cancer center and leadership all the way up to the top. They protected the nurses’ time. I think an important point is we didn’t have a single dedicated Connect nurse. This wasn’t the only thing they were doing, but we were able to protect their time to have primary palliative care visits, which not to jump ahead, but that’s what the intervention entailed was meeting with these patients before, during, and after their regularly scheduled oncology clinic appointments for a primary palliative care visit. And we were able to protect their time to do that.

Eric: And the frequency of the visits occurred monthly over three months?

Yael: Exactly. Monthly over three months.

Bob: I want to point out that that was the ideal. It was quite hard for varieties of reasons. These patients are sick, they have other things going on in their life, the nurses. And so, one of the things you should note when you look at the data and you look about why it may not have been a positive trial, and what looked positive about it was a dose relationship. Again, a teaser that Yael will get to.

Eric: You keep on trying to jump to the results.

Alex: To provide some context here. I heard Bob and Yael give a talk about how to write a research article. And as part of that talk, Bob said that writing research articles is an act of creative nonfiction, and that he encourages his mentees to art with the discussion and work backwards from the discussion. So, that’s what we’re getting from Bob today. We’re already getting the discussion up front and we’re working backwards through the rest of the method. I think we’re still on methods.

Eric: We’re still on methods.

Bob: It keeps you more interested though, because you want to hear how it turns out.

Eric: Well, can we jump to it, since we keep on, running around this issue of what did you guys find? What did you find?

Yael: Okay. So, our primary outcome was quality of life. We found no effect on quality of life. So, quality of life was not better in the group that received primary palliative care than in the group that received standard oncology care. And similarly for other outcomes like symptom burden, symptoms of depression and anxiety. I think the part that Bob was giving the teaser for, and this was something that we thought about and pre-specified when we were planning out our analysis is, that we did see more evidence and improvement when patients got the “full dose” of the intervention, which was all three prime palliative care visits. So, some suggestion of a dose effect, which I think is an important finding and something for us to think about in the field, and something a lot of people are working on and talking about, what is the right dose of palliative care?

Eric: Yeah. So, when I think about palliative care, I think about, is a primary specialty. And then, the dose and the frequency of whether or not it’s primary specialty palliative care, including like the number of domains addressed. This is a primary palliative care intervention that addressed four main domains with, what was the average? How many times on average did a nurse meet with the patient?

Yael: There were two.

Eric: So, not the most longitudinal of interventions. And, do we have an idea of the fidelity? How much of those four domains did the nurses actually cover?

Yael: Yeah, so we looked really closely at fidelity in real time and that’s clearly a very important part of any behavioral intervention trial. I would say fidelity met our metrics in terms of the content of the visits. So, we had a set of key goals for each visit. The visits weren’t scripted, but we asked the nurses to hit on a set of key points. And, they did that and we published that data with the article. I think, as you sort of hinted at, Eric, there are other ways to think about fidelity. One is the number of visits. And I would say we, I don’t know, Bob likes to give letter grades. I don’t like letter grades that much, but we didn’t hit it out of the park with that one. So when you look for example, at Jennifer Tamel’s trial in 2010, that was an average of four visits per patient. We were shooting for three visits. We ended up hitting 2.2 visits. So, about half the dose when measured by number of visits. And then I think there are other things to discuss about dose related, to who was providing this care, the other things that they were doing at the same time before and after and how that impacted quality of primary palliative care.

Alex: These nurses are busy in these oncology centers, the infusion nurses. They had to make time for this. Did they do that? And, to what degree were they able to make space in their busy days to add in these visits?

Yael: Yeah. I just want to say again that the nurses were amazing, because I can’t say that enough times. The nurses told us, and this was really interesting. We did some sort of interviews with them, that this was really empowering for them, that this was why they went into nursing, and they were really excited and motivated by the chance to do this work. And, it was completely different from what they spent the rest of their day doing. And that disconnect was really discombobulating for them. Because when you think about the rest of the day of an oncology infusion room nurse, it’s running around putting out fires, it’s fix it, fix it, fix it. And then while their time was protected to sit down and provide emotional support and do active listening and the things that we do in palliative care, I think that disconnect was definitely an issue. And so, we didn’t change oncology practice. Right? We were a small piece of that, but the rest of oncology practice went on the way oncology practice does.

Alex: Yeah. Yeah. I used to teach a palliative care communication skills, the nurses at UCSF School of Nursing. And, we would have these role plays. We’d talk about breaking bad news and discussing goals of care. And the comments that came up frequently are, this is so far from what we usually do. And isn’t this the doctor’s job? Bob, any reflections from you on the role of these conversations? You were involved in teaching the same material to them.

Bob: I don’t think the problem was that they couldn’t do the skills or didn’t find the skills valuable, in particularly the emotion handling part of it, they found very valuable. I think some of the more complex talking about prognosis or about the future, they were less comfortable with and it was more emotional to them. And I think that goes back to Yael’s view of what their image is. Their image is, I view them like that game Whac-A-Mole. They run around and solve all these problems. And it’s a very different skill to be able to sit with sadness and not try to fix it. When we listened to the audio tapes, they did a great job. It’s just so different, that I think it raises questions about what you would need to do in the rest of their job to give them more space and support. I also want to call out all of the staff from the Connect trial who were working, who went and debrief these nurses and did extra education for these nurses. There were just amazing number of people who traveled throughout Western Pennsylvania, doing that work that gave the nurses some of the energy and resilience they needed to do the project.

Eric: Yeah. Super impressed too. Because you recorded these. You gave feedback to the nurses, it sound like. This is like best case scenario too, because probably this wouldn’t happen in real life. It wasn’t just three days of training, right? It was three days of training and feedback.

Alex: And three days of training with Bob Arnold and company. You know?

Bob: Although, I just want to point out, the studies that we used for specialty palliative care were from the MGH Group. Again, we’re not using what the norm is around the country. And so again, I think we selected nurses at the sites would give us, right. We didn’t go and say, “We’re going to choose a nurse who’s particularly skilled at this work.” We chose the people at each site. And these are sites in rural Western Pennsylvania, with very caring doctors. And so, this is less about best practice potentially and more about the way it is in the real world, which is one of the things that makes this research so hard.

Alex: Yeah.

Eric: I got to ask you, so you taught them about symptom assessment and management. When I think about symptoms too, I think one of the issues is what was the communication like with whoever would potentially prescribe medications for symptoms? Was it the right discipline? How should we think about that as far as the component of primary palliative care? Or, should it be a more interprofessional component?

Yael: Yeah, absolutely. And this trial should not be viewed as primary palliative care does not work, because there are many, many ways to provide primary palliative care. And, I do think that’s one of the reasons and I think we’ve said this in the article, that we didn’t see as big an effect. So, we protocolized a check-in with the prescribing clinician, the oncologist. We asked the nurses and we checked to make sure that they were involving the oncologist after every visit, for exactly that reason. I would say that happened in different ways and I think you’re right. We probably do need more involvement from prescribing clinicians to really see an impact on things like symptoms.

Alex: These were not nurse practitioners. These nurses did not have prescribing privileges and were unused to prescribing. So, when you give them a script that says, “So and so said they were in pain. I talked to them about increasing their oxycodone dose from 15 milligrams to 30 milligrams. What do you think about that, doctor?” That may unfamiliar to them because they’re not the ones who are used to adjusting oxycodone doses. Is that fair to say?

Yael: So, first of all, I will say that in community practices, it’s very different from in academic medical centers. These nurses run these practices, they do a lot. And so, that actually wasn’t the part that they told us was the hardest. The hardest part was the emotional support, the sitting with sadness, the advanced care planning. But the symptom stuff, they were on top of. And I think that is similar to how it goes, that the nurse is the first person or about pain or nausea or whatever it is. And they go to the prescribing clinician. So that said, we were clearly supporting and asking these nurses to practice at the top of their license. That’s something we thought a lot about. Bob and I do not have a background in nursing. We had incredible collaborators who are in nursing, who helped us to think about that. And I want to call out Peg Rosenzweig who co-led this training with Bob. If it had been just Bob, I think it would not have gone as well.

Alex: We’re getting a thumbs down from Bob.

Yael: Because, she has that experience about what is the norm of nursing practice. And so, that was a really important piece.

Alex: Right. And to be fair, when I’m on-call for our inpatient hospice unit that is staffed by nurses on the weekends, they call me and they say, “So and so’s in pain. I talk to them about increasing their oxycodone from 15 to 20 milligrams. What do you think about that, doc?” Exactly like you had in your script. So, I’m so certainly familiar with many nurses who are comfortable with making those recommendations. Bob, you wanted to say something?

Bob: No, I just agree completely that these are nurses and they didn’t have problems and saying, “Oh, you’re taking it every four hours and you’re getting up in the middle of the night. Maybe we should talk to the doctor about getting you a long-acting medicine.” This was not something that felt like it was outside of their skill daily practice domain.

Eric: And, do we feel like the doctors were comfortable doing those things?

Yael: So, we poke with a lot of oncologists as we were designing and piloting this intervention. And what they clearly told us is that, first of all, they did not want us to send palliative care nurses or physicians into their practices. They wanted this to happen as part of their practice. And, they didn’t necessarily want to be the ones themselves who were doing a three day communication training with Bob, and providing this kind of care. So, I think the physicians oncologist were comfortable. The extent to which we changed practice, I think is another question. And I think we managed the symptoms a little bit differently. We were asking them to do things like, ask what’s bothering you the most today. Really, have a patient centered approach to symptom management to create a plan together and check in about that plan and how it was working. So, much more sort of patient centered approach to symptom management. Then perhaps the traditional, you have pain, let’s increase oxycodone.

Alex: I have a question about putting the study in context of other trials primary palliative care for outpatients with cancer. I’m thinking of Project Enable in particular, which is a nurse led telephone-based intervention that does quite a bit to help. They do a lot of coaching of patients and self-management over the phone. And we’ve had Marie Bakitas on this Podcast before. And we can put a link to that in the show notes associated with this Podcast. Interested in your thoughts on, those trials had mixed results, as I understand them. You probably know them better than I do. Thoughts about the in-person nurses in the clinic delivering this in a busy clinic environment, I’m leading a little bit here, versus over the phone, taking time to talk to them when patient are at home.

Yael: Yeah. So, Marie was a co-investigator on this trial. So, she taught us a lot about the Enable trials and what they learned. And I would say we were trying to do something a little bit different. We were really trying to push in primary palliative care to these oncology practices, which is very different from having a skilled, trained, separate intervention that happens alongside. And so, I think there are benefits to both. I think it’s a pretty different approach to see the nurse who’s hanging your chemo while you’re sitting there perhaps receiving your chemo, who’s part of your oncology team, from to have a more separate telephone-based intervention.

Bob: Although Yael, as I remember the meta-analysis that you and Dio did, showed that both the primary palliative care interventions were successful, that in the meta-analysis, there wasn’t a distinction between only specialty palliative care interventions and being successful. Do I remember that right?

Eric: Well, I’m actually trying to think of a primary palliative care intervention that was successful. So you got this one, which was, I’m going to call a negative study. There may be some signals, maybe it’s a bad dose. We did a Podcast with, it was Lee Vendome Block who did a primary palliative care intervention in nursing homes. Negative. This is a multi-center, multi-country study, nursing home intervention, negative. Enable too, actually had palliative care teams involved. So, I’m not sure I’m going to call that primary. Is this just more proof that primary palliative care may not work?

Bob: Well, again, I want to refer you back to Dio and Yael’s meta-analysis which-

Yael: Well, Bob…

Eric: The problem with those is, you try to combine a lot of disparate studies together, like HIV palliative care in Kenya. And like, okay, what should I do with that? How does that fit in with what we’re talking to about here? Okay. Yael, what do you think?

Yael: I think we need, for exactly that reason, to not lump all of primary palliative care together. Look, I would say stepping back, the problem has not gone away, right? So, we’re not going to solve the problem of poor quality, serious illness care with just providing specialty palliative care. So, in a sense you could say, we have to keep thinking about primary palliative care and how to do it better. And, I also think despite having written that meta-analysis, when you’ve seen one primary palliative care intervention, you’ve seen primary palliative care intervention. There are a lot of different ways to do this. There are a lot of things that we learned from this study that we would do differently next time. And then, the last thing I’ll say is for me, it is true. I think, and I admitted to this at the beginning, that I came to palliative care as a specialty thinking, maybe we don’t always need to be a specialty. Why can’t we do this as primary care docs? And, I would say personally, I have a new appreciation for having that extra layer of support, the separate specialty piece involved. So, that’s just a personal learning point from doing this work. And from seeing how difficult it is to do both things at the same time.

Eric: Yeah. And for me, this study, listen to you, you talk about this, there’s the conceptual idea of adding, giving people primary palliative skills so they can do it on themselves, which sounds like a great idea, but the practicalities of it, and that’s the same thing that happened with the nursing home primary palliative care study. When you actually put the principles to practice, you recognize that nursing home staff turnover is 100% a year, that they’re busy doing so many other things that our system is built around providing bad primary palliative care. And unless you fix the system, you can try to educate all you want, but you end up doing the same practice that you’re doing before, because that’s what the system pushes you towards. Thoughts on that?

Bob: Maybe the way to provide primary palliative care isn’t only educational. Maybe it’s things like pace programs, which in fact are, the clinicians are not palliative care clinicians. They would do an immense amount of what we might consider a palliative care, and yet the structural and environmental incentives push you in a very different direction. And so again, I want to go back to Yael’s issue. This is a problem that we have to solve. I do not think it is a good healthcare system that every seriously ill patient get a primary care doctor, a specialist who takes care of them, and then a palliative care doctor. I do not see that being a good system. And so, the question is, how do we structure a system and educate the clinicians so that the majority of the care that they get is through their primary care provider, whether it’s a specialist, because they have renal disease, or it’s it geriatrician or a family medicine doctor, an internal medicine doctor.

Alex: So, you would say that we have not found the optimal primary palliative care intervention for outpatients with advanced cancer, yet?

Bob: Thank goodness. Yael is young and needs to write more crap.

Yael: No, I think that’s right. And, Bob said system a lot of times just then. And I think, that is a really important piece and that’s what I ended up thinking about Connect before we even had the results, that I was thinking of it like a too small rock in a very fast flowing stream. And we were not big enough to really change the direction, to change the system. And, I think that’s a really powerful piece and something we need to think about

Eric: Alright, Yael. Jeff Bezos is listening and he decides to move away from space exploration and really tackle this problem of primary palliative care. He says to you Yael, “I got $100 billion burning hole in my pocket. You can do whatever you want as far as a study, and I will completely fund the study. It’s got to be workable in the system. I’m not going to fund that stuff afterwards, but whatever you need for this next study, Yael, I…” Jeff, if you you’re listening, do this. Okay, Yael. What are you going to do?

Yael: So, I think we need to do three different things. First of all, I think we need to recognize the value of palliative care specialists and we need to leverage technology, and Jeff Bezos should be able to help me do this, to get those specialists to the places where they can have an impact and really think about equity in the field, right? Because we are, again, concentrated, not in the places where patients have the highest need. Second of all, I would think about system changes, and Bob is doing some of this in Pittsburgh. How can we change our electronic health record so that we motivate better goals of care discussion, so that we trigger palliative care consults appropriately? Really, system practice level changes. And then the third thing is, I think there’s incredible value to primary palliative care education. And, I see this every time I’m on service and Bob did not pay me to say this, but when I work with residents and fellows who have done communication training with Bob and our group, there is a difference and they are doing things differently. And that slow culture change, that’s hard to study, but I do think that’s an incredible important role for us in palliative care.

Eric: And Bob, Jeff now has a little bit of money left over for you. You got one thing.

Bob: In fact, I really want to talk to Jeff’s ex-wife who is giving her money away. But if she hears this, she can reach out to us.

Eric: Yeah, exactly.

Bob: I think that I would like to see these interventions done in health systems that are different. I’d like to see it done in Kaiser. I’d love to see a primary palliative care intervention done in the VA. They can leverage both the staff, so some education, but also change the environmental structure of the health system and the EHR. Because, I think the problem is even if you have really good nurses who have been trained to do it, if the rest of the structure they work in, focuses them on giving chemotherapy, it’s hard to have enough time. So, I want to have interventions where we have patient reported outcomes as part of the clinic. I think part of what it shows the us is that education is a key part, but it can’t be the only part.

Eric: I got another question about this study, Yael. We talk about diversity equity inclusion. When I look at the demographics specifically about this study, in my mind, I think, “Man, this is super white.” Thoughts about diversity equity inclusion as far as addressing some of those issues, moving forward.

Yael: Yeah. And, and thanks for pointing that out, Eric. So, that is a huge challenge for us particularly here in Western Pennsylvania. Our study was 5% African-American. Our cancer center demographics are seven or 8% African-American and that is primarily in more urban settings. So, we were doing this in community practices where it’s very white. I would say are other kinds of diversity is a pretty diverse sample in terms of education and income. But I think that’s the other piece of this, and we’re working on this. I was talking about this with a mentee today, that we need to be thinking about collaborating and recruiting beyond our health system here in Pittsburgh, if we’re really going to be doing research that is racially and ethnically diverse. And, that addresses the questions that are important to those communities. So, absolutely. Absolutely a limitation of this trial. Absolutely a limitation of our system.

Bob: Although, I would point out that you guys had Lindsay Bell and Tessie [inaudible 00:44:28] on earlier, and that’s basically worked that Yael organized with the Arthur Vining Davis Foundations and with the medical school here to do a whole bunch of things to try to improve in specialty palliative care, the workforce issue of the diversity of the workforce. So, people should go back and listen to that Podcast that you guys did.

Eric: We’ll put a link of that. So that Podcast was The Diversity Problem in Palliative Care. That was just a couple Podcasts ago. We’ll have a link to that on your show notes. And Bob, your name came up frequently on that Podcast.

Bob: I thought you guys got rid of cursing on Podcasts these days.

Eric: Well, I’m surprised we haven’t cursed yet, Bob. [laughter]

Bob: Yeah. Yael said that you guys bleaped stuff. So, I was trying to be good. [laughter]

Eric: Well, I want to thank both of you for being on this Podcast. I thought this is absolutely fascinating study. I love it when studies don’t show the outcome that we expect, and this is one of those who I read them all. I think we sometimes learn more from the studies where it’s potentially negative in palliative care, shows us potentially what potentially works and what doesn’t. So, I really appreciate you spending time with us. Before we let you off the hook, Alex, got a little bit more?

Alex: Little bit more of the palliative care Bridge Over Troubled Water. (Singing)

Eric: Yael, Bob, big thank you for joining us on the GeriPal Podcast.

Yael: Thank you for having us.

Bob: Thanks. Although, I thought when Alex was singing about down and out, I thought he was thinking about when we looked at the results of the study and found it was a negative study. And then I thought, oh, it’s just what this song is about. [laughter]

Alex: Eric is happy to talk about the negative studies. I’m sure that the primary investigators of the negative study are not so happy when they unblind it.

Yael: No, we appreciate you talking about negative trials. Super important. Super important. Thank you guys so much.

Eric: And Bob, you can take off the Terry Gross interview too. I think this will easily outmatch any Fresh Air. Big, thank you Archstone Foundation for your continued support. And to all of our listeners, thank you for supporting the GeriPal Podcast. Have a great day, everybody.

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