GeriPal Live! at CAPC: Karen Bullock, Kim Curseen, Matt Gonzalez

Eric 00:00

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:04

This is Alex Smith.

Eric 00:06

And Alex, where are we today?

Alex 00:08

We are in the beautiful city of Philadelphia, the Center to Advanced Palliative Care annual meeting. In person. First in person meeting in six years.

Eric 00:25

It’s been a while since I’ve been on the CAPC stage. I think the last time I was here, I was with Matt Gonzalez and we were peach farmers giving a L review. And I’m actually very excited. We thought we would do something a little bit different for this GeriPal podcast. Does. Does anybody ever watch PBS? Check, please. Any check, please. I’m a PBS nerd and NPR nerd. For all the NPR nerds out there.

Eric 00:54

So the format is. Check, please. Is each. They invite three guests. One guest picks their favorite restaurant. So each guest actually picks their favorite restaurant. And then all the other guests have to actually go to the restaurant. And then they come together, they talk about it. So we decided to do a similar thing where we invite three amazing leaders in palliative care. They pick one article that they thought was delicious. I’m not sure if I used that word, delicious, but one article that they thought was delicious. All of us then read the article and then we talk about it on stage. So we’ve also thought, you know what, we have another host here, too. This is kind of exciting.

Alex 01:37

Breaking the fourth wall.

Eric 01:39

Fifth wall. Fourth wall. How many walls are there?

Alex 01:41

Fourth wall. Between ourselves and the audience, right?

Eric 01:44

Yeah. So we’re going to invite all of you to be a guest host with us as we talk about these different article. So I want you to think about that. We’ll tell you how that works. But before we do that, maybe we can do some introductions.

Alex 01:56

Great.

Eric 01:57

How do you want to do introductions, Alex?

Alex 01:58

So to reduce complexity, we’re going to have our guests introduce themselves. Let’s start with Kim.

Kim 02:04

Hi, I’m Kim Curseen, and I’m an outpatient palliative care provider at Emory Healthcare in Atlanta.

Alex 02:11

Terrific. And Karen.

Karen 02:13

I’m Karen Bullock. I’m a licensed clinical social worker and I’m in Boston on faculty at Boston College. I also have an appointment at Dana Farber, and I’m affiliate faculty for capc.

Alex 02:23

Great. And Matt.

Matt 02:24

Howdy, folks. My name’s Matt Gonzalez. I’m the chief Medical officer for the Institute for Human Caring at Providence. And I will say I just learned for the very first time the inspiration for why we’re doing this. Like as each of us picking an article. So thanks for the background.

Eric 02:41

Yeah. NPR, PBS.

Eric 02:46

So we always start off with a song. Who has the song request for Alex? Karen, what song did you choose for Alex to sing?

Karen 02:57

I chose On My own by Patti LaBelle, who is a Philadelphia native, with Michael McDonald.

Eric 03:06

Wonderful. Alex is signaling me because I always forget how these podcasts work. Karen, why did you choose this? Is it just because it’s a Philadelphia native?

Karen 03:19

No, I chose it well because Patti LaBelle is a Philadelphia native, and I thought, you know, there’s so many artists from Philadelphia. But I also chose it because this song, to me, is about life and relationships and how while we might expect that we’ll have someone in our lives forever, when we don’t have that person in our lives. We need to figure out how we can live on our own without that person.

Alex 03:42

Great. Wonderful choice. So this is soul song. Beautiful song. Going to play it on acoustic guitar. I love it. If we could break that wall and the audience could sing along, particularly on the chorus. It’s very simple. It goes. On my own on my own on my own on my own Four times

Alex 04:03

so many times

Alex 04:08

you said it was.

Karen 04:10

Forever.

Alex 04:16

Said our love would always be.

Kim 04:19

True.

Alex 04:22

Something in my heart Always knew I’d be lying here beside you Here we go. On my own it’s here. CAPC. On my. Yeah, louder. On my own One more time. On my own.

Eric 05:06

All right, before we go to the articles, I want a reminder. So you all are our guest hosts. So we have two microphones up in the audience. If you got a question for one of our esteemed guests, come up to the microphone. You can ask that question anytime. Alex and I will do our best to keep an eye out for those two microphones. When you ask the question, just say your name and keep the question relatively brief. But we’d really encourage you to jump into there anytime. Okay. Any other housekeeping? Alex?

Alex 05:42

I think we’re good.

Eric 05:43

We’re good to go. So we’re going to go to our first article. This one. Algorithm based palliative care in patients with cancer. A cluster randomized controlled trial. This one. Matt, you picked this one.

Matt 05:57

That’s mostly true. I did put it into this set. But full disclosure, I didn’t choose this article. I had AI choose this article for me.

Eric 06:09

You had AI Choo.

Matt 06:11

As many of you know, like, I was a software engineer nerd before I was a doctor, and I’ve been, like, really fascinated by the opportunity to use AI in different ways. And so when you guys called and said, like, we need to choose an article, I outsourced that to AI and had it read like 4900 abstracts in 11 minutes to try to figure out what we could use to be able to think about our time together today. And this was one of the top articles, and I loved it.

Eric 06:42

How many articles did it?

Matt 06:44

4900 in 11 minutes. It was like, enough time for me to, like, walk away, make a cup of coffee, come back, and like, look at the curated list of three articles that I should select. And then you guys change the criteria a little bit. Like, it can’t be something that we’ve already covered. So I had to go back and, like, ask it to do something again.

Alex 07:05

At first suggested a bunch of articles that we’d already covered that you’d already covered. Because it ate Jerry Pal.

Eric 07:11

It literally went through all of our podcasts.

Matt 07:16

That’s right. You don’t own your intellectual property anymore. Sorry, guys.

Eric 07:19

Okay, so you used AI to pick this article. Why did this one in particular?

Matt 07:26

Yeah, well, I love this article because I think it’s practical. And I think we all need some bit of practicality in our lives right now. And that’s not to say that we shouldn’t dream big, but I think I wanted people to be able to leave here with something that they could take forward and do within their own clinical practice and their own settings pretty quickly. And this article is great. So, I mean, the headline is, this is a randomized controlled trial done at community cancer centers in Tennessee where they basically took and randomized clinics.

And they had two groups, one that got usual standard care and the other group that had a nudge towards palliative care. And they had an algorithm, of course. Um, the algorithm, unlike a lot of these papers, was like, not overly precious, which I loved. Like, it wasn’t hard to code for. It’s like pretty easy. It’s like, do you have lung cancer or a non colorectal GI cancer that’s stage 3 or 4? And then some risk factors that I think we all would find important. Like you’re older than 70 or you’re younger than 40, or you have severe metastatic disease. And in all of those pieces, they add up to a scoring system that if you screened in, your oncologist was given an opportunity to refer you, or a nudge really to refer you to palliative care.

Alex 08:44

Nudge.

Matt 08:45

I know it’s your favorite word our.

Alex 08:47

Listeners will be familiar with.

Eric 08:49

Jimmy, remind me what a nudge is? Alex. No.

Alex 08:54

Not that there are many types of nudges. Most GeriPal listeners have given GeriPal a five star rating in their podcast service of choice.

Eric 09:07

That’s a Nudge.

Alex 09:09

That is a nudge. That is a social desirability nudge.

Eric 09:12

So most people are doing it. Any other examples of nudges?

Matt 09:20

Well, I think this is a good example of a nudge. Right. So they like basically emailed the oncologist and said, you know, your patient likely qualifies for palliative care. We’re going to to refer them to palliative care unless you opt out.

Alex 09:34

Right.

Matt 09:34

And so they made it really easy for that to happen. It was like the default move towards. And what happens? Well, there was an incredible increase in the number of palliative care consults, like a quadrupling. So in one arm it went from I think something like 8% all the way up to 44% in the arm that got nudges. And that’s like remarkable to me.

Alex 09:53

Wait, what was the nudge?

Kim 09:54

Oh, yeah, Kim, I realized I just raised my hand. Go and zoom all the time. But with those nudges, if you opted out, you had to give a justification.

Matt 10:07

Yeah.

Karen 10:08

Yeah.

Kim 10:09

So I wonder how that might feel to community oncologists to have to justify whether not choosing that was a nudge too.

Eric 10:19

Right. What do they call that? Nudge? Didn’t you remember accountability?

Matt 10:23

Justification.

Kim 10:24

Yeah.

Matt 10:26

And Kim, to your point, I feel like it was interesting because, like, although they got 44% of the folks having consults, that still leaves over half that didn’t get seen by palliative care.

Alex 10:37

Right. Wait, but before we get to that, can we stick on the nudge for a second? Could we poll the audience? Like if you, if you’re like, imagine you’re a, what, outpatient provider. Right. Like a pcp.

Eric 10:51

This is all outpatient clinics and you.

Alex 10:53

Get a pop up window that says your patient is being referred to palliative care. If you disagree, please tell us and then fill out this box to tell us why there’s something called a nudge. Right. And that’s like our cognitive biases, we don’t think logically. We are influenced by what the default is, ordering effects. What’s first? All of these heuristics. Right. So is that a nudge which falls into that category, or is it sludge? Right.

Sludge is like those that prior Auth video we saw in the first plenary session. Right. Like you have all of these barriers to trying to do what you want to do. So let’s see a show of hands. Everybody has to vote. You can only vote once. And you either say this is a nudge or this is sludge. This pop up window, how many Say nudge, raise your hand. Okay. And how many? Say sludge, raise your hand. Oh, that’s like almost even, I would say.

Matt 12:01

I wonder though, if we did this in like an ASCO meeting, how they would feel. I mean, no offense to the ASCO folks. I’m just like, this is really important to us. I’ll tell you. A few years ago we put like a BPA in of like referring to palliative care. And I will tell you, the first time I logged into someone’s chart and I got it as the palliative care consultant and couldn’t move forward on the screen, I was like super frustrated and I was like, I built this thing and I’m having anger at it. So I think done well, they can work, but they have to be thoughtful.

Alex 12:34

And I sense that there’s frustration with the number of pop up windows that people are getting too. I think both are true.

Eric 12:40

Well, do we have to be careful with nudges? Like, is this an ethical construct to do? Because what we’re trying to do is we’re trying to shift behavior. We’re still giving people a choice, which is by definition a nudge. You’re not removing choice, but you’re just making it easier to make the quote unquote right decision via here an algorithm, something that’s working in the background that automatically does this with no human intervention. Like, is that, is that our future there? I mean, soon it’ll be AI doing this for us. How comfortable are we with this?

Kim 13:19

Well, I think if you’re practicing in a busy practice and you have 15 minutes with a patient, you know, it’s not that people don’t want their patients to feel better. They just may not think of it. There’s a lot of things you have to cover. So if you have something automated that just reminds you, because you remember your group who were, who were prompted actually had less systemic therapy at the end.

So I just wonder if bringing that to mind actually reminded them maybe to have to think about the patient differently. Like, oh, this qualifies for a palliative care patient. My patient might not do so well and maybe I should have some other conversations or think a little bit more about where they are. Because the grind of the day is the grind of the day. So I think that’s sometimes what’s happen in these clinics versus people not recognizing. You take care of somebody for a really long time. Sometimes you just don’t see it. Yeah.

Karen 14:19

And I would add that I think the other piece is that there are folks on one side of the discussion who think that it’s great, it’s automated, and so it removes some of the human elements that can cause us to overlook or miss or not include some patients. But then there’s still a human element to it. And so we know with clinical trials that people of color are less likely to participate in clinical trials. And so for me, as I read the article, I wondered, who are the patients?

There’s still a human quality to asking. And I remember a discussion with the physician who said, sometimes I don’t ask my African American patients because I know they’re going to say no because they don’t participate in clinical trials. And so I think, on the one hand, some of us feel that the automation of things mean that it’ll remove some of the biases that humans bring into spaces, but at the same time, AI is perpetuating some of those same kinds of biases.

Eric 15:24

Yeah, totally. The algorithm itself could perpetuate those biases, especially where it’s getting that information, who is creating the algorithm. So it sounds like we should also be mindful of looking at the outcomes of those and making sure that they’re equitable. Is that right?

Karen 15:42

Yes. Yeah.

Alex 15:44

Yeah.

Matt 15:45

I mean, I think that. I mean, that resonates for me, for sure. Like, everything that we do has to be seen through a lens of equity and making sure that we’re not worsening the disparities that already terribly exist within our society. And so I just, I truly appreciate you bringing that.

Karen 16:02

You’re welcome. And I think to the point that Ken made about the daily grind and what we’re doing, sometimes when it may be obvious or apparent that, yeah, we’re missing some people or that there are gaps, but what do we do about it? I mean, who among us hasn’t read articles where it started with race and ethnicity is really important as a variable that influences xyz.

And then by the time you get to the samples, looking at the sample, and the Overall sample is 80 to 90% white, and they don’t really address race or ethnicity in the methodology or in any of the analysis. And then they write a section, the limitations section, saying, oh, and make sure you include underrepresented populations in the future. So that’s. It is. I mean, we do need to look at it, But I still feel that far too often in medical journals or in any journals and science in general, we explain away these inequities in a section called Limitations.

Alex 17:05

Yeah.

Eric 17:10

And then it was brought up about the. While this study, this algorithm worked, the defaulting people to Palliative care worked significantly, increasing referrals. Only half of the people actually saw a palliative care provider who got the default intervention. Is that right?

Matt 17:31

Yeah. You know, it’s interesting. I think one of the pieces that I sometimes I wish that, like, the supplemental materials for a journal were, like, actually in the real thing, because they had these lists of, like, accountability justifications. And to your point, Kim, earlier, some of the reasons for not referring, like, one of them was like a big capital N O. And I’m like, what were you thinking?

Alex 17:57

That’s loaded.

Matt 18:00

And others. Others were more balanced. Right. It was like, my patient’s been up on opdivo for seven years and is totally stable and has no symptoms, and so there’s no need. Right. And so, like, I think there’s a lot more to dig into around this, around the granularity of it. I would also just say that one of the key points that I want to talk about is, you know, it’s clear that the palliative care programs that they referred to were staffed well enough to accommodate the increased volume. And I think that’s a really, really important piece for us to talk about because there aren’t enough of us.

And so choosing the right patients and making sure that when we try to systematize the influence of palliative care, that we’re mindful not to overburden the people that are doing the real work of sitting with patients and families. And they didn’t see that in this trial, but I think that’s because they probably invested upfront to make sure that they had bandwidth to get people in. So one minor caution is like, I wouldn’t just go and do this unless your teams feel like they’re adequately staffed to respond to patients and families needs.

Kim 19:12

But I think another question, like, when you get. No, we think we kind of the default in our brains are, well, they don’t believe in palliative care, and they, you know, they don’t understand it. Sometimes they do understand it, but the other question is, what’s the quality of the palliative care that they’ve received or what has been their experience with us? So I think, at least where we practice, you know, because there’s no standard of what’s a palliative care offering, Right.

You just hang a shingle like, I’m providing palliative care, I’m here. And so if they’re not getting what they need from the service, we just have to have our minds to think that sometimes it is them, but sometimes it’s Us. And so. Yeah. So that. No, there’s probably some things behind that. No.

Karen 20:00

Yeah, yeah.

Eric 20:01

And I thought the most interesting thing Is while only 50% of them saw palliative care, I think most of that not seeing palliative care was not physicians opting out, it was patients, them getting lost, neither not wanting to go to these clinics or lost a follow up or no shows. It’s unclear what it was, but we see that in our clinic, which is that there’s a significant no show rate despite the oncologist referring to our clinics. It’s sometimes very hard to get them. Kim, you have an outpatient clinic. Does that ring true?

Kim 20:37

Well, yeah. I mean, you think about what a patient with cancer has to go through. They got. Maybe they’re getting radiation and chemo, and, you know, we live in fee for service. So you eat what you kill. So that means that now they have to have another visit. They gotta pay for parking, they gotta drive down there, they gotta try to coordinate.

And even if it’s in another video visit, it’s a lot that we ask people to do. So if you’re nudged for palliative care and nobody told you why you were going, you may not see the reason for the visit. If you feel like you’re doing okay, and then you Google it and it says hospice, and then you think everybody lied to you. So it’s a lot. It’s not like, I mean, we can be the answer to the question, but you got to remember it’s one more thing they have to do. And we cost money.

Eric 21:25

I think we have a guest host with us. Who is our guest host?

Alex 21:29

All right.

Karen 21:30

I’m Ruth Wagner. I’m a physician with Masonic Village Hospice. I used to work at an oncology palliative care clinic. I feel like what I’m not seeing with this nudge is it’s not a nudge for conversation with our patients. It sounds like it’s being. It’s sent to the provider, and it’s the provider making this decision. But it’s not a nudge. You know, hey, talk to your patient about palliative care, what that service is, and how even if you’re doing fine, it might benefit you. Like, I take away even that, like, conversation about our caregivers and the benefit that they get when they come into our palliative meetings.

And we approach it from that family perspective. And, like, I think there’s a missed opportunity, that it should be a nudge for conversation, not me sitting at my. And deciding as the oncologist, like, Is my patient doing okay? Like, have they actually asked that question to their patient? Are they doing okay? Or is their patient just telling them what they want to hear? You know, I feel like it’s the wrong type of nudge.

Eric 22:32

What do you feel about that? Is the wrong type of nudge?

Matt 22:35

I don’t know that it’s the wrong type, but I love this idea.

Eric 22:38

Right?

Matt 22:38

Like, gosh, nudge is, like, turning out. This is like another nudge podcast. But, like, I don’t. I don’t know what the right one is. I don’t think any of us know exactly what the right one is. Like, is it a nudge to the oncology nurse that’s giving them the infusion? Is it a nudge to their oncologist? Is it a nudge to a patient and family? I mean, I think there’s a lot of interesting research around this, and that’s kind of why I felt like this was an important thing for us to begin thinking about.

I was like, how can we move referrals to our specialty from ad hoc and clinician dependent? Did they think about it? How do they feel about us? How busy is their day to something that makes it more routine and who we target that to? I think that’s a very open question to your point. So there’s a lot more to do there.

Eric 23:37

Well, Alex, most podcast hosts at this point would move to the next.

Alex 23:45

Are we like most podcasts or do we run counter to the stream?

Eric 23:51

Well, I think the next one actually fits in really nicely with this one, because this was an outpatient oncology intervention leading to palliative care and requires a good amount of outpatient palliative care. Like, you have to have a palliative care clinic in order to actually run this study. And if you want to create an algorithm that pushes people towards outpatient palliative care, we need people who know how to do it. Right, Kim?

Karen 24:19

Yeah. Yeah.

Eric 24:20

So, Kim, you picked this article, which is Outpatient Training during Hospice and Palliative Medicine Fellowship, a national survey written by first author Harry Hahn.

Alex 24:30

Harry Hahn.

Eric 24:33

Why did you pick this article?

Kim 24:36

I picked this article. I have lots of emotions, so I’m going to try to calm them down. This is me excited.

Kim 24:45

I have to tell

Kim 24:50

the beautiful thing about our profession and how smart we were. We were smart about marketing. We were really, really smart about the spaces that we have been in and all of our research. But the thing that I don’t think we have done well is that we have offered ourselves in spaces that are important, but we didn’t train nobody how to be in that space. And so we continue to educate people how to take care of the dying, and it’s wonderful, and we do a great job, and that is incredibly important. I would never back away from that. But when you have to see people early, that’s different.

That’s different. And, you know, when Harry and his team did the survey of fellowship directors and people who are in training, you know, the basic crux is that maybe they got four weeks of training and outpatient, and they didn’t feel quite prepared. And now they’re asked to go out into the world and take care of folks. And when you’re taking care of somebody who has six to three months, maybe even a year, that’s a different kind of care. And you sit in that suffering with them. When you take care of somebody for five years, who you have to sit in that suffering for a really long time. And if you take care of somebody that has chronic, serious illness and our treatments are really good, you have to sit with it that that might be your patient for life.

And anybody who’s ever read fellowship applications, what a fellowship application say, they say, I want to walk somebody through the journey. Every story is about somebody who profoundly. Who was profoundly affected by their illness, and they ended up passing away. And either it was a wonderful experience or it was a difficult experience. I have yet to read the thing that says, yes, I want to take care of a patient who is addicted to benzodiazepines and has substance use disorder and has no food and no light. And I want to be there by myself with no IBTT for 10 years.

Kim 27:12

But the truth is, those people exist and those patients exist, but we are not training a workforce to take care of those patients. But we continue to market ourselves like we can. So all of these healthcare organizations invest because we told them they could. So I’m not sure we’re at the table. I’m not sure we can deliver. And all of us gray hairs keep coming up with amazing studies and things. And every time we come up with one of these studies, then we obligate the whole entire profession to do it. And yet to train them, and we don’t even ask them. And I learned that the hard way in my clinic. I was just seeing folks thinking it was amazing. And then I got all these junior faculty, and they were looking like, what do I do? This patient came and just talked to.

Karen 28:05

Me.

Kim 28:08

And they were like. And, you know, they didn’t have any symptoms. That wasn’t a good use of my Time. And in my mind I’m like, well, nobody drives to the clinic, pays the copay, pays to park and sits down in your chair to come see you. Because there wasn’t an issue. And what you did was the exact thing we say we do is that they’re having a really hard time. And you listened and when they left, you felt better. So the palliative intervention was you. But they weren’t trained to understand that it’s two doctor center.

Karen 28:48

So.

Kim 28:48

Oh, and we don’t even have. And we don’t fund our IDT. Everything is very Dr. Centric. So think about it. We get trained. How much did you put into our training? And then when the RN or APP comes, we put them in a car, they shadow like they say at a Holiday Inn Express last night, and then they go out and they actually are taking care of the bulk of the patients, right? And then we, they were upset when it didn’t go well. But we didn’t bother to invest in training for the people who are actually seeing the patient. So I think that’s why I chose this. Like, if we’re going to do all of this, we need to train a workforce that is prepared and that can deliver. Because if not, we put our profession in jeopardy.

Eric 29:32

We can’t just create algorithms and pretend everything’s gonna be fine. Al.

Kim 29:36

No, you got it.

Karen 29:37

No, Ella. But I think I wanna add that this is part of the reason why this conference is as this summit is as successful as it is. People are here to learn to try to fill in some of those gaps. As we presented in our sessions, I mean, the rooms were crowded, people were there like waiting for information because there’s so much that needs to be filled in and it can’t all be done in the training programs or what. So we have to sort of figure out how am I going to continue to learn and grow.

And I know in the sessions that we were in, it was very apparent that people were like, okay, I want to take this back and how do I do this? I mean, Brittany and I had a converse. Facilitated a discussion about navigating difficult conversations, right? Like, great. We offer that people really are having some difficult conversations without really knowing, like how, you know, what are some evidence based practices. And so when I read this article, for me it was like, okay, there’s so much that’s not there to the point, like, this is what is available, but there’s so much more that people need in order to feel effective at what they’re doing. And so I appreciate that.

Eric 30:47

So it’s almost like we have, we need minimum competencies. What those minimum competencies is and should it be different than how we thought about it back in 2008 when we created these fellowships? For example, how much time do they, a quarter of people die in nursing homes. How much time do our trainees, our fellows spend in nursing homes? Very little.

Alex 31:11

Very little.

Eric 31:12

Why aren’t we integrated there? So I guess the question to all.

Alex 31:17

Three of you is, should we summarize the article?

Eric 31:20

I guess we’re talking about the article. Kim did a pretty good job in the beginning. So I think the Kim you said that the big difference was.

Kim 31:30

The big difference was that they pointed out that the fellowship directors didn’t feel like they received enough training and the trainees didn’t feel like they received enough training. And the reason why Harry wrote this article is because he went out and tried to practice and he became a little upset and kind of a little bit enraged and demoralized because he didn’t feel like he had the tools in his toolbox to be able to care for the people who were coming into the clinic.

Matt 31:58

So I relate to that very much. I mean, I had the privilege of like doing a fellowship at ucsf and I mostly took a job at UCSF as my first year attending because I felt not quite ready to fly on my own. And that’s not to say anything about the folks that trained me, but I was like, gosh, another year with the social worker and chaplain to be able to continue learning. Of course. But here’s my question. I totally agree that we need more outpatient training, but in a year long fellowship, what goes? Because it already felt busy enough.

And so I found when I was reading this, does this mean that we need to actually increase the amount of time people are doing training? Like, I look around this room when I was here, whatever, a few days ago, was it just yesterday? No, it was Monday. And the number of first time attendees at this conference like, really, really stunned me. And then as I’ve been talking to people, I’ve been realizing that a lot of folks said, like, when I graduated fellowship, I had no idea how to run a palliative care program. And yet I’m being asked to do so. And so I think a whole nother gap besides outpatient and long term care is learning the language of healthcare that we all need to speak in order to be able to help our programs to grow.

I think that’s why a lot of folks are here and that’s why this is so popular and it Makes me wonder if you could cobble together enough of these things to make the training more robust. And I realized there were reasons for keeping it short, but I don’t know.

Kim 33:42

But if you are doing that, they have to learn how to lead a team and they have to know something about finance. There’s a lot of things that the outpatient doctors have to understand. If you don’t understand those things, it’s really difficult. And I think that, again, is demoralizing. Just the nuts and bolts of how to do an outpatient clinic.

Alex 34:04

Yeah, I think these are great points. You know, at ucsf, we often have geriatrics fellows and palliative care fellows rotating with us at the same time. And you really see that the geriatric fellows, where there’s a mandate that they see, they have a longitudinal panel in nursing home, they have a longitudinal outpatient panel. They have more outpatient experiences than the palliative care fellows. And that’s great.

And there’s a cost in that they feel here, there and everywhere and not in one place. So I think the point that we absolutely need more outpatient training is true and we need to make sure we structure it thoughtfully. And I think what you might be hinting at, Matt, is should palliative care fellowship be more than one year maybe. And I know there were some people in the field who felt like it was a mistake early on that we have a one year fellowship and not a longer fellowship like some other specialists, because one year is just a short time. And maybe it does a disservice to the field and the tremendous amount of knowledge it takes and experience to get that longitudinal experience right. Following people over time.

Kim 35:15

In an average clinic, you see a cancer patient, patient with dementia, patient with renal failure, patient with a disease that you had never heard of, that you have to go to the Google for. But and the thing we don’t tell, it’s like you can’t understand how to palliate something if you don’t know what it is. And you don’t. And you can’t tell the difference between sick and well. And you know, and you know, I’ve been doing this for 20 years and my colleagues, my young junior faculty who come will. Kim, you always know what to do. Yeah, it took me 20 years. Yeah, I can do this. Yeah, I’ve seen so many things. But if they only trained in cancer or they only trained in dementia, but they’re asked to see everyone, it is possible. There’s ways to teach that. But you know, we’re so far Advanced. The treatments are far advanced. You got to know the medicines, you got to know the physiology. You have to know what it is.

Eric 36:11

Yeah. And I think the important thing in this article is most of these fellowship programs were training in a mostly single disease center, like a cancer center that only saw cancer. I see some guest hosts over here.

Alex 36:24

Yes. Oh, we have multiple, multiple questions. Quick then.

Kim 36:28

I’m Katie Brownstein. I’m a nurse practitioner for Samaritan Life Enhancing Care. I also do research for the Baccalini Institute. And part of what I do is I help train new nurse practitioners within palliative medicine.

Karen 36:40

And so we’ve just started a fellowship.

Kim 36:42

Which is really exciting.

Karen 36:43

I think it’s really robust. We’re doing lots of role play, lots.

Kim 36:49

Of didactics, lots of one on one mentoring. But the issue that I’m coming into.

Karen 36:54

Is I have not been able to.

Kim 36:57

Find the people who want to stay with us long term, despite the training. So my ask to you guys is, how do I build on this and how do I recruit the right people?

Eric 37:08

Great question. Thoughts from our guests.

Alex 37:12

What do we do in this?

Kim 37:13

I think the people who want to do this are out there, but I think sometimes we’re swimming in the wrong pool. So if I’m looking for an outpatient provider, what I’m looking for are people who have the tolerance to sit and think about longitudinal care. So people who are working in family practice and internal medicine and addiction medicine, the wiring is a little bit different. And so their expectation isn’t to have like a terminal end. They’re okay with that complexity now. They’re not okay with some of the other things that we have to teach. So I think sometimes, you know, casting our net and where we go to find people. So I think our profession’s big enough, but I think we have to be strategic about marketing to people who are like in primary care. And what are they saying? They’re like, gosh, I really love this. But it’s 30 patients. If I had more time with my patient, that’s the person.

Alex 38:18

Great. Next question.

Kim 38:19

Where do I find them though?

Eric 38:24

Thank you so much, Dr. Kerstein. That really resonates. I’m Greg Van Keith. I’m a palliative care physician of the generation who made mid career transition. So I had many years of work as a primary care provider before moving into palliative care. And so the continuity in the longitudinal work you’re talking to is second nature. From the background that I have, my question is, as I see my younger colleagues come in who went Straight from residency into fellowship. How do we take the concepts and principles of longitude, whether it be primary care or whatever sort of long term care focus and integrate that in the one year fellowship? Because I think it can be done. It may be less disease specific and may be more process specific. How do you develop the ethos of a longitudinal relationship as opposed to a consultant based short term relationship? Like much of our inpatient training is geared towards.

Alex 39:19

Anyone.

Kim 39:22

This is so cathartic for me. No, I think it’s the difference in how you train and trying to get at the what is the real root of the problem. So teaching people how to have the conversation that you have on the inpatient is going to be different than the conversation that you have on the outpatient. So the expectation that you’re going to start slow, the idea that you don’t have to have all the answers.

Karen 39:51

Really.

Kim 39:51

Doing a lot of self reflection and a lot of work, like if you’re tired and you’re frustrated, what are you really frustrated about? Can’t be the patient. You know, that’s something that the anxiety that you don’t have. The answer is really, really important. And I can’t tell you how much that resonates watching people. The idea that when you are on the inpatient side, you know what the answer is. The answer is, you know, we’re gonna make you comfortable. You’ve got the medicines down. You understand when somebody’s sitting in front of you problem that they saw 10 doctors, how are you now going to be the person that’s going to fix it? So we have to reprogram that. You know, you are not there to fix it, you are there to bear it and you are there to make it a little bit better.

Eric 40:41

I’m going to add one more editorial. It’s often like, because I’ve done education for a lot of times and like we see, like even in medicine, we see people complaining, why aren’t our residents choosing primary care? Instead of saying what structural things have we created that made it. Our residents are not choosing palliative care. What are the things that we are making it seem like that lifestyle is not something that they want. And oftentimes it’s the structure that we’ve created. It’s the fact that now they got to run back and forth between their wards. They still have 13 other things to do. They are caring for this longitudinal panel and also trying to, you know, care for people in the icu. Similar to how we think about outpatient palliative care. What structures have we in place that push people away from that, including like in this article, very little time doing outpatient palliative care. 4 weeks versus 24 for inpatient palliative care.

Alex 41:36

Last question quick. And then we got to move on to our last article.

Karen 41:39

Yeah. So I’m Jessica McFarlane. I made a mid career switch from inpatient palliative care to outpatient palliative care about a year ago. Hardest thing that I’ve done, but it’s actually been so fulfilling. And I wonder, Eric, to kind of add on to what you said, what is our responsibility as a profession to go to these training programs, family medicine, internal medicine, neurology. I’m a neurologist. And help make a case or help support them as they try to get better outpatient experiences. Because everyone is so geared towards subspecialty care. But to really help support them in focusing on more outpatient time, maybe bringing their trainees into our outpatient clinics so that they can see that, so they’re prepared for the future in these outpatient specialties. Outpatient heavy specialties.

Kim 42:30

I think we missed some great opportunity because two people said mid career and I think that’s a really misplaced because when you think about people who are starting to think about palliative care, but they’re mid career and we ask them to give up everything to do in one year. Fellowsh. So I think if we really lean into that, we can have primary care providers, people who’ve been practicing for a really long time, they don’t have to learn that part and we teach them our skills. So I think that’s one way to think about it and one way to lean in. Because when there’s something about being here a little bit and you learn some things makes this a little easier than when you’re coming out fresh where it can be. Where it can be jarring.

Alex 43:20

And we should note that this article is kind of physician centric. Right. It’s talking about physician specialty training and palliative care. And there are whole other conversations and other podcasts we can and should have about training for nurses, chaplains, social workers.

Karen 43:33

Absolutely.

Eric 43:35

So importantly, the structures that we create make the outcomes that we either desire or we don’t. And sometimes it creates some uncomfortable truths. Which goes to our next article. So, Karen, you actually didn’t choose this article, but it was an important article that came out. I’ll get to which one you chose. This is one by Iraq, A Strategic Path Forward for Hospice and Palliative Care, a white paper on Potential Future of the Field in which he Talked about embracing the uncomfortable truths of hospice and palliative care.

Like talking about the things that we may not want to talk about in the field, the things that may not be going very well in hospice and palliative care. And we’re going to have a different podcast with Ira. So I’m just going to quickly summarize the five key things that I remember from the article, which was a, that we should have absolutely no tolerance for abuse, fraud in our field. And then the four key strategic path forwards that he brought up was we want, we need to create a clinical programmatic standards, including minimum competencies, minimum staff ratios, what’s the minimum makeup of our palliative care teams, that we should have meaningful data available to everyone, including patients.

So if they’re being referred to a hospice, that they have idea of how to select hospices. Not just questions, but also seeing data, what works and what doesn’t, that we’re driving competition based on quality data. And then lastly, we’re embracing authentic brand of palliative care. And Ira was talked about the importance of well being. So that was Ira’s article. Really encourage everybody to read it and we’ll do a podcast with Ira. But Karen, this was not the one that you picked. You picked a response to Ira’s article, a strategic path forward for hospice and palliative care that must be focused on equity. Karen, why did you pick this arc?

Karen 45:51

I picked this article because I thought it would be a great opportunity to center health equity in the space. Because we’re experiencing, we’re living at a time which lots of words are now being erased and undone. And we’re all trying to figure out how do we continue to care for populations that have been historically marginalized and minoritized and without the language, if we can’t talk about what it is we’re doing, can we actually do it? And so when I read this article, you know, I agree with all the things that were said, like in terms of the path forward and making sure that we have these standards, et cetera.

But what was glaringly missing for me was health equity. So I phoned a friend, Dr. Kimberly Johnson, and I said, have you read the article? Have you read this article? And so shared it with a couple of folks. Marisset Hassan, who’s here, you know, we usually do these things in teams because it takes a lot of courage to respond to an article that’s written so well and so clearly states really important aspects of hospice and palliative care and what we need to be paying attention to. But Sometimes we have to position ourselves so we can add one more thing to that or remind people not to lose sight of populations that we’re hearing very loudly that we need not name, we need not identify, and possibly not care for, because I don’t know how we can continue to care for historically marginalized and minoritized populations if we can’t even say the words.

And I know that organizations are challenged to figure out, what do we do? Do we have to forego this program? I have colleagues who are saying I can’t continue my research. I’ve been told by my institution that I can’t do that research anymore. So I thought this was an opportunity for us to think about how do we add to the literature. And Ramona Rhodes is someone who, we all are health equity practitioners, and we felt that we had a duty to respond to this and to say, and we do say in here we agree. However, as we talk about uncomfortable truths, another uncomfortable truth is that we are collectively being told, given directives that we need to undo many of the services and programs that we know that we need, and we need to target populations that are underrepresented.

Representation matters for a host of reasons, not just the ones that I said earlier about literature. We read the articles, and it’s great research, it’s rigorous, but we look at the samples continuously. And that’s another article that we wrote about representation. We did a systematic review of thousands of articles. And what we found is consistently there was a minimization of race, ethnicity, and attending to factors that we know in palliative care and other aspects of medicine haven’t been well attended to. And so we talked about, should we write a response to this? And we agreed that we should write a response to this. And so we were very clear that we weren’t trying to critique what. Or that we weren’t opposed to what was said or the direction that is proposed.

But we really felt, and we do feel that it’s important that we center health equity. There are populations currently who are afraid to even come in to get care now, who are afraid to answer the questions that are essential to the care that we provide because they are afraid that they respond to the question they might be deported or someone, they might be a knock at their door after they leave their doctor’s office, and people are suffering. And so. So it’s important as often as we can to center health equity to talk about historically marginalized populations. And, you know, in a session yesterday, it talked about the fact that we all know that U.S. health care systems and settings were legally, racially segregated until 1965. That was very recent, and it was well into the 70s before many of those settings complied.

So I feel that every opportunity we have to remind people that, especially those of us who are caring for older adults, that’s been their lived experience. And so we were getting a little closer to being able to recognize that we needed equity and we needed to do things differently to ensure that people who had been historically denied can now get the care that they need. But we know that those populations are still afraid. We know that those are the populations that are most likely not to receive this amazing, incredible gold standard of care that we all provide. And so we felt that we were making progress towards that. And then something happened and all of that was being undone.

And then this article came out. So really, it was our goal to center health equity and to tell the community of practitioners that in each of these areas in which we’re identified, that we need to be mindful of the fact that there’s a risk to no longer talking about health equity, especially no longer doing health equity, because if we can’t talk about it, then we can’t do it either, or we can’t do it. Well, it was really to center health equity. And so our argument is that we must not have a pathway forward, and it can be strategic, but without centering equity in what we do, it’s a missed opportunity and will continue to perpetuate many of the challenges and problems that we’re seeing seeing currently.

Alex 51:35

You know, I suppose there might be some who say, wait, this article was about, like, you know, for profit invasion of hospice and private equity’s takeover and gobbling up hospices and all that poor care does every aspect of whatever, you know, intervention or policy change we consider have to involve equity equity.

Karen 51:56

Yes, yes, yes, yes. And actually, we say in this article also, if you look at historically marginalized people, those are the ones who are most likely to be harmed. I mean, everyone can be harmed. But if we look disproportionately at who’s more likely or overrepresented in those populations, it’s those same people who we consider or who we label as or who have experienced historical marginalization are the ones that are at the greatest risk, even for those for profit.

Alex 52:28

And this comes back to that opening plenary session where Sachin Jain was talking about the moral bankruptcy of leaders in palliative care. I think one of the guiding principles that we need to hold tightly to is that any policy change, any issue, any thought piece that we consider must have an equity lens to it. Right. This goes back to John Rawls and Norm Daniels. Just healthcare. We need to make sure that whatever policy we are doing is aimed at addressing equity, addressing disparities, addressing history of historical marginalization.

That’s a North Star that we can hold to as leaders in our field in whatever way we do, and we have the power to do that. And yes, there are trade offs, as Kim so eloquently said the other day, and that sometimes you have to maybe use different language and find a way toward that. But I’m reminded of the words of the great late, great John Lewis. Right. Who you mentioned. Like, this is not a struggle of today. This is a struggle of generations. Right. Take the longer view about this. Yes. Thank you for writing this.

Matt 53:38

Yeah, that’s what I was just going to say is like, thanks for the courage to do this because it really, it’s so, so, so important. And I think it’s a clear answer to your question of like, should this be a part of everything we do? And the answer is very clearly, yes. You know, in this time, it takes courage to stand up. And I’m just, I’m grateful to be here with you. And I think we all are. And so thank you from the bottom of my heart from like, amplifying and adding.

Alex 54:09

Can I ask one question before we.

Eric 54:10

Get to our question from the audience?

Alex 54:13

One quick question is. So one of the other things in Ira’s article he talks about is like, patient activation. Like, patient professional societies should urge patients to ask when they’re being referred to hospice, like, what’s the ownership structure of this hospice? How many nursing visits will I get these sort of questions, probing questions. If we can activate all people, the people will have so much more power to institute change. I just wonder if there are ways in which we could incorporate some questions around equity. And I don’t know what those questions are, and it’s probably a failure of imagination on my part. I don’t know if anybody has any ideas, but I think like, along the lines of like, prepare for your care activates patients. There’s probably a way there and it probably takes some creativity.

Eric 54:59

Any thoughts on questions like questions that.

Kim 55:03

We should ask patients.

Alex 55:04

Yeah. Patients to ask their providers, especially like.

Eric 55:07

Ira was talking about when selecting hospices.

Kim 55:09

You said it, you know, are you going to come? Are you going to come? Is there a nurse in my area? How long will it take to get there? Because, Karen, you’re absolutely right. And I think one of the things that is hard is that you had to write that after all of this, you had to write that. And we continue to have to write that. So it would be wonderful if we can get to a point in our profession where we don’t have to, where it’s, you know, we don’t have to add it on. And everybody’s like, yes, it should be there, but after all of this, it’s still an afterthought. And that. And that’s a little. And that’s a little rough.

Alex 55:56

Yeah. The allies stand up. Come on.

Eric 55:59

Well, we got some people standing up. I want to turn to our last.

Karen 56:03

I just want to add that Ira did respond to us and thanked us for writing this. And I just want to say that. And agreed with Asa. And so it’s like, I think we’re all in this together. And so we have to lean in where we have expertise and speak up and lend our voice. And so I just want to add that he was responsive and very positively and favorably responsive.

Alex 56:27

Thank you.

Eric 56:27

We’re going to turn to our guest hosts. Thanks very much. I’m Jennifer Ballantyne with the Coalition for Compassionate Care of California. And I just wanted to invite all of you to continue this conversation. We have an annual summit coming up on October 6th, and Ira will be keynote, noting that conference with a message from his paper followed by a panel discussion.

Matt 56:50

If you can’t come in person, there is a live stream opportunity.

Eric 56:54

So visit our website@ CoalitionCC.org there will be questions taken from the live stream audience at the panel discussion.

Matt 57:03

So we’d love to have you with us. Thank you for that.

Eric 57:07

I see Sonia.

Karen 57:09

Hi, friends, patients up there on the stage, Sonia Malhotra from Tulane. I think activation takes a lot of privilege and many of our patients don’t feel like they have the privilege to be able to ask things and request things. So I encourage us all to improve our skills around health equity so we can do that and not to forget populations that often do get forgotten. I’m from the great state of Louisiana, the second prison industrial complex, the largest one in the world. Not to forget our incarcerated patients and those who are now in detention and also women’s reproductive rights. As we see more women and their children who don’t have access to quality care and suffering that they’re going through.

Eric 57:53

It’S nice to have questions about which hospice to choose, but if you don’t have a hospice to choose, it’s kind of pointless.

Kim 58:00

Yeah.

Eric 58:01

Yeah. Last question. Hi, I’m Sherica Newman from the great state of Atlanta. Like Sonya thinks The great state is Louisiana, but the great state of Georgia. I like what Alex mentioned. And so I think self advocacy and teaching patients and families to self advocate is a big, big key to health equity. And so I’ve been promoting on my platforms that everyone needs to leave every.

Karen 58:27

Doctor’S appointment with their diagnosed treatment and follow up.

Eric 58:31

And it seems so simple to us because it makes sense to us. But the world at large doesn’t understand that, especially our marginalized communities, because a lot of them approach healthc very scared or very overwhelmed, especially if they have a serious illness. I was wondering what you guys thought about using self advocacy or us promoting self advocacies within our communities and with our organizations to leverage some of the health equity and make it better.

Kim 59:02

I know we’re close to time, but that is really important and not just asking. When I see patients in clinic, part of what I talk to them about is what should not happen and what is not. Right? Yeah. And, you know, like, if you call and you don’t get a response, you know, that’s probably not the way it should go. When I make a referral to hospice, I’m very clear that if it does not go the way it should go, then you need to call me and then it will go the way it should go. So us as palliative care providers, when we give our patients out to the world, we need to arm them with the tools to understand what is true and what is and what is not true.

Eric 59:48

That was wonderful. Our time is up. I want to thank all three of our guests for coming up here, picking these articles, joining us for the GeriPal live session.

Eric 1:00:02

We will have this on GeriPal in a couple weeks. So you can also, if you want to re listen to it, you can listen to it there. And a big shout out to all of our guest hosts for joining us on this GeriPal podcast. Very much appreciate it. But before we end, we always end with a little bit of a song. Alex, you want to take us out?

Alex 1:00:20

All right, CAPC. You got to commit to this one. Okay. I’m going to change things up a little bit. Michelle’s probably going to kill me for doing this, but this is going to bring it back to the beginning. This song has some like, maybe palliative carriage lyrics. I want your disease I want your love this song is for Diane Meyer. This is for the Lady Gaga of palliative care. This is bad romance. Please sing along with me.

Alex 1:01:03

(singing)

Eric 1:02:16

Thank you everyone. Thank you, CAPC

This episode is not CME eligible.