GeriPal Live! at NPCRC Foley Retreat: Dio Kavalieratos, Prasanna Ananth, Alexi Wright

Eric 00:53

Welcome to the GeriPal Podcast. I’m Eric Widera.

Alex 00:57

I’m Alex Smith.

Eric 01:01

And Alex, where are we today?

Alex 01:02

Today we are in Banff. We are at the Kathleen Foley Palliative Care Retreat and Research Symposium. Beautiful Banff.

Eric 01:11

Beautiful Banff. We’ve done some great hiking. We’ve listened to some great talks.

Alex 01:14

And I did a painting class today.

Eric 01:18

And today we’re gonna do something that we tried out at CAPC in Philly just not too long ago, which is we’re gonna mix up just a little bit about how we do the GeriPal Podcast. So, as usual, we’ve invited guests, but I love pbs. We’re in Canada right now, but I love the fact that in the US we do have this station called PBS, and they have this show in some locales which is called Check, Please. Anybody ever listen to Check, Please? We got a Check please.

Alex 01:45

Oh, good.

Eric 01:46

Okay, we got a couple hands where they invite three guests to be on the show, and each guest picks their favorite restaurant. All three guests then go to the restaurant, eat a meal, come back, and they share their experiences. Starting off with the first guest, like, why did you pick this restaurant? And then all the guests talk about their experiences with that restaurant. We’re going to do the same, but with research studies or articles that we’ve invited three guests.

They could pick any article that they want. They could pick their own. They could pick other articles. All of our guests then will read all three articles. We talk about why it’s important, why did they pick this article? So, and then we’ll kind of hash it out together. Alex and I are going to be usually the hosts, but we’re going to ask all of you to be the hosts, too. So we have two microphones out there so you can ask questions too importantly, the key thing is make sure your question ends with a question mark. So it always should be a question.

Alex 02:47

It’s like Jeopardy. Yeah. It’s not a statement, it’s a question.

Eric 02:51

It’s a question to our three guests about the article. Why do they choose it, what’s important about it, but do bring it in.

Alex 02:58

And you can include commentary, but you gotta keep it brief.

Eric 03:01

Yeah, brief. Because we only have about 15 minutes for each article.

Eric 03:06

And as usual, we’re gonna start off with a song. But before we do, we’re going to do introductions slightly different, Alex.

Alex 03:13

Yeah. We’re going to ask our guests to introduce themselves to reduce complexity here. Prasanna, why don’t you go first?

Prasanna 03:18

Hi, everybody. My name’s Prasanna Ananth. I am a pediatric oncologist at Yale.

Alex 03:23

Great. And Dio?

Dio 03:24

Hi, folks. I’m Dio Kavalieratos. I’m a health services researcher and the division chief of palliative medicine at Emory University.

Alex 03:29

Great. Alexi?

Alexi 03:31

Hi. I’m a medical gyno and oncologist at Dana Farber Cancer Institute and a health services researcher.

Alex 03:36

Terrific.

Alexi 03:37

Thanks for having us.

Eric 03:38

And then we always start off with song requests. Who has the song request? Prasanna.

Prasanna 03:44

So about a month ago, Eric and Alex had told us that we should think about a song that reflected Canada, so Canadian sing. So I was thinking about my song choices. There are a lot of different songs to choose from. And about a month ago, my son came back from school and said, hey, in writing, we learned about irony. What is irony? So I spent a while fumbling through an explanation, and then I said, I know a really good song. So we are going to sing Ironic by Alanis Morissette.

Alex 04:19

That’s right.

Eric 04:21

And notice the we. So we, Alex.

Dio 04:25

We.

Eric 04:26

What does the we mean?

Alex 04:27

“We” means everybody. So Eric’s going to put the lyrics up here. When I told Sean Morrison we were going to do this song, what is last week or so, he was like, so deeply disappointed. Sean’s sitting here in the front row and we didn’t show. Choose a different song by any of a number of fabulous Canadian singers. And we will do this one, and we’re going to do it great. Everybody’s going to sing along and sing it out. We practiced it a little bit last night. For those of you who joined the sing along,

Alex 05:06

(singing)

Dio 06:02

Well done.

Alex 06:05

I’ve heard you.

Eric 06:07

It’s like rain on your wedding — that’s not ironic [laughter]

Dio 06:13

Right?

Eric 06:15

A black fly in your Chardonnay.

Alex 06:17

Awesome.

Alexi 06:18

Irony.

Eric 06:19

What’d you tell your…was it son or daughter?

Prasanna 06:22

Son.

Eric 06:23

Son.

Dio 06:23

Yeah.

Eric 06:24

That’s a hard one. Because there’s debate over irony. Whether or not this is truly irony in this song, it’s true. But we’re not talking about Alanis Morissette. Sean, Is that why you’re upset at Alanis Morissette? He acknowledges. [laughter]

Alex 06:37

Yeah.

Eric 06:38

Not maybe this is irony. Well, we’re not talking about that. We’re talking about three articles. So we’re gonna start off with the first one, why Good Palliative Care Clinicians Get Fired. We have two of the authors of this article published in JAMA in the audience. I’m wondering, why did you choose this article?

Prasanna 06:59

So a couple of months ago, I had been thinking for the purposes of my research about therapeutic alliance, which what contributes to a robust therapeutic alliance. And by that I really mean the relationship between a clinician or a clinician team and patients and families. And then conversely, what also contributes to fractures beneath the surface or irreparable damage to a therapeutic alliance. And it led me to reflect on a couple of instances in my own career, both in training and then as a faculty member, where I have been fired.

And it was in this context that I came across this piece in Jamaica, written by my colleagues and friends, Drs. Abby Rosenberg, Elliot Rabinowitz, and Bob Arnold. What really resonated with me, and I think resonates with many of us who practice clinically, is how it sheds the curtain on what could otherwise be a very isolating and lonely experience. So when I was first fired as a fellow in pediatric oncology training, it was incredibly embarrassing, and I was very upset. However, I had this whole structure with a program director and, you know, an associate program director, all of whom got on the phone and talked to me and walked me through this experience and then shared their own experiences, leaving me to feel a lot less alone. Fast forward a few years.

When I was fired as an attending, it felt much more embarrassing in many ways And I did not have the courage to really share that experience with other people. And so what this piece talks about is why palliative care clinicians in particular might be especially susceptible to being fired. I’m not a palliative care clinician. I practice primary palliative care. But I am a practicing pediatric oncologist. And I still see so much in this piece that resonates with me. For example, they cite a number of studies that reflect on how patients favor clinicians who present a more optimistic outlook rather than realistic. And we are taught in our communication training to balance pragmatism and realism with optimism and hope. I think that we are all vulnerable to this and we ought to be sharing more openly and being more vulnerable about our own experiences so that we don’t feel so isolated and we don’t feel burned out by these experiences.

Eric 09:32

Alexi, you’re an oncologist. Did this resonate with you? Because the interesting thing is this was published in jama. This is not a specialty journal, but it’s about a specialty care palliative care clinicians getting fired. Which surprised me that it got published. But it seemed to resonate with a lot of people. The comments were like, if you go to the website, all of our listeners who are just listening, we’ll have links to our show notes, but you can go there, we’ll have links to it and you can see the amount of people that commented, which is impressive.

Alexi 09:59

Yeah, I think that, like Prasanna, I’m an oncologist and I have also been fired. And it’s very isolating and lonely and often caused me to reflect back on, like, what could I have done differently? You know, And I’m sure there are things that I could have done differently, but some of it is that you’re often a harbinger of bad news, at least from the family’s perspective. One thing that’s been interesting to me is sometimes I’ve seen colleagues who are palliative care physicians who choose very optimistic oncologists or medical care teams despite being well trained in palliative care. And I’m wondering what you guys make of that.

Prasanna 10:45

Any thoughts?

Alexi 10:47

I mean, I’ll take a stab at that instead of throwing you guys. I do think probably a lot of us have had time to think about what we would want and are often very clear. I mean, you never know until you’re in the situation, but sometimes have real clarity about what we would want and what compromises we’re willing to make. And you Know, for us, it may be doing everything possible, even if at times we’ve seen people suffer from that or it may be. Be otherwise. I guess that’s. That’s the way that I’ve kind of come to terms with that. But others may have other ideas.

Alex 11:25

So I’ll jump in here. Can we do a show of hands? If you’re a clinician, please raise your hand and keep it up. If you haven’t been fired, lower your hand. Okay. I would say, like, a third of the hands went down. Most of the hands stayed up. Thank you. I think this is really common, and it’s common across. We have all sorts of people here in this audience at the Foley retreat. We have people who are palliative care clinicians, we have geriatricians, we have pediatricians, we have people who are social workers, we have people who are nurses, nurse practitioners, people who are in cancer, people who are in geriatrics, all sorts of specialties. And it’s just so common across specialties. I say my own experience.

I got fired a lot when I was a palliative care fellow. I mean, like, so it’s kind of hard to say that, but it’s true because I talked to my co fellows who were great, like Kathy Silvagi, Jane de Lima, like, you know, like Juliet Jacobson, and they didn’t get fired as often as I got fired. So I was like, what’s going on here? What’s happening? Why is this? And I think in my case, I drunk the wrong kool Aid. I drunk this Kool Aid of, like, I know better, like, these experiences. James Tulsky, in his. One of the opening talks, was talking about this experience of coding patients in the hospital again and again and the moral distress that that causes. And I have to say, like, I felt that, and I felt like I was on a mission, like, to help patients, like, understand what the dangers were of this.

And I think I pushed too hard on trying to get them to know, to understand what I had learned, and that resulted in me being fired a number of times. And I think it’s important to learn about this. So kudos to Abby and colleagues for writing this up and being brave enough to talk about it and for prasannath, for bringing it up here and for talking about it today.

Eric 13:27

Well, I guess one question for you, Dio, as you think about this as a palliative care specialist, like, they talk about this tightrope, this balance between. We’re doing like good palliative care providers are doing, invitations to talk about these really hard things about making sure there’s safety involved in these discussions, but also that we go into the place of vulnerability. How do you think about that tightrope from your perspective as a palliative care provider?

Dio 13:57

First, I’m not a palliative care provider. Oh, yeah. Just to make sure. So I’m not overspeaking here.

Eric 14:02

All right.

Dio 14:03

But as a scientist, I mean. Yeah, go for it.

Prasanna 14:06

I think that, you know, there’s a line in the piece about if you as a clinician are never fired, maybe you’re not being provocative enough. And then if you’re always being appendecting.

Eric 14:19

Like if you got. Don’t do enough appendectomies, I think it’s. That’s my old school medical. That was before they had imaging, apparently.

Alex 14:30

Yeah.

Prasanna 14:31

And then the reverse is if you’re always being fired, then you have to also.

Alex 14:35

She looks at me. Yeah.

Eric 14:40

Well, I guess the other question I have is the quote, our job is not to be liked. It’s to advance the conversation and advance the care. Yeah, it was something like that. I may have misquoted that, but in general, that was the theme. What do you think about that?

Alexi 14:56

Yeah, I think that’s really important. I mean, I think you have to hear the people that you’re talking with, But I think this concept that social desirability can be very addictive. But when you’re actually putting the patient in front of you, I think you absolutely have to try to hear them. But it’s not to be liked at the end of the day. It’s to help them clarify their values.

Eric 15:19

But don’t we want to be liked? Like, I also. I have actually gotten fired by referral teams, by surgeons and medicine teams, and my job is kind of to be liked by them because I need them to refer in the future to me for the good of our service, so that there is this balance. Not even just emotionally. I kind of want people to like me, but I also need them to refer to me. And it is this delicate balance. What do you think about that?

Alex 15:46

And as you’re thinking about response to that, we’d also invite people to line up at the two microphones if you have a question. We didn’t want to discourage questions. We want to hear from you. So please come up to the mic, and when we call on you, make sure you introduce yourself for our listeners. Any thoughts on what Eric’s question or should we get to our first question from the audience?

Alexi 16:06

I mean, I think come work at the Farber because we need more Palliative care people. I feel like there’s a glut, meaning there’s a glut of referrals and enough workforce. So I. I guess I’m an oncologist, not a palliative care provider. So.

Eric 16:20

Have you ever fired a palliative care provider?

Alexi 16:22

I mean, I haven’t.

Eric 16:26

Yes, we have. Our first MIC question.

Audience Participant 16:28

Hi, I’m Kelly Michelson. I’m a PICU doctor from Chicago. I have a used to work with a chaplain who used to talk about how she would go to visit her patients or their families. And oftentimes it’s related to the teenagers. She would go and see if they wanted anything and they would kick her out and they wanted nothing to do with her. And she used to talk about that as an important intervention in their process. And I’m curious if there’s anything related to that that applies here.

Eric 16:59

What do we think?

Alexi 17:00

I mean, that’s really interesting. I have to say, as an oncologist, pretty much every time I bring up palliative care, I cite Jennifer Temel with my patients. And I say there’s clear evidence. It doesn’t extend to GYN cancers, but the people live longer when they get palliative care. And so I don’t know if that per se relates, but I think there are these important markers along disease courses. And I guess I try to move away from thinking of palliative care as hospice, but it’s interesting to think about a chaplain showing up in the room as. I don’t know. I guess I wanna have deeper trail marks than these subtleties. I don’t know.

Alex 17:45

Okay, can I defend myself now? I get fired. I haven’t been fired in a long time. I can’t even remember the last time I’ve been fired. And I think that. Thank you. Thank you. Do learn the hard way from our mistakes. We learn. And I think it’s because I focus more on listening and forming a relationship, like, deep listening and forming a relationship, like, that’s the most important thing. Understanding, like getting to know them is much more important that they know what I know.

Eric 18:19

But I think the interesting thing of this article that impacted me was even if you are the best, even if you’re doing everything right, even if you’re following vital talk perfectly, you’re listening. You are doing everything right, you still will get fired.

Speaker 7 18:38

Right?

Alex 18:40

I’m probably not being fired enough now.

Eric 18:42

You’re not challenging them enough, Alex. Right. That was also a point of this article. Are we there also maybe to challenge, to move the conversation forward what do you think about that?

Prasanna 18:54

I think so. In the circumstances that you were sharing, Eric, about surgery teams or other teams that might fire you, it’s an opportunity to have a conversation about what went wrong or what could be done differently, what sort of triggered that firing. And so to have a broader professional discussion so that palliative care is more accepted in those particular care contexts.

Dio 19:20

Yeah.

Alex 19:21

Any questions from our audience about this? This is your last chance. Yes. Please introduce yourself. We know who you are, but please introduce yourself.

Dio 19:28

Oh. Oh, boy.

Eric 19:29

I’m Ali. John Zarabi. I’m from Atlanta. Thinking about patient centered care and putting the patient and family first. Is it ever a good thing for.

Dio 19:39

The patient to fire us?

Alex 19:41

Oh, good for.

Dio 19:43

Yeah.

Alex 19:43

Could you clarify? Good for who?

Eric 19:46

For them?

Alex 19:47

Hmm.

Prasanna 19:48

Well, I don’t know. I mean, it might give them a sense of agency in my context. You know, I take care of kids, and it’s often not the kids, but in my experience, it hasn’t been the children who are firing us. It’s their parents or their family members. And so it might be the one thing they can control in a circumstance that is, you know, that they can’t control anything else. And so you often find in pediatrics, parents who are. Whose children have serious illness will fixate on nutrition or, you know, or different service providers, because that’s something they had some agency over.

Alex 20:27

I’ll say that one thing I learned from Susan Block when I was in fellowship training, and what a wonderful person to help me debrief this, and we wrote a piece about this way back when, is that maybe it’s better they get mad at us than they get mad at their primary team. Like we’re the consultant, you know, like they need to take it out on somebody and that we can be an avenue for that and we can hold that. We can process that.

Eric 20:52

Yeah.

Prasanna 20:52

I guess the one challenge there is what if you’re the primary palliative care provider? Like you’re in a subspecialty and you’re being fired.

Alex 21:00

Yeah. So when I said we, I meant palliative care consultants. I should have clarified. Yeah, good point, Prasanna. Yeah.

Eric 21:07

And there’s the argument around the short versus the long game. While in the short term, if you give hard prognostic information, satisfaction may decrease, but in the long term, we don’t know what the outcomes as far as satisfaction is. And Tony Bach talked a little bit about this in another. I think we had him on a podcast. We talked a little bit about that. Any other thoughts on this article before we move on. Or any other questions from the audience. Okay, let’s move on to our second article. Dio, I think you brought up this article which is about economic case for palliative care globally.

Alex 21:44

This.

Eric 21:46

Why did you choose this article?

Dio 21:47

Yeah, great question. So I chose it for, I think, two reasons. One was a little selfish, right? So I study models of palliative care, and I’ve been guilty of having a very sort of US Centric frame of mind and thinking about models of palliative care. And so this was sort of a nice article, which comes from a larger who piece, thinking about palliative care globally. I think the second reason was, and I apologized last night to y’, all, that I was gonna get a little political with this. So forgive me, but I think given the current times where we are in the US and thinking about health and social policy and investment, it makes me.

I think it’s a good reflection point to think about what is going on globally and how does that relate to what we have in this country. I think many of us are really worried about cuts to reimbursement and access to care as well as many of us are also worried about cuts to research funding, both of those things together. Thinking as well, the privilege that we have in this country that we have a really robust model of palliative care. If we quote CAPCI data, for example, basically almost every large hospital in the country has palliative care services. 82% of hospitals with over 50 beds have palliative care services versus what we see globally, where most of the world does not have access to essential, primary, even palliative care. And so it was a nice reflection point to think about sort of where we are here and juxtapose that with where the rest of the world is.

Eric 23:18

I’m wondering from our other guests, did anything surprise you or catch your eye from this article?

Alexi 23:23

I mean, I will say, and I forewarned you about this, you know, I am astonished that basic pain relief is not available in other countries and that it’s even controversial to treat cancer pain with opioids sometimes in some settings. And there’s a part of me that kind of thinks about Paul Farmer, the late Paul Farmer, who said it’s not enough to give people substandard care. And there’s a part of me that wonders, are we aiming too low if we’re just going for kind of basic palliative care packages overseas?

Dio 24:06

I mean, I think that’s a really fair point. Right. And another reason why I chose this article, in thinking about models of palliative care was it made me think about what are the essential components of pallia is the essence of palliative care. And for example, from the article, they talk about essential palliative care packages in a lower income country that cost, I believe it was $2.16 per capita. Right. And so thinking about such an affordable model of care versus many of the sort of deluxe Cadillac interventions that we’re thinking about in the U.S. now, it seems like there’s a contradiction there perhaps.

I think that there’s a spot in the middle. Right. I don’t think anyone’s talking about giving subs, but we are trying to reinforce access to care. I think the other point just to sort of this might seem like a tangent, but I promise it’ll connect at one point. But you know, I think the article also made me think about the inequities that we might face in this country given where policy is right now. And while I mentioned that we have privilege in this country of having palliative care accessible to many, most people in this country, you know, I think a lot about historically disenfranchised populations. Right. I think about cuts to Medicaid, for example. I think about decreased access for rural population. And so just thinking about what can we adopt from an article like this and thinking about again, what are the essential components of palliative care that all should get and how do we scale those? Perhaps instead of thinking about super fancy, deluxe, technologically savvy models of care.

Alex 25:33

That’s great. I think we have a question from Laura Hansen. Laura, if you could introduce yourself.

Eric 25:38

Sorry, Alex, jumped the gun there.

Alexi 25:40

You just know too many people. Laura Hansen from the University of North Carolina. This is such a powerful article to select and thank you for doing so. I really wanted the panelists to really think carefully or talk about your perspective on the implications for populations that we fail to reach in the United States of America. There are so many of those populations and I’m curious if you have any imagination that you can share with us from what you’ve seen in caring for those populations. How should we be changing our models?

Eric 26:28

I’m going to throw out something I learned from this article. Again, we’ll have link to this article on our show notes. But in Rwanda they had a tri. They talked about this in this article. A tribal village where they elected community kind of health workers. So I’m not sure how much training they got, but they delivered palliative care in addition to other care to their village, which I thought was absolutely fascinating. But Also made me think, Dio, how are we even defining this palliative care intervention and is it a palliative care intervention? But that was one model of bringing whatever this palliative care intervention was to the community.

Prasanna 27:11

And in the cancer care world, there are some studies, some trials in the United States employing lay health workers into rural communities to deliver bits and pieces of oncology care. So you know that that is a model that is tried and tested in other in various diseases and could be applied more broadly in terms of the delivery of palliative care.

Eric 27:39

So let me ask you a question, because this is a point of hot topic in palliative care. Like, what is palliative care? Is it a philosophy of care? Is it a model of care? If it’s a model of care, how much of palliative care needs to be involved? How many team members, what kind of dose? All of that. Like, when you think about that oncology first, the community health worker that’s going out, do you think that’s an oncology intervention? Are you in oncology? Are they struggling with the words like, we struggle with it in palliative care?

Speaker 9 28:07

What are your thoughts?

Alexi 28:11

I know you’re a PhD, but now.

Speaker 9 28:12

The time.

Eric 28:16

I mean, I think, I mean, I’m going to go back to so Dio, a great paper. What, five years ago in Jama, almost 10. I was almost 10. Holy smokes. It was like over a pandemic ago. Meta analysis looking at palliative care interventions which showed a lot of positive outcomes. But the question is, how are we defining what palliative care is? Because there was a lot of you could have lumped or you could have split, but there was a lot of lumping of palliative care interventions that were not necessarily specialty palliative care. So I wonder how you thought about that and how do you think about that in the context of this article?

Dio 28:55

Yeah, you’re seeing me smile because I’m reflecting back 10 years ago, thinking about putting that article, article together and looking out and seeing some of the co authors in the room and thinking like, how much did we stress over that definition? It was really challenging. Right. So what we did in that article was we used the national Consensus project domains of palliative care, and we said that a study needed to comprise at least two of the eight domains at that time of palliative care. Again, that was a tough decision. We chose two at least because we didn’t want trials that are interventions that just gave opioids for a symptom, and that was it. We needed something more than that. But even that was a dicey definition.

Right. And I remember even we had back and forth in the comments after we were published of why wasn’t this intervention covered? Why did you exclude that? We had to make decisions at a certain point. But I think it does bring back the point that I think is also resonates in this article that I chose, which is again, like, what is that essential component? Is it communication? Is it symptom management? Is it goals? What is it that makes a palliative care intervention, palliative care? I will also say I do think that we run the risk of having interventions define the entire field.

And I worry a little bit about that because all of these interventions are different and they should achieve different purposes, more or less depending on the population, the indication and that point in that patient’s disease trajectory at which we’re intervening. So I think it’s a complicated issue.

Eric 30:19

I’m going to push back a little bit because I struggled with this article because it talks a lot about the benefits of palliative care. It cites some of the people that we see here, Jennifer Temel’s article about the benefits of palliative care. That was a very specific palliative care model. That wasn’t just philosophy of palliative care. Let’s just see what happens when we do the philosophy of palliative care. It was a palliative care model that was implemented with high fidelity. Do we run the risk when an article like this says, oh, look at all the benefits that palliative care does? And if we just implement any philosophy of palliative care, you’re gonna get those same benefits?

Dio 31:00

I think that’s an implementation science issue. Right? In many ways. Right. So we study one thing, and then when we see it actually out in the real world, it’s gonna look different in a different healthcare system for a different population, for a different country. Exactly. And so I do think that we need more nuance in our discussion of palliative care. We can call my personal opinion. It’s a philosophy. And we have palliative interventions. They’re all gonna look a little different. But I worry about us, again, holding the entire specialty up to an RCT. For example, we don’t see trials of nephrology care. We don’t see trials of pediatrics, at least I’m not aware of. And so it seems a little bit unfair that we hold palliative care to that same standard.

Alex 31:41

I’ll interject. And then we have two questions from our audience what is palliative care and whether something can be called an intervention, a service, can be called PA care, ought to be called palliative care. It’s a question. Means like nothing, right? Because what we care about most is the patient’s well being. Right. What happens to the people who have serious illness. And it means, like, everything at the same time. When we were at capsi, there’s great concern about palliative care Light.

And we have a couple podcasts that we’re planning about that, which is, you know, person goes out with a checklist of questions that they ask, you know, patients with serious illness, and there is no follow up, no feedback, no, you know, and that’s it. They’ve delivered palliative care. Right. So the concern is if that gets labeled palliative care, then we own that. Right. All the bad outcomes do and all the problems and complaints as well. So it means something. Is what we. There. This is really. We’ll do many podcasts about this. Stephen, actually, she’s first. Okay. Please, Marie. Oh, please introduce yourself.

Audience Participant 32:46

Thanks, Alex. I’m Marie Bacaitis. I’m here from University of Alabama at Birmingham Dio. I love the fact that you picked this article because of the idea of global attention, but it’s a little perplexed. I haven’t read the article about the economic benefits of investment in palliative care. I’m glad that Diane is here and capsi, and for many of us starting palliative care programs a billion years ago, one of the cases that we could make to convince our administrators was that palliative care could save money. And we could cite Sean’s article, we could cite other people’s articles to say that palliative care saved money.

And then the light bulb came onto me and said, well, it doesn’t always. And why are we trying to make the case for something about money when the case that really is about suffering and relief of suffering and what is the price tag for suffering? So having not read the article, I’m just wondering is what the conclusions are in terms of economic benefits in the investment when we should really be caring about my own personal opinion about the quality of life benefits to investing in palliative care. So I’d love it if you could address that.

Dio 34:11

Yeah, no, that’s a great question. And I fully agree with you. Right. We should not hold palliative care just to sort of one outcome in particular, an economic outcome. I think what I took away from the article and the bottom line for me was that, you know, palliative care does not need to be some very complicated fancy model of care that will be very expensive. It can be essential components. And that as well that the article does not just talk about economic outcomes. It also talks about sort of the other outcomes that are important, like quality of life, like caregiver outcomes as well to from investing in palliative care. So I think it does a really nice job of balancing those and not just tying palliative care to economic outcomes.

Eric0 34:56

Steve Stephen Connor, Worldwide Hospice Palliative Care alliance so it’s ironic that we’re one of the only fields in medicine that needs a definition, first of all. So we have to call back, reflect on that. To paraphrase Cicely Saunders, there’s a lot of need for diversity in this field. Go out into your own circumstances and figure out how best to deliver palliative care. And I think that we have seen some really marvelous examples out of Kerala and a lot of other places of palliative care being done differently than we do it here in higher income countries with pretty good outcomes, it seems. My question to you is we have avoided the idea of asking who to create an international standard for palliative care. We’ve been a little bit afraid of that. But do you think it’s a good idea is the question.

Eric 35:55

I’m going to turn to our models of care person first, what do you think? International standards? We’re going to also have Ira Byock on a podcast too, thinking about should there be a minimum standard of care for palliative care in the United States. What do you think?

Dio 36:07

Diya I think it’s a really great question. I think it sort of depends on how it plays out right. And what the standards look like. Is it competencies? Is it specific tasks? Is it, you know, I think the devil’s in the details. I do think that there probably needs to be a baseline so that you can say I did deliver palliative care to this patient, I did that. But I do also agree that there will be a need for a lot of flexibility, recognizing differences in financing in each country, recognizing differences in culture and other factors that are important too. So I wouldn’t want to see us over standardize because I do think then we lose the beauty of palliative care.

Eric 36:45

All right, Prasanna, I’m going to turn to you. As an oncologist, you probably don’t have debates over what is oncology. But the hard part is there’s no study saying, oh, oncology saves money, economic impact. But it also doesn’t make Any sense, because oncology is not the intervention that you’re doing. It’s usually about type of drug or the model of care. Potentially in oncology, if we’re talking about evidence based economic benefits, again, this article is just focused on economic benefits. They do acknowledge that is a side benefit that is not the main benefit. But don’t we have to focus on like a specific model of care when we’re talking about economic benefits rather than a philosophy of care?

Speaker 9 37:32

Yes.

Prasanna 37:32

And one of the challenges that I found in reading this article was that they were projecting a lot of data collected in the west on low and middle income countries. You know, they were saying a lot about the costs of care in the last, you know, weeks to months of life. All of those data are from the United States or from North America, not from low and middle income countries where I imagine a lot of people don’t even make it to the hospital to die.

Alex 38:01

So.

Prasanna 38:04

It is a policy piece. So it’s not super expansive in scope. But that was one of the challenges that I found in reading this, that I felt like you can’t translate that intervention or harness those data in a completely different setting where it might not be applicable.

Eric 38:26

So both the setting and the model. We’ve got another question from the audience. Please introduce yourself.

Audience Participant 38:32

Tom Smith from Johns Hopkins for the past 14 years, but Virginia Commonwealth University and Medical College of Virginia for 28 years before that and back before many of you were born. In 1988, 1989, a young oncologist and myself, Chris Desch, met with two advanced practice nurses, Cindy Simonson and Nancy Kane, who taught us to do a needs assessment where you actually go in and ask people what they want before you decide what you’re going to provide. And so we looked at the map of Virginia where people were dying unnecessarily compared to the rest of the state of Virginia and the rest of the country.

And it was all the rural areas except central Richmond, which we couldn’t help. But we went to those areas and using my sort of business school background and engineering background, I thought we had to think really broadly about what we had to measure to make sure that this was going to be a valued component. So what we did was we went to each of these five different very rural hospitals, each at least 100 miles away. And we met with them, usually at a Chinese restaurant and had dinner and asked them, well, what do you want then? We want to have our surgery done here.

We want our MRIs done here. We want our CT scans done here. We’d love to be able to do chemotherapy here. We’d love to be able to do good pain management here because we don’t know anything about that. And we’d love to increase the use of hospice. Remember this was back in 1988. 89. And so we set up a program where we would go like old Methodist circuit riders from one place to another, usually a paravitz at each place. And what we showed in the first two years was 700% increase in the use of morphine as pain management from zero. Pretty easy to go up from that. We showed going from 100% mastectomy to 30% mastectomy and then 70% followed by radiation oncology, which is as a breast oncologist, that’s the best way to treat breast cancer. We showed for the local communities over 2 million miles of patient travel each year.

Eric 41:09

I think that’s the really interesting thing, Tom, is that and that’s going to bring us to our next article, because I want to get to the next article before we run out of time, is that there are communities in the United States that have very little access to palliative care, which we will talk about. I’m wondering in the last 10 seconds, any other thoughts?

Speaker 7 41:26

Tom we saved each. We made a profit for each of the rural hospitals of one to two million dollars a year by keeping their surgery awards busy, their MRIs.

Eric 41:40

And that wasn’t your primary goal.

Speaker 7 41:44

Palliative care was never about saving money. It was always about providing better care. But if you can do as Diane Meyer says, mission alignment, and you can save money for the community, save miles of travel for the community and teach people in the community to provide the right oncology and palliative care, it actually works. It’s continued to this day. Every hospital in Virginia has a palliative care plan.

Eric 42:08

Let me move on to our next one because I think this connects really well. Alexi, this is your article talking about a specific patient population where we don’t have a lot of access to palliative care. Everybody in the audience, everybody listeners, just think about what population this is. Is it nursing homes?

Alex 42:25

Is it?

Eric 42:26

What is it? Alexi, what article did you pick?

Alexi 42:29

Yeah, and I want to say this is my article, but it’s really not my article. This is really an article that was spearheaded, ideated, created by Chris Manns, who’s one of my mentees. And it’s one of the reasons. So I chose this article for several reasons. One is I think we’re in a period of time when a lot of marginalized populations maybe disappeared. And I see that in interventions that I’m doing where people who are undocumented are not showing up to get care. So we can’t enroll them in the interventions because they’re afraid of being sent and deported to other countries. But I also see this in places like prisons.

Eric 43:09

And for our listeners, the article is Cancer Screening, Diagnosis and Treatment of Vulnerable patients and incarcerated U.S. person.

Alexi 43:16

Yeah, so because of the particular political moment we’re in, this feels very salient. But it’s also a hopeful story in that I think a lot of what we’ve talked about today has been people reflecting upon the way that their mentors give to them. And I got this grant and it enabled me to do this, and the mentors are what did it. But on the flip side of this, this was not in an area that I was studying at all. I had definitely fangirled Bri Williams, who’s also, you know, I think the world of her and the work that she’s, you know, doing.

I had taken care of a patient in particular who had ovarian cancer and, you know, presented with a 30 centimeter mass in prison and got surgery from a gynonc and then had a wound dehis and was essentially sent to a local hospital and shackled for the entire time that her wound was healing. And I had seen that personally, but I had not thought about studying this population until this mentee came to me and said, I really want to find out what’s happening in prisons. And little did I know, actually, that cancer is the leading cause of death in prisons. And as we began to explore this together. Interviewing and he did the interviews. Interviewing, you know, lots of different PCPs and medical directors, palliative care physicians, oncologists who care for these patients.

We learn that these things that we take for granted, like knowing when your next chemotherapy appointment will be, well, it turns out if you’re imprisoned, it’s a security risk to let someone know when they’re gonna get their next cycle of chemotherapy because they might actually, you know, their family might help do a jailbreak. You know, having families present for fundamental family meetings, understanding that someone is actually has cancer, is dying from cancer. This is also they’re excluded. And the fact that this is happening, you know, in our country and in our systems was really eye opening to me. And so that’s, at this particular moment, why I chose that article.

Eric 45:25

I’m learning from our other guests. Is there anything surprised you about reading this article when you read it?

Prasanna 45:30

I was struck by the report from some of the physicians in the prisons who were saying that patients could only get supportive care medicines at certain times of the day. So they have to present to the physician, I don’t know, three times a day. And so if they needed medication, they needed an antiemetic a little bit more frequently, they wouldn’t have access to that. And they might not have access to opioids, in fact, at all. Didn’t have access to opioids. Yeah, exactly. Just was really sobering.

Dio 46:04

Yeah. I think other pieces that definitely struck me too. I think connecting it back to your article too, just making me think about delays in care and delays in communication and how that actually might play out with communication with oncologists, for example, or palliative care teams sort of not availing patients of that early opportunity for conversations. Any clarity about their diagnosis and their trajectory forward.

Alex 46:27

What stood out to you, Eric?

Eric 46:29

I think a couple of things. First was, luckily I work with a great interprofessional team and they have to constantly remind me, which I should know. This is like Alex admitting something like getting fired too much. I often forget to include family members because I’m so focused on getting my work done. And I get reminded, like, have we thought about who the family members? Are the family members gonna come? Are we talking to the family members every day?

Because they’re so integral to the care in the lives of our patients and we are 100% relying on them once they’re discharged or once the patient loses capacity and then we turn to them. But we’ve never included them before. I was shocked that they are really not included at all here in many of these places explicitly, they cannot be included in these discussions with their primary care doctor, their oncology team, because of security reasons. And that part shocked me. How do you deliver patient centered care without including family?

Prasanna 47:27

Yeah.

Alexi 47:27

And then I would add to that that often security guards are present. So you’re having this reverse thing where there’s an inherent power dynamic where this person is a security guard and you’re asked to be vulnerable without any family support to try to understand, and you can’t get any privacy.

Eric 47:46

What shocked you, Alex?

Alex 47:48

The use of correctional officers and security guards as intermediaries. Right. Like they’re the ones who can determine so many aspects of care, whether to report somebody’s in pain, whether to, you know, navigating, whether they are able to consent, who’s going to be shackled, all these sorts of things. Are they equipped to do that? These are huge intractable issues. And there’s so Many other populations, as you were saying, Alexei, that this makes you think about, like currently speaking to today, people who are held by ice. Right. There’s one of the Greenwall faculty scholars is interested in this.

You know, how ought we treat them and how can we work towards better care for those people? I see we. Oh, before you take the question, I also want to plug our two prior podcasts. We did a podcast in prison with some terrific people who volunteer in the prison. We talked to the chaplain, we talked to, but to many people. Michelle De Thomas, who runs the palliative care program for palliative care and hospice in California. And also our podcast with Bri Williams and two formerly incarcerated people during COVID Please introduce yourself.

Alexi 48:56

Hi, I’m Judith Baggs from Oregon Health and Science. And as I think about this, I think about the care providers in those situations. And we didn’t sign up to give bad care. And obviously this is bad care. And it’s not just physicians, because a lot of the care that’s delivered in prison is delivered by nurses or by nurse practitioners. So I wonder if that was considered at all when the paper was done. I want to actually respond to that. I actually don’t think that these are. I think the. The care, the system is incorrectly aligned.

But one of the things that was striking about reading some of the transcripts of this and analyzing the data is these care providers often went to extreme lengths to try to care for patients, to make sure. For example, it turns out the only time in this country that health care is a right is actually when you’re in prison. So very ironically, some patients come to prison and haven’t ever had healthcare. Thank you for coming. And then they get in prison and then they’re released and they don’t have healthcare again. And many of the oncologists we talked to or primary care doctors worked very, very, very hard to try to make sure that they were connected. So I actually think these were more. What struck me was there were incredible people struggling mightily against a system that was stacked against them.

Eric 50:28

So the care is really good, but the system, no, I’m not saying the.

Alexi 50:33

Care is how do you have really good care when you don’t have family presence?

Eric 50:37

But this kind of goes back to the last article about what is standard of care. And it depends a little bit on the systems. The models that we’re working in, and the providers that I know that work in these systems are very passionate or very good. But I also see that we have an expert at the microphone, Bri Williams Yes, Bri, could you introduce yourself briefly?

Audience Participant 51:01

Bri Williams, professor of Medicine at ucsf, and I direct the Aging Research and Criminal Justice Health Network, which is funded by the nia. Thank you so much, Lexi, for including this article. It’s timely, it’s important. Just a couple things to remember. At our worst, 1 in 100Americans were incarcerated. 100American adults. That number has gone down precipitously over the last decade, but is actually going up if you count ICE facilities now. So a lot of people are incarcerated. What that means is 1 in 2Americans have a loved one who’s incarcerated or has been incarcerated recently. That is a staggering number. So this is really part of the fabric of the experience of being an American at this point.

And so not understanding, not knowing what’s happening inside these closed facilities is. Is really a problem. I think one thing that you said, Eric, that I think is really important to underscore is this question about policies and procedures and what’s allowed, that sometimes the families are not even allowed to be contacted. And what’s important to remember, especially for those of us who might take care of a patient, never in a prison, but actually in a community hospital where people go to get care, is that a lot of the policies and procedures that we are told are absolute are actually not absolute. And some of the work that our team has done is actually look at the policies and procedures that are communicated to healthcare professionals inside and outside of prisons.

And in fact, it’s all like lore. It’s like urban legend. It’s not even true. If you look at the policy. If you look at the procedure, actually the policy says you should contact the family, and everybody has decided you’re not supposed to contact the family. And so it’s actually because it’s such a part of the fabric of American society, it’s very easy for us as Americans, I think, to just become correctional, to take on this assumption of what it means to be incarcerated and what it means to have limits around the care of people who are incarcerated. So I would just say that I think that this paper is really interesting because it’s 32 healthcare professionals and their perspectives. And the next step is really to ask, how do perspectives misalign with actual reality? And remind ourselves to constantly question when you’re told what the limits are and what is available and allowable to say, is that really true or not?

Dio 53:24

That’s great.

Alex 53:24

Thank you, Bri.

Speaker 6 53:25

Thank you, Bri.

Alexi 53:25

That’s a great point, Bri. Thank you. I will say that there are two subsequent papers that will come out, one of which is looking at barriers and other strategies. And I think there is a lot of low hanging fruit to solutions. But as usual, Bri, I hadn’t thought of that one.

Eric 53:42

Well, Prasanna, Dio. Alexi, thank you for joining us on this GeriPal podcast. Before we end…Alex is having a moment, but he also is going to take a moment.

Alex 53:58

Okay, thank you. So I wanted to change it up for the closing song and I had planned to play a song that Randy Curtis had requested for the GeriPal podcast. But I couldn’t get through the song, much less talking about it without tearing up. So instead maybe we could have a moment of silence for those who aren’t with us today.

Alex 54:25

Thank you. And now to Joy. I encourage you all to read Daniel Free’s terrific essay about Joy. Joy through music is what she writes about playing Beethoven’s Ninth. Joy is resistance. Joy as resistance. A great article. And so in that spirit, please join with me in singing this song. This song is dedicated to the Mick Jagger of palliative care, Sean Morrison.

Alex 55:03

This first part is call and response and then everybody join in after that. Can I kick it?

Eric 55:11

Yes, you can.

Alex 55:12

(singing)

Alex 56:29

Thank you once again to our guests. Thank you to our listeners. Good night, Banff.

This episode is not CME eligible.